E-Health: Current Situation And Examples Of Implemented & Beneficial E-Health Applications (Studies in Health Technology and Informatics) (Studies in Health Technology and Informatics)

e-HEALTH Studies in Health Technology and Informatics This book series was started in 1990 to promote research conduct...

Author: I. Iakovidis; P. Wilson and J.C. Healy; Editors

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e-HEALTH

Studies in Health Technology and Informatics This book series was started in 1990 to promote research conducted under the auspices of the EC programmes Advanced Informatics in Medicine (AIM) and Biomedical and Health Research (BHR), bioengineering branch. A driving aspect of international health informatics is that telecommunication technology, rehabilitative technology, intelligent home technology and many other components are moving together and form one integrated world of information and communication media. The complete series has been accepted in Medline. In the future, the SHTI series will be available online. Series Editors: Dr. J.P. Christensen, Prof. G. de Moor, Prof. A. Hasman, Prof. L. Hunter, Dr. I. Iakovidis, Dr. Z. Kolitsi, Dr. Olivier Le Dour, Dr. Andreas Lymberis, Dr. Peter Niederer, Prof. A. Pedotti, Prof. O. Rienhoff, Prof. F.H. Roger-France, Dr. N. Rossing, Prof. N. Saranummi, Dr. E.R. Siegel and Dr. Petra Wilson

Volume 100 Recently published in this series Vol. 99. Vol. 98.

Vol. 97. Vol. 96. Vol. 95. Vol. 94. Vol. 93. Vol. 92. Vol. 91. Vol. 90. Vol. 89. Vol. 88. Vol. 87.

G. Riva, C. Botella, P. Légeron and G. Optale (Eds.), Cybertherapy – Internet and Virtual Reality as Assessment and Rehabilitation Tools for Clinical Psychology and Neuroscience J.D. Westwood, R.S. Haluck, H.M. Hoffman, G.T. Mogel, R. Phillips and R.A. Robb (Eds.), Medicine Meets Virtual Reality 12 – Building a Better You: The Next Tools for Medical Education, Diagnosis, and Care M. Nerlich and U. Schaechinger (Eds.), Integration of Health Telematics into Medical Practice B. Blobel and P. Pharow (Eds.), Advanced Health Telematics and Telemedicine – The Magdeburg Expert Summit Textbook R. Baud, M. Fieschi, P. Le Beux and P. Ruch (Eds.), The New Navigators: from Professionals to Patients – Proceedings of MIE2003 J.D. Westwood, H.M. Hoffman, G.T. Mogel, R. Phillips, R.A. Robb and D. Stredney (Eds.), Medicine Meets Virtual Reality 11 – NextMed: Health Horizon F.H. Roger France, A. Hasman, E. De Clercq and G. De Moor (Eds.), E-Health in Belgium and in the Netherlands S. Krishna, E.A. Balas and S.A. Boren (Eds.), Information Technology Business Models for Quality Health Care: An EU/US Dialogue Th.B. Grivas (Ed.), Research into Spinal Deformities 4 G. Surján, R. Engelbrecht and P. McNair (Eds.), Health Data in the Information Society B. Blobel, Analysis, Design and Implementation for Secure and Interoperable Distributed Health Information Systems A. Tanguy and B. Peuchot (Eds.), Research into Spinal Deformities 3 F. Mennerat (Ed.), Electronic Health Records and Communication for Better Health Care

ISSN 0926-9630

E-Health Current Situation and Examples of Implemented and Beneficial E-Health Applications

Edited by

Ilias Iakovidis European Commission, Directorate-General Information Society

Petra Wilson European Health Management Association

and

Jean Claude Healy European Commission, Directorate-General Information Society

Amsterdam • Berlin • Oxford • Tokyo • Washington, DC

© 2004, The authors mentioned in the table of contents All rights reserved. No part of this book may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, without prior written permission from the publisher. ISBN 1 58603 448 0 Library of Congress Control Number: 2004109513

Publisher IOS Press Nieuwe Hemweg 6B 1013 BG Amsterdam The Netherlands fax: +31 20 620 3419 e-mail: [email protected] Distributor in the UK and Ireland IOS Press/Lavis Marketing 73 Lime Walk Headington Oxford OX3 7AD England fax: +44 1865 750079

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LEGAL NOTICE The publisher is not responsible for the use which might be made of the following information. PRINTED IN THE NETHERLANDS

v

Foreword F. Colasanti, Director General European Commission, Directorate-General Information Society During the last 20 years, ICTs (Information and Communication Technologies), have been introduced into manufacturing, commerce and business systems, but they are not yet fully integrated into the services industry and especially in the services of public interest such as the health, social care and public administrations. The proper use of ICTs for data collection, processing and transfer, is the corner stone of productivity gain and re-engineering of all sectors that are information intensive. Health is an information intensive sector. The potential beneﬁt of a fully integrated ICTs based re-organisation is signiﬁcant, since it will enable not only more efﬁciency in information processing but also impact on access and quality of care. The European Union has, over the past 15 years, allocated more than 450 Million Euro through its various Research Framework Programmes, for supporting research in areas of medical informatics, health telematics and eHealth. Now, at the beginning of the twenty-ﬁrst century, this research is bearing fruit and the European market is seeing a growth in eHealth products and services. The eEurope initiative has facilitated two high level eHealth conferences and exhibitions. The eHealth Ministerial Conference in 2003, organised by the European Commission under the Greek Presidency, and the eHealth conference 2004 organised by the Irish presidency in collaboration with the European Commission marked milestones of achievement in eHealth in Europe. The two conferences provided an opportunity to demonstrate a wide range of eHealth solutions in daily use in Europe and to show clear examples of beneﬁts in access and quality of care as well as clear costs beneﬁts. While eHealth is still a growing research and development ﬁeld, there are many mature results that can be used immediately as key instruments by healthcare authorities, professionals, patients and citizens. The European Union has now demonstrated a clear commitment to beneﬁcial deployment of eHealth systems and services at all levels. The Ministerial Declaration adopted on the occasion of the eHealth 2003 conference has in turn led to the elaboration and adoption by the European Commission of a Communication on eHealth: Making healthcare better for European citizens: An action plan for a European e-Health Area COM (2004) 356 ﬁnal, which includes an Action Plan aimed at accelerating the beneﬁcial uptake of eHealth solutions. It is my pleasure to recommend to you the exciting examples and best practices of eHealth solutions contained in this book, and to recommend that we all continue to share our European experiences in order to support healthcare systems that respond to all the demands and challenges facing the health sector in the twenty-ﬁrst century.

vi

E-Health I. Iakovidis, P. Wilson and J.C. Healy (Eds.) IOS Press, 2004

Introduction: How We Got Here Ilias IAKOVIDIS European Commission, DG Information Society Petra WILSON European Health Management Association Jean Claude HEALY European Commission, DG Information Society

The Pre-history On the road to eHealth we have passed by and encompassed a wide range of technological developments and approaches. The term eHealth, although now quite current in Europe and indeed throughout the world, is still rather new, making its ﬁrst appearances in the scientiﬁc literature around 1999. Its predecessors, however, date back to the 1960s when the concepts of medical informatics and bio-medical computing began to occupy the minds of physicians, computer scientists, mathematicians and others. The 1960s and 1970s saw the development of computing technology for mathematical modelling applied to the healthcare setting and highly specialised tailor made programmes for complex medical decision making support tools. The use of information technology as we know it today, in its plug-and-play, off-theshelf guise started to develop in the late 1970s as health managers, and in particular records clerks, began to understand the potential of computerisation of the huge amounts of records generated in health services delivery. Computer technology (even at its immense 1970s size) was considered an ideal way of keeping track of patients’ notes, bed occupation and planning in a busy hospital. There is not one agreed deﬁnition of eHealth. Here we would like to point out that from the European Commission point of view the term eHealth includes the established ﬁelds of medical or health informatics, telemedicine and health telematics. Also, it is the personal believe of the authors that medical informatics, and consequently eHealth, is not only about computer applications but also about cognitive, information processing and communication tasks of medical practice, education and research. For example, the work done on classiﬁcations of diseases and medical procedures or evidence gathering and medical knowledge representation and dissemination has been done long before computers came around. Silber, in her introductory piece that follows called The Case for eHealth, traces some of these early developments and explores also the deﬁnitions of eHealth, noting that “eHealth is the means to deliver responsive healthcare tailored to the needs of the citizen.” Silber provides an in-depth survey of some key applications from the whole range of

Introduction

vii

eHealth tools, noting that the Electronic Health Record (EHR) is a fundamental building block of all of these applications. One might say in fact that the EHR has become the holy grail of eHealth – the quest for the fully interoperable, secure, and robust Electronic Health Record which will allow the secure sharing of medical records between care providers across disciplines, institutions and geographic boundaries. The centrality of the EHR is further explored by Thomas Jones who notes, quite simply, that the hazards of not having an electronic medical record have become too apparent to ignore.

Coming of Age The 1990s saw the beginnings of the information technology revolution which, to continue with our image of a road well travelled, took us from the back roads to the super highway. With the development of internet technology eHealth became a reality not only for healthcare practitioners but also for European citizens. It was at this point that the European Union started to invest its Community Research and Technological Development (RTD) budget in ‘healthcare computing’. The ﬁrst RTD actions in 1989 concentrated on developing computer technology for medical practice through the Advance Informatics in Medicine Programme1. Soon the focus sharpened and the next full programme, which ran from 1991–1994, concentrated its efforts on the development of networks and tools mainly focusing on needs of healthcare professionals. The focus of the Telematics Applications for Health Programme (1994–1998) was on continuity of care, with emphasis on the user’s needs. During the 5th Framework Programme (1998–2002) the vision of the eHealth programme was to create ambient intelligence for health professionals, patients and citizens. More emphasis than ever before was put on the provision of information and personal health systems for monitoring health status to assist people to “stay healthy”. For some years these programmes formed a unique research and development programme in the world. With their focused funding on health telematics research and development, they created a strong European community in the ﬁeld, demonstrated the beneﬁts of many eHealth solutions and supported EU industry in its drive to become internationally competitive. Many of these research results have now been tested and put actively into practice. These programmes – together with the national eHealth research and deployment activities – have put Europe in a leading position in the use of eHealth solutions such as the integration of the electronic health records in primary care, the deployment of regional health information networks, the use of telemedicine applications in a variety of medical specialisations and use of health (smart) cards by citizens and healthcare professionals. These developments have stimulated a new “eHealth industry” that has the potential to be the third largest industry in the health sector (following the pharmaceutical and medical devices industries) with a turnover of €11 billion. By 2010 it could account for 5% of the total health budget. It has become clear that, at EU level, the Research and Development programmes are not enough to stimulate beneﬁcial uptake of the applications invented. It is a long road from research to implementation, and the role of this book is to contribute to progress 1 Iakovidis I., Health Telematics: 10 years of European Research and Development, Eurohealth, Vol 4, No 1, pg. 11–13, Winter 97/98

viii

Introduction

along this road. Since many years the European Commission research programme on eHealth is under pressure from Member States to play a greater role in coordinating efforts regarding eHealth deployment and facilitating dissemination of best practices. With the opportunity of the eEurope initiative, the eHealth unit of the Directorate General Information Society, has been able to undertake some signiﬁcant actions such as organisation of high level conferences2 and the coordination and development of the European Commission’s Communication on eHealth and its associated Action plan3 .

Where are we now? We have now reached the point where eHealth tools have a real maturity and a real place in the health market. As the penetration of personal computers and use of the Internet in Europe increases, a critical mass of users – general practitioners, patients and citizens – is being created for the provision of online health care services. Eurobarometer surveys have shown a steady rise in the rate of Internet connections by general medical practitioners4. The 2002 Eurobarometer survey5 showed that an average of 78% of EU medical general practitioners were online, with – at the highest levels – 98% in Sweden and 97% in the United Kingdom. The use of networks, including the Internet, to deliver patient care is also growing. On average in the European Union of 15 Member States, 48% of medical practitioners use electronic health care records, and 46% use the Internet to transmit patient data to other care providers for the purposes of continuity of care. But a fully interactive use of the Internet to deliver care to patients through the provision, for example, of e-mail consultation (12%) or to enable patients to book appointments online (2%) appears to be only in its early stages. Systems such as these are giving patients more information about their condition and choices, so that they can take more responsibility for healthcare decisions. The March 2003 Eurobarometer survey6 on health information sources shows that 23% of Europeans use Internet for health information and that 41% of the European population considers that the Internet is a good source of information on health. It was decided in 2002 that the eEurope Awards should celebrate the European achievements in this ﬁeld by awarding prizes for best practice and best examples of use of eHealth tools in European healthcare delivery. In order to obtain a wide range of good practice the European Commission granted a contract to the European Institute for Public Administration to organise public calls for proposals for best practices in eHealth on the occasion of high level eHealth 2003 and eHealth 2004 conferences. The calls were open to representatives of real life eHealth installations. Each proposal had to be submitted by corresponding healthcare user organisation. The call for eHealth 2003 Awards resulted in some 180 applications of which 43 were selected for exhibition, while the call of 2004, 2 eHealth Ministerial Conferences and exhibitions

2003: http://europa.eu.int/information_society/eeurope/ehealth/conference/2003/index_en.htm 2004: http://www.ehealthconference2004.ie/ 3 Communication on eHealth - making healthcare better for European citizens: An action plan for a European eHealth Area http://www.europa.eu.int/information_society/qualif/health/index_en.htm 4 Eurobarometer 2001-2003. 5 Eurobarometer, 2002 http://europa.eu.int/comm/public_opinion/. 6 Eurobarometer 58.0, March 2003.

Introduction

ix

which focused on eHealth tools for citizens, resulted in over 100 applications with 32 selected exhibitors7. The exhibitions were organised into broad themes. In this document we highlight mainly the best practices as exhibited in the eHealth 2003 Ministerial Conference and Exhibition. The sections of this publication reﬂect the themes into which the exhibits were classiﬁed.

Section 1. National and Regional Health Information Networks The call for proposals elicited a wide selection of best practices in national and regional networks of which twelve were invited to exhibit. Section 1 includes the descriptions analyses of seven of the applications. Reports of networks in Sweden (Sjunet – The National IT Infrastructure for Healthcare in Sweden); Denmark (MedCom: Danish Health Care Data Network), Norway (Northern Norwegian Health Net) and Finland (North Karelia Regional Chain of Care: Finnish Experiences and UUMA – Regional eHealth services in the Hospital District of Helsinki and Uusimaa) show the high investment that the Nordic countries have made in this ﬁeld. Building on the early advances in information technology and the needs presented by a dispersed and rural population, the Nordic countries are currently leaders in the use of regional health networks. A particular example may be found in Sweden’s Sjunet which boasts the connection of almost all Swedish hospitals and primary care centres as well as some national authorities. Sjunet is a well developed network which allows for the secure communication and distribution of patient data (including medical images) and medical applications through a specially designed an maintained network which overcomes the insecurities of the internet. Current uses of the network include electronic prescribing and remote radiology. Regional and National networks are not, however, a solely Nordic phenomenon. The description of the Spanish network (Building the regional eHealth Network: The Andalusian experience) and Greek system (HYGEIAnet: The Integrated Regional Health Information Network of Crete) show the development and use of integrated electronic health records to support the needs of both patient and clinician wherever he or she may be. In the case of HYGEIAnet the system had been extended to support the homecare of patients to allow the remote monitoring of a patient in his or her own home by a medical expert.

Section 2. eHealth Systems and Services for Health professionals The early adopters of eHealth tools were the professionals who believed that through them they could improve their service provision. The use of such tools is not, however, without its problems. Äarimaa, in his introductory chapter on the use of eHealth tools by health care professionals highlights in particular the need to establish standards and an agreed common language to ensure an interoperability of systems. He goes on to look also at non-technical needs, including the legal and organizational issues related to the supervision of eHealth services provision and the legal liability of those who practice eHealth. 7 www.e-europeawards.org

x

Introduction

In describing the Oxford Clinical Intranet, Kay and colleagues show in a very practical way the gains which may be made in using intranet and internet technology to share patient information. The chapter addresses many of the needs outlined by Äarimaa, in particular the security and access control elements which are so vital when real patients’ data are shared across internet gateways. The system demonstrates the efﬁciency and effectiveness gains generated by eHealth tools using hyperlinking of patient records, local knowledge bases and remote knowledge bases. On a more technical level Cinquin and colleagues (SURGETICA at Grenoble: From Computer Assisted Medical Interventions to Quality Inspired Surgery) explore the tremendous opportunity eHealth tools provide for the reduction of invasive surgery - its potential to realise minimally invasive surgery with all its associated beneﬁts for the patient. They describe, among other applications, the possibility of using a 6-D tracked ultrasound probe to locate the position of a pericardial effusion in order to allow surgeons to repair a pericardial puncture with minimum disturbance to the patient whilst maintaining excellent visual guidance of the needle. The public health potential of eHealth applications is explored by Balas and colleagues who examine the extent to which intelligent eHealth networks were a key tool in responding to the challenges posed by the Severe Acute Respiratory Syndrome (SARS)8 Balas notes the potential of eHealth tools in the coordination of prevention and chronic care initiatives.

Section 3. Empowering Patients and Citizens in Management of Health and Well Being It is important to remember that eHealth tools are not just about technical solutions for doctors or administrative tools for managers. One of the real growth areas of eHealth is, in fact, tools for use by the citizen in the management of his or her own health. The way in which eHealth tools are used by the citizen may be grouped into three broad types: tools for accessing information and advice, tools for assisting citizens in dealing with health services administration (appointment booking, prescriptions etc) and devices for facilitating homecare of patients through remote monitoring and assistance. Section 3 on Empowering Patients and Citizens includes a presentation of the development of one of Europe’s ﬁrst national internet based health advice and information services. While many individual doctors and patient groups had already started to provide such services NHS Direct Online has, since its launch in 1998, become the largest provider in the world of direct access healthcare using modern communication technologies. NHS Direct provides 24x7 access to clinical advice and information, providing self care guidance or referral to appropriate health care services. It comprises information pages on the internet as well as a nurse-led service which handles around 6 million calls a year, projected to rise to 16 million a year by 2006. However, health information on the internet is not provided solely by such well funded public bodies as the UK’s National Health Service, a huge amount of health information on the internet comes from small organisations and individuals as well as huge multinational pharmaceuticals companies. Health information on the internet ranges from per8 SARS – a respiratory disease of unknown etiology that apparently originated in mainland China in 2003; characterized by fever and coughing or difﬁculty breathing or hypoxia which can be fatal.

Introduction

xi

sonal accounts of illnesses and patient discussion groups to peer reviewed journal articles and clinical decision support tools. It has been noted that it is difﬁcult if not impossible to deﬁne a single quality standard for such a disparate collection of resources furthermore, different users may have different criteria for quality. Patients and caregivers may want simple explanations and reassurance, whereas healthcare professionals may want data from clinical trials.9 Celia Boyer of Health on the Net in her chapter on Realising the Potential of the Internet for Health and Medical Information introduces readers to the concept of using quality criteria and codes of good conduct for helping internet users sort good health related information from bad, and the potential of using automated systems for information retrieval and dedicated health searches engines. Exploring the potential of eHealth tools to assist citizen’s in their administrative interactions with health service providers, Wagner and colleagues describe a booking system in operation in the South East London area which allows a GP to make an appointment directly with a consultant without a series of referral letters. The system thereby greatly shortens the administrative burden and allows the GP to consult directly with the patient about appropriate dates and times. The Slovenian National Health Insurance Card System offers another example of enhanced citizen empowerment in the healthcare setting through eHealth applications. In this case the tools facilitates sharing of medical record and administrative tools combining both compulsory and additional voluntary insurance schemes in one card, while the Swedish Sustains example shows how a patient can be an active partner in her healthcare with the use of an internet based medical record. The ﬁnal three chapters of the section on Empowering Patients and Citizens demonstrate the extent to which eHealth tools can already be used to support patients in their own homes. Papazissis provides an introduction to the concept of homecare, noting that patients recover quickest when within their own space and that therefore every effort should be made to exploit the possibilities eHealth offer to allow patients to return to that setting as long as possible. The Boario Home Care Project provides a very well developed example of the types of care which can be provided at a distance to cardiac patients in order to allow them to stay in their homes whilst receiving ECG monitoring via telephone lines, as well as handheld devices which patients apply when they feel palpitations. While DITIS case study from Cyprus shows how the use of GSM and GPRS mobile telephony technology can be used to support chronically ill cancer patients in their own homes.

Section 4. Industrial and Standardisation Issues eHealth industry is one of the stakeholders on which beneﬁcial deployment heavily depends. One of the necessary conditions of successful deployment is commitment and investment in eHealth by the industry. As mentioned before, the potential for the market is there since it is expected that the health sector may spend 5% of its budget (currently close to 3 trillion Euro worldwide) on eHealth systems and services . The industry needs to see not only ﬁnancial prospects so they can invest in the development of the eHealth solutions, but also clear rules of the market including regulations and stan9 For an introductory overview, see: Gretchen P Purcell, Petra Wilson, and Tony Delamothe, The quality of health information on the internet BMJ, Mar 2002; 324: 557 - 558

xii

Introduction

dards. The overview of the standardisation efforts in EU is given in a paper by George de Moor. A discussion of the potential beneﬁts of eHealth industry, emphasising in particular the increased quality control and reduction of errors (the contingent costs of errors), is provided by Erich Reinhardt writing on the Economic and User Perspective. Industrial perspectives and speciﬁc experiences are also brieﬂy discussed in a paper by Stan Smits. The eHealth 2003 Conference and Exhibition sought to achieve two main objectives: to show-case European best practice in eHealth and to demonstrate that eHealth can be cost effective, can effectively contribute to improving access to care and can raise the quality of care that patients receive. In order to achieve the latter each applicant was asked to present evidence on the three points and to seek to quantify any cost beneﬁts that were achieved through the use of the eHealth tool or application. The study of ACCA (Association of Chartered and Certiﬁed Accountants) and MEDCOM – The Danish health care data network shows concrete example and ﬁgures regarding savings achieved in Denmark by using the e-referral system. The catalogue of the Exhibition demonstrates a wide range of assessments of beneﬁts and shows that most systems, whilst demanding investment, will yield real beneﬁts. If the true beneﬁts of eHealth, as demonstrated in the chapters of these proceedings are to be realised the answers lie not only in continued technological developments and sound managerial policies of implementation but also in a modernisation of the legal and normative standards to facilitate interoperability of applications at local, regional national and European levels. The ﬁnal chapter “The Road Ahead” is therefore given neither to an economic analysis nor to a technological exploration, but instead to an evaluation of the challenges faced by standardisation bodies and the importance of enhancing the collaboration between such bodies and the industries which develop the applications. It explains the rationale behind the new European Commission Communication3 on eHealth and the choice of topics in the Action plan that aim at awareness of beneﬁts and the acceleration of beneﬁcial deployment of eHealth systems and services.

xiii

Acknowledgments We would like to express our appreciation to Bénédicte Vasseur, who gave many valuable hours to the production of this collection.

xiv

Contents Foreword F. Colasanti

v

Introduction: How We Got Here I. Iakovidis, P. Wilson and J.C. Healy

vi

Acknowledgments

xiii

Setting the Scene The Case for eHealth D. Silber

3

National Infrastructure for eHealth: Considerations for Decision Support T.M. Jones

28

Ministerial Declaration

35

1. National and Regional Health Information Networks Sjunet – The National IT Infrastructure for Healthcare in Sweden G. Malmqvist, K.G. Nerander and M. Larson

41

Building the Regional eHealth Network. The Andalusian Experience F. Vallejo Serrano

50

MedCom: Danish Health Care Network H. Bjerregaard Jensen and C. Duedal Pedersen

59

HYGEIAnet: the Integrated Regional Health Information Network of Crete S. Orphanoudakis

66

Northern Norwegian Health Net L.K. Johannessen, T.S. Bergmo and E. Appelbom

79

North Karelia Regional Chain of Care: Finnish Experiences P. Itkonen

94

UUMA Regional eHealth Services in the Hospital District of Helsinki and Uusimaa (HUS) K. Harno

101

xv

2. eHealth Systems and Services for Health Professionals Telemedicine – Contribution of ICT to Health M. Äärimaa

111

SURGETICA at Grenoble: From Computer Assisted Medical Interventions to Quality Inspired Surgery P. Cinquin, J. Troccaz, G. Champleboux and S. Lavallee

117

The Oxford Clinical Intranet: Providing Clinicians with Access to Patient Records and Multiple Knowledge Bases with Internet Technology J.D.S. Kay, D. Nurse, Ch. Bountis and K. Paddon

130

The Contribution of ICT to Health: The Andalusian Health Network J.A. Cobena Fernandez

139

From SARS to Systems: Developing Advanced Knowledge Management for Public Health E.A. Balas and S. Krishna

149

3. Empowering Patients and Citizens in Management of Health and Well Being Realizing the Potential of the Internet for Health and Medical Information C. Boyer

159

NHS Direct Online: A Multi-Channel eHealth Service B. Gann

164

Area Wide Electronic Booking: A Revolution in the Management of Health and Well Being R. Wagner, S. Miller and A. O’Shaughnessy

169

Slovene National Insurance Card System: Connecting Patient and Health Care M. Suselj

174

Sustains - Direct Access for the Patient to the Medical Record over the Internet B. Eklund and I. Joustra-Enquist

182

Advanced Technology Permits the Provision of Advanced Hospital Care in the Patients’ Homes E. Papazissis

190

Boario Home Care Project S. Scalvini, M. Volterrani, A. Giordano and F. Glisenti

200

User Perspective of DITIS: Virtual Collaborative Teams for Home-Healthcare B. Pitsillides, A. Pitsillides, G. Samaras, P. Andreou, D. Georgiadis, E. Christodoulou and N. Panteli

205

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4. Industrial and Standardisation Issues eHealth 2003: The Economic and User Perspective E.R. Reinhardt

219

Introduction to Industrial Perspectives: eHealth Systems, Past Experiences and Future Prospects S. Smits

230

e-Health Standardization in Europe: Lessons Learned G.J.E. De Moor, B. Claerhout, G. Van Maele and D. Dupont

233

The Cost Beneﬁt of Electronic Patient Referrals in Denmark: Summary Report S. Cannaby, D. Westcott, C.D. Pedersen, H. Voss and Ch.E. Wanscher

238

The Road Ahead I. Iakovidis, P. Wilson and J.C. Healy

246

Author Index

250

Setting the Scene

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E-Health I. Iakovidis, P. Wilson and J.C. Healy (Eds.) IOS Press, 2004

3

The Case for eHealth Denise SILBER Basil Strategies

1. Introduction The Case for eHealth presents an overview of existing eHealth results, based on publications and data, found on the PUBMED website, and in the records of the Directorate General Information Society eHealth unit. The EC has been supporting health informatics and telematics for nearly 20 years. This work conﬁrms that: • eHealth is the single-most important revolution in healthcare since the advent of modern medicines, vaccines, or even public health measures like sanitation and clean water. • Numerous eHealth implementations exist in Europe. • European expertise can satisfy the increasing demand for more and better healthcare services worldwide. • Although new technologies are widely used by European healthcare professionals and consumers, information about the value of eHealth in improving the quality of care is little known beyond eHealth circles. • It is urgent that a more informed dialogue between policymakers, healthcare professionals, and citizens begin.

2. What is eHealth? Why is it important? For some people, the term “eHealth” still conjures up a reference to the dotcom bubble and self-help medicine. eHealth as a ﬁeld is much broader, older, and serious. The ﬁrst computer applications for health and medicine were developed in the 1960s, but the results were reserved to highly-specialized publications, generally read by other. . .informaticists. In fact, eHealth describes the application of information and communications technologies (ICT) across the whole range of functions that affect health. It is the means to deliver responsive healthcare tailored to the needs of the citizen. eHealth is an end-to-end process, from birth registries to “cause-of-death” registries, from prevention and screening to follow-up, from emergency intervention to homecare, whatever the cultural or national context.

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D. Silber / The Case for eHealth

• The patient uses eHealth when s/he seeks information online, uses self-management tools, participates in electronic communities, requests a second opinion. • Primary Care includes the use of ICT by the Primary Health Care Team (PHCT) for patient management, medical records and electronic prescribing. Healthcare professionals can also call upon eHealth for their Continuing Medical Education. • Home Care includes care services which are delivered by home care professionals via telecommunications to a patient in the home • Hospitals may call upon ICT for scheduling logistics, patient administration, laboratory information, radiology, pharmacy, nursing, electronic messaging between the hospital and other healthcare actors for communication of clinical and administrative data, and telemedicine and second opinions, in any specialty. The Electronic Health Record (EHR) is a fundamental building block of all of these applications. The EHR allows the sharing of medical records between care providers across disciplines, institutions and geographic boundaries. Entire areas of “traditional” healthcare depend on informatics. Hospital laboratories are heavily computerized with many analyses, especially in biochemistry and hematology, being fully automated. Modern imaging techniques depend on informatics. Prescription of medications without computer assistance is source of signiﬁcant error and excess cost. Computer-aided diagnosis, which began more than 40 years ago, is now recognized as indispensable in rare disease and in day-to-day quality of care. Advances in telecommunication and miniaturization technologies support both professional-to-professional high-bandwidth telemedicine operations, and low bandwidth personal applications, enabling the individual to take greater responsibility in self health-management. New markets have opened in personal sensor technology for integration into ﬁxed and mobile consumer electronic products; communications infrastructure for disease prevention and health maintenance; centralized diagnostic services; evidence-based medicine and drug databases. According to Marion Ball et al, in Health Informatics: Managing Information to Deliver Value” [1] “we are beginning to gather proof that informatics can deliver value and improve health” in disease management, teleHealth, patient safety, and decision support. The authors cite: • A diabetes program whose enrollees remained unhospitalized over a four year period with annual net savings of $510,133 • A congestive heart failure program involving telemonitoring and patient education which reduced the 30-day readmission rate to zero and cut the 90-day readmission rate by 83% • A 4-month clinical trial of 200 patients in intensive care units, in which the addition of telemedicine coverage to normal stafﬁng reduced patient mortality by 60%, complications by 40%, and costs by 30%. Ball et al cite the groundbreaking Institute of Medicine’s (IOM) publication “To Err is Human: Building a Safer Health System”. This report was the ﬁrst to develop awareness of the “staggering statistics on medical error.” 90,000 deaths, according to the IOM, are due each year to preventable medical errors in the US. The report indicates that decision support systems can cut adverse events by 55%, and that the prevention of adverse drug events saves over $4000 per event. To err is human concludes that “a computerized sys-

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tem costing $1 to 2 million could pay for itself in three to ﬁve years, while preventing injury to hundreds of patients.” Unfortunately, no eHealth assessment methodology is universally accepted. Experts criticize the scope of research, the choice of criteria, basic study methodology. We do not have authenticated, comparable data regarding the results of eHealth implementations. We know more about the barriers to adoption of eHealth than the keys to its widespread diffusion. We hear that consumers surf the net and ﬁnd dangerous information, that time spent “behind a computer screen” is patient time lost for the professional, that no electronic system can protect the security of personal data, and that technology is expensive and ineffective. The barriers are cultural, economic, political and informational, ie, largely human resistance to change. Yet, the quality management of information is indispensable to the quality of healthcare. No amount of compassion will save a patient whose prescription is wrong, whose condition is undiagnosed, who does not have regular access to care. eHealth cannot cure healthcare of all of its current ills, but it can signiﬁcantly contribute to improvement, if the introduction of eHealth accompanies an understanding of the underlying healthcare processes.

3. Which European eHealth initiatives are “state of the art” What is a quality eHealth implementation? There is unfortunately an evaluation paradox. Evaluation tends to be done during a trial or pilot period. The more large-scale an implementation, the more costly it is to measure results or to include a control group. The system simply “is”. 33 European implementations nonetheless deserved inclusion in this publication. We artiﬁcially divided the examples into categories based on the “driver” of the operation: the consumer, the individual professionals, a region or a nation, in order to facilitate the analysis.

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Consumer a) Rare Diseases Rare diseases are very patient-centric diseases and highly compatible to the use of ICT or eHealth. Given the number of such diseases, they collectively represent millions of Europeans. OrphaNet OrphaNet is a European multi-lingual portal, devoted to orphan or rare disease, and supported by the French national health research institute, INSERM and funds from the EC. OrphaNet’s online encyclopedia offers information on over one thousand of the three thousand rare diseases, including data on biology laboratories, expert consultations, patient associations. According to Ségolène Aymé, French geneticist and founder of OrphaNet “Only 100 rare diseases are taught in medical schools. Rare disease patients have, for many years, worked directly with researchers, generally knowing more about their particular disease than the average health professional. Any solution that can shorten the time necessary to diagnose a case, enter a patient in a trial, or identify treatment, signiﬁcantly diminishes costs to the health system. ICT has the capacity to facilitate the matching of the right patient to the right professional, to extend health networks to a greater number of centers and to facilitate access to the results. Information technology was ﬁrst applied to rare diseases over 30 years ago, through diagnostic decision software. Two diagnostic decision systems are available today free of charge, OrphaNet and the London Dysmorphology Database.” b) General portals Sundhed.DK Sundhed.DK, meaning “health,” is the name of a non-proﬁt Danish health portal created by the Danish Pharmaceutical Association. The Association’s objective is to create an alternative to the purchase of prescription drugs online through epharmacies. The website allows patients to use the Internet to renew prescriptions at a physical pharmacy and to book doctors’ appointments. These services are also available in Denmark through many physicians’ practice homepages. Sundhed.DK does not run ads or accept manufacturer sponsorships. According to industry estimates, Sundhed.DK captured 40% of Denmark’s 125 million hits in healthcare use of the Internet in 2002. Its typical consumer user is a female with responsibility for healthcare decisions in her family. The portal contains more than 3,000 articles. 40 medical editors answered around 1,000 questions per month in 2003. [5]. NHS and NHS Direct In the UK, the NHS is the abbreviation for the National Health Service as a whole. The NHS Information Authority led program, NHS Direct Online, and NHS Direct work as a triumvirate. The ﬁrst two are websites, (NHS.UK and NHS Direct Online), and NHS Direct is a call center. These three resources work together to facilitate consumer access to proper information and care. The NHS Direct Online website provides health information online and access to a 24-hour nurse helpline. These services were initiated in 1999. Six million people have

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accessed NHS Direct website in approximately two years. There were 500,000 visitors in January 2003. NHS UK established its data-driven website in July, 2000. The site gives information on over 70,000 physical NHS sites, providing health services to the public. This information is used by NHS Direct call centers when dealing with consumer enquiries. Public information kiosks were also introduced in the year 2000 by NHS Direct. 200 touch screen, printer-equipped, wheelchair-accessible kiosks were placed in high trafﬁc locations. Vardguiden Stockholm County of 1.8 million inhabitants, deploys a health information portal, called Vardguiden, since February, 2002. This program offers information about healthcare services, a help desk, and secure communication of questions or messages to the patient’s healthcare professional. There were 55,000 users per month in 2003, and 12,000 who access the information by telephone. More than 800,000 answers were provided. The corresponding time saved is evaluated at € 1.25 million per year. c) Mental health services NetDoctor (depression) The for-proﬁt consumer website NetDoctor operates, online forums for depressed patients in several European countries. According to company data, 28,000 users were registered in these forums, across the UK, Sweden, Denmark, and Austria in 2003. A study by H. Agrell [6] et al of the Karolinska Institute examined the Swedish NetDoktor Depression site. Agrell’s study measured how individuals are affected by the active use of an Internet community site dealing with depressive disorders. The authors proceeded via an Internet-based survey. 219 individuals responded. 114 were active members of the community. Amongst the subgroup of 30% of participants who had not initially revealed their depression to anyone beyond the website, 80% of those did seek help, thanks to the advice of the group. The study conclusion is that “the Internet seems to have the potential to provide an important function for depressed people.” APHA (crisis counseling) The Finnish early-stage counseling and crisis portal was established in 2001. It is maintained by 15 organizations working in mental health, addiction, children’s welfare, domestic violence, and other public health subjects. Consumers are directed to an appropriate service, based on the need they express. In January, 2003, there were 3022 unique users of this Finnish-language site. d) Patient information CancerNet G Quade et al of the University of Bonn [7], examined the results of CancerNet online, which was established in 1994, as a website designed to enhance the patient-physician relationship. CancerNet, which provides access to the National Cancer Institute guidelines, is offered in English, Spanish, and German for patient information. Since 1994, nearly 2 million users, including more than 200,000 physicians, have consulted the site. 95% rated the service excellent or good.

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e) Quality seals The desire to evaluate the quality of health websites has generated nearly 200 papers by researchers in Austria, Denmark, Finland, France, Germany, Hungary, Ireland, Italy, Norway, Poland, Spain, Sweden, UK. Authors often seem to seek to demonstrate the dangers of health websites to the citizen. We noted with interest the research [8] of Howitt et al, evaluating 90 physicianmanaged websites in the UK. The median time elapsed since the last update was 249 days. The doctors’ qualiﬁcations were absent in 26% of sites. The source of medical information was given in only 10% of 109 topics. Health on the Net (HON) The best known and oldest of the quality seals for health websites is proposed by Health on the Net since 1996. More than 3000 websites worldwide adhere to the HONCode. The HONcode has been shown to be one of the major accuracy content indicators in a study conducted by Fallis et al. [9] Adherence to the HONcode means that the website includes the author’s credentials, the date of the last modiﬁcation with respect to clinical documents, ensures the conﬁdentiality of data, indicates sources of funding, its advertising policy, and clearly identiﬁes any advertising as such. HONcode is free of charge to the website and would eliminate most quality of information defects. The UK Consumers’ Association 2003 Policy Report [10] provides one of the most complete recommendations regarding the quality of consumer healthcare information. This is the ﬁrst policy paper in which Web-based quality criteria are recommended for application to all media. a) Online databases and registries As more and more healthcare databases move online, they enable professionals and citizens to collaborate efﬁciently across boundaries, whether local, regional, national, or worldwide. FINPROG A Finnish web-based system for individualized survival estimation in breast cancer was developed by researchers at the Universities of Helsinki and Tampere. According to Lundin and Lundin, the researchers, “this web-based system could be applied to a variety of diseases.” FinProg generates survival curves dynamically. Researchers can obtain survival estimates based on actual and not inferred data. Users can enter any prognostic factor data and explore the database. The data base is intended for consultation by physicians, but access is not restricted. All personal identiﬁcation information has been deleted. “The source for the survival data is a Finnish nationwide series of women with breast cancer. There are 2842 total patients in the Finprog series. 91% of all breast cancer cases diagnosed within the selected regions and the chosen time interval could be included in the database, which would suggest that the series is relatively unbiased. The median follow-up time for the unrelapsed patients is 9.5 years.” [11] Pediatric European Cardiothoracic Surgical Registry The European Congenital Heart Surgeons Foundation, established in 1992, created the European Congenital Heart Defects Database for the purpose of collecting outcomes data on congenital heart surgery procedures across Europe. Since January 2000, Cardiothoracic Surgical Registry, has ofﬁcially operated from the Children’s Memorial Health Institute in Warsaw, Poland, under the auspices of the Eu-

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ropean Association for Cardio-Thoracic Surgery. Participation in the database is free of charge through the Internet. “In April 2000 the International Congenital Heart Surgery Nomenclature and Database Project published a minimum dataset of 21 items and lists of 150 diagnoses, 200 procedures, and 32 complications, as well as 28 extracardiac anomalies and 17 preoperative risk factors. As of March 2001, 84 cardiothoracic units from 33 countries had registered and data on almost 4000 procedures have been collected.” [12] TOXBASE The National Poisons Information Service (NPIS) in the UK has six regional ofﬁces. In 1999, the NPIS’s existing database TOXBASE was transferred to the Internet and made available to health professionals working throughout the NHS. TOXBASE holds information on 14,000 agents including pharmaceuticals, chemicals, household products, plants, . . . Pharmaceuticals account for 73% of accesses to the database. Results of the transfer were reported in Web-based information on clinical toxicology for the United Kingdom: uptake and utilization of Toxbase. [13] Enquiries to TOXBASE were found to be more than 3,4 times more frequent on the Internet, than by telephone. Monthly use of the telephone service showed a gradual decrease as TOXBASE usage increased. The risk of telephone queuing was also reduced. Whereas most telephone inquiries came from primary care, the major TOXBASE users were accident and emergency departments. Referrals to senior clinical staff increased. A survey conducted across the UK conﬁrmed that the system meets users perceived clinical needs. DN Bateman et al concluded that computer information systems are alternative tools to the telephone for the provision of poisons information. Birth and other registries In Medical birth registry—an essential resource in perinatal medical research [14], LM Irgens reports on the Norwegian component of EUROCAT, the European network of population-based registries for the epidemiologic surveillance of congenital anomalies. More than 900,000 births per year in Europe are surveyed by 36 registries in 17 countries of Europe. The Nordic Association of Birth Registries is introducing non-paper notiﬁcation in 2003. Jaspers et al of the Department of Medical Informatics, Netherlands Cancer Institute report on the beneﬁts of a national computerized pediatric cancer registry on late treatment sequelae in The Netherlands. [15] b) Electronic Health Record (EHR) EC Framework programs The electronic health record (EHR) is digitally stored clinical and administrative health care information about an individual’s lifetime of health experiences, for the purpose of supporting continuity of care and education and research, while ensuring conﬁdentiality. Requirements of an EHR were formulated, as of 1991, in the European Union R&D Program. An EHR System manages EHR information. The system can be a small group of PCs, a hospital information system, or a group of hospital and primary care systems in a regional network. EHR systems for general practitioners have so far achieved the highest penetration. They are popular in countries with a strong tradition of primary care such as United Kingdom, Ireland, Netherlands, Denmark.

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Management of Medication and Dosage An important feature of the EHR is its capability of supporting the determination of the drug dose. As Walton et al conﬁrm in Computer support for determining drug dose: systematic review and metaanalysis, [17] “many drugs have a narrow ‘window’ in which therapeutic beneﬁts can be obtained at a low risk of unwanted effects.” Yet, in one study cited by Walton, it is noted that “82 of 150 hospital doctors were unable to calculate how many milligrams of lignocaine were in a 10 ml ampoule of 1% solution.” The authors assessed the beneﬁts of computer systems designed to help doctors determine the optimum dose of drugs. 17 controlled clinical trials were included, based on the criteria of the Cochrane Collaboration on Effective Professional Practice. “Eleven studies examined change in the drug dose when computer support was used and seven found signiﬁcant changes, involving both increases and decreases in initial and maintenance doses. Four of the six studies which measured unwanted drug effects found signiﬁcant reductions in association with computer support.” Two studies reported economic data, including reduced cost of treatment and reduced hospital stays. A 2002 publication in Quality and Safety in Health Care, [18] found that more than 86% of mistakes in family-care ofﬁces are administrative or process errors: ﬁling patient information in the wrong place, ordering the wrong tests, prescribing the wrong medication. However, 10 mistakes led to a hospital admission and one to a patient death. This study, performed by the observation of 42 physician volunteers over a 20-week period in the year 2000, is the ﬁrst to focus on errors that occur outside the hospital setting. EHTEL According to Living at home, healthcare in the home, published by EHTEL, while the same technology is available in both countries, 75% of doctors’ prescriptions are transmitted electronically in Denmark and only 10% in Sweden. The Swedish national ﬁgure ranges from Stockholm with only 2% to Norbotten with 95%. c) EHR systems in hospitals The hospitals with good examples of EHR systems have been running for many years and have begun to conﬁrm cost savings through greater efﬁciency and improved care. As the technology evolves and some standards emerge, EHR installation in European hospitals is increasing. Denmark, Finland, Norway, and Sweden support regional and national health telematics networks, These EHRS are shared within hospitals, between hospitals, between hospitals and primary care centers or individual physician’s ofﬁces. COHERENCE (European Hospital Georges Pompidou – HEGP, France) COHERENCE stands for “Component-based Health REference architecture for Networked CarE”. The opening of HEGP in July 2000, was the result of the biggest hospital consolidation in Europe. Three technically obsolete hospitals were closed, and HEGP was allotted a budget lower than the sum of the 3 predecessors. 6% of this initial budget were attributed to IT for development and 1.8% of annual operating costs for maintenance. The IT objectives for HEGP are: to control costs through organizational innovation, to improve the quality of the patient admission process, to decrease and redirect the number of beds. Over 140,000 patients have participated in the EHR system since opening day. Ubiquitous access to a lifelong multimedia EHR is achieved through the use of 1800 ﬁxed and mobile computers with wireless transmission. Transmission of secured eMail to the patients is provided through “La Poste” Internet eMail secured transmis-

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sion services. Medical information is recorded at bedside and prescriptions distributed to technical platforms together with a minimum medical ﬁle. The appointment system, shared by 96% of the units, generates a personalized care plan, which can be followed by authorized professionals on any of 1800 computers. Waiting lists are reduced; conﬂicting appointments are highlighted; investigations are documented. Patients are re-assured by the quick entrance procedure at one of 22 decentralized access points and the physician’s access to previous history. The HEGP brings all units of a same specialty together geographically, (for example, medicine and surgery) and merges traditional units into 7 major cooperative centers. Compared to its predecessors, global operating costs at HEGP are 17 million euros lower, despite the 15 million euro increase in medical costs for diagnosis and treatment. HEGP offers a 0.9 increased nursing personnel bedside presence and a 1.0 day reduction of the mean length of stay. d) Electronic libraries and evidenced-based medicine information services The demand for greater access by professionals to evidence-based medicine (EBM) is growing, despite the controversy over the deﬁnition of good evidence. Libraries are increasingly implementing electronic distribution of documents, but not all practice situations enable healthcare professionals to use such documents. In Information management and reading habits of German diabetologists: a questionnaire survey, [19] Trelle notes that the need for evidence-based medicine has not reached German diabetologists. According to survey results of 461 professionals, 90% had convenient access to the Internet, MedLine or EMBASE, but only 45% searched databases regularly (three searches per month). The Kostoris Medical Library The Paterson Institute for Cancer Research is one of the largest cancer research laboratories in the UK, with over 200 researchers, fellows, students, administrators. The Institute is part of the Joint Academic Network, beneﬁting from a super-fast connection and large bandwidth. Electronic mail is the primary form of communication. In “Biomedical information @ the speed of light: implementing desktop access to publishers’ resources at the Paterson Institute for Cancer Research in Manchester,” [20], the systems librarian explains how every Thursday at midnight, a list server in Massachusetts delivers an electronic table of contents messages containing the details of the latest edition of the New England Journal of Medicine, complete with hyperlinks to the full text of the content online. The Kostoris Medical library initiated an etoc (or table of contents alert) service in 1998. The institute saves up to 21 days per publication, compared to the arrival of the paper journal. Rouen University Hospital CISMeF is the French acronym for Catalog and Index of French-language health resources. This 60,000+ page Web site, which receives 15,000 queries daily, was created by the Rouen University Hospital in 1995, and is well known among French physicians. CISMeF describes and indexes quality French-language health resources available on the Internet. CISMeF uses the Medline bibliographic database, MeSH thesaurus, and the Dublin Core, offering indexation by medical specialties and alphabetically. In Cost effectiveness of a medical digital library, [21] Roussel et al at Rouen University Hospital in France assessed the cost impact of modiﬁcations to the digital library

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and found that: “When electronic versions are offered alongside a limited amount of interlibrary loans, a reduction in library costs was observed.” National Library of Medicine The National Library of Medicine produces Medline, which is available online since 1997. Elliot R. Siegel, the Associate Director for Health Information Programs Development, presented Strategic Approaches to Web Evaluation at the ICSTI Conference on Scientiﬁc Information in Stockholm, June, 2002. This paper conﬁrmed that the US government health websites are visited by more non-Americans than Americans. With 6 million global unique visitors per month and 3.2 million Americans, the NIH websites are far and away the most visited health sites in the world. South Cheshire Local Multidisciplinary Evidence Center (LMEC) In a 1998 report which conﬁrmed that primary and community care staff in the UK had limited access to library and information services, the recommendation was made that Local Multidisciplinary Evidence Centers (LMEC) be created to improve the situation. JC Howard et al, present the results obtained in South Cheshire between 1998 and 2000 [22]. The library catalogue was automated and included on the website as were local directories, clinical guidelines, and training opportunities. Staff monitored use of the website, library membership, and requests by LMEC users. Evaluation was carried out by a survey of 760 staff in February 2000. Numbers were disappointing but people who used the service were enthusiastic. 115 practice staff joined the library. Requests for books increased from 5 to 25 per month. Article requests increased to 35 per month. Website hits increased from an initial 150 to 300 per month. The bibliographic databases and clinical guidelines were found to be the most useful resources on the website. They concluded that the study “demonstrates the need for a greater investment in communicating to a staff about the service.” NeLH National electronic Library for Health (UK) The purpose of the NeLH is “to provide health professionals with a core knowledge base of accredited and evaluated information” [23] The NeLH is based around a central website including 70 information resources, obtained through partnership with the NHS Libraries, NHS Direct Online, and the electronic Library for Social Care. According to the NeLH, there are no other free, single-source, evidence-based knowledge resources available to and focused on clinical staff. One of the quantiﬁable beneﬁts is the ability to purchase resources centrally. In February 2002, the ﬁrst online continuing professional development modules were launched on the NeLH website, as well as a breast cancer Web resource in collaboration with NHS Direct online, and a diabetes knowledge base for NHS professionals. NeLH provides evidence-based analysis of the news reports regarding new cures and techniques, within 48 hours of publication. The website achieved 2.7 million hits in April, 2002. A cost-beneﬁt analysis concluded that the investment in evidence-based content offer cost savings in terms of staff time at between £3 million and £12 million per year. e) Distance education for professionals According to Grimson et al in Dublin, “the need to participate in continuing professional development or continuing medical education, is considered to be at the very least

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highly desirable and more likely mandatory. The use of ICT is one means by which this can be facilitated in a timely and cost-effective manner.”[24] Their comment is supported by Kronz et al’s paper whose title provides the conclusion: A Web-based tutorial improves practicing pathologists’ Gleason grading of images of prostate carcinoma specimens obtained by needle biopsy: validation of a new medical education paradigm. [25] Johns Hopkins In this ﬁrst large-scale international study evaluating the use of a web-based program to educate widely-dispersed physicians, the Johns Hopkins Hospital team tested webrecruited international pathologists’ ability to evaluate 20 images of prostate carcinoma specimens, before and after exposure to 24 tutorial images. 643 practicing pathologists participated in this free Web-based program. Pre-tutorial score correlated <0.0001 to the pathologist’s location; higher scores were achieved by US than non-US based pathologists. The Web-based tutorial signiﬁcantly improved grading in 15 of 20 images. Yet, we know from the work of Dr Bernard Sklar, that continuing medical education credits are obtained online by only 5% of physicians. Physicians prefer to meet with their colleagues at live conferences, even though they are not pedagogically effective. However, positive results were reported on a 5 year Canadian experience, in Videoconferencing for continuing medical education: from pilot project to sustained program [26]. “In the year 1999-2000, a total of 64 videoconferences were provided for 1059 learners in 37 sites. Videoconferencing has been well accepted by faculty staff and by learners, as it enables them to provide and receive CME without traveling long distances. Evaluation enables the effect of videoconferencing on other CME activities, and costs, to be measured.” WebSurg WebSurg is a distance education program with an international scope, launched by J Marescaux at the European Institute of Telesurgery (EITS) in Strasbourg, France. Providing online video training in English, French, and Japanese, the courses are also accredited by the University of Virginia. WebSurg’s distance education program is an outgrowth of the on-site surgical institute. Between 1999 and 2002, the EITS trained over 7000 international surgeons on site in the latest robotic and telesurgery techniques, including simulation of the operation prior to surgery, via 3D modeling. 83% of the trainees were from Europe. The Institute has a video hook-up enabling both telesurgery and broadcast of local surgery to conference sites around the world. Virtual Medical University The French online medical university is the French Virtual Medical University or Université virtuelle médicale francophone. The UVMF includes the medical schools of Grenoble, Lille, Marseille, Nancy, Paris V, Paris VI, Rennes and Rouen who together place their elearning materials online through multiple, integrated virtual campuses. f) Telemedicine The ﬁrst two publications on Medline regarding telemedicine date back to 1975 and concern space ﬂight. The Telemedicine Research Center website now has a database of more than 12,000 articles. According to the TRC, telemedicine has been deﬁned as the

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use of telecommunications to provide medical information and services. (Perednia and Allen, 1995). There are ﬁve telemedicine applications: teleeducation, telesurgery, and health networks, tele-expertise, and telemonitoring. Tele-expertise is deﬁned as prevention, diagnosis and collaborative practice. Telemonitoring involves prevention and follow-up of the patient. Two-way interactive television (IATV), used for “face-to-face” consultation is an important technology, as is image archiving. Peripheral devices can also be attached to computers. The word “tele” or far is a relative concept. In telesurgery, the surgeon may be in the operation room and call upon robotic assistance for greater precision and to eliminate tremor. Home monitoring is a form of telemedicine. Almost all specialties of medicine have been found to be conducive to teleconsultation: psychiatry, internal medicine, rehabilitation, cardiology, pediatrics, obstetrics and gynecology and neurology. Transcontinental Telehistopathology in prostate neoplasia According to the publication [27] by Montironi et al (Ancona), 1167 prostate neoplasia biopsy slides were transmitted and downloaded via the Internet among investigators collaborating in Europe and North and South America. The study measured inter and intraobserver reproducibility and found that there was 98% concordance amongst the results. Digital Image and cost-beneﬁt Siemens AG MHS consulting practice published cost beneﬁt data regarding a PACS or picture archiving and communication system. The ﬁlmless radiology department can save approximately € 250,000 in a large hospital through the savings on ﬁlm, personnel archiving facilities, developers, printers, and light boxes. PACS also reduces length of stay from 0.1 to 0.3 days. TELIF Network The telemedicine mission of the Paris Hospital System (AP-HP) provided data on TELIF, a telemedicine program for the management of neurosurgical and neuro-medical emergencies in the Paris area. An initial study showed that 65% of patients transferred to neurosurgery emergency centers were not admitted and that 57% of the transfers would not have been recommended by the neurosurgeon on duty if the CT scans of the patients had been transmitted. TELIF increased the access of patients to appropriate care and reduced the risk of transport of an unstable patient. The TELIF network, operational since 1994, supports transfer of CT scans between 34 peripheral hospitals and specialized centers, in order to avoid inappropriate transfers. Decisions are taken by a multi-disciplinary group, including radiologist, neurosurgeon, emergency physician. Transport budgets are reduced. 90% of patients transferred are admitted. Emergency staff expertise is improved via receipt of second opinion. According to the European evaluation, TASTE, 1380 transfers were avoided in two years, with a net gain of € 1600 per transfer. Systematic reviews The Journal of Medicine and Telecare devoted its eighth issue 2002 to review studies of telemedicine. The authors’ judgments are mixed.

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Hersh et al (Oregon) noted in, a Systematic Review of the efﬁcacy of telemedicine for making diagnostic and management decisions, [28] the existence of over 450 telemedicine programs worldwide. They reviewed 58 studies and noted that few were highquality. Their ﬁndings are that “only a few specialties can obtain comparable results to face-to-face care by telemedicine.” Halley et al from Canada and Finland reviewed 66 comparative telemedicine studies [29]. They found that 56% were positive, 36% were inclusive and 8% weighed in favor of “face-to-face.” Loane et al (Queensland Australia) conducted a review [30] of telemedicine guidelines and standards and concluded that guidelines are insufﬁcient and there is no consensus as to who should take the responsibility for developing them. Whitten et al [31] included only 24 of 612 identiﬁed articles presenting cost beneﬁt data, and concluded that there is no good evidence that telemedicine is a cost effective means of delivering health care.” Rashid Bashshur et al from WHO wrote a remarkable Executive Summary [32]. Their key observation is the discrepancy between the potential and the reality of use: in a sample of 132 programs, only 15 reported more than 1000 teleconsultations per year. Their conclusion: “the highest priority should be given to funding appropriate, long-term, large-scale telemedicine projects by national and international agencies.” Internet-facilitated home monitoring systems for disease management Since the late 1990s, a form of “telemedicine” has been applied to disease management. Home monitoring systems “transport” the patient’s vital signs and statistics, virtually to the healthcare professional via the internet. Chronic diseases including asthma, congestive heart failure and diabetes have begun to demonstrate the value of home monitoring. More frequent monitoring of selected patient data (heart rate, blood pressure, glycemia, peakﬂow) improves compliance and the quality of care itself. The patient has a more frequent dialogue with a health professional. The professional is alerted when necessary, making dosage and other adjustments possible. Face-to-face encounters can be scheduled more appropriately than in the absence of continuous data from the patient. Emergency room visits decrease. Overall health is improved. Patient education and self-management are key to the success of these programs and the Internet makes it possible to communicate with the patient. In an editorial on the JMIR website, Demeris and Eysenbach highlight some of the key papers published to date. One key program is The Telematic Management of Insulin-Dependent Diabetes Mellitus (T-IDDM) project, funded by the EC. This project “implemented and evaluated a computer-based system for the management of insulin-dependent diabetes mellitus. The system includes a module allowing patients to automatically download their monitoring data from the blood glucose monitoring device, and to send them to the hospital database. The system provides physicians with a set of tools for data visualization, data analysis and decision support, and allows them to send messages, including therapeutic advice, to the patient.” REGIONAL AND NATIONAL NETWORKS Regional and national networks link the healthcare actors in a region or a country, electronically, for clinical and administrative healthcare purposes. Prior to the emergence of these systems, the citizen-patient was the “network” doing the footwork of carrying or mailing documents to the different points of care. Since the paper ﬁle remained in

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one place, the physician’s archives, no one had access to the full data. Now, networking technology improves the efﬁciency of both clinical care and the administration of care. Tens of millions of Europeans are already included in these networks. a) Smart cards Smart cards have been applied to healthcare applications in Europe in France, Germany, and Slovenia. Rumania, Finland, and the UK have pilot projects. Health Insurance Card System (Slovenia) The Health Insurance Card System of Slovenia was introduced in the year 2000, to the two million person population of Slovenia. The system establishes data interconnections between all health insurance and health service providers. These include 1081 physicians, 77 institutions, 92 pharmacies, 64 healthcare centers, 26 hospitals, and 15 health resorts. Sesame-Vitale (France) The most recent statistics of the French program, “Sesame-Vitale” are found on the government website French National Social Security (CNAM) had been planning to modernize its reimbursement system for over 20 years. In 1978, the CNAM adopted a secure electronic data capture system using electronic or smart cards, program which would later be named SESAMVitale. The paper reimbursement form would become an “electronic care sheet” produced by the interaction of the health professional’s computer, the citizen’s Vitale Card, and a central network. The data from the electronic care sheet transits via the Social Health Network (RSS) to the CNAM’s IT system. Cegetel RSS authenticates the identity of health professionals and ensures interconnection amongst healthcare actors, secure mail, and access to drug and medical information alerts. This system was rolled out between 1998 and 2001. Private practice health professionals were requested to introduce a computer and teletransmission device to their ofﬁces and were equipped with the “Health Professional’s card”. Over 50,000 MDs and 300 hos-

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pitals are connected. One million forms were transmitted in 2002. A total of 450,000 professionals have received cards. b) Regional health information networks Health information networks typically involve the linking of healthcare institutions, via telemedicine and Web-based services, to professionals and patients disseminated over a broader geographic area than could be serviced by the institution without the technology. There is no standard size for a “regional” health information network. EVISAND (Spain) EVISAND is operational since the year 2000, in three provinces of Andalusia, Spain, representing a total of 2.5 million inhabitants. The program includes: Telemedicine video-assisted specialist consultations in cardiology, dermatology, pediatrics, psychiatry, ophthalmology, radiology, ambulatory surgery, and neurosurgery; multipurpose training for health professionals, virtual support to health emergency situations. Online consultations represent 80% of the medical activity and emergency assistance 20%. In 2002, programmed health transport increased 18% over 2001, whereas emergency transport increased by only 7%. Transmitting and receiving physicians as well as patients indicate a very high satisfaction rate with the service. Northern Norwegian Health Network (Norway) The NH is the Northern Norwegian Health Network, a closed network for healthcare institutions. The University Hospital of Northern Norway, which includes the Norwegian Center for Telemedicine, provides health services in the network. The region includes 464,159 inhabitants, many living in remote areas. The University Hospital receives 6500 teleradiology consultations a year. The Troms Military Hospital sends an additional 8400 teleradiology consultations, because it does not have its own radiologist. Patients can request appointments and access results via the Web. Telemedicine services have replaced phone calls from general practitioners to specialists for advice, and travel for many patients. One million messages went through the health net in January 2003. These messages include transmission of: dermatology images, ear-nose-throat stills, pediatric cardiology recordings, discharge letters, laboratory and radiology analyses, referrals. Ultrasound and stethoscopes are connected to video equipment. The hemodialysis machine is monitored by software. In more than 95% of cases, the dermatologist could conclude on the basis of the information forwarded in the still images, although many patients prefer videoconferencing. HYGEIAnet (Greece) HYGEIAnet is the regional health information network of the island of Crete, Greece. This network provides homecare, an integrated health record, teleconsultation services, clinical information systems for hospitals; and emergency care. HYGEIAnet allows patients to provide access to information in their health records 24 hours a day with greater security than can be provided with a paper-based system and facilitates access to remote cases by professionals. The ﬁrst phase of HYGEIAnet’s implementation ran from 1995 to 2001. 2000 staff members have been trained regarding the use of the system. 82% of dispatching decisions regarding emergency situations have been judged correct, a signiﬁcant improvement over

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the previous situation. Clinical trials on telemanagement of pediatric asthma have been successful. c) National Networks NHSNet (Scotland) NHSnet is the name of the electronic network for primary care professionals in the United Kingdom. NHSnet will provide access to up to date information through NHSnet Webpages and the Internet, as well as to laboratory results, referral and discharge letters, hospital appointments, electronic prescription transfer. Willmot et al describe the positive, but imperfect results of NHSnet in linking primary care practices in Scotland [33]. All Scottish general practices received “a free computer, installation of an ISDN line, registration to NHSnet, and one day’s training.” Results of the program were evaluated through questionnaires at end 1998. In 56% of practices, someone accessed NHSnet at least once a week. However, the authors observed great local variation in results and considered that “implementation has been less than satisfactory”, because local decision making within a national initiative had led to a “highly variable system” in terms of basic technical service rendered to the physicians. This implementation demonstrated that a homogeneous offering is preferable. Medcom (Denmark) From Theory to practice: electronic communication and Internet opportunities in the Danish health service [34] by Claus Pedersen et al describe 12 years of work in developing an electronic national health network. In 1990, the system was launched with EDIFACT technology and a closed network. Pilot projects were developed by each county until 1994, when one county took the initiative to establish a national project to avoid redundancies, and to compile national EDIFACT standards for the most frequent messages. This project was called Medcom. All major public health organizations participated, as well as some private companies. MedCom II was established to ensure the diffusion of the standards that had been developed. Today 80,000 messages are communicated daily. 100% of hospitals, pharmacies, emergency doctors, 90% of GPs, 98% of laboratories, 55% of specialists, 20% of municipalities are connected to the healthdata. MedCom enables hospitals to use electronic referrals, avoiding data re-entry. The professional quality of referrals has risen. Discharge letters are stored directly in general practitioner (“GPs”) journal systems and monitoring of time elapsed before receipt of the discharge letter is facilitated. MedCom has led to signiﬁcant ﬁnancial and quality gains for the Danish health service. “A study at the University Hospital in Odense, Denmark, shows that more than 50% of all paper referrals from GPs were so inadequate that it was impossible to implement patient referrals without ﬁrst contacting their GP.” A 1995 study by the Danish Institute for Health Services Research, focused on the introduction of electronic communication between GPs, pharmacies and hospitals in Funen County, [35] GPs and hospitals saved time per message regarding referrals, prescriptions, laboratory reports, and discharge letters. An evaluation [36] of a pilot project in Viborg County shows that it was possible in 95% of selected diagnoses to examine and treat patients by means of teledermatology. Another study concluded that pharmacies have reduced their staffs by 6.3%, largely due to electronic communication.

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GPs in Denmark are self-employed and yet spend between € 14 K and € 40 K in Medcom set up costs. Approximately 50% of GPs believe that electronic communication is signiﬁcant in this respect. [37] MedCom IV represents the transition to Internet technology, including: secure email; appointment making; web access to laboratory results, xrays, patient information; home monitoring; telemedicine and health information. The Danish health Internet began ofﬁcially on June 18 2002, with a large-scale pilot project. By 2004, the project will include a national telemedicine dermatology network, posting of xrays, lab results, and ECGs, and a link between GPs, hospitals and carers.

4. eHealth statistics and behavior eHealth Statistics Data on the distribution of eHealth software applications in Europe and the use of the Internet are incomplete. Some of the gaps on relevant data are being ﬁlled through the research work of HINE, Health Information Network Europe, a program initiated through EU support. Our sources are publicly available information, from both the EC and publications. EHRs According to EC data, almost half of the connected GPs (48%) in the EU use an EHR. 90% and 95% respectively of connected GPs in Sweden and Denmark use EHR’s. The use is more limited in Spain (35%), Greece (27%) and France (17%). In most of the European countries, the equipment is bought by the practice; for 10%, the equipment was provided by national or regional health care services. The ﬁgure rises to 72% of Swedish GPs and 38% of Dutch GPs. In Germany, 17% of GPs are equipped through GP or health care associations. Internet According to both CyberAtlas, and Global Access, there are approximately 600 million people online. In an article posted February 21, 2003, “More than halfbillion online globally,” CyberAtlas presents the ﬁgures of Nielsen-NetRatings, IDC, UCLA 2002. • The global Internet population grew by 4% in 11 major Internet markets during 2002. • Spain registered a 22% increase to 17 million users. Germany (35.6 million), the United Kingdom (29 million) and Italy (22.7 million) have the largest number of people outside the U.S. with Internet access via a home PC. • Sweden, Hong Kong, the Netherlands and Australia have the highest Internet connection rates (81+%) for those who have a PC in their home. • Estonia and Slovenia have Internet penetration levels on par with Western Europe. Global Reach estimates the number of people online in each language zone (native speakers). Non- English native speakers now represent 63.5% of Internet users. This is further broken down into 35.5% for European languages and 25.8% for Asian languages. The Chinese and Japanese languages represent the second and third languages after English with 9.3 and 10.8% of users respectively. • English 231 M (36.5% of total world online population) • Non-English 403.5 M (63.5%)

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• European Languages 224.1 M (35.5%) ◦ ◦ ◦ ◦ ◦

Spanish 40.8 M (7.2%) German 42.0 M (6.6%) French 22.0 M (3.5%) Italian 24.0 M (3.8%) Portuguese 19.0 M (3.0%)

• Asian Languages 146.2 M (25.8%) ◦ Japanese 61.4 M (9.3%) ◦ Chinese 68.4 M (10.8%) ◦ Korean 28.3 M (4.5%) The DG Information Society and Technology eHealth Unit sponsored Eurobarometer, a study providing data regarding Internet penetration in 15 member states, for both households and general practitioners. The sizes of the two total samples are high, relative to other surveys. Telephone surveys were conducted separately for households (30,336 individuals) and general practitioners (3512). The increase in Internet penetration is apparent during this period. The comparison of physician and household penetration shows that physician attitude to the Internet is not a function of the percent penetration of the Internet in the consumer population. We note the difference in physician behavior in three countries, wherein the populations have very similar behavior (NL, DK, S). This is again the case in the group composed of Lux, Fin, A, Irl, UK. Conversely, countries with similar physician rates have dissimilar household rates of Internet penetration. The highest rates for professionals are in countries where government impetus has been the strongest: the Nordic countries, UK, and France, thus dispelling the contentions that language, culture, or physician inability to work with computers are deﬁnitive obstacles. The highest dual coordinates (physician and household) are achieved by Denmark and Sweden, followed by Finland. These are countries where national policies have strongly promoted health informatics and eHealth. eHealth behavior as reported in the literature Consumer and professional behavior with respect to the Internet have been the object of numerous medical publications around the world.

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Healthcare Professionals More than 60 publications with abstracts present surveys concerning the use of the Internet by healthcare professionals in Europe. Vorbeck et al present early data on Austrian radiologists [37] In 1999, 26% of radiologists returned the questionnaire that was mailed to them on the subject of their Internet use. Of those 210 radiologists, 73% had Internet access. According to Nylenna et al in The use of Internet among Norwegian physicians, [38] a postal survey of GPs in Norway revealed that 72% of the 78% of respondents had Internet access in December, 1998. The conclusion: “Doctors using the Internet professionally had longer working hours, read more medical literature and participated more often in CME activities than did non-users. For the time being, it appears that the net widens the gap between doctors who actively seek new professional knowledge and those who do not.” Feschieva et al underscore the wish of Bulgarian physicians to improve their knowledge in the article Proofs of the necessity of medical informatics for the physicians in Bulgaria. [39] “97.5% of the Bulgarian physicians have a positive attitude to information technologies . . . 84.1% of them do not have the necessary skills and knowledge to use computers in their daily medical practice.” Grimson et al (Dublin) propose solutions in “A multimedia approach to raising awareness of information and communications technology amongst healthcare professionals. [40] The authors report on a training program that was successfully delivered to over 2300 health professionals across Ireland. The program was supported by a CDROM and a website and delivered to health professionals at their place of work at convenient times. The 45 symposia met with an overwhelmingly positive reaction. They also note that: “... health service workers are looking for leadership. These leaders need to be drawn from within the health sector itself, learning from each other, and adopting international best practice...An appropriate vehi-

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cle is the specialist postgraduate program in health informatics, which emphasizes the interdisciplinary nature of the ﬁeld.” Consumers/citizens Publications in medical literature conﬁrm consumer use of information technologies in regards to healthcare information access. The key ﬁndings are: ◦ ◦ ◦ ◦

Consumer use of the Internet for health purposes is on the rise in Europe, Consumers would like guidance from their physician regarding quality websites Patients fear physician reaction to the Internet Physicians don’t consider the patients’ information and communication needs, as part of the treatment.

Stroetmann et al in Bonn, Germany, carried out a survey [41] of 9661 elderly people in 15 European countries. The percentage of computerized individuals is low, but: “13% had access to digital television. 48% had access to mobile phones, 36% had access to PCs and 22% had access to the Internet.” In Consulting the Internet before visit to general practice. Patients’ use of the Internet and other sources of health information, [42] Budtz et al (Copenhagen) concur with other European studies. In a study of 93 consecutive patients surveyed after visiting their GP, “Only two patients never looked for health information. Of all patients, a third of all with Internet access had used it because of the current visit. Women used the sources of information more than men.” In Use of the Internet and of the NHS Direct telephone helpline for medical information by a cognitive function clinic population [43], AJ Larner of Liverpool (UK) examined behavior of patients seen consecutively over 6 months by one GP at a cognitive function clinic. Parents who knew their child’s diagnosis were more likely to have used the Internet than those who named their child’s symptoms only. More than 50% of patients and families/ carers had Internet access and over half of those had accessed relevant information. However, they did not speak of it, unless asked. 82% conﬁrmed that they were interested in accessing medical websites recommended by the doctor. Tuffrey et al of Bath (UK), conﬁrm consumer interest in Use of the Internet by parents of paediatric outpatients. [44] 485 families responded to a survey regarding the Internet as pertains to a pediatric problem. “69% of families owned a computer and 51% had Internet access; 22% had looked on the Internet for information about the problem for which their child was being seen in clinic that day. 84% of parents who had used the Internet prior to this clinic appointment found it useful. Parents who knew their child’s diagnosis were more likely to have used the Internet than those who named their child’s symptoms only. A health professional had suggested that parents seek information on the Internet in only 6% of cases. Panes et al researched the extent to which patients with inﬂammatory bowel disease (IBD) in Barcelona (Spain) make use of the Internet and the relationship between Internet use and demographic characteristics in Frequent Internet use among Catalan patients with inﬂammatory bowel disease. [45]. “Replies were received from 86%. Sixty-eight percent had home computers and 49% had an Internet connection. Forty-four percent sporadically or regularly obtained information on IBD from the Web. Eighty-four percent expressed interest in having a Web site on IBD supported by the physicians of their referral center and 65% were prepared to pay a subscription for this service.”

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An important question is: do we need more data to demonstrate that European citizens beneﬁt from increased access to quality healthcare information, thanks to the Internet? Is it not time to devote resources to ensuring that access, and providing training for healthcare professionals in communication with their patients regarding these resources.

5. Key messages The Case for eHealth provides many lessons. The key message is that proof of eHealth’s contribution is available, but the fragmentation of that knowledge is slowing implementation. More speciﬁcally: • eHealth is is the application of informatics to healthcare, which began nearly 40 years ago. The growing concern regarding medical error in Europe and the U.S. favors the massive recourse to eHealth tools. EHealth improves quality of care through the health delivery system. • Medical literature is an excellent resource for eHealth publications, but the timelag from study to publication in print and on Medline is problematic for researchers. • There are many interesting examples of eHealth in EU countries, but there are few examples of country-to-country knowledge transfer, with the exception of the Nordic countries. By allowing the gap to increase between institutions and countries, it becomes all the more challenging to enter the race. Inter-institutional and international research and cooperation should be encouraged. • eHealth success stories have not been sufﬁciently communicated beyond academic circles. This is a role for mass media. When citizens have understood the concrete beneﬁts, they will accelerate the process to move eHealth forward. • The number of patients using the Internet to seek healthcare information is important and growing. However, they tend not to inform their physicians of their use of the Internet, unless asked to do so. • While computerization is correlated to GDP per inhabitant, it is also correlated to individual income; so healthcare professionals are generally more networked than citizens in the same country. • Countries that have imposed some form of computer-related obligation on professionals have a much higher rate of participation than those who have not. An obligation must be accompanied by training programs and ﬁnancial incentives. • While continuing professional education could be facilitated by eHealth tools, professionals do not generally seek today’s online course offering. Courses are mostly text based and insufﬁciently interactive. • Telecommunications infrastructure and cost-effective access to broadband connections are key, related success factors to professional, institutional, and consumer use of eHealth. • Existing telemedicine resources are under-utilized, in terms of the number of consultations; yet waiting lines for face-to-face consultations with healthcare professionals lengthen and costs rise in most of Europe. • Many registries and health-related databases have migrated online in recent years, opening greater opportunity for access to the information. More should be coordinated at a European level.

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• National networks seem to provide an appropriate level of coordination of information and service today. However, the interoperability of these systems must be ensured as citizens of Europe become more mobile in their healthcare management. • The adoption of worldwide common standards for eHealth tools and programs would signiﬁcantly accelerate the implementation of eHealth. • We must be wary of the search for more or deﬁnitive eHealth data. No research is as complete, thorough, as the study you could have imagined. No “foreign” example is as relevant as one done in your country, region, town, institution. The risk of this criticism is both the generation of redundant studies and delay in implementation. • Delay in the implantation of eHealth bears a high cost. Ofﬁcial data regarding the danger of smoking was published in the 1960s. Are we satisﬁed by our progress in eradicating this killer? Should we have continued to collect data demonstrating the cause and effect or devoted those funds to the study of the eradication of smoking itself? Moving the Case for eHealth Forward Where do I go from here? What is the road forward? How can one road map be right for such a diversity of contexts and actors? We have identiﬁed the following steps, common denominators for the promotion of eHealth. 1. Communicate to and educate healthcare stakeholders, regarding the beneﬁts of eHealth in improving quality of care. Explain that eHealth is a means and not a ﬁnality. 2. Provide incentives for increased use of quality eHealth tools. 3. Make contact with coordinators of successful eHealth programs. Involve healthcare stakeholders in this review. 4. Determine which one, two, or three programs, would meet with the best support by the greatest number of your healthcare partners 5. Engage in informal networking with colleagues in other countries. 6. Appoint a leader and a representative of stakeholders to participate in the implementation of each program. Request an action plan with a ﬁrm deadline. 7. Ensure that evaluation methodology is an integral part of the program. 8. Introduce healthy competition into the implementation process. 9. Reward use of existing tools and programs wherever possible. 10. Maintain regular dialogue with healthcare stakeholders.

References [1] Ball MJ, Douglas JV, Lillis J. Health informatics: managing information to deliver value. Medinfo 2001;10(Pt 1):305-8. [2] McGinnis PJ. The scope and direction of health informatics. Aviat Space Environ Med 2002 May;73(5):503-7 [3] Haux R. Health care in the information society: what should be the role of medical informatics? Methods Inf Med 2002;41(1):31-5 [4] Cimino JJ. Beyond the superhighway: exploiting the Internet with medical informatics. J Am Med Inform Assoc 1997 Jul-Aug;4(4):279- 84. Review. [5] Larsen, Poul Danish Web Portal Strives To Bridge Health-Care Gap WSJ 2002 Nov 11.

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[6] Agrell H, Walinder J. Internet health service can provide support to depressed individuals Lakartidningen 2002 Oct 17;99(42):4152-4, 4157. Swedish. [7] Quade G, Burde B, Zenker S, Goldschmidt A. CancerNet online—a contribution to improving oncologic management Zentralbl Gynakol 2000;122(12):646-50. German. [8] Howitt A, Clement S, de Lusignan S, Thiru K, Goodwin D, Wells S. An evaluation of general practice websites in the UK. Fam Pract 2002 Oct;19(5):547-56 [9] Fallis D, Fricke M. Indicators of accuracy of consumer health information on the Internet: a study of indicators relating to information for managing fever in children in the home. JAMIA 2002 Jan-Feb;9(1):73-9. [10] UK consumers’association 2003 policy report [11] Lundin J, Lundin M, Isola J, Joensuu H. A Web-based system for individualised survival estimation in breast cancer. BMJ 2003 Jan 4;326(7379):29. [12] Maruszewski B, Tobota Z. The European Congenital Heart Defects Surgery Database experience: Pediatric European Cardiothoracic Surgical Registry of the European Association for Cardio-Thoracic Surgery. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2002 Jan;5(1):143-7 [13] Bateman DN, Good AM, Kelly CA, Laing WJ. Web based information on clinical toxicology for the United Kingdom: uptake and utilization of TOXBASE in 2000. Br J Clin Pharmacol 2002 Jul;54(1):3-9 [14] Irgens LM. Medical birth registry—an essential resource in perinatal medical research] Tidsskr Nor Laegeforen 2002 Oct 30;122(26): 2546-9. [Norwegian]. [15] Jaspers MW, Caron H, Behrendt H, van den Bos C, Bakker P, Van Leeuwen F. The development of a new information model for a pediatric cancer registry on late treatment sequelae in The Netherlands. Stud Health Technol Inform. 2000;77:895-9. [16] Arts DG, De Keizer NF, Scheffer GJ. Deﬁning and improving data quality in medical registries: a literature review, case study, and generic framework. J Am Med Inform Assoc 2002 Nov-Dec;9(6):600- 11 [17] Walton R, Dovey S, Harvey E, Freemantle N. Computer support for determining drug dose: systematic review and meta-analysis. BMJ 1999 Apr 10;318(7189):984-90 [18] Andro, Laura Medical Studies Link Mistakes And the Lack of IT Solutions. WSJ 2002 Sept 2. [19] Trelle S. Information management and reading habits of German diabetologists: a questionnaire survey. Diabetologia 2002 Jun;45(6):764-74 [20] Glover SW. Biomedical information @ the speed of light: implementing desktop access to publishers’ resources at the Paterson Institute for Cancer Research. Health Info Libr J 2001 Jun;18(2):125-9. [21] Roussel F, Darmoni SJ, Thirion B. Cost effectiveness of a medical digital library. Med Inform Internet Med 2001 Oct-Dec;26(4): 325-30 [22] Howard JC, LMEC Steering Committee. South Cheshire Local Multi-disciplinary Evidence Center: an evaluation. Med Teach 2002 Jul;24(4):440-2 [23] Turner A, Fraser V, Muir Gray JA, Toth B. A ﬁrst class knowledge service: developing the National electronic Library for Health. Health Info Libr J 2002 Sep;19(3):133-45 [24] Grimson J, Grimson W, Flahive M, Foley C, O’Moore R, Nolan J, Chadwick G. A multimedia approach to raising awareness of information and communications technology amongst healthcare professionals. Int J Med Inf 2000 Sep;58-59:297-305 [25] Kronz JD, Silberman MA, Allsbrook WC, Epstein JI. A Web-based tutorial improves practicing pathologists’ Gleason grading of images of prostate carcinoma specimens obtained by needle biopsy: validation of a new medical education paradigm. Cancer 2000 Oct 15;89(8):1818-23 [26] Allen M, Sargeant J, MacDougall E, Proctor- Simms M. Videoconferencing for continuing medical education: from pilot project to sustained programme. J Telemed Telecare 2002;8(3):131-7. Review.

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[27] Montironi R, Thompson D, Scarpelli M, Bartels HG, Hamilton PW, da Silva VD, Sakr WA, Weyn B, van Daele A, Bartels PH. Transcontinental communication and quantitative digital histopathology via the Internet; with special reference to prostate neoplasia. J Clin Pathol 2002 Jun;55(6):452-60. [28] Hersh W, Helfand M, Wallace J, Kraemer D, Patterson P, Shapiro S, Greenlick M. A systematic review of the efﬁcacy of telemedicine for making diagnostic and management decisions. J Telemed Telecare 2002;8(4):197-209 [29] Hailey D, Roine R, Ohinmaa A. Systematic review of evidence for the beneﬁts of telemedicine. J Telemed Telecare 2002;8 Suppl 1:1-30 [30] Loane M, Wootton R. A review of guidelines and standards for telemedicine. J Telemed Telecare 2002;8(2):63-71 [31] Whitten PS, Mair FS, Haycox A, May CR, Williams TL, Hellmich S. Systematic review of cost effectiveness studies of telemedicine interventions. BMJ 2002 Sep 14;325(7364):598; [32] Bashshur RL, Mandil SH, Shannon GW. Telemedicine/teleHealth: an international perspective. Executive summary. Telemed J E Health 2002 Spring;8(1):95-107. [33] Willmot M, Sullivan F. NHSnet in Scottish primary care: lessons for the future. Comment in: BMJ 2000 Oct 7;321(7265):846-7. [34] Mika Hannula, Anne-Marie Jävelin and Marko Seppä Frontiers of e-Business Research 2002,Tampere University of Technology and University of Tampere, Tampere 2003. [35] Jørgensen, Torben and Danneskjold-Samsø, Bente: Det fynske sundhedsdatanet Fyncom – en beskrivelse og evaluering, Dansk Sygehus Institut, København, 1995 [36] Klamer, Finn: Telemedicinsk Kompetenceﬂytning, MedCom, Odense, 1999 [37] Vorbeck F, Zimmermann C, Vorbeck-Meister I, Kainberger F, Imhof H. Internet use in radiology: results of a nationwide survey. Eur J Radiol 1999 Aug;31(2):141-51 [38] Nylenna M, Hjortdahl P, Aasland OG. [The use of Internet among Norwegian physicians] Tidsskr Nor Laegeforen 1999 Nov 30;119(29): 4342-4 [39] Feschieva N, Mircheva I. Proofs of the necessity of medical informatics for the physicians in Bulgaria. Medinfo 2001;10(Pt 2):1019-22. [40] Grimson J, Grimson W, Flahive M, Foley C, O’Moore R, Nolan J, Chadwick G. A multimedia approach to raising awareness of information and communications technology amongst healthcare professionals. Int J Med Inf 2000 Sep;58-59:297-305 [41] Stroetmann VN, Husing T, Kubitschke L, Stroetmann KA. The attitudes, expectations and needs of elderly people in relation to e-health applications: results from a European survey. J Telemed Telecare 2002;8 Suppl 2:82-4. [42] Budtz S, Witt K. Consulting the Internet before visit to general practice. Patients’ use of the Internet and other sources of health information. Scand J Prim Health Care 2002 Sep;20(3):174-6 [43] Larner AJ. Use of Internet medical websites and NHS Direct by neurology outpatients before consultation. Int J Clin Pract 2002 Apr;56(3):219-21 [44] Tuffrey C, Finlay F. Use of the Internet by parents of paediatric outpatients. Arch Dis Child 2002 Dec;87(6):534-6. [45] Panes J, de Lacy AM, Sans M, Soriano A, Pique JM. Frequent Internet use among Catalan patients with inﬂammatory bowel disease] [Spanish] Gastroenterol Hepatol 2002 May;25(5):306-9.

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National Infrastructure for eHealth: Considerations for Decision Support Thomas M. JONES Vice President and Chief Medical Ofﬁcer Oracle Corporation “Infrastructure breeds impatience. It is important to note that the provision of infrastructure services is an enabling mechanism. The infrastructure itself will deliver some beneﬁts, but the main outcomes will be achieved by the provision of additional applications and services. As with any infrastructure, information technology infrastructure does not provide direct business performance. Rather it enables other systems that do yield business beneﬁts. IT infrastructure is strikingly similar to other public infrastructures such as roads, hospitals, sewers, schools, etc. They are all long-term and require large investments. They enable business activity by users that would otherwise not be economically feasible.”1

Introduction Governments across the world are in various stages of planning initiatives designed to leverage advances in healthcare information technology (IT) for the health of their citizens. The hazards of not having an Electronic Health Record (EHR) have become too apparent to ignore. The era of hospital-based systems is about to give way to the era of community based systems. The health of the citizen is beginning to assume as much importance as the treatment of the patient. Citizen-centric, community focused systems demand new ways of thinking. The architecture for the infrastructure is critical. A ﬂawed architecture will cause the system to collapse under the weight of usage across a region or a nation. In addition to the technical infrastructure required to support millions of users, a myriad of access devices, and unprecedented amounts of data, the design must incorporate an information model that supports transactional decision support throughout the life of the citizen.

The citizen and the patient Every citizen has multiple encounters with a nation’s healthcare system. At the present time, the encounters tend to be isolated from each other. The silos of clinical information are simply reﬂections of the episodic nature of traditional healthcare. We now understand 1 From “Implementing Information For Health: Even More Challenging Than Expected?”, a white paper prepared by Professor Dennis Protti for Dr. Peter Drury, Head, Information Policy Unit Department of Health and Dr. Gwyn Thomas, Acting Executive Director, NHS Information Authority June 11, 2002.

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that this episodic approach is not helping us to make sufﬁcient advances in the areas of disease prevention and chronic disease management. We have begun to think about the entire fabric of healthcare for a citizen and have seen how many agencies and contact points must be woven together to enhance health. Administrative initiatives for “disease management” must be combined with activities in health management. Information relevant to the health of a citizen has to have a logical and technical home so that it can be effectively employed. As we consider how to move a citizen through various episodes of care, it is important to be able to anticipate when timely intervention is needed. Before we can even approach complex matters like the lifetime care of a patient with diabetes mellitus or breast cancer, we ought to reﬂect on what is happening to our citizens even before they develop clinically apparent medical problems.

A simple case NC is a 38-year-old businessman with no known health problems. He resides in Cologne. His mother has been scheduled to undergo major surgery (total hip replacement) at a hospital in Munich; she will need to have units of whole blood on reserve in the Munich Blood Bank. On February 14, NC donates blood at the Munich blood bank. As part of the process, a CBC (complete blood count = hemogram) is obtained. NC’s hematocrit (one measure of the quantity of his red blood cells) on February 14 is 45 (a normal hematocrit for a man.) NC is an avid golfer. He normally plays golf quite regularly. In recent weeks, his right shoulder has been so painful that he has had to limit his golf game. On February 21, NC visits his GP in Cologne. After taking a history and examining NC, Dr. Falke prescribes sulindac 200 mg twice daily for the pain. Sulindac is a member of the category of drugs known as non-steroidal anti-inﬂammatory drugs (NSAID’s.) It is often effective for joint pain that arises from athletic activity. NC discovered that the sulindac gave him substantial relief and, with his doctor’s agreement, continued to take it. His golf game was restored. NC’s business often requires that he travel. On April 21, NC traveled to Toronto. He spent 3 days in Toronto visiting customers. On April 25, he returned to Germany, arriving at Frankfurt Airport in the morning. On the ﬂight over, NC asked the ﬂight attendant for some aspirin. He had not felt particularly well the morning of the ﬂight and, after take off, he began to feel as if he had a temperature. In conversation with the ﬂight attendant, NC was reminded that he some joint pains. During the ﬂight, he started having spells of coughing that were noted by the ﬂight attendant. At Frankfurt Airport, NC was met by a team of people who were responsible for screening passengers from SARS infected areas that appeared to be at risk for SARS. Although the WHO had recently, lifted its travel advisory for Toronto, the ﬂight attendant had notiﬁed the Frankfurt Airport monitoring team. NC was taken to an area of the airport where a small clinic had been organized. After a thorough examination (including chest x ray and blood tests), NC was not felt to have SARS, and he was released to complete his journey home to Cologne. In his hurry to get through the process (he was now 3 hours late in getting home), NC failed to mention that he was taking sulindac for his shoulder pain. Among his laboratory studies was an hematocrit of 40 (normal for a man.) Nurse Moltz at the Frankfurt clinic also recommended taking aspirin to reduce his fever.

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Without a structure that contains a repository of critical clinical information, no one would be able to quickly detect that NC was in serious danger – not from SARS, but from gastrointestinal bleeding. Between February 14 and April 25, NC’s hematocrit had dropped more than 10%. Since both hematocrit values were in the normal range, neither test would have triggered an alert by itself. Between February 14 and April 25, NC began taking sulindac, an NSAID that can cause gastrointestinal bleeding. Moreover, the recommendation to take aspirin by Nurse Moltz at the Frankfurt Airport clinic magniﬁes the hazard because aspirin also is associated with gastrointestinal bleeding. By itself, the sulindac drug order would not have triggered an alert. The most efﬁcient and practical way for concerned clinicians to author rules that would efﬁciently detect danger in a combination of three “normal” events is to have theclinical information from those events in a single data repository. For evidence-based medicine and transactional decision support systems to work efﬁciently, rules must be able to “reason” over the patient record. It is impossible to reason over records in a distributed system and still retain any semblance of adequate performance. With an infrastructure that includes core clinical information populating a schema of a standard information model, a rule (triggered by updates to NC’s record in the system) could reason over NC’s record and discover that Dr. Falke and/or NC should be notiﬁed about the potential for gastrointestinal bleeding. A simple study to detect gastrointestinal blood loss could be quickly obtained. If such a test were positive, NC would be advised to stop taking sulindac.

Distributed systems for EHR creation A number of efforts are underway to link information silos together to create the semblance of a lifetime EHR. For such efforts, XML has proved to be a seductive and useful technology. The appeal of such an approach is that local systems (hospital clinical information systems [CIS], physician ofﬁce-based electronic medical record systems [EMR] could continue to operate in local environments. A regional or nationally sponsored “wiring and messaging” infrastructure would allow any authorised user to read clinical information about a patient in any local system in which information about that patient resided. In the case of NC, such an approach is illustrated below. In Figure 1, we see that each time a clinical document is created for NC, a message is sent to the hub, which records the fact that a new document exists. It also records where that document is located. The clinical content of that document is not stored in the hub. On February 14, the system is notiﬁed that there is a new set of documents in the blood bank in Cologne. On February 21, the system is notiﬁed that there is a document in Dr. Falke’s ofﬁce system and another document in the local pharmacy system in Munich. On April 25, the system is notiﬁed that there are documents in a radiology system, a laboratory system and a clinical notes system (for the infectious disease clinic) in Frankfurt. None of the documents contains an abnormal result. Even if Dr. Falke had time to go to the system and retrieve each document as it was logged, it is quite likely that he would not “put it all together” since weeks have elapsed between episodes of care, and none of the individual results were abnormal. Any time that an authorized user wishes to read the clinical content, the hub must retrieve the document in XML format and then “unwrap” the XML document for

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Viewing Application

Any clinician, with appropriate authorization from the patient and permissions from the system, can view clinical documents that are held in any local system.

MPI, Encounter Directory, Message Location, Retrieval of XML Documents

XML Hub

4/25

2/14 2/21 Blood bank

GP office

2/21 Pharmacy

4/25 ID clinic

4/25 Radiology

Lab

Local Systems

Figure 1. The XML Hub stores information about document locations and facilitates processing of XML documents for viewing on request by authorized clinician.

presentation in user readable form. If the connection to the local system is down, then the document cannot be retrieved and the clinical content remains unknown to the clinician. For NC, each visit generates one or more clinical documents. For the very simple scenario described, six separate local systems are engaged. While distributed systems may incorporate the ability to push notiﬁcations out to authorized clinicians, such functionality is usually missing. Instead, distributed systems appear to rely on proactive action by clinicians. The distributed systems tend to be quite passive. Even if we assume that the distributed system is intelligent enough to notify Dr. Falke that a new event (the visit to Frankfurt Airport ID screening clinic) has taken place, Dr. Falke may only look at the information from that visit and completely fail to look at the hematocrit from the blood bank taken two months before. He may be well aware that NC is taking sulindac since he prescribed it, but if he only sees a single normal hematocrit (remember, there is no summarized clinical content in the distributed model), he will fail to recognize the danger. Moreover, as can be seen in Figure 2, if one of the three systems involved in the Frankfurt Airport ID screening activity were down, Dr. Falke would not be able to review the clinical content contained in that system. The fact that 4 connections must be working in order at the time of Dr. Falke’s review to take place increases the likelihood of failure. Since it appears to be difﬁcult for distributed systems to manage role-based security, it is likely that some degree of security checking will need to be done at the local system level; this increases performance problems. In addition, we are assuming that patient consent to view the information has been obtained.

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Viewing Application

Assuming that Dr Falke is aware that NC has been seen in the Frankfurt Airport ID screening clinic, he may wish to view the records of that visit. He initiates a request to see the records of that visit.

Consent

MPI, Encounter Directory, Message Location, Retrieval of XML Documents

XML Hub

Multiple security checks All systems must be “up”

X Blood bank

GP office

Pharmacy

ID clinic

Radiology

Lab

Local Systems

Figure 2. In order for Dr. Falke to be able to see the relevant information, all connections must be “live”. In addition, Dr. Falke has to guess which systems hold the critical data.

Incorporating a central data model Initially, the clinical data repository (CDR) model looks similar to the distributed model. However, as a consequence of the message processing services, the CDR becomes populated with real clinical information (as shown in Figure 3), rather than by pointers to where the information is. If Visa operated as a distributed system, you might expect to receive a statement each month that would tell you where you spent your money but would not tell you how much you spent at each store. Instead, you would have to send a message to each store asking it how much you spent. One can “reason” over the patient record in the CDR model. A rules engine can effectively represent clinical wisdom. In this case, the rules engine is alerted to the fact that NC is now taking sulindac. From that time onward (unless the sulindac is stopped), the rules engine will be alert to new instances of “hematocrit”. The new instance on April 25 prompts the rules engine to complete the reasoning process and begin the notiﬁcation process. With (or without) rules engine integration, Dr. Falke has a much easier time of looking at NC’s clinical information (see Figure 4.) Data normalization in the CDR permits sophisticated graphic displays so that changes in the hematocrit are more obvious. There is only one connection that must be “up” and only one security check. The CDR can partition NC’s clinical information in a variety of ways (location of information, author of data, major data types – such as mental health, HIV, pregnancy, etc) so that NC can keep parts of his record from Dr. Falke.

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Viewing Application

Any clinician, with appropriate authorization from the patient and permissions from the system, can view clinical data Notification REAL • • • • •

Centralized Data Repository

DATA

Master person Index Message Processing Terminology Management Security, authentication Encounter Directory

Rules Engine CDR 4/25

2/14 2/21 Blood bank

GP office

2/21 Pharmacy

4/25 ID clinic

4/25 Radiology

Lab

Local Systems

Figure 3. The incorporation of a rules engine to effectively represent clinical knowledge is not possible without a uniform logical model for clinical information storage.

In the case of NC, we have discussed a series of routine events that could have occurred in the lives of any of our citizens. We have seen how our current systems are unlikely to prevent an untoward medical event in the life of NC. We have showed how a distributed EHR may not have any impact of such problems. We have also showed how careful planning for a national infrastructure that creates a virtual environment for proactive healthcare supported by advanced information technology. There are additional beneﬁts to be derived from the proposed strategy.

Additional beneﬁts Supplying a standard information model as part of the architecture for a national infrastructure also allows the infrastructure to be used to create new, national applications. The movement toward national ePrescribing solutions is facilitated by such an infrastructure. Having core patient information (allergies, current medications, diagnoses, critical laboratory results) in a logical space allows for rules governing safe and effective medication prescribing to be active throughout a citizen’s encounters with the healthcare system. Information for national quality assurance activities and healthcare resource planning can be generated through anonymized data warehousing and business intelligence activities. Since modern relational database technology allows patient privacy to be honored in “partitioned” data base environments, the citizen truly can own access to his/her personal health data and make it available to authorized users for timely clinical care and clinical research.

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Viewing Application

Dr Falke reviews NC’s clinical data (possibly because of a notification alert from a Rules Engine)

Single system access REAL • • • • •

Centralized Data Repository

Blood bank

Single security check DATA

Master Person Index Message Processing Terminology Management Security, authentication Encounter Directory

GP office

Consent

Pharmacy

ID clinic

CDR

Radiology

Lab

Local Systems

Figure 4. The local system connections can be “down” and the critical information can still be displayed for Dr. Falke. The CDR-Rules Engine combination allows applications to highlight critical information in a timely and graphically interesting way.

Summary • If a healthcare information infrastructure cannot support a simple case, how can we expect it to support complex cases? • Transactional and retrospective decision support activities depend on data, not documents. • Rules cannot effectively “reason” over the patient record in a distributed model • The potential for temporary unavailability of key information is increased in distributed systems because of requirements for constant connectivity between all systems for all information (not just the most recent) • The need to unwrap XML documents each time a query is initiated adds to performance overhead. The burden increases, as the patient record gets larger. • Security, authentication, and auditing are more problematic in distributed systems • Proactive healthcare of our citizens is enhanced when key clinical information is available in a logical space of semantic interoperability for transactional decision support

E-Health I. Iakovidis, P. Wilson and J.C. Healy (Eds.) IOS Press, 2004

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Ministerial Declaration Brussels, 22 May 2003 Ministers of EU Member States, Acceding and Associated countries, as well as EFTA countries met on 22nd May 2003 in the framework of the eHealth 2003 conference organised jointly by the European Commission and the Greek Presidency of the Council. eHealth refers to the use of modern information and communication technologies to meet needs of citizens, patients, healthcare professionals, healthcare providers, as well as policy makers. On this occasion, Ministers expressed their commitment to the development of national and regional eHealth implementation plans as an integral part of eEurope 2005. Ministers declared their willingness to work together towards best practices in the use of Information and Communication Technologies (ICT) as tools for enhancing health promotion and health protection, as well as quality, accessibility and efﬁciency in all aspects of health care delivery. Ministers welcomed the eHealth Conference initiative of the Greek Presidency working in close collaboration with both the public health and information society directorates of the European Commission. Promoting quality of and enhancing efﬁciency in health care through eHealth applications The ministers recognised that efﬁcient national planning and evaluation of health policy, as well as cost effective delivery of health care, require speedy, accurate and comprehensive exchange of data. Ministers noted that the accessibility to appropriate health information can be enhanced through the use of secure shared eHealth applications, such as those described in the objectives of the eEurope 2005 Action Plan1 , and agreed in the Council’s Resolution2 of 18 February 2003 on the implementation of the eEurope 2005 Action Plan2 . Ministers reiterated their commitment to the developing of an information system for the early warning, detection and surveillance of health threats, both on communicable diseases and on non-communicable diseases. 1 COM (2002) 263 2 OJ: C 048, 28/02/2003, p.2–9

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Ministerial Declaration

The ministers acknowledged that eHealth applications can enhance efﬁciency and bring added value to health care by avoiding duplicate or unnecessary diagnostic or therapeutic interventions, by supporting the continuity of care, by improving communication between healthcare establishments and by widening access to health knowledge and evidence-based medicine. Ministers3 welcomed the initiative on the European Health Insurance Card announced at the Barcelona Council4 and endorsed by the Seville Council as part of the eEurope 2005 Action Plan. Ministers encouraged the Commission to explore further initiatives in developing European Electronic Health Cards also taking into account the recent Communication from the Commission (COM (2003)73) on the European Health Insurance Card. Facilitating citizen involvement through access to high quality information The ministers shared the view that citizens’ needs must be at the centre of attention in the development of high quality health related information services. Ministers noted the potential for citizen empowerment through widespread availability of high quality appropriate health information on the internet. Ministers welcomed the Commission Communication on Quality Criteria for Health related Websites and encouraged the Commission to explore the possibilities of EU level Quality Seals.5 The ministers expressed concern about the possible exclusion of sectors in society that do not enjoy easy access to the internet. Ministers acknowledged the need to widen the provision of public access points to the internet to facilitate wide citizen accessibility to appropriate health related information. Ministers noted that such access points and publicly supported health related websites should comply with guidelines on Web Accessibility.6 Implementing and sharing best practices of eHealth Ministers agreed to share experiences on the utilisation, efﬁciency and impact of eHealth applications, and to assist the Commission in further dissemination of information on best eHealth practices. 3 Communication from the Commission concerning the introduction of a European health insurance card, COM (2003)73 ﬁnal, 17 February 2003 4 COM (2002) 667 ﬁnal 5 Decision N◦ 1786/2002/EC of the European Parliament and the Council of 23September 2002 adopting a programme of Community action in the ﬁeld of public health(2003-2008) - Commission 6 Communication from the Commission concerning eEurope 2002: Accessibility of Public Web Sites and their Content COM (2001) 529, 25 September 2001

Ministerial Declaration

37

Ministers supported concerted actions to address particularly the development of standards enabling interoperability of diverse systems and services and to especially explore the possibilities of open source applications for achieving this objective. Ministers took note of the best practices in the utilisation of eHealth technologies identiﬁed and presented at the conference and agreed to explore further how best to use them within their countries, across Europe and internationally. Ministers invited the Commission to further reﬁne and develop assessment methodologies for eHealth ICT applications. Looking to the future The ministers recognised that full exploitation of eHealth goes beyond local information systems and Internet based provision of information to integrated or linked eHealth systems, that serve the needs of citizens, patients, healthcare professionals, health service providers as well as policy makers. Ministers welcomed the Commission’s initiative to explore the possibilities to promote co-ordination at a European level, in order to meet the targets and objectives laid down in the eEurope 2005 Action Plan and the Programme of Community Action in the Field of Public Health (2003-2008), and liaising with other Community initiatives as appropriate. Ministers encouraged Member States, Acceding and Associated countries as well as EFTA countries, to take, as appropriate, effective legislative, executive, administrative and other measures, to promote the adoption and use of eHealth applications. Ministers noted that the full exploitation of the beneﬁts of eHealth technologies requires continued commitment to the development and use of a robust, secure and interoperable infrastructure, as well as to wide availability and use of broadband communications to maximise the efﬁciency of eHealth systems and applications. Ministers acknowledged the importance of continued commitment to the implementation of eHealth applications, as agreed to by the Heads of State through the eEurope 2002 Action Plan and noted that benchmarking of such implementation will be carried out under the eEurope 2005 Action Plan. Ministers encouraged the continued investment in research and technological development7 , ensuring steady advancement of European eHealth technology applications that meet European demands for conﬁdentiality8, data security and interoperability. 7 Comm (2002) 499 more research for Europe towards 3% of GDP 8 Directive 95/46/EC of the European Parliament and of the Council of 24 October 1995 on the protection of

individuals with regard to the processing of personal data and on the free movement of such data (OJ: L 281, 23/11/1995, p.31–50)

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Ministerial Declaration

Ministers noted the successful collaboration on issues related to eHealth with the World Health Organisation, the Council of Europe and the OECD and encouraged its further continuation. Ministers welcomed the initiative of the Irish Government to take stock of further eHealth developments at the second eHealth Conference in 2004.

1. National and Regional Health Information Networks

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E-Health I. Iakovidis, P. Wilson and J.C. Healy (Eds.) IOS Press, 2004

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Sjunet – The National IT Infrastructure for Healthcare in Sweden Gustav MALMQVIST Director of ICT, County Council of Västernorrland, Sweden K.G. NERANDER Project Manager for Sjunet, Carelink ∗ Mats LARSON CEO, Carelink ∗ Abstract. Sjunet is the Swedish Health Care Network comprising an infrastructure for communication between hospitals, primary care centres and home care. It is also hosting a wide range of services from national authorities and health care service providers and vendors of health care systems. Sjunet allows secure transmission of health care data and applications on an IP-network separate from the Internet. The network is used for telemedical videoconferences, teleradiology, remote access to applications, database access, secure e-mail, EDI-messages and IP telephony. It is also useful for e-learning in medical education and further training for health personnel. Carelink is responsible for Sjunet in close co-operation with the county councils and other actors within Sjunet. Hence, Sjunet is as much a co-operative network as it is a technical communication platform for Swedish health care.

1. Background Seven county councils initiated Sjunet as a project in 1998 within the R&D programme “ITHS” funded by The Swedish Knowledge Foundation and the Federation of County Councils. ITHS and the seven county councils shared the initial investment of 1,400,000 Euros equally. Since 2001 Carelink, a collaborative organisation for ICT in Swedish health care is responsible for Sjunet in close co-operation with all the county councils and representatives for the private care providers and local authorities. The main argument for establishing a separate health care network was the need for a secure network with high availability, for medical applications and telemedicine. All county councils had their own secure regional networks but the only interconnection between them at the time was Internet. 2. Description of Sjunet Practically all Swedish hospitals and primary care centres as well as some national authorities and vendors are connected to Sjunet. It is used for both telemedicine and administrative communication. The network infrastructure allows secure communication and * Carelink is an organisation for national co-operation to promote the use of ICT in Swedish healthcare.

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distribution of patient data, pictures, medical applications and services for which the Internet is not acceptable. The idea from the beginning was to form a layered infrastructure consisting of a secure network (1), a set of common services (2) and telematics applications (3). Sjunet is continuously under development especially what regards establishment of new services and connecting other branches of the health care and more service providers. 2.1. The Network Sjunet is an IP-based broadband network, connecting all Swedish hospitals, primary care centres and many other health services. Sjunet is built up of nodes connecting the ﬁrewalls in the 21 county councils and regions separate from the Internet. Users connected to a county council network can reach either the Internet or Sjunet depending on what kind of service they need to access. In its ﬁrst version, Sjunet was set up as a virtual private network (VPN) with “tunnels” on the Swedish part of the Internet, and was delivered by the Swedish telecom company Telia. The VPN technology guaranteed that information was not accessible from or communicated through the public Internet and the network provider guaranteed that the available bandwidth was sufﬁcient for applications and services. From 2003, the network is based on VLAN technology from Song Networks with built in redundancy, technically separated from the Internet, as shown in Figure 1. The separation from Internet means better availability what regards bandwidth. The bandwidth is determined by how much each county council purchase for access to Sjunet. Normally 10-100 Mbps is sufﬁcient for most applications. 2.2. Usage of Sjunet From the very beginning of Sjunet, the need for certain common services was obvious. Some services relate to the functionality of the network infrastructure. Others are prac-

Figure 1. Sjunet as VLAN with redundant connections between county councils.

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tical services where a need for co-operation has been identiﬁed or for which it is more cost efﬁcient to procure the service in collaboration. Infrastructure services are e.g. DNS, protocols, nodes and directory services. Of special interest is the provision of security certiﬁcates, following the PKI standard, from a CA-server (Certiﬁed Authority) that allows decryption and authentiﬁcation of messages sent on Sjunet. All hospitals connected to Sjunet can make use of this service, which is procured by Carelink from the vendor Steria. The PKI infrastructure relies on another joint service, the health personnel directory. This is built up with X500 directories in each member organisation within Sjunet. The directory allows the use of secure messaging as well as providing correct contact details for health care staff in Sweden. Some examples of successful services and collaborative applications are described below, but it is worth mentioning that there are a lot of other applications in day-to-day practice or tested in pilot projects. 2.2.1. Electronic Prescriptions Electronically transmitted prescriptions enable Swedish physicians to communicate effectively and swiftly with all the pharmacies in Sweden. In addition, the time they save can be devoted to the patient. Physicians write the prescription in their electronic journals or from a web-service and it is then transmitted automatically from the physician’s computer to the pharmacy. The patients go to the pharmacy, identify themselves and get their medicine and the information about how to use it. The electronic transfer leads to increased reliability in handling prescriptions and less misunderstanding. 2.2.2. Telemedicine in Neurophysiology in the Region of Uppsala The use of ICT and telemedicine in the ﬁeld of neurophysiology started before Sjunet. The BITNET project established collaboration between Uppsala and the Baltic states.

Figure 2. Sjunet used for electronic prescriptions.

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This pioneer work was also a trigger to start Sjunet, ﬁrst as a network in the region of Uppsala. With use of Sjunet, specialists at the neurophysiology centre in the University Hospital of Uppsala, can analyse results from examinations at local hospitals in the region or elsewhere in Sweden i.e. electro-encephalography (EEG) and nerve conduction studies (CV). Special software developed at the university clinic is used for analysing the examination data, which stays at the local clinic. 2.2.3. Teleradiology Service from Barcelona When the radiology department at SollefteåHospital failed to recruit a specialist for MRI (magnetic resonance imaging) they choose a hitherto unusual solution. Skilled radiology nurses conduct the MRI examinations and the images are sent to the newly established Telemedicine Clinic in Barcelona for analysis. This is done with a certain portion of the examinations in order to lower the pressure for the radiologists in Sollefteåand to make it possible to shorten the waiting list. When the examination is done, the images are sent to Barcelona and the answer arrives within 48 hours. Since the start in mars 2003 the waiting time for MRI scan has been cut to the half, also at nearby hospitals in Örnsköldsvik and Sundsvall which sends patients to the smaller hospital in Sollefteåfor this examination. The pilot project between Sollefteåand Barcelona, successful so far, is planned to continue for six months with an amount of 400 examinations. Within that period the project will be evaluated what regards technical possibilities, judicial restraints and economic effects. After the pilot period, if successful, it is likely that this service will be procured for regular operation. Telemedicine Clinic is also delivering this service to the Hospital of Borås in southern Sweden and to hospitals in the region of Stockholm.

Figure 3. Sjunet as a platform for European collaboration between northern Sweden and Barcelona.

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2.2.4. Videoconference Platform in Örebro Up until now, the most common technology for videoconferencing has been ISDN. In Swedish healthcare, there are hundreds of those systems. They are used for telemedical consultations, clinical rounds, care planning and administrative meetings throughout and between the health care organisations. It is well known that using videoconferencing is a matter of habits. It is also a matter of complexity or simplicity. The easier it is to connect the more you might use this way to meet. Recently there have been expressed wishes to use videoconferencing even more in many county councils and municipalities, due to large deﬁcits in health care budgets. It would be a way to avoid costly travelling. Even though, it has to be simple to reach each other, regardless of technology or type of network. Carelink has co-ordinated a joint procurement of videoconference equipment for all county councils to assure functionality and compatibility of the technology. There is however a need both for ISDN and IP-based videoconference facilities as well as videoconferencing over the Internet. In order to make interconnection possible, a videoconference platform was procured and the County Council of Örebro manage this for all connected health care organisations. The platform or bridge can connect many parties regardless of technology. It can be used as a point-to-point connector between the different networks or as hub for multi-part videoconferencing. The videoconference platform in Örebro is an Accord MGC-100 with possibilities to connect IP, ISDN and PSTN system, ﬁnanced by Carelink. In each health care organisation, a gatekeeper keeps track of all available equipments in that domain. This is also used for assigning aliases to IP-based equipment, making it easier to ﬁnd the right counterpart. Sjunet also hosts a video number directory and the staff in Örebro support all those who want to use the common platform.

3. Beneﬁts from Sjunet Since Sjunet is a national infrastructure, which is gradually developed and has a large variety of usage it is difﬁcult to evaluate the total impact of the network. Proven or potential beneﬁts from collaboration with use of Sjunet can be cost saving or improve quality of care or access to health care services. 3.1. Cost Beneﬁts Using Sjunet means lower costs for transferring information. A cost-beneﬁt (CB) analysis in Uppsala County Council estimated a yearly net beneﬁt of € 600.000 from using Sjunet compared to other alternatives, in that geographic area. [1] This CB analysis was done with a method called PENG in which identiﬁed utilities are grouped in accordance to how certain the economic beneﬁt is and where it appears. There are three of these utility groups: “Direct beneﬁt”, “Indirect beneﬁt” and “Intangible beneﬁt”. A sum of all three groups minus the estimated costs for achieving the beneﬁt is called “Net beneﬁt”. To make an estimate for the national cost-beneﬁt of Sjunet using the CB analysis in Uppsala region only the direct beneﬁts were used, so as to not up-scale the inbuilt uncertainty in the two other groups. Even then the national net beneﬁt from using Sjunet compared to alternatives was estimated to 7,9 million euro a year.

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Figure 4. Types of beneﬁts from using Sjunet.

Most of the utilities shown in Figure 4 consist direct, indirect, and intangible beneﬁts. In the CB analysis it is only the beneﬁts for the health care organisation that is valued. In addition there are beneﬁts for the patient and for other parts of society. Although the estimated economic beneﬁts depend on the volume of services utilised, the CB analysis demonstrates the potential contribution that Sjunet can make toward more efﬁcient use of resources in the Swedish health care system. The greatest economic gains result from improved collaboration, lower staff costs and less physical transportation. 3.2. Access to Care Improved access to care would be a beneﬁt for the patient resulting from the caregiver using Sjunet or other ICT solutions in order to use competence far away or collaborate with partners in other parts of the country. It might also be that a more efﬁcient work process reduces lead-time and decrease waiting lists. Remote services make it possible to bridge lack of resources or expertise in some areas or specialities. In Västernorrland, transfer of MR images from Sollefteå Hospital to Telemedicine Clinic in Barcelona has drastically reduce waiting time for MR examinations from over a year to a couple of months. In northern Sweden, advanced radiation therapy is offered in Sundsvall with dose planning and ﬁeld simulation delivered by specialists in Umeå. This allows the patients to be treated closer to home, avoiding tiring travel.

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3.3. Quality of Care By using specialist resources, regardless of physical location, it is possible to increase quality of care. Co-operation among specialists will improve the diagnostic process and treatment. Remote EEG and EMG examinations allow more efﬁcient use of expertise in neurophysiology, shorten diagnostic lead-time and improve treatment planning. Using Sjunet for teleradiology, diagnoses are made more rapidly, which could even save lives. Collaboration between pathologists using Sjunet allows for sharing of highly specialized knowledge about different form of cancer and thus improves the certainty of diagnoses. Improving quality of care is obviously a result of improved access to medical information, be it collaboration with other doctors or access to medical databases. There are in Sweden approximately 50 quality registries that are used for follow up, clinical benchmarking and research. A few of them are connected to Sjunet and the plan is that all of them should be services on Sjunet. Even if Internet is good enough for access to general medical resources Sjunet might also be used for sharing jointly procured database resources.

4. Discussion Using health telematics is easier and more cost efﬁcient with a permanent infrastructure, such as Sjunet, than a variety of non-permanent connections. The concept of infrastructure includes standards, rules, security and availability. It is however a long and complex process to build the infrastructure and as with other forms of infrastructure it calls for continuous improvement. Building a national health care network in Sweden is also complicated by the fact that there is not a single national health care provider or health care authority. The health care services are delivered by independent politically governed county councils (21) and local authorities (290) and they are each responsible for ﬁnancing their respective ICT solutions. There has been some national funding of ICT projects for health care. ITHS, which co-ﬁnanced the regional project that ﬁnally became Sjunet, was such a development program. Carelink manages Sjunet, with a steering committee and several working groups with representatives from all county councils. This guarantees the regional and local commitment for Sjunet and enhances the co-operation between county councils and the spread of best practice between actors. A recent national report about telemedicine and telecare in Sweden concludes that there is a need for active government initiatives and ﬁnancial support for increased and broader use of telemedicine. [2] (p 18) If the development is not supported by national strategies, co-ordinating activities and additional funding there is a risk that the utilisation of telemedicine applications will take too long to develop and will be unnecessarily expensive. The overall goal is to increase the collaboration and co-operation between different health care providers for the beneﬁt of the patients. In the same report further development of Sjunet is stressed in order to speed up the introduction of telemedicine. [2] (p 13). The overall goal and thus the purpose of building a national healthcare network is to facilitate better use of resources and increase collaboration between hospitals and other healthcare providers. The pure existence of the infrastructure is then only a prerequisite.

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There is a need for provision of services, co-ordination, technical maintenance, training and support for end-users. A crucial issue is the users preparedness to use resources on the network or change familiar ways of working with the patient. It seems like this is fairly easy for frequent tasks where the use of the network is much more convenient compared to other alternatives. The use of the national telephone registry on Sjunet is an example where the former way was to either look for the patient’s number in a telephone book or manually call a number service. The new service is indeed frequently used at all Swedish hospitals, lowering costs and making work easier. Other new procedures might be more difﬁcult to adopt and get used to, not the least seldom used connections or those where you still have old familiar but less effective alternatives. The newly implemented video platform on Sjunet enables use of different types of equipment and will make it easier to reach a collaborating partner in Swedish healthcare without knowing the ISDN number or IP address. This service will also facilitate instant connections regardless of location and number of participants. Although the technical solution is up and running, the challenge is to market its possibilities and support endusers. Local videoconference equipments at hospitals and clinics should be conﬁgured for communication with the platform and users should be informed on how to connect. Whether the beneﬁts from the use of Sjunet will be realised or not might depend on several factors. Keeping in mind that the beneﬁts mostly will derive from the use of services and applications and not from the infrastructure by itself, a natural factor would be the number of services and applications. It is also obvious that the usage will depend on Sjunet being known to end-users who are also conﬁdent that it is better than alternative procedures. Among those who actively work with the development of Sjunet it is known that the implementation will take time, and probably never ends since new possibilities may be added over time. Even though, it is desirable that Sjunet as soon as possible will stimulate more and more cost efﬁcient collaboration within the Swedish health care. In an article from 1995 Cavaye describe the sponsor-adopter gap when implementing inter-organisational systems (IOS). [3] In this theory there is a difference between those who initiate and implement an IOS and those who are expected to use it for interchange between organisations. Applied to the case of Sjunet, Carelink and joint groups working with the implementation may be the sponsors while physicians, health care staff and local managers are adopters. According to Cavaye the sponsors tend to be innovative, convinced of the potential for the solution, aware that implementation will take time and prepared to wait for the beneﬁts. Adopters on the other hand, is a population that includes innovators but the majority is conservative. There is on the adopter side less awareness of the technology, more need for justiﬁcation of the system and demand for immediate pay back. In order to bridge the gap, which also includes sponsors and adopters being in different phases of awareness and knowledge of the system, marketing of the possibilities is one remedy. Another is to create possibilities for exchange of experiences between peers, in order to deal with problems or convince each other. Both these solutions have to be considered in the forthcoming work with Sjunet. There is probably a constant need for marketing of Sjunet and more information to end-users. Though it seems that the management of Sjunet is organised in a way that secures a high degree of involvement from county councils promoting the suggested exchange between users. Even if the use of Sjunet is steadily increasing and developing, there is obviously a need for a national strategy for the further development of the infrastructure. The goal is to use efﬁcient communication between health care providers to bridge lack of resources

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and increase quality of care, primarily in Sweden but also with other parts of Europe. However, more collaboration over organisational and national boundaries is a challenge for the management of the health care organisations. It creates possibilities of achieving beneﬁts such as those demonstrated in the CB analysis of Sjunet in Uppsala County. But a drastic change of procedures might also be threatening to managers in health care. Michael Rigby has analysed how new alliances in health care delivery might at the same time be beneﬁcial to management but also threatening to organisational control. “The primary objectives are clearly positive and beneﬁcent, but the adverse effects have the potential to be very damaging. Thus there is a need to consider in a new light the effects of the new health informatics technologies, both in terms of managing the organisation, and in terms of creating a management environment for the information technologies which introduces accountability without stiﬂing innovation or beneﬁts.” [4] (p 102) This implies that the forthcoming work with Sjunet within Carelink need also to address the management issues and national strategies must take into account potential effects of new boundless procedures on organisational control, quality and accountability. The experience so far from Sjunet is that it takes time and effort not only to establish the technical infrastructure but also to disseminate the possibilities to health care providers and end users. One of the positive side effects is that the continuous collaboration between county councils and local authorities needed for this creates unexpected possibilities for co-operation also about non-ICT issues. Whilst only a few years ago each health care provider created their own systems and applications there is now increasingly sharing of experiences, solutions, services and applications. Hence, Sjunet is not only an infrastructure and a platform for collaboration, but also a framework for joint development of the Swedish health care.

References [1] Dahlgren, L.E., G. Lundgren, and L. Stigberg, Öka nyttan av IT inom vården. 2003, Stockholm: Ekerlids förlag. [2] Socialdepartementet, Vård ITiden (IT in Health Services of Tomorrow) - English Summary, 2002, DS 2002:3, Stockholm: Regeringskansliet (Swedish government), http://social.regeringen.se/propositionermm/ds/pdf/2002/ds2002_3_en.pdf [3] Cavaye, A.L.M., The Sponsor-Adopter Gap - Differences Between Promoters and Potential Users of Information Systems that Link Organizations. International Journal of Information Management, 1995. 15(2): p. 85-96. [4] Rigby, M., The management and policy challenges of the globalisation effect of informatics and telemedicine. Health Policy, 1999(46): p. 97–103.

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E-Health I. Iakovidis, P. Wilson and J.C. Healy (Eds.) IOS Press, 2004

Building the Regional eHealth Network. The Andalusian Experience Francico VALLEJO SERRANO Regional Minister of Health, Junta de Andalucia, Spain

Andalusia in Europe Andalusia is one of the 17 autonomous communities created after adoption of the new Spanish constitiution in 1979 This constitutional reform, after Spain regained freedom and democracy, determined, a quasi-federal political structure where the competencies of state are shared amongst central government, the governments of the autonomous communities and the local authorities (the municipalities). Among the 17 Communities, Andalusia is one of the largest, and most populated, covering an area of 87.600 Km2 and with a population of 7 and a half million inhabitants (more than 18% of the whole Spanish state). It is one of those that has shown, over the last few years, a more dynamic economy and a capacity for innovation than some of the other regions It has maintained an economic growth above the European average, in a continuing process of convergence, although the average family income is still below the European Union average (of the EU15). In the last 20 years, Andalusia has undergone the same kind of transformation that in many other regions spanned 100 years. Today it is a dynamic region, with an emerging economy and an infrastructure perfectly comparable to many other European countries. Along with this economic development, Andalusia has also shown an unprecedented advance in welfare policies, amongst which those concerning education and health, were essential and were given priority through regional government actions. From a political point of view, Andalusia has legal autonomy an autonomous government and a legislative body (the Andalusian parliament). In health matters it takes on all tasks such as planning, insurance, management and provision of Health Services through the transfer of these tasks by the state to the autonomous government.

The Health System in Andalusia The Andalusian Public Health System offers complete cover to the whole population with a wide range of services, with 33 public hospitals and around 1,300 health centres and surgeries. The annual budget (2003) is around 6,200 Million Euros (about 850 € per person per year) and this uses 7.5% of the Gross Interior Budget of the community. Around 78,000 people work in the system at the moment (directly employed) of which 13,000 are healthcare professionals.

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The Regional Health Ministry directly assumes the functions of health planning, health regulation and public health. It also holds the responsibility in the upper management level, the co-ordination and ﬁnancing of the health services to the whole Andalusian Public Health System, which in turn is made up of different bodies providing health services. These can be either public or private, although private enterprises must be but linked to the public sector.

HEALTH POLICY GOALS. • •

•

Consolidate and improve the Public Healthcare System. Modernize: Flexibility. Citizen Empowerment. Increase the value of the Public Service System.

The principal agency providing health services (around 90% of the resources) is the “Servicio Andaluz de Salud” (SAS) (Andalusian Health Service) which is an autonomous body of the Andalusian government that provides health services, fundamentally, using its own resources. It is directly publicly owned and managed. The Andalusian Public Health system (APHS) is administratively organised into 8 Health Areas. Within each of these areas, primary healthcare is integrally provided by the SAS (Andalusian Health Service) and is organised into primary healthcare districts (33 in the whole region). A district director leads each district with a technical and management team. The districts are responsible for public health and for the promotion of health and provision of healthcare to the population within their territory. 1,450 primary healthcare centres depend on these districts of which 350 are health centres. Hospital healthcare is provided by the 33 public hospitals, each of which has an assigned catchment area which is made up of one or more primary healthcare districts. 30 of these hospitals are from the SAS and 3 are public hospitals constituted as singular autonomous bodies in the form of publicly owned companies. These three hospitals are assigned directly to the Regional Health Ministry and are the most recent hospitals in Andalusia set up by the Regional Health Ministry (Costa del Sol Hospital, Poniente Hospital in Almería and the Andujar Hospital in Jaén) in the development of a strategy of diversiﬁcation of the healthcare provision using formulas of public management. This system offers greater agility, ﬂexibility and better opportunities to achieve a higher quality of service to the citizen as well as more efﬁciency. In total Andalusia has 17,900 beds available in public hospitals and 2,800 beds available private hospitals through formal agreements in the Andalusian Public Health System network. This gives a ratio of 2.6 beds per 1,000 inhabitants. It must be pointed out that although Andalousia has a territorially based health organisation, fundamentally at the moment of planning the offer, the citizens have free choice of, on the one hand their family doctor and paediatrician, and on the other hand, specialists and hospitals. Their choice can be anywhere within the Autonomous Community.

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Beside the SAS and the Public Company Hospitals, Andalusia has a publicly owned company that manages, with the rest of the resources, all the medical emergencies as well as the healthcare telecommunications network and the management of medical transport. It is named “EPES” and is otherwise known as “061”. In order to give an idea about how the system functions, some relevant facts that will help to demonstrate the volume of transactions that our health system generates annually are provided below. This information has been vital when establishing co-operative working networks. • • • • •

Something over 40.5 million primary healthcare attendances (including casualty attendances) About 600,000 hospital admissions per year Nearly 10 million specialist consultations. More than 3 million hospital casualty attendances Half a million surgical operations per year (waiting list for operations around 50,000 patients, with an average waiting time of 64 days and practically no patients waiting more than 180 days).

E Health Strategy in Andalusia In this context, the Andalusian government, within a global strategy of technological modernisation of the Community, was fully aware that Information and Communication Technologies have one of their principle ﬁelds of application in the health sector, and that this is, among other service sectors (ﬁnancial, commercial etc.), one of those that can most beneﬁt from these technologies, generating added beneﬁts and encouraging the quality and efﬁciency of the organisations. This has meant an important investment and a strong wish that these technologies become part of the public health service. We are convinced that, correctly guided, these technologies can strengthen the values that are the foundations of our work: • A public service whose object and centre is the citizen. • Added beneﬁts in terms of improved accessibility, transparency in the information and efﬁciency in management processes. • Equity in the sense of favouring equal opportunities of access for equal needs. For Andalusia it is important to orientate this process adequately so that the new technologies do not increase the inequalities between citizens and do not encourage a dual society (those who have connectivity and those who don’t). The modernisation of Andalusia is anchored in driving the new economy and the new technologies, but is built on values of equity, freedom, equality of opportunity and solidarity. The interdependence that comes with Andalusia being a European Region, obliges us to use these developments as instruments to promote the free movement of workers, people and patients, and to move towards what will, without any doubt, become a future European Health Area, with common groups of services, and interoperable quality standards.

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Basic Inspiring Principles • Quality as the driving force: - A coordinated and efficient public system in continual growth. - Quality-driven for rapid response time, accessibility, continuity, familiarity, comfort and efficient performance. • Accessibility and Transparency: - More and better-informed citizens with increased freedom to make decisions, take greater responsibility over their own health, and have equal opportunities gained through transparent and accurate information. • Social Control: - Active social participation on an individual and collective basis. - An organization that listens to its citizens and allows them to participate in making decisions. • Professional Participation: - Obtaining, recognizing and stimulating commitment of professionals is the key to success and to secure their essential participation.

In this environment, there are two key protagonists for our strategic focus: the citizen and the healthcare professional. The Andalusian citizen, who is now more educated, better informed, more demanding of health services, and expects easy access, speed and quality of healthcare and preventive measures. The healthcare professional is being facilitated to interact more efﬁciently and quickly with his or her colleagues, administration and, of course, patients. The healthcare professional can increasingly use the PC, internet, and mobile telephony technology to access patient data and interact with other professionals any time and in any place. The reality that is to come, where the Andalusian healthcare professionals can make technical consultations from a PC or through any other channel, using a digital disc reader, a high deﬁnition graphics card, through new generation mobile phone technologies, being able to reproduce, via Internet or Intranet any piece of data of the Medical Records of a citizen, a consultation between other professionals, researchers, and scientists anywhere in the world, or establish on-line scientiﬁc working groups, on subjects within their area of specialisation, is no longer far from being achieved. Andalusia, is now actively planning the integration of all the systems and technologies orientated towards the citizen, whose nucleus will be the medical information and whose platform will act integrally so as to guarantee maximum privacy and security in the electronic transactions, with accredited and certiﬁed applications. With this vision and with these players Andalusia is designing the E Health Strategy of Andalusia. The core of this strategy is the integration of all the medical information about each citizen, so that it is available where and when it is needed for their medical care, thus improving accessibility to the information, the healthcare process and the quality of the service. This integration occurs in the “Unique and Shared Health Record” between primary healthcare and specialist care. This makes up the “Diraya Project”.

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CITIZENS AT THE CENTRE OF THE SYSTEM Citizens are the centre of the Andalusian Public Healthcare System and in terms of quality their satisfaction is of utmost importance. Measures focused on citizens and the development of healthcare services: • Surgery Waiting Lists: The Andalusian government was the first in Europe to introduce the legal right to a guaranteed maximum waiting period for surgery. This information is updated periodically and available on the Department of Health web page. • Diagnosis Waiting Lists: The decree regulating diagnosis waiting lists as well as specialized consultations is to be approved this year. • Dental Care for Children: Free from 6 to 16 years old, beginning in stages with children who are turning 6 to 9 years old this year (320.000). These children have already a family dentist. • Organized Participation in Health Policy: Area Health Committees by Province. Annual survey on user satisfaction: The largest in Spain. Citizen service plan: INTERS@S is the first virtual healthcare office in Spain. In real time, one can choose a physician or primary health centre, makes a change of address and consults the user data base (7,400,000 citizens). • Family support measures: -Chronic homecare plans and community nursing activities. -Plan to support families with Alzheimer patients. -Home rehabilitation mobile units. • The Right to a Second Medical Opinion. • Law on Living Wills

In order to get where we are today, we have had to take some important steps. One of these was the “TASS Project”, whose objective was to provide all Andalusian citizens with an “intelligent health card” with all the functionalities necessary for the interaction between the citizen and the health services. Today we are ﬁnishing the distribution process of this card and as from the beginning of this year it has become the sole identiﬁcation document of the users in the centres of the Andalusian public health system. Intimately linked to this project is, logically, the Computerisation of the primary healthcare centres. This project has meant the creation of the computer network of interconnected health centres (the biggest in volume and extension in Europe) with a total of 1,400 primary healthcare centres and 6,533 workstations. The use of the card by 7 million citizens, key to access their own health records, implies the computerisation of the care process and the connection of the health centres and surgeries to the corporate network of the Andalusian regional government. This pro-

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vides the whole organisation with connectivity and capacity to share all the necessary information. One very important impact of this project has been the professional culture of the primary healthcare professionals. This is shown in the intensive level of use of the system and the constant demand for incrementing the services and renewing the equipment. Today more than half the prescriptions billed to the Andalusian public health system are prescribed using the computerised system. The backbone of this computer system is the “Users Database (UDB)”. This is a large database containing the one way information from each user of the Andalusian public health system, and which links this information to the medical information that accumulates about each one. This database allows us to: • Know the insurance situation of the people • Manage, in consequence of this information, their rights to the health services (if they have the right to free prescriptions or not etc.) • Know the individual free choice of family doctor or paediatrician. • Link the choice to the per capita retribution system for the professionals, having a direct effect on their retributions. This database is subject to numerous security and quality control processes (periodical cross-checking with the social security database, national death index, and other databases of the health services of the National Health System). Its management is very simple and is done via a web application which allows interaction with many health information systems to which it provides administrative information about the users. The inclusion of the clinical data in this “Users Database” is today a reality and it will extend deﬁnitively with the “Digital Health Record Project”. The health information of a patient will be accessible once authorised (the key is the card) by the doctor, at the time and place they are attended, thus avoiding repeated tests and clinical duplication. This medical record will be shared by both primary care and hospitals, and the information will be integrated and can be shared. It therefore favourised continuity of care during the care processes. “Integrated and at a known location” does not mean that everything is physically together in one place. It means that it will be distributed in connected databases, thus ultimately the digital medical record will be a group of pages of information, linked by a common heading which will allow them to be identiﬁed and grouped. Let us say that these pages will be sewn together, in a logical manner, by the identiﬁer of the user. It will be carried by the communication network of the Andalusian public health service Intranet. This Medical Record will be integrated in the “User Data Base”, (UDB) which will organise all the information using the unique and secure identiﬁer that will be the user key. The application is designed and prepared for telematic use: it allows the telematic sending of requests, test results, digital images, reports etc. It has been built following the recommendations of teams of professionals. The system feeds the database (UDB) and allows a homogeneous exploitation of the information. The information is enriched by data from other systems, is cross-referenced and acquires new dimensions, converting data into information and this information into knowledge. In this way the professionals can exploit the information and so help clinical and epidemiological investigation.

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In the area of improving accessibility, these projects come together in the “Centre for Information and Services to the Citizen”. Appointments made easy and centralised. One of the recurring problems that the users identify in their relations with the health services is the difﬁculty in contacting their centre by telephone at peak times in order to arrange an appointment. Given the big differences in time between the peak demand periods, we have considered the most efﬁcient solution to be that of setting up a centre that is responsible for managing all the appointments for primary healthcare centres in Andalusia through one telephone number. In other sectors this is called a “Call Centre”. This centre will be connected to the UDB in order to access all the administrative data on the users and will also have access to the work timetables of the professionals of the centres that will be managed from here as well as from their own health centre. The project evolves progressively, increasing the number of lines until it becomes the principal information and access point of the citizens to the health system, by telephone or by internet, working 24 hours a day, 365 days per year. Along the same lines of improving accessibility, we have the “Prescription XXI Project”, whose mission is to make managing pharmaceutical prescriptions easier making it simpler and more secure for the citizen. Computerised prescriptions travel via the network to a database called the “Dispensation Centre”. The doctor creates a type of medication account for a speciﬁc patient, in which all the medicines for that patient are listed along with the necessary indications including the period of treatment. When the patient needs to pick up the medication, he or she can go to the chemist without having to repeat the appointment with the doctor because the chemist, by communicating with the Dispensation Centre, will know the medication he or she has to dispense. Once dispensed, this is noted in the database, one can then know the level of compliance to the treatment of each patient. In this way surgery appointments are eliminated whose only objective are to renew the prescriptions of chronic patients. In order to administrate all this integrated system of technologies and facilitate the use and availability of the computerised systems on the part of the users and professionals, the “CEGES” (Systems and Technologies Management Centre) was developed. This centre, which works 24 hours a day, 365 days a year, was set up in June 1998, with the objective of meeting the requests deﬁned by the level of service optimising the operation costs. To do this, the centre offers, amongst others, the following services: Centralised management and control of remote resources as well as the detection and correction of anomalies automatically from the Centre, thus reducing resolution times and minimising the impact on the service. User Service Attention Centre provides multichannel attention 24 hours a day 7 days a week (24/7/365) to solve any problem or doubt that may occur. (900 toll-free number) Various Infrastructure Services: The Systems and Technologies Management Centre provides and manages the communications network that connects the health centres between themselves and between other bodies of the Ministry of Work and Social Affairs. And the centralised control of the state of the network and the equipment in the entire health organisation. There are other projects, already set up or in various phases of development, including, for example: The corporate intranet of the Andalusian Public Health Service is one of the largest in Europe with a virtual work environment shared by the healthcare professionals.

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The Telemedicine EVISAND project that is currently working and connects rural emergency control centres with their corresponding reference hospital. Some data can enlighten the beneﬁts at this early stage: • 76.1% of patients virtually helped did not need to be transported to reference hospitals. • EVISAND avoids 20% of previous health transport, saving mobile health resources. Regarding efﬁciency, EVISAND proves that at least 82% of screened patients that are referred to the Hospital needed further diagnostic procedures that could not be provided at the consultation site. Although the cost-beneﬁt analysis being conducted has not produced the ﬁnal ﬁgures, some economical data of the Andalusian Public Healthcare System can illustrate the possible impact on the budget in a longer term: • In 2001, 13.672 KEuros were spent in Emergency Health Transport, with an increase of 6.86% over the previous year. • 15.248 KEuros were spent in the same period in Programmed Health Transport, with an increase of 17.90% over the previous year. Though there are speciﬁc alternatives for social related matters, it is uncommon to ﬁnd networks, as EVISAND, where health and social care are interlinked (i.e. nursing homes). A last aspect, but not the less relevant, is the fact that EVISAND, right now, is connecting social associations of relatives with patients affected with mental diseases. The System will enable communication with other associations, with physicians in charge of nursing homes and will also connect relatives to patient’s admitted at geographically distant healthcare or social facilities. The Alzheimer Plan, based on the creation of day centres where is made intensive use of information technologies and teleconsultations, is supported by the previous mentioned projects. The “MUNDO DE ESTRELLAS” (World of Stars) project that provides a virtual environment of play and communication for children in hospital, has an extraordinary impact on their recovery and improvement and is being deployed in public hospitals to guarantee the access of all children in Andalusia. It offers universal coverage over all the network of the Regional health system. From the IT point of view, MUNDO DE ESRELLAS project goes far beyond than playing a videogame. It is about collaboration and mutual support in a socially inclusive environment. It has a multidisciplinary team behind its development with a balanced approach to medical, social and technical aspects. MUNDO DE ESTRELLAS, ﬁnally, is a social effort giving response to children with different age ranges, promoting collective and cooperative work. It is in fact a tool for solidarity, a crucial need for hospitalised and chronically ill children. Projects that, to sum up, have a more selective target, but nevertheless have an extraordinary strategic importance for the main function of our organisation, which is meant to provide preventive measures and high quality healthcare services to every citizen. The eHealth Strategy of Andalusia has opened up a ﬁeld in our public health system with inﬁnite possibilities to improve the quality and personalisation of the services. The support provided by the European Union and other bodies that are collaborating with us,

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counting on highly solvent business partners with very high professional capacities, as well as the use of well consolidated new generation technological platforms in which most importantly have made integration and security possible, are the keys to our success.

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MedCom: Danish Health Care Network Henrik BJERREGAARD JENSEN, Claus DUEDAL PEDERSEN Danish Centre for Health Telematics, Odense, Denmark Abstract. The Danish Ministry of Health founded MedCom back in 1994. MedCom is acting as an umbrella project organisation, gathering health providers, health care professionals and industry in coordinated, nationwide projects, all aiming to reach large-scale dissemination in few years. Almost all Danish health care organisations and IT-vendors are participating in the projects and today more than 2.500 health institutions are communicating around 2.3 million messages monthly – 60% of the total clinical “cross-sector” communication in Danish Health. In the next years the standards are going to be reused inside hospitals and a nationwide secure health care Internet implemented large scale.

MedCom – The Danish Case Two percent of total health care expenditures are used for daily communication of the most frequent used letter types between primary and secondary care, e.g. prescriptions, laboratory results and discharge letters [1]. 10% of hospital manpower costs are used for the similar communication within hospitals [2]. For a number of years, the Danish healthcare sector’s use of information and communication technology has witnessed a near explosive development. From the initial tentative experiments of electronic communication between general practitioners and pharmacies till today, when millions of messages are exchanged electronically between several of the healthcare sector’s players and when numerous other forms of electronic communication are developing. Very early in the process, the Danish development work took on an international dimension. The background was a Danish desire to enter into close teamwork with related communication projects abroad to gather inspiration and to be inspired. In short, to reach a synergy effect in the correlation between these projects across borders. Experience has shown that aiming at international teamwork was both right and necessary. Numerous examples show how national project experience has been an advantage internationally – and the other way around. To a great extent the situation and perspectives for the use of information and communication technology in the Danish healthcare sector are characterized by ideas and experience from similar projects in practically every EU country. At the same time we are witnessing that also the Danish development work has left vestiges in the way other countries have chosen to use the opportunities of the new technology.

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The history of MedCom goes back to the end of the 1980s, when interest in electronic communication between the various parties in the healthcare sector grew in Denmark as well as other European countries. Three large regional EDI projects started in 1992: FynCom in Funen County the Odder project in Århus County KPLL in Copenhagen. To counteract the tendency for the counties each to “re-invent the wheel”, the County of Funen in 1992 submitted a proposal to the Ministry of Health to organise a joint nationwide project bringing together national government, the counties, private companies and healthcare organisations, under the name of MedCom.

MedCom 1 – Pilots creating the standards (1994–96) In 1994 Danish Ministry of Health therefore founded “MedCom - the Danish Health Care Data Network”. The goal of “MedCom” was to create an infrastructure for EDI (Electronic Data Interchange) between IT systems in health based on International standards. The network should develop on ordinary commercial conditions where hospitals and GP clinics are buying their communication solution from their ordinary IT vendors. Only the central costs are paid by the organisations behind MedCom. For the present four-years MedCom 4 programme the total central costs are 7 mill Euros. The parties forming the MedCom steering committee are: • • • • • • • •

Ministry of Health (Chairing) Association of County Councils in Denmark (CoChair) Ministry of Social Affairs National Association of Local Authorities National Board of Health Copenhagen Hospital Corporation Danish Pharmaceutical Association DanNet

In recognition of the need for securing communication across individual projects, MedCom was established. MedCom is neither user of nor supplier to the health network; it functions as an impartial prime mover, negotiator and coordinator in the development work. “MedCom” acts as an umbrella programme for local county communication projects, gathering healthcare providers, healthcare professionals and industry in coordinated, large-scale national projects. One of the ﬁrst efforts became the establishment of national communication standards on the basis of international CEN standards. The ﬁve EDIFACT standards were: MEDREQ for requisition, MEDRPT for reply on chemical laboratory studies etc., MEDREF for referrals, MEDDIS for discharge letters and MEDRUC for clearing information – all together covering the six most frequent communication in primary health care. More precise the following e-messages are used: • Hospital Referral, Discharge Letter, Outpatient Report, Doctors Letter between hospitals, GPs and specialists. • Prescription from GPs and specialists to pharmacies covering.

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• Specialist Referral, Specialist Report and Doctors Letter between specialists, GPs and hospitals. • Radiology request and Radiology Report between radiology departments and GPs and specialists. • Clinical Chemical Request and Clinical Chemical Report between labs and GPs and specialists. • Pathology Request and Pathology Report. between labs and GPs and specialists • Microbiology Request and Microbiology Report between labs and GPs and specialists. • Home Care Report, Care Report and Doctors Letter between hospitals, homecare and GPs covering. • Reimbursements to health insurance for all types of health professionals. • Notify messages making it possible automatically and immediately notifying cooperating health care parties when starting or ending treatment and investigations between hospitals and home care.

The ﬁrst system suppliers, primarily for GP systems, were involved based on a wish to build up a market for software solutions for IT communication in the healthcare sector. Standards were tested in local pilot projects. Additionally, intense work was being done to secure dissemination of IT communication, not least through an intensive information effort.

MedCom 2 – Exploitation large scale (1997–1999) After the initial stage MedCom aimed at massive dissemination of the health network. The way to do it was, among other initiatives, co-operation agreements with local

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projects – more than 200 of this type of projects were carried through in the second of MedCom’s project stages. As a part of the dissemination MedCom worked consistently with making the extent of the communication visible by using the so-called EDI-top. This was done both as a part of the information and as a motivating factor for the regional health networks. Another part of the effort was clear and precise information about which software suppliers had been certiﬁed for which communication forms. Parallel with the dissemination of the health network, focus was directed at the need for organizational development in the clinic. Without this element it would be difﬁcult or impossible to harvest the advantages of the new technology. At the end of MedCom 2 all Danish hospitals, pharmacies and laboratories, 66% of GP clinics and 16 local authorities were using the health network. In total 1.3 million messages were exchanged monthly or 44% of all messages [1]. The original aim of MedCom 2 was to reach 68% of all messages.

As a new group of players, dentists were attached to the health network and also local authorities were involved due to the nature of their assignments in the primary sector. Communication of text messages was supplemented with tele-medicine, e.g. transmission of radiographs.

MedCom 3 – Consolidation (2000–2001) With approximately ﬁve years of existence, the health network had proved its worth but also shown its weaknesses. As a core element, the actual standards were not precise enough. There was a need for quality assurance. In close co-operation between health professionals and engineers, consensus was reached on new, completely secure standards called “The good EDI letters”, which comprise both technical and health related recommendations.

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An actual test function was established with a number of tasks primarily in the form of control and counselling for software suppliers. The test function is the impartial party resolving interpretations and disagreements. Suppliers to the health network now had to be approved and certiﬁed. Local dissemination projects continued and the overall objective for dissemination of electronic communication of a long row of standardized written messages was no less than 100%. Communication between hospital departments and laboratories, Internet web technology tests were carried through, for example in the form of e-mail consultation and display of patient data in laboratory and x-ray systems.

MedCom 4 – Internet, XML and hospital reuse (2002–2005) So far, signiﬁcant parts of the health network have been based on traditional EDI communication. However, development and dissemination of the Internet has made it clear that parts – and in the long run all – of the health communication can be made web based with advantage. Some of the new options are: Reference in the data systems’ patient records via a web interface, including large scale dissemination of web references in laboratory and x-ray systems, tele-dermatology, edifact via mail, web requisitions of laboratory results from GP, etc. The future web based health network makes large demands on security, infrastructure, certiﬁcation, user administration etc. The health network is established by connecting existing intranets. The vision is to open up for many-to-many communication across certiﬁed networks. In relation to the Internet, an effort has been put into developing a technical platform and a common structure of information on a future national internet health portal. In the hospital area the Danish health network chose to apply XML standards instead of EDIFACT. New information and streams of communication was also integrated in the health network and an adaptation to G-EPJ, the national standard for EHR, was carried through. In general, communication to and from EHR systems plays an increasingly larger part and the development and implementation of EHR in the Danish health sector is considered a strategic matter for the entire health sector. Local authorities play an ever-larger part as player on the health network. New messages have been developed with more health speciﬁc contents for example for use by admission to or discharge from hospital, and in the form of nurse report to and from home nurses.

MedCom – A “One-Letter-Solution” In Denmark - as in other European countries - hundreds of different forms were used in each region and by each hospital department for the paper-based communication. Communicated electronically, however, only one “basic form” is used for each type of “letter”. Due to this, it is possible for Danish IT vendors to distribute only one “offthe-shelf” IT-solution to all customers - and for users to communicate nationally “from everyone-to-everyone”.

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This does not mean that such a “one-form-solution” is the most suitable in all cases. Thus, in cases where existing solutions are already running and in cases where “special needs” are important, local solutions might still be adequate - just like today. But in most cases it seems relevant to use “off the shelf” products. Despite these constraints it has been possible to reach large-scale electronical communication in Denmark covering almost 2/3 of all written messages in primary health [3]. Is Denmark special? Or is it, in fact, also possible to create a “One-Letter-Solution” for primary care in other European countries? To answer this question, it is necessary in a country to develop a “draft” packet for the most frequent used messages in health – and afterwards to test these e-messages in “real”, integrated communication in pilot projects with participation of different national IT-systems. After the pilot projects, a national “One-letter-solution” has been developed, consisting of a total set e-messages tested and adjusted to local clinical habits.

Conclusion Today, all Danish Health care institutions are using standardised communication as an important part of their clinical IT-systems. All hospitals, all chemistry laboratories, pathological laboratories, microbiological laboratories and all pharmacies are have in several years been able to communicate the MedCom standards. In primary care 2000 primary clinics (81%) and around half of the specialists clinics (48%) are connected – all together more than 2.500 different health care institutions. And in the municipality area home care units are rapidly connected, aiming to cover 75% of the Danish population at the end of 2004. Finally private physiotherapist and dentists are starting to communicate too. All together 2.3 million e-messages are exchanged monthly – more than 60% of the total, paper based communication “cross sectors” in Danish Health care. The development has been on ordinary marked conditions. Each IT-industry decides to develop the needed communication interface. All 50 ITproviders to Danish health have decided to do this – together implementing around 500 interfaces. Similarly, each county, each primary clinic and each laboratory have individually decided to buy the developed interfaces. And afterwards, each individual institution and each county are paying their own communication costs. This is only possible if beneﬁts signiﬁcantly exceed cost for both participating IT vendors and participating health care professionals. This is obvious the case: moving “letters” electronically and automatically between integrated IT-systems is of cause costeffective compared to mailing and retyping paper based letters. In Denmark it has been found that around 2,3 € is saved per message, comparable to total net saving around yearly 60 million € for the total communication [1]. Besides the cost savings, quality and security are improved. Telephone follow-up calls from primary care to hospitals are reduced dramatically, discharged letters and lab results delivered minutes after ﬁnalised in hospitals and labs and no retyping failures happens any longer. But most important, all health care professionals have got one, common clinical reference when communicating “cross sectors” in Danish Health: the MedCom “One-letterstandards”.

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In the next two years this will also happen inside and between hospitals in Denmark: more than three quarter of a paper based hospital record is forms, which are possible to communicate by means of MedCom standards.

References [1] ”Det fynske sundhedsdatanet FYNCOM”, Danish Hospital Institute 1995 and ”Netsværksforsøget i Odder”, Fischer and Lorenz, 1993. MedCom statistics 1996 to 2003. “The Missing Link – The regional health care network”, EC-D6 XIII and County of Funen. 1994. [2] KASIK - Kortlægning af Sygehusenes Interne Kommunikation. County og Funen and Kommunedata. 1992. MedCom communication investigation 2003. [3] MedCom monthly statistics. www.medcom.dk/

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E-Health I. Iakovidis, P. Wilson and J.C. Healy (Eds.) IOS Press, 2004

HYGEIAnet: the Integrated Regional Health Information Network of Crete Stelios ORPHANOUDAKIS Institute of Computer Science, FORTH Heraklion, Crete, Greece Abstract. The healthcare environment is currently changing and the health sector is being transformed to meet new challenges and to beneﬁt from new opportunities. Priorities for the 21st century ought to be set based on emerging dominant trends in healthcare, including the shift towards shared or integrated care, in which an individual’s healthcare is the responsibility of a team of professionals across all levels of the healthcare system hierarchy. In addition to the requirement for efﬁcient and secure access to the Integrated Electronic Health Record (I-EHR) of a citizen, this necessitates the development and deployment of Regional Health Information Networks (RHINs), synchronous and asynchronous collaboration services, and novel eHealth and mHealth services, facilitated by intelligent sensors, monitoring devices, hand-held or wearable technologies, the Internet and wireless broadband communications. These further require the adoption of an open Reference Architecture and the creation of a scalable Health Information Infrastructure (HII). This paper discusses the challenges encountered in developing and deploying HYGEIAnet1 , the Regional Health Information Network of Crete, as well as relevant beneﬁts for citizens and health professionals. Furthermore, HYGEIAnet systems and services are presented, with emphasis on the development of the HII and the implementation of the I-EHR service for providing secure, role-based access to validated content by authorized and authenticated users.

Introduction The healthcare environment is currently changing and the health sector is being transformed to meet new challenges and to beneﬁt from new opportunities. This change is not driven by technological developments, although information and communications technologies are currently playing an increasingly important role in managing the process of change, as well as the complexity of data and processes in the healthcare domain. The forces of change are primarily the following: 1) the need to provide adequate support for population mobility and continuity of care, 2) the requirement for care provided at the point of need, including home care, 3) the requirement for distant monitoring of health status, 4) the apparent lack of proper information and knowledge transfer among healthcare professionals, resulting in an “enormous ‘voltage drop’ from what is known in medical science to what the average patient receives for medical care” [1], 5) the need to support intermittent hospitalization, provided by medical centers of excellence, in or1 c Copyright, Institute of Computer Science, FORTH.

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der to improve the quality of life for patients, while reducing costs, 6) the requirement for personal health management enabled by protocols and wellness pathways, 7) the increasing demand for evidence-based medicine, in order to reduce medical errors, and 8) the increasingly important role of genomic data and bioinformatics. Technology is currently taking on a leading role as a tool for managing the process of change in the healthcare environment and the complexity of this domain. In particular, there are a number of technological challenges that ought to be met in order to provide efﬁcient and secure access to validated medical content, as a cornerstone for supporting continuity of care and emerging novel e(lectronic)Health and m(obile)Health services. The ﬁrst challenge is the creation and consistent use of a single, life-long, and active Electronic Health Record (EHR) for every citizen by integrating the information residing in relevant, distributed information resources. This would also form the basis for providing secure access to possibly anonymized information in family and population EHRs, so that internet-based epidemiology may become a reality. From the Radio Doctor on the cover of Radio News in April of 1924 to Telemedicine for the Masses identiﬁed as one of the Critical Challenges of 2002 on the cover of the IEEE Spectrum in March 2002, the challenge remains how to make eHealth and mHealth services available, affordable, and accountable, while providing solutions that are comprehensive, comprehensible, and compatible with the environment in which they will be put into productive use. Finally, priorities for the 21st century ought to be set based on emerging dominant trends in healthcare, including the shift towards shared or integrated care, in which an individual’s healthcare is the responsibility of a team of professionals across all levels of the healthcare system hierarchy. In addition to the requirement for efﬁcient and secure access to the integrated EHR (I-EHR) of a citizen, this necessitates the development and deployment of Regional Health Information Networks (RHINs), synchronous and asynchronous collaboration services, and novel eHealth and mHealth services, facilitated by intelligent sensors, monitoring devices, hand-held or wearable technologies, the Internet and wireless broadband communications. Furthermore, this requires the cooperation of healthcare facilities that offer complementary services and involves dealing with complex technical issues, mainly related to patient data conﬁdentiality and semantic heterogeneity, as well as the interoperability of systems and services.

1. Regional Health Information Networks: the case of HYGEIAnet HYGEIAnet represents a systematic effort toward the design, development and deployment of advanced eHealth and mHealth services at various levels of the healthcare hierarchy, including home care, pre-hospital health emergency management, primary care and hospital care on the island of Crete, Greece (Figure 1). The technologies, systems and services used in HYGEIAnet have been developed by the Center for Medical Informatics and Health Telematics Applications (CMI/HTA) of the Institute of Computer Science, FORTH. Speciﬁcally, eHealth and mHealth services support the timely and effective management of patients, the synchronous and asynchronous collaboration of healthcare professionals, and the remote management of selected patients at home. Furthermore, eHealth and mHealth services are being used to support continuity of care across organizational boundaries by providing access to the life-long I-EHR.

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Figure 1. eHealth and mHealth services in HYGEIAnet.

HYGEIAnet is fundamentally designed to provide access to health information, when and where this may be required, by all authorized individuals and to facilitate communication among all actors committed to informed decision making in the health sector. HYGEIAnet is a Regional Health Information Network (RHIN), based on an open reference architecture, a Health Information Infrastructure (HII), and tools for the integration of specialized autonomous applications. From the technological point of view, a diverse set of state of the art technologies have been developed and deployed as part of the scalable HII of HYGEIAnet [2]. These include ﬁxed, as well as wireless and mobile communications, distributed computing and middleware (i.e. CORBA), web technologies and services (i.e. XML, SOAP, UDDI), peer-to-peer computing, H.323, X.500, X.509, and a number of other Healthcare speciﬁc standards. 2. Healthcare Information Infrastructure (HII) A scalable regional/national HII is fundamentally needed to facilitate timely access to health information by those making health decisions for themselves, their families, their patients, and their communities, and also to provide support for communication and collaboration among health professionals. Citizens, healthcare providers, and health professionals are key HII stakeholders and users. Thus, applications and services that meet their respective needs are important components of the infrastructure. Because information technology can be useful only when non-technical issues are also resolved, a HII is only partly technological in nature. Considered in its entirety, the HII draws upon principles, best practices, partnerships, and necessary laws, while it is based on the use of standards, systems, applications, and technologies that support personalised healthcare services through the effective information integration of networked information sources. Fundamental prerequisites for the deployment of a scaleable RHIN are the adoption and implementation of an open, modular and scalable architecture, the development of tools for the integration of specialized autonomous applications, and a HII to support them [2].

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2.1. Reference Architecture In complex system design and implementation, the reference architecture constitutes the basis for independence and cooperation. Independence of system components is required in order to allow for parts of the solution to be obtained from multiple sources. Cooperation among these otherwise independent components is essential in any complex environment: the whole ought to be more than the sum of its parts [3]. Therefore, the purpose of the reference architecture in developing a HII is to enable • • • • •

Interoperability, Modularity, so that the infrastructure can be assembled piece by piece, Evolution, so that pieces that are outdated can be replaced with new ones, Stability, management & maintenance, and Cost-effectiveness by leveraging mainstream technologies and products.

The reference model of open distributed processing (RM-ODP) is used to represent the architecture adopted in HYGEIAnet [4]. RM-ODP is commonly used by industry in the healthcare domain. It is also the foundation for the Object Management Architecture (OMA) of the Object Management Group (OMG) [5]. RM-ODP deﬁnes ﬁve viewpoints. A viewpoint is a subdivision of the speciﬁcation of a complete system, established to bring together those pieces of information that are relevant to some particular area of concern. In this paper, we consider the computational viewpoint of the architecture, which is a viewpoint on the system and its environment that enables distribution through functional decomposition of the system into objects that interact through appropriate interfaces. This type of multi-tier approach [6], which heavily depends on the existence of both generic and healthcare speciﬁc middleware services/components, imposes a level of common design that varies according to the actual composition of the platform. Healthcare-related components are needed for patient identiﬁcation, health data communication and indexing, resource(s) location, collaboration between healthcare professionals and patients/experts, authorization, terminology etc., whereas generic components are required to support low level, essential, platform-dependent functionalities related to concurrency control, directories, event handling/notiﬁcation, licensing, security (i.e. authentication, encryption, and auditing), timing, transaction management etc. 2.2. Building a HII: the HYGEIAnet experience In this section, we will present current results from an on going effort toward developing HYGEIAnet, the Regional Health Information Network on the island of Crete. Fundamental software components of the HII will be described, focusing on those components required for the creation of a federated I-EHR. The process of component identiﬁcation, speciﬁcation and development will be presented and critical design decisions will be discussed. The public health system of Crete, an island with approximately 600.000 inhabitants, consists of a large number of healthcare facilities, including a University Hospital, the Venizeleio-Pananeio general hospital, several district general hospitals, primary healthcare centers, and numerous community medical ofﬁces. In addition, the Cretan branch of the National Center for Emergency Care (EKAB) handles pre-hospital health emergen-

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cies, while there exists an active private health sector. The development of HYGEIAnet has been a long-term effort toward providing an integrated environment for healthcare delivery and medical training across the island of Crete. In the course of designing and implementing HYGEIAnet, special attention was given to meeting the requirements of the various user groups involved and to using state-ofthe-art technology and standards at every stage of its development. Alternative patient, location, and problem-oriented views of the I-EHR have been developed in an attempt to provide transparent access to information and secure communication between medical specialties, as well as to address the speciﬁc requirements of a variety of healthcare services at community, primary care, and hospital care level across the Region of Crete. The objective of the I-EHR environment is to deliver an encounter-centerd view of a citizen’s I-EHR. The technological approach followed in the currently installed pilot implementation is based on common object request broker architecture (CORBA) interfaces (for data acquisition, patient identiﬁcation, and semantic mapping) and the X.500/lightweight directory access protocol (LDAP) (for security services, naming services, user proﬁles, EHR and healthcare resource indexing). Dedicated gateways (e.g. structured query language (SQL)/open data base connectivity ODBC-LDAP) have been implemented for scheduled directory updates and XML is used for presenting acquired clinical information in a uniform and consistent manner [7]. 2.3. HII Components Required for an I-EHR Service A number of components have been identiﬁed as core HII components, required for the creation of an I-EHR service. These are: Patient Identiﬁcation Service (PIDS): allows for the unique association of distributed patient record segments to a master patient index. Health Resource Service (HRS): useful for sharing resource information through a common reference point. Examples of resources include pharmacies on-duty, hospitals and clinics, clinical information systems available at a regional level, methods and technologies available for accessing primary information, and protocols for exchanging information. I-EHR Indexing Service (IS): used to manage the meta-data required for identiﬁcation of the type of distributed data populating the electronic health record of patients, its physical location, and the technical means by which this data can be accessed. I-EHR Update Broker (UB): responsible for the prompt and consistent propagation of information from the feeder systems to the I-EHR Indexing Server. Clinical Observation Access Service (COAS): implements the standardized, public interfaces to all feeder systems. It requires the implementation of standardized gateways for each Clinical Information System (CIS) for securely importing, exporting, propagating, and indexing patient record data. Terminology Service (TS): used in many alternative ways to provide the common and shared ontology required.

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In addition to the above components, a number of basic services are also required so that the integrated system exhibits the required behavior in terms of security, concurrency control, event handling, transaction management, workload balancing, etc.

3. Clinical Information Systems At the application layer of the architecture, several clinical information systems have been developed and are being used as autonomous networked applications. These information systems conform to the reference architecture in the sense that they are integrated from both the functional and information viewpoint. In the following paragraphs, the basic characteristics and functionalities of these information systems are presented. 3.1. Home Care The Home Care Platform (HCP) has been designed as a modular platform to allow for its easy customization and adaptation to the requirements of various clinical scenarios, supporting the tele-monitoring and tele-management of patients by a distant expert. The various homecare service scenarios envisaged can be enabled with two different policies: a) scheduled meetings, where the sessions take place at scheduled times, and b) continuous support, where any session can be activated during the hours of service provision (eventually 24 hours a day) [8]. The technical validation of the platform has been performed in a service scenario supporting the tele-management of children with asthma. The HCP was developed as a distributed computing environment, able to support realtime transmission of video images and medical vital signs, through standard Internet protocols. Dedicated software components have been developed allowing the acquisition of clinical data from the various medical devices connected to the platform, as well as the real-time transmission of the acquired medical data over IP networks. The communication is based on a control channel activated immediately after a connection. Using this control channel, information about the existing medical devices installed in the connected HCP is transferred to the Home Care Center and automatically displayed on the physician’s screen. The physician is able to activate and control all such devices. The home care platform has been deployed in the context of HYGEIAnet as a modular platform able to support home care services in different clinical and social settings. An initial technical evaluation study was conducted to assess the platform’s operational characteristics under real life conditions. Issues such as required bandwidth for optimal performance, robustness, ease of use, and real time performance were evaluated. The results obtained reveal that the platform exhibits characteristics that prove its usefulness and effectiveness for the follow up monitoring of patients with chronic diseases from a distance. 3.2. Pre-hospital Health Emergency Management System Although the Pre-hospital Health Emergency Management System (PHEMS) [9] has been designed as an autonomous system, it operates in HYGEIAnet as part of the continuum of care, thus requiring that important integration and interoperability issues be considered. In addition to effective resource management and efﬁcient response to emer-

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gency service requests, the PHEMS provides medical services for access to clinical multimedia data stored in EHRs, for the acquisition of vital signs and the selection and application of predeﬁned medical procedures. Using these services, clinical multimedia data from the EHR archive, as well as acquired vital signs and real-time pictures from the scene of an accident, can be exchanged among the Health Emergency Coordination Center (HECC) of Crete, the hospitals, the primary care centers, and the mobile units. Locally stored predeﬁned medical procedures are triggered automatically, by conditions resulting from the analysis of vital signs obtained at the assistance site, or remotely by a physician at the HECC. The architecture of the system is based on the perception-action paradigm. Perceived operational data may be incoming calls, i.e. emergency service requests, but also information about available resources or data describing the current location of mobile units, patients, etc. Perceived medical data includes vital signs, bio-signals, patient image data, as well as other retrieved clinical multimedia data. The cognition component of the architecture gives instructions and recommendations based on the perceived information and knowledge about operational and medical procedures. Typical problems to be solved by the cognition component are the efﬁcient and effective management of resources, under dynamically changing conditions, or the determination of the set of therapeutic or life-saving actions, triggered by continuously acquired vital signs. Finally, operational actions include the allocation of resources, such as mobile units and the appropriate personnel, the exchange of operational instructions between the HECC and the mobile units, and the maintenance of the emergency episode archive. The current version of the PHEMS has been developed in compliance with the reference architecture, while it employs agent-based technology and domain-speciﬁc middleware services for authority assessment, resource availability and allocation, patienttracking, etc. 3.3. Primary Healthcare Center Information System Primary Healthcare Centers (PHC) play an important role in the provision of healthcare services within integrated RHINs. The CMI/HTA in cooperation with the Section of Social and Family Medicine of the Department of Medicine, University of Crete, and users from several primary healthcare centers on the island, has developed an integrated PHC information system for collecting, managing, analyzing, and communicating healthcare information generated at a PHC. The system, which manages a segment of a patient’s EHR, has been developed so that it complies with relevant standards, e.g. ICD-9 and ICD-10 for classiﬁcation of diseases, DICOM 3 for image management, and SCP-ECG for ECG management and communication. Added-value user-oriented services are also being developed, utilizing the global data produced at the primary healthcare level, to allow for the assessment of the health status of the population and the early identiﬁcation of healthcare problems. Furthermore, generic middleware services for messaging facilitate the communication of patient data to medical assistance companies and other healthcare actors. The PHC information system employs domain-speciﬁc terminology, authorization, patient tracking, and resource services, as well as domain-independent messaging, authentication, and encryption services. The uniform view of the EHR is accomplished through the domain-speciﬁc semantic mapping service.

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3.4. eHealth Services Platform The two-year deployment of WebOnCOLL, a medical collaboration environment based on shared workspaces in HYGEIAnet, has demonstrated that eHealth and mHealth services offer tangible clinical, social and economic beneﬁts to all concerned [10]. Based on instant messaging technologies, which facilitate management of communication rather than information exchange, and addressing the requirement for easy to use and accessible eHealth services in a regional or trans-regional setting, WebOnCOLL has evolved into an eHealth platform, which also supports a variety of access and bio-signal acquisition devices. The backbone of WebOnCOLL is a scalable open-source server implementing the IMPP XML protocol for instant messaging and presence notiﬁcation. To support medical collaboration, a shared workspace component has been implemented that supports subscription and notiﬁcation on content updates. The messenger of the portal, now the centerpiece in medical collaboration, facilitates a smooth transition from asynchronous to synchronous interaction. Each shared workspace corresponds to a “chat room”, where users interact sharing multimedia clinical data relevant to a particular episode of care. Various medical device components have been developed and integrated with the eHealth platform, in compliance with relevant interoperability standards. These include a spirometer, ECG devices of different manufacturers, a real-time vital signs monitor, a real-time 12-lead ECG, and a digital stethoscope. The above components are downloadable on demand and allow the sharing of clinical data produced by the corresponding devices both in real-time and in a store-and- forward mode. Integration with the clinical systems managing the EHR segments in primary healthcare provides access to local clinical data of the patient, while interoperability with the I-EHR service provides access to the patient’s complete medical history. Based on the suspected medical problem and the current clinical context, predeﬁned document templates following the HL7/CDA ANSI standard are automatically ﬁlled out with relevant clinical data. These electronic documents are reviewed and digitally signed by the responsible physician. Smartcards and a regional Public Key Infrastructure are used to ensure authorization, conﬁdentiality, integrity, and non-repudiation. Digital signatures of clinical items follow the W3C/IETF standard for signatures in XML.

4. The Integrated Electronic Health Record The arguments for deploying an I-EHR service are so compelling that a number of countries are striving to develop workable models. An I-EHR is a collection of all of an individual’s lifetime health data, generated during relevant interactions with the healthcare system. A scalable I-EHR would provide the means to access all available medical information, at an organizational, regional, national or even international level, and to meet the challenges posed by patient mobility and the fact that an individual’s health data may reside at many geographically dispersed information systems. In addition to providing support for continuity of care, the I-EHR provides valuable content for basic and clinical research, medical decision-making, epidemiology, and evidence-based medicine. In order to provide uniform access to multimedia clinical information (medical images, ECGs, structured data, etc.), important issues to be considered include the stan-

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Figure 2. The I-EHR User Interface.

dardization of multimedia data formats and the provision of components for viewing the information contained in the I-EHR. In addition, innovative HCI metaphors are required for effective navigation through the multi-dimensional information space represented by the I-EHR, in order to manage the complexity of medical information and to reduce information overload. Lack of efﬁcient I-EHR presentation and navigation capabilities may result in medical errors, inappropriate repetition of medical examinations, unnecessary referrals, and suboptimal use of clinical time and other resources. The three most common reasons why physicians search electronic health records are (a) to gain an overview of a patient, (b) to search for speciﬁc details, and (c) to prompt or explore hypotheses [11]. In such intellectually complex tasks, the interface designer must understand the cognitive processes involved in human-computer interaction in order to design interfaces that are more intuitive and, therefore, more acceptable. The I-EHR HCI interface (Figure 2) allows end-users to navigate in the I-EHR information space at various levels of abstraction and supports the viewing of patient demographic data, the time and location of a citizen’s encounters with the health system, and actual medical data presented according to the Subjective-Objective-Assessment-Plan (SOAP) model. Speciﬁcally: • Patient demographic data is required for the unique identiﬁcation of the subject of care. • The browsing of encounter-oriented information facilitates the review of a patient’s health record through visual cues indicating the availability of speciﬁc medical information. • A viewer of clinical ﬁndings is used to display actual medical data. The viewer supports a number of dedicated multimedia plug-ins for the visualization, processing and analysis of multimedia medical content. Thus, a DICOM viewer and an SCP-ECG viewer enable the visualization and analysis of medical images and ECG data.

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The I-EHR interface also supports healthcare professionals in constructing information ﬁlters that help them converge on the most relevant data, related to each case under investigation, by hiding data considered to be of no interest, thus minimizing the risk of missing important information as a result of information overload. The types of ﬁlters currently supported are: (a) by date, (b) by place of acquisition and (c) by type of I-EHR fragment. Users can design their own ﬁlters by combining different ﬁlter types and can store such ﬁlters as bookmarks, so that they can easily use them on a different occasion.

5. Privacy and Security Issues A formal risk analysis of the I-EHR service in HYGEIAnet revealed that user conﬁdence, in relation to the trust and security infrastructure of the RHIN, is an important factor inﬂuencing user adoption. Regarding a general security model distinguishing between communication security and application security, security services for strong authentication are needed within both concepts. Other security policies, common to both domains, refer to availability, accountability, non-repudiation and conﬁdentiality. The trusted computing base of HYGEIAnet [12] includes: (a) computer security mechanisms to enforce user authentication and access control, (b) communications security mechanisms to restrict access to information in transit across a network, (c) statistical security mechanisms to ensure that records used in research and audit do not possess sufﬁcient residual information for patients to be identiﬁed, and (d) availability mechanisms such as backup procedures to ensure that records are not accidentally deleted. The enforcement of such policies requires cooperation of certain medical services, together with generic certiﬁcation and authorization services. Certiﬁcation of the medical identity is considered essential for the ﬁnal granting of authentication of healthcare professionals and is crucial for the security of the whole HYGEIAnet virtual private network (VPN). With this as a prerequisite, digital signatures are used for the protection of the validity, authenticity, and integrity of medical information, as well as for non-repudiation. In order to safeguard against access violations by authorized users, a reliable auditing mechanism has also been developed for the purpose of tracking all interactions between end users and the middleware enabling services of the HII.

6. Beneﬁts A preliminary assessment has shown that the deployment and use of HYGEIAnet services have resulted in signiﬁcant economic, clinical and access to care beneﬁts. Speciﬁcally, a reduced number of referrals to specialists have resulted in less travel and fewer days of hospitalization, while the number of workdays lost by family members and relatives has been reduced. Furthermore, unnecessary duplication of medical examinations is avoided, while access to care and quality of service are greatly improved in many cases in which eHealth services are employed. In home care, extensive clinical trials were conducted in order to evaluate the clinical effectiveness of the home care platform in the tele-management of patients with pediatric asthma [8]. Speciﬁc ﬁndings regarding the effectiveness and efﬁciency of eHealth

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services in the tele-management of patients with chronic disease are also presented in [13,14]. Regarding the pre-hospital health emergency services, there is a substantial contribution to the quality of care delivered, for two reasons: (i) the protocol based (triage) classiﬁcation of emergency cases resulted in the dispatching of the most appropriate resources for each type of emergency. Based on objective data acquired at the scene of the emergency episode, after arrival of the dispatched resources, the initial protocolbased decision made by the dispatcher has been shown to be correct in 82% of all cases recorded during 2002 (approximately 40,000). This percentage represents a substantial improvement compared to the accuracy of decisions made prior to the introduction of HYGEIAnet systems and services; (ii) the intensive training of all personnel involved had a signiﬁcant impact on the quality of care delivered. Furthermore, given that 65% of pre-hospital health emergency episodes are managed on site by paramedics, providing experts at the health emergency coordination center with the ability to remotely monitor the patient and to guide the paramedical staff in their management of the patient has facilitated access to care by a specialist. With regard to eHealth services in Cardiology, an ongoing evaluation study has revealed to date signiﬁcant beneﬁts. 10% of all cardiac patients seen at a remote primary healthcare center were involved in a tele-consultation session during a period of 6 months, thus making medical expertise instantly available to remote and isolated populations [15]. The ﬁndings to date are extremely encouraging and suggest that use of eHealth services available in HYGEIAnet beneﬁt both patients and health professionals by fostering their collaboration and serving as a tool for continuing education. Although measurable beneﬁts have been observed as a result of the deployment of HYGEIAnet services, such beneﬁts are to be assessed at regular intervals, at least until systems and services are put into routine use and a steady state is achieved. Finally, it should be noted that the diffusion of innovation in the health sector is a gradual and very difﬁcult process and that the rate of adoption is often inﬂuenced by many social, cultural, economic, organizational, and political factors. In this sense, an important accomplishment of the HYGEIAnet deployment was that, through an unprecedented education and training effort targeting health professionals on Crete, a critical mass of enthusiastic users was achieved and this provides the basis for creating additional momentum required to keep the process of adoption live.

7. Conclusions In this paper, issues related to the development of integrated Regional Health Information Networks, as well as the creation and consistent use of the I-EHR are addressed, and the requirement for delivering an I-EHR service in the 21st century is emphasized. Evidence regarding the accessibility and usability of HYGEIAnet services shows that the design of the HCI interface ought to take into account the requirements of the “average” typical user, using different access devices and platforms. Several conclusions can be drawn based on our experience with the development and deployment of HYGEIAnet on Crete. First, the development and deployment of integrated Regional Health Information Networks and innovative eHealth services require:

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a) a vision and long term strategy, b) adequate investment, c) complementarity and continuity of effort, d) empowerment of users through education and training, e) effective management of complexity, f) the resolution of medico-legal issues (e.g. medical liability in the emerging eHealth environment, reimbursement for eHealth services, etc.), and g) effective management of change. Regarding the latter, it should be emphasized that the deployment of RHINs is above all a process of change, which is likely to be evolutionary rather than revolutionary. Effective management of this process of change is perhaps the most critical success factor in any attempt at introducing innovation into the health sector at all levels. Telemedicine is above all medicine (at a distance) and technology is simply a tool that makes medical expertise a shared resource, and provides support for the delivery of signiﬁcant and cost-effective healthcare services at regional and national level. Our duty is to be creative in using the emerging information society technologies in the health sector, so that we may ensure that the potential beneﬁt to be derived from new medical knowledge and technological advances also ﬁnds its way to the scene of an accident, the (virtual) home, and the (virtual) workplace of all citizens.

Acknowledgements The author would like to acknowledge signiﬁcant contributions to the work reported in this paper by all members of the Center for Medical Informatics and Health Telematics Applications (CMI/HTA), Institute of Computer Science, FORTH. Sincere thanks also go to the large number of dedicated users throughout Crete, who have generously provided their time and support toward achieving our common goal. Finally, the author would like to dedicate this paper to all those who shared our vision from the very beginning and continue to believe, as we do, that this effort must continue.

References [1] L. Weed, “Clinical judgment revisited”, Methods Inf. Med. Volume 38, 1999, pp. 279-286. [2] M. Tsiknakis, D. Katehakis, S.C. Orphanoudakis: “An open, component-based information infrastructure for integrated health information networks”, International Journal of Medical Informatics, Volume 68, Issues 1-3, pp. 3-26, 2002. [3] D. Katehakis, P. Lelis P, E. Karabela, M. Tsiknakis, S.C. Orphanoudakis: “An Environment for the Creation of an Integrated Electronic Health Record in HYGEIAnet, the Regional Health Telematics Network of Crete”. TEPR 2000, Your Connection to Electronic Healthcare, San Francisco, CA, May 9-11, 2000, Vol. 1, pp. 89-98 (http://www.ics.forth.gr/ICS/acti/cmi_hta/publications/papers/2000/tepr2000/tepr2000.html) [4] ISO/IEC 10746-2, 1995: Basic reference model of Open Distributed Processing - Part 2: Descriptive model. [5] Object Management Group: The Object Management Architecture (http://www.omg.org/oma/) [6] European Pre-standard CEN/TC251/WG1/PT1-013: “Medical Informatics: Healthcare Information System Architecture” Brussels, CEN, November 1995. [7] D. Katehakis, S. Sfakianakis, M. Tsiknakis, S.C. Orphanoudakis: “An Infrastructure for Integrated Electronic Health Record Services: The Role of XML”. Journal of Medical Internet Research 2001; 3(1):e7. . [8] ATTRACT Project, Deliverable 6.2: Results from Demonstration Phase (http://www.tid.es/trabajo/attract)

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[9] E. Leisch, M. Tsiknakis, S.C. Orphanoudakis: “Pre-Hospital Health Emergency Management as an Integrated Service of the Regional Health Telematics Network of Crete”, MIE’97, Porto Carras, Greece, May 25-29, 1997, pp. 33-37. [10] C. Chronaki, et al: “WebOnCOLL-enabled Remote Cardiology Consultation for Suspected Myocardial Infarction”, Proceedings of Mednet’98, London, England, November 16-19, 1998, pp. 41-43. [11] E. Nygren, M. Johnson, P. Henriksson: “Reading the medical record, analysis of physicians’ ways of reading the medical record”, Comput. Meth. Programs. Biomed., 39, 1992, pp. 1-12. [12] G. Potamias, et al: ”Role-based access to patient’s clinical data: the InterCare approach in the region of Crete”, in: A. Hasman, B. Blobel, J. Dudeck, R.G. Engelbrecht, G.U. Prokosch (Eds.), Medical Infobahn for Europe, Proceedings of MIE 2000 and GMDS 2000, Hannover, Germany, August 27-September 1, 2000, IOS Press, pp. 1074-1079. [13] A. Traganitis, D. Trypakis, M. Spanakis, S. Condos, T. Stamkopoulos, M. Tsiknakis, S.C. Orphanoudakis: “Home monitoring and personal health management services in a regional health telematics network”, In Proceedings of EMBC 2001, 23rd Annual International Conference of the IEEE Engineering in Medicine and Biology Society, Istanbul, October 25-28, 2001. [14] S. Guillén, et al: “User satisfaction with home telecare based on broadband communication”, Journal of Telemedicine and Telecare, Volume 8, Number 2, 2002, pp. 81-90. [15] C. Chronaki, et al: “Preliminary Results from the Deployment of Integrated Teleconsultation Services in Rural Crete”. Computers in Cardiology, Rotterdam, The Netherlands, September 2001.

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Northern Norwegian Health Net Liv Karen JOHANNESSEN, Leader of Globus Programme Norwegian Centre for Telemedicine, University Hospital of North Norway Trine S. BERGMO Norwegian Centre for Telemedicine, University Hospital of North Norway Ellen APPELBOM, Acting General Director Northern Norwegian Health Net Ltd. Abstract. Northern Norwegian Health Net (the Net) is a closed network for social and health care institutions in North Norway. In its present form it was established in 2000, but the early start was in the late 1980s. This proceeding will give a brief history of the network, description of the technology used and the services offered. It also gives a summary of experiences with the Net and research conducted on the services. Most health care institutions in the region are connected in the Net, and the usage is increasing.

1. Introduction The Northern Region of Norway is a scarcely populated area of about 113,000 km2 and with 465,000 inhabitants. Many people live in remote areas with long distances to medical specialists and hospitals. One of the political health objectives in Norway is that citizens are entitled to equal access to medical services irrespective of their geographical location. The patient’s ﬁrst contact with the health care system is usually with a general practitioner (GP). If the GP needs assistance, a referral is made to a specialist, usually located in a local or regional hospital. In large parts of the region there is lack of medical specialists at the local hospitals and going to specialists will often lead to long and tiring travels for the patients. 1.1. Brief History In mid 1980s Norwegian Telecom set up a number of videoconferencing studios for distance education and meetings, and in 1988 they launched a large project with the purpose to provide health care services in rural areas equivalent to those in the larger centres. Telemedicine case studies were initiated in pathology, dermatology, ENT, microbiology, psychiatry, gastroenterology, and cardiology all using videoconferencing equipment with additional special equipment. Most of the projects continued as routine services. Norwegian Telecom withdrew its research support, and in 1993 the Norwegian Centre for Telemedicine (NST) was opened and designated as a national competence centre for telemedicine. NST continued the work done by Norwegian Telecom.

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Videoconferencing was found to be an effective way to deliver health services at a distance, but many physicians stated that for most consultations interactive video would be unnecessary and inconvenient to schedule. As a result NST started to develop services where information was transmitted using e-mail technology. There was a need for a secure health net for these services and for the exchange of information in general. To meet this need the Intramed project was initiated to establish the Northern Norwegian Health Net (the Net) as a regional intranet for all the health care institutions in Northern Norway. This project was followed by a joint project between the newly established Northern Norwegian Health Net Ltd. and NST, with a main focus on implementing services in the Net. Northern Norwegian Health Net Ltd. (NH Ltd) was established as a limited company owned by the regional health care authorities in December 2000. NH Ltd. is the provider and runner of the infrastructure in the Net. The business concept for NH Ltd. is to “counsel, facilitate and ensure operation of ICT-based services in the health- and social sector. The services will be available, secure and cost efﬁcient.” [1] Norwegian Centre for Telemedicine (NST) is organized as a department at the University Hospital of North Norway (UNN). NST is a research and development centre that aims to gather, produce and provide knowledge about telemedicine and eHealth both nationally and internationally. The NST works actively to ensure that telemedicine and eHealth services are integrated into the health service provision. NST does not have responsibilities in running the Net, but uses the infrastructure for new case studies, for research and arrange for new services to be put into routine use. 1.2. Norwegian National Plans The Ministry of Health and Social Affairs has launched an action plan for ITdevelopment in the health- and social sector, “Say @!”, for the period 2001-2003. “Say @!” gives an outline of governmental measures to promote greater electronic interaction in the health and social sectors. The main objective of the plan is to stimulate electronic interaction and exchange to strengthen and increase collaboration and efﬁciency in and between health and social services and to improve contact with patients, clients, and those in need of care and improve the quality of services. ”Say @!” also addresses the challenges of putting infrastructure for electronic interaction and the exchange and collection of data in place [2]. Today there exist separate health nets in each of the 5 health care regions in Norway. Each health net has a different approach when it comes to technology and organization. In the plan “Say @” one main aim is to connect all the regional nets into a national health net by the end of 2003. There is also an aim in the plan to give citizens access to the health net during 2003.

2. Description of the Northern Norwegian Health Net 2.1. Users All 12 hospitals, most GP’s, some private specialists and some health care centres in Northern Norway are connected to the Net. The regional health administration and the

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national purchasing agency are also connected. All together approximately 235 health or health related institutions are connected to the Net. In addition nurses in home care and nursing homes and patients are using the Net for case studies. 2.1.1. ICT Technologies Involved The Net is a closed intranet solution based on Internet technology using mostly open source solutions and open standards. It has an emphasis on security and privacy. The Net utilises hired ﬁxed lines and ISDN to connect up the various member institutions. Fixed lines are based on SDSL technology and are used where the highest bandwidth is required. Hospitals, some GPs and clinics use this type of communication channel. If SDSL is not available or not appropriate, ISDN is used. In more technical terms it is a closed TCP/IP-based network using private address space (RCF1918), shielded from the larger Internet through proxy-enabled ﬁrewalls and a demilitarized zone (DMZ). Each autonomous organization is behind a ﬁrewall of their own protecting them from each other. Predeﬁned network trafﬁc from the Internet, like web and e-mail is allowed through the ﬁrewall, but is scanned for possible viruses centrally as well as locally at each organization, thus blocking encrypted viruses which might otherwise reach an end user. Other predeﬁned network trafﬁc inside the Net is also allowed through. Most trafﬁc is sent using 3DES encryption. Network trafﬁc can only be initialised from inside a hospital or general practitioner’s ofﬁce, thus the ﬁrewall will only let in legitimate responses to queries sent into the Net. Such queries are conducted using open, standard Internet protocols, like the Domain Name Service (DNS), PostOfﬁce Protocol (POP3) or The Internet Message Action Protocol (IMAP), Simple Mail Transport Protocol (SMTP) and HyperText Transfer Protocol (HTTP or HTTPs for encrypted trafﬁc). Relying solely on well proven open Internet technology allowing the end user applications to communicate efﬁciently. Among these end user applications for health care personnel are: • a number of Electronic Patient Journal (EPJ) systems using Middleware for added functionality, like network awareness and encryption/decryption of sensitive patient information during transportation from one EPJ to another • DORIS Communicator - structured text messages exported from or imported into the EPJ • DORIS Professional - structured text messages with multimedia attachments, facilitating an image or sound archive as well as patient referrals from the GP to a specialist. Large and small organizations use the web and database servers in the DMZ to advertise on the Internet, or to provide information and discussion forums to users inside the health net. Larger organizations like hospitals usually manage their own special purpose web servers and e-mail servers, while the smaller ones have the electronic post-ofﬁces on NH Ltd’s e-mail servers.

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3. Services in the Northern Norwegian Health Net In this chapter the services are divided into three categories; telemedicine services, electronic messages and other miscellaneous services. The following services are provided to the health institutions, their patients and clients. 3.1. Telemedicine Services Telemedicine services are mostly provided by the secondary care centres in the region to local hospitals, GPs and others. NH Ltd only provides the infrastructure that makes telemedicine services possible. Table 1 gives an overview of the services and the technology used. Most of the telemedicine services in the Net are ofﬂine applications transmitting either still images or audio ﬁles. These are used in an electronic referral made by the GP and sent to a specialist. This type of referral provides information and patient data that in most cases enables the specialist to make diagnosis and give advice on treatment directly. If the information in the referral, the quality of the still images or audio ﬁle is not adequate the specialist arrange for an appointment for a face-to-face consultation at the out-patient clinic. Still image referrals are used in ophthalmology as a part of routine check-ups for retinopathy for diabetes patients, dermatology and otorhinolaryngology (ENT). Still images are also used by plastic surgeons in the process of giving priority to referred patients and in the planning process before surgery. In addition this service has been used for parents with children with chronic eczema. This makes it possible to get continues follow-ups by highly specialized nurses and specialists. The use of audio ﬁles in an electronic referral has been tested in a case study using pre-recorded heart sounds of children with heart murmurs. Based on the digital audio ﬁle the specialist is able to decide whether the murmur is functional or pathological. A telemedicine application is also used for supporting dialysis treatment at satellite centres in the region. Videoconferencing enables daily communication between the university hospital and its satellites. Patients are remotely examined by the specialist and the specialist can monitor the haemodialysis machine and patient data at a distance. The radiology service consists of two separate types of services. The ﬁrst one is the transmission of radiology images for diagnostic purposes for hospitals without radiologists, for second opinions in rare and difﬁcult cases and in connection with transfer of patients. The second one is giving access to the booking- and radiology report system at the university hospital. This makes it possible for a GP to send an electronic referral, to book appointments for patients and to log onto and read reports in connection with patient consultations. 3.2. Electronic Messages The electronic message services are aimed at making treatment and administration of patients more efﬁcient. It replaces traditional letters sent by postal mail. This service is used by all the institutions connected to the Net. Some of the institutions have completely replaced paper based letters by electronic messages while others use both in a period of transition. The electronic messages include referral letters, policlinic notes, discharge letters, laboratory results, radiology reports and regular letters.

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Table 1. Overview of the telemedicine services in the Net Service

Offered by Offered to

Used for

Technology involved

Dermatology

Hospitals

GPs

Remote diagnosis and advices of treatment, control after treatment

Plastic surgery

Hospitals

GPs

Giving priority to patients and planning of operations

Ophthalmology

Hospitals

Health care Remote diagnosis centres, local hospitals

Digital camera PC with software for transmission of encrypted e-mail∗ ISDN-connection Router with access to the Net Digital camera PC with software for transmission of encrypted e-mail∗ ISDN-connection Router with access to the Net Fundus camera connected to a digital camera PC with software for transmission of encrypted e-mail∗ ISDN-connection Router with access to the Net Endoscopy equipment connected to a PC Digital camera PC with software for transmission of encrypted e-mail∗ ISDN-connection Router with access to the Net Electronic Stethoscope PC with software for transmission of encrypted e-mail∗ ISDN-connection Router with access to the Net

Otorhinolaryngology Hospitals

GPs

Remote diagnosis, advices of treatment and control after treatment

Pre-recorded heart sounds

Hospitals

GPs

Remote diagnosis

Dialysis

Hospitals

Local treatment satellites

Communication between staff, treatment and diagnoses

Videoconference equipment Ultrasound Stethoscope Software to monitor the haemodialysis machine and patient data

Radiology

Hospitals

Hospitals

Radiology equipment Access to the Net

Radiology

Hospitals

Hospitals, GPs

Reading of radiology images for without radiologists, second opinion, connection with transfer of patients Bookings and referrals, access to radiology report system

∗

Access to the Net

The software used can be implemented in all the electronic patient records most widely used in primary health care.

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3.3. Other Services Other services include web hotel for institutions without their own web server, news groups for professions or other groups inside the Net, medical procedure references and web-based collaboration. An example of the latter is Patnet which is a tool for information and collaboration among pathologists in Norway. NH Ltd also offers videoconferencing and telephone based on IP-technology for institutions connected to the Net. 3.4. Planned Services Several projects are under completion by NST or by NH Ltd and are planned to become routine services in the Net in near future. Among these are: • An online distance teaching service offering a comprehensive overview of Norwegian health education information and offers, and tools for net based teaching • An opportunity for patients to get a secure access to their GP over the Internet • Maternity remote check-ups transferring sonograms and CTG registrations • A booking service to provide direct booking from the GPs to different specialist services at hospitals in the Net.

4. Usage and Trafﬁc in Northern Norwegian Health Net The general use of the Net is increasing both in terms of the number of messages and megabytes. Statistics of the trafﬁc from 1997 to 2002 show an increase from 88,680 messages and 7251 MB in 1998 (when the network was still in a project phase), to 1,638,099 messages and 127,566 MB in 2000 and 3,213,406 messages and 241,315 MB in 2001. Table 2 shows the number of GP ofﬁces that are connected and have equipment for some of the services provided in the Net. Table 3 shows the total number of telemedicine consultations in the Net. Radiology is by number the largest service. Approximately 15000 teleradiology consultations were carried out during 2002. This includes 8400 teleradiology consultations from Troms Military Hospital which is a hospital without radiologist and hence is sending all radiology consultations to UNN. The table also shoes that the number of referrals differs between Table 2. Number of GP ofﬁces connected to the Net which has the possibility to use telemedicine services Service

Dermatology

Plastic surgery

ENT

Heart Sound

e-call

Messages

Number of GP ofﬁces

55

55

7

41

3

48

Table 3. The use of telemedicine services in 2002 Service

Dermatology

Plastic surgery

Heart sound

ENT

Ophthalmology

Radiology

Number of telemedicine consultations

319

10

6

54

70

15000

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the services. The difference is due to both maturity (several of the services started up in 2002) and to the number of potential cases in the region. A study carried out in 2002 revealed that just a few GPs used telemedicine frequently. Dermatology was the service used most frequently due to a relative user friendly technology. Barriers reported were lack of adequate training, it was time consuming compared to just refer the patients to the hospital and lack of reimbursement. Among the frequent users of the services organisational barriers was not reported as crucial [3]. Electronic messages are services offered from the hospitals to the GPs. A wide range of messages are being sent, and NH Ltd is currently working on a service for purely textbased electronic referrals. This will replace paper-based referrals completely and result in a much higher volume. In 2002 107,000 messages were sent from UNN; about 10,700 discharge letters, 63,000 laboratory results and 33,000 out-patient notes. The main goal is to make all communication between the primary health care and the hospitals electronic.

5. Experiences and Research Results Several studies have been carried out to investigate user satisfaction, medical quality and efﬁciency of the services. There have been qualitative studies made among users of the services; patients, physicians, nurses and technicians and quantitative studies measuring cost and efﬁciency. This chapter is divided into two sub-headings; quality of care and economic evaluations and discussion. Many of the studies described in this chapter have been carried out during the project phase before the services became routine services in the Net. Despite the small scale of the studies, we ﬁnd that most conclusions still apply when the services have been put into routine use. 5.1. Quality of Care and Economic Evaluations In the northern region of Norway many people live in remote areas with long distances to medical specialists and hospitals. The potential beneﬁts using telemedicine in this region might therefore be substantial. It has been carried out economic evaluations and studies of satisfaction of some of the telemedicine services in the Net. Methods and assumptions in the economic evaluations The economic evaluations carried out so far have compared the cost of telemedicine with the alternative costs of conventional methods. It has been assumed that the use of telemedicine had no effect on the patient’s health outcome, but was just a method of providing the same service in a different manner. Telemedicine pilots and services have mostly replaced patient travels and a visiting service. These economic evaluations used a societal perspective. The costs considered were those falling on the public health-care sector. This includes travel costs. Private costs such as user fees were also included. Costs born outside the social and health-care sector were excluded. In these analyses the ﬁxed and the variable costs have been distinguished carefully. Fixed costs do not vary with the number of patients served; variable costs vary with the number of patients. This distinction is important because high ﬁxed costs make the unit costs sensitive to the patient workload. It was assumed that the capital items had six-year

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lifetime. Computers were assumed to have a four-year lifetime. Analogue equipment was assumed to have a longer lifetime. It was also necessary to allow for the capital investment in the ﬁrst period to be converted to an annual cost which included both the time preferences and the opportunity cost of the capital. Although the public health service in Norway does not pay interest on its capital the same way private does one could argue that the community is not indifferent to the timing of resource commitments. The most widely accepted way of incorporating this into public-sector appraisals is to apply a public-sector discount rate to costs and beneﬁts to adjust for timing [4]. The discount rate in these studies has been set between 3.5% and 5%. Another important factor is the costs of equipment maintenance and the analyses have included an annual maintenance cost of 10 % of the equipments purchase price. Haemodialysis The use of telemedicine to support haemodialysis management at two local dialysis units has been evaluated. A cost-minimization analysis showed that the service was not costeffective compared to the conventional method of providing health care to these patients. It was in total seven patients who received specialist care using telemedicine. Total investment costs of telemedicine was 135 000 Euro. In this calculation the investment in broadband technology was not included. Total costs of this service amounted to 65 000 Euro per year. Included here were maintenance costs, annual line costs (broadband) and personnel costs. The telemedicine service replaced ﬁve emergency transfers, four specialist visits to each clinic and 28 routine in-hospital follow-ups at the university hospital for seven patients (four per patient per year). The annual costs of conventional method amounted to 39 000 Euro per year (the visiting specialist service costs 6 000 Euro, routine in-hospital follow-ups cost 20 000 Euro and emergency transfers cost 13 000 Euro). This made the additional cost of implementing telemedicine (the net cost) 26 000 Euro per year. Even if this service was not making the health care service more cost-effective, there was other reasons for implementing the technology. In the conventional service, dialysis patients who were treated at satellite dialysis centres did not have the same follow-up as patients at the university hospital. In addition, the nurses felt professionally isolated. The service, together with new routines, has strengthened co-operation between the university hospital and the satellites. Increased information about the patients conditions has improved the quality assurance of decisions regarding treatment modalities, management of technical and patient care problems. Health staff at UNN had some difﬁculties in integrating the new service into everyday routines. The beneﬁts of providing better health care for patients and the integration of isolated health care staff at the satellites were seen to clearly outweigh the additional time and inconvenience involved for the hospital [5]. Transmission of retina images An off-line transmission of retina images to check for diabetic retinopathy does not yet have sufﬁcient patient workload to break even. An evaluation of this project used a costminimisation technique and compared the cost of telemedicine with the costs of a visiting service, patient travels to the university hospital and patient travels to a private ophthalmologist in a neighbouring municipality. It was approximately 250 patients with diabetes in this local community. The costs of the services was for 80 patients per year 22 000

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Euro and for 250 patients per year 24 000 Euro. More than 110 patients a year were needed for telemedicine to be the cheapest alternative [6]. In 2001 only 70 patients were examined using telemedicine consultation to check for diabetes induced retinopathy. Satisfaction with the service was studied. Health care personnel were interviewed and questionnaires were sent to the patients [7]. The specialists found the service much more effective than conventional services in terms of time spent on each patient. The patients wanted to be examined in their hometown either by a visiting specialist (14 of 29 patients) or by the diabetes nurse performing the telemedicine consultation (14 of 29 patients). Only one patient wanted to travel to the specialist. In a conventional service the patients get the result of the examination immediately, but using the telemedicine service it could take up to 3 weeks to get the results. In spite of this most patients did not ﬁnd the waiting time too long. Teleradiology A teleradiology service analysed in a scenario study reached the same conclusion [8]. This study analysed whether teleradiology at a local health care centre would be a cost effective way of providing radiological examinations to the population in a remote area. The costs of teleradiology was compared to the costs of; – an existing system with the simple fractures at the remote site and all other examinations at the nearest hospital – teleradiology with most examinations at the remote site – all examination at the nearest hospital The teleradiology service did not save costs in this particular situation. The increase in workload needed to break even was 588 patients per year. A second teleradiology service analysed in 1995 reach a different conclusion [9]. This was a service provided to a local hospital without radiologist and was cost-effective due to a relatively high patient workload. The average workload was 25 patients per day. The annual cost of the teleradiology service was NOK 646 900 while the traditional method, a visiting service amounted to 1 million NOK for 6000 patients per year. The number of patients needed in order to break even were 1575 per year. The reason for the different conclusions of these evaluations was mainly that more equipment was required to implement teleradiology from a primary-care centre with no pre-existing radiology equipment than to do so from a local hospital where some equipment and radiology technicians were already available. There have not been any studies of the non-monetary beneﬁts of the teleradiology service. But the large use of the service could indicate that the users ﬁnd it useful. A similar radiology project in Sweden concluded that teleradiology was useful. The technological problems were smaller than expected whereas taking the new service into daily clinical use was more troublesome than expected. It also showed that those sending radiology images were more eager than those receiving images [10]. One could expect these results to be valid also for teleradiology in Northern Norway. Still image dermatology Still image dermatology might be an economic viable option for some rural clinics. This however, will depend on the annual patient workload and the distance to the specialist.

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An economic assessment carried out in 2000 showed that investment in still image dermatology would provide potential savings in 18 out of 44 municipalities (one clinic in each) in the two northernmost counties in Norway [11]. A case study involving 59 patients has been carried out. The main conclusion was that the most common skin problems safely could be handled using telemedicine [12]. A limited survey of patients’ satisfaction has also been carried out. This survey concluded that the patients found still image consultations to be a good supplement to videoconferencing or visits by specialists to rural areas. The GP and the specialists agreed that the system was useful and suitable for diagnostic work [13,14]. All citizens are entitled access to the appropriate care and treatment from the health care system. Due to the long distances in Norway, however, ease of access varies depending on where the patient lives. Especially in Northern Norway, travelling to see a specialist is often time consuming and tiring. Here, telemedicine services can provide easier access to specialist advice. An ongoing evaluation of still images in dermatology in the Net has shown in more than 95% of all still image referrals, the dermatologist could conclude on the basis of the information forwarded. This saved patient travels for face-to-face consultations. Heart sound A study carried out in 2001 concluded that transmitting pre-recorded heart sound for children with a heart murmur in an e-mail was both safe and time saving [15]. Based on this the cost of implementing such a service was Calculated 14 health clinics in Troms county and 41 clinics in Northern Norwegian Health Care Region have invested in equipment that makes pre-recorded sound referrals possible. The costs of using pre-recorded telemedicine were compared to the costs of patient travels to the nearest secondary care centre. An average of 50 children with heart murmur visit the out-patient clinic at the university hospital per year. The costs of investing in this technology for all 42 GP ofﬁces in the region were compared to the actual travel costs for the 50 children and their parents. Total annual costs amounted to 107 000 Euro, assuming one application per GP clinic. Assuming that some of the technology also can be used for telemedicine services in other medical ﬁelds. this will ease the cost burden on the heart sound service. For instance can the software and the subscription fee for using the health net be charged still images dermatology, the use of still images in plastic surgery and still images in ear, nose and throat. Assuming that the GPs used this technology in a variety of specialities, this cost sharing made the annual cost of the heart sound service 35 000 Euro. The total annual cost of patient travels to the university hospital was 9 000 Euro including the travel costs, out of pocket expenses and production loss. With only 50 children per year in the region with heart murmur this was not enough to make this cost-effective service. The annual workload needed in order to break even was 250 and 195 respectively. This service might however be an economic viable option if the technology can be used on adults with heart problems as well [16]. The waiting period for the parents is reduced using pre-recorded sound referrals. The parents then avoid a period with worry and anxiety that their child might have a serious heart condition in addition to a long and tiring travel.

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Otorhinolaryngology A case study with 29 patients with regular cases showed that a number of the most common otorhinolaryngological problems can be diagnosed safely using still images [17]. A survey with the same patients showed that most patients preferred the videoconferencing service, but there were not much resistance to using still images [18]. The GP in the case study found that the still image system functioned as a tool for better communication between GP and specialist [19]. Electronic discharge letters A doctoral thesis entitled “An evaluation of the North Norwegian Health Network” is currently underway. The focus is on communication using electronic messages in the process starting with the initial sending of the referral letter related to patient consultation, via the documentation process in the hospital, and ending with the arrival of the discharge letter at the GP practice. So far the ﬁndings are that implementation of information technology is not only affected by more obvious, administrative thresholds, but also by organizational and cultural barriers. The GP and the specialist tend to view patient documents from their own perspective; they attach different meanings to the same type of document. The increased use of ICT in complex organizational environments tends to increase the information overload in medical practice [20]. Telemedicine in local medical centres An option that has been considered is to put selected telemedicine services into local medical centres in areas without a nearby hospital. In such a centre several services could share infrastructure and equipment hence sharing and reducing the costs for the different services. An economic analysis has been carried out showing that some telemedicine services will be cost-effective in such a local centre while others will still not [21]. The analysis only takes into account the extra cost incurred by using telemedicine. Given the actual population in one of the rural areas the analysis showed that both instance maternity check-ups and radiology could have a cost-effective potential using telemedicine while a visiting service were the least expensive alternative of providing dermatology and ENT services. 5.2. Discussion Lessons learned Several simplifying assumptions were made in these evaluations. All cost ﬁgures were to some extent a product of the assumptions made in their calculation. Therefore they must be interpreted in the light of their local circumstances. What is cost-effective in one location may not necessary be so in another. Sensitivity analyses have been used to assess the validity of the results. In a sensitivity analysis the assumptions were varied to test if these variations changed the results in such a way that it altered the conclusions. The lesson learned so far is that whether telemedicine in the Net is cost-effective or not depends on several situation-speciﬁc factors. The most important one is the potential patient workload. Large set-up costs require a high patient workload to break even and visa versa. This makes the magnitude of the cost elements crucial. Whether a visiting

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service is an available option or not and the distance from the rural site to the secondary care centre will also inﬂuence the result. Experiences have shown that in most cases a visiting service is the least expensive option compared both to the use of telemedicine and patient travels. Decisions about whether to implement telemedicine based on ﬁnancial arguments must therefore be made in the light of local circumstances [22]. A comparative large-scale study in England showed similar results. The study examined the economic consequences of a conventional outpatient consultation and a joint teleconsultation [23]. About 2100 patients for different medical specialities were involved. The conclusion was that teleconsultations incurred greater costs to the NHS, the provider of the service, than standard outpatient appointments due to larger personnel costs. For the patients the teleconsultations resulted in savings in terms of costs and time. The overall conclusion was that the adoption of teleconsultations cannot be justiﬁed on economic grounds. The different costs and savings of using telemedicine are born by different parties in the health care sector; for instance in still image dermatology investments and running costs would be born both by the GPs or the municipality authority. Investment and running costs will also fall on the central hospital. The specialist will save time while the primary physician in most cases will use more time than in traditional services. The National Insurance Administration will save expenses on patient travels. Hence different parties will gain or lose and this is a challenge that have been discussed for several years as one of the main obstacles for taking telemedicine into routine use. Despite the new reimbursement rates for the providing hospitals most telemedicine services in the Net have not yet been taken into widely use. The lack of reimbursement for the GPs might be one reason for the limited use. In an interview study GPs using telemedicine services in the Net state that the use of telemedicine is more time consuming than making traditional referrals, and that the telemedicine services incurs extra work for the GP, especially in the beginning [24]. A study based on interviews of key actors in the Swedish health net shows similar results: too high or unrealistic expectations initiated by enthusiasts may lead to a lack of conﬁdence in the technology as a whole and may hinder the ability to see the actual potential for the services. When the services come beyond the pilot phase and into actual implementation, the incentives often change and costs must be covered within the framework of the normal budget. And last; clinicians may never ﬁnd time to cross the necessary thresholds to acquire education and experience in the new technology, and when the physician is pressed on time it is easier to write a traditional referral than engage in a telemedicine consultation [25]. What is decision relevant knowledge for implementing telemedicine? In the book “Taking Health Telematics into the 21st Century” Wyatt states [26]: “Perhaps the underlying problem is that politicians and commercial interests appear to be keen to implement telemedicine regardless of the lack of objective evidence of beneﬁts?. However, taking an evidence-based view, all expensive technology should be evaluated in order to understand not only its beneﬁts but also the risks it poses, and how to prevent them in the future.” Most evaluations of telemedicine services are local audits, describing what happened in a speciﬁc project concerning clinical, organizational and economical outcomes not attempting to generalise the results. Wyatt suggests that the question to be asked should be “What is the likely impact of this or a similar telemedicine system in a new site?”

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Telemedicine services are complex and it is difﬁcult to make successful services. This makes it even more important to study and publish both the successful stories and learn from the negative results. Wyatt concludes that “health service managers and policy-makers should be aware of the unknown-cost beneﬁt of telemedicine applications, and defer wider implementation of telemedicine until the results of currents studies are known.” It is important that policy-makers get all possible decision basis to make decisions. And they need to know the limitations of their decision basis, whether it is purely based on local circumstances or more generalized. For instance an economic evaluation might show that a service is not cost effective whereas a study of beneﬁts for the patient or health care personnel might produce signiﬁcant non-monetary beneﬁts It is then the policy-makers job to weigh the two different aspects against each other, and decide whether the extra costs is worth the extra beneﬁts. The main goal of research and evaluations is to supply the decision-makers with objective evidence of all relevant consequences, economic and others. The future research should also focus on potential negative effects especially in the long run. Is it possible that the use of videoconferencing or still images could overlook important health related information and symptoms? Could the health care services provided by telemedicine to patients living in remote areas be regarded inferior to face-to face consultations for people in urban cities? But future research should also analyse the beneﬁts such services might have on the patient’s health outcome and the quality of life. This might add a valuable aspect for patients in the service provision as such. How does ready access to diagnosis affect the patient’s recovery? The length of the recovery process might be shorter due to earlier diagnosis if the use of telemedicine reduces the waiting period. Or this might not make a difference for the patients at all. The concept of equal access for equal need is a major tenet of health-care resource allocation in Norway. The quality of care and readiness of access should be as good in remote areas as in central part of the country. Telemedicine can be a part of the effort to meet such political objectives. Adopting telemedicine services may thus aim at objectives beyond pure cost-effectiveness.

6. Conclusion This chapter has shown that it has been established a well designed and operative health net for secure and reliable communication between the health care institutions in northern part of Norway. The infrastructure, the services and the research activity carried out have been outlined. Experiences so far has shown that the most basic electronic services like electronic messages and EPJ must be available and incorporated in daily use before more clinical services are mature enough to be put into routine use. This chapter has also shown that the work towards a fully operative health net is just at its infancy. The challenges ahead are both to overcome the barriers experienced by the current users and to develop and offer telemedicine services with a compelling value, meaning that the users must ﬁnd the service useful given its cost. An example of the latter is the use of electronic transmission of discharge letters. More user-friendly technology, more training, ‘Learning by doing’, reimbursement, some organisational adjustment and scheduling for some of the services are issues that must be dealt with in order to make the existing telemedicine into routine services.

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Studies documenting the consequences of services in the Net have been carried out in a project phase. Knowledge of the aggregated effects is still limited. Future research documenting large scale effects is therefore needed.

References [1] www.nhn.no [2] Ministry of Health and Social Affairs. Say @!-action plan for IT-development in the healthand social sector. http://www.shdir.no/index.db2?id=549 [3] Larsen F, Gjerdrum E, Obstfelder A Lundvoll L. Implementing telemedicine services in Northern Norway: Barriers and facilitators. Journal of telemedicine and Telecare 2003; 9 (suppl.1):s1:17-18. [4] Bergmo TS. An economic analysis of teleradiology versus a visiting radiologist service. Journal of Telemedicine and Telecare 1996;2:136-142 [5] Rumpsfeld M, Arild E, Teledialysis- establishing a common work place between remote satellite centres, abstract Nortelemed conference, October 2002. http://nortelemed.custompublish.com/index.php?id=66691 [6] Bjørvig S, Johansen M A, Fossen K. An economic analysis of screening for diabetic retinopathy. Journal of Telemedicine and Telecare 2002;8: 32-35. [7] Rotvold GH, Telemedicine screening for retinopaty: staff and patient satisfaction, Journal of Telemedicine and Telecare 2003; 9; 109-113 [8] Halvorsen PA and Kristiansen IS Radiology services for remote communities; costminimisation study of telemedicine. BMJ 1996,1333-6, 312. [9] Bergmo TS. An economic analysis of teleradiology versus a visiting radiologist service. Journal of Telemedicine and Telecare 1996;2:136-142 [10] Samverkansorganisationen Sjunet, Sjunet- til nytte for pasienten (Sjunet,The health care net – to beneﬁt the patient), Slutrapport 3/2000R, Uppsala 2000 [11] Bergmo TS. Will still image telemedicine save costs?, Journal of the Norwegian Medical Association no.15, 2000; 120: 1777-80. [12] Moseng D. Teledermatology - the north Norwegian experience. Journal of the Norwegian Medical Association, 2000; 120: 1893-5 [13] Arild E, Ekeland AG. Evaluation of telemedicine services. Teledermatology – patient experiences. NST-report 1999, (In Norwegian only) [14] Ekeland AG, Arild E, Bellika JG. Evaluation of telemedicine services. Teledermatology – user experiences. NST-report 1999, (In Norwegian only) [15] Dahl LB, Hasvold P, Arild E, Hasvold T. Heart murmurs recorded by a sensor based electronic stethoscope and e-mailed for remote assessment, BMJ, March 2002 [16] Bergmo TS. Is pre-recorded heart murmur transmission for children cost saving? Journal of the Norwegian Medical Association 2003 (in press) [17] Lettrem I. Evaluation of still images in ear-nose-throat. NST-report 2000, (In Norwegian only) [18] Arild E, Ekeland AG. Still images in ear-nose-throat. Patient experiences. NST-report 2000, (In Norwegian only) [19] Ekeland AG, Arild E. Still images in ear-nose-throat. User experiences. NST-report 2000, (In Norwegian only) [20] Myrvang R. An evaluation of the North Norwegian Health Network, Abstract for doctoral project. http://www.telemed.no/cparticle44485-4549b.html [21] PricewaterhouseCoopers, Economic Evaluation of Telemedicine in a Local Medical Centre, in press

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[22] Bergmo TS: Economic evaluation of telemedicine. The case studies that can not be generalized, abstract Nortelemed conference, October 2002. http://nortelemed.custompublish.com/index.php?id=48621 [23] Jacklin PB et al, Virtual outreach: economic evaluation of joint teleconsultations for patients referred by their general practitioner for a specialist opinion, British Medical Journal, vol 327, 12 July 2003 [24] Dagens medisin, Telemedisin belaster allmennlegene (Telemedicine gives more job for the GPs) October 9, 2001, 14-03 [25] Karlsson S-O et al, What are the barriers facing telemedicine, a report from the project Telemedicine-regional and national collaboration, subproject: Incentives and implementation, Federation of Swedish County Councils, 2000 [26] Wyatt J. Evaluating the impact of telemedicine on health professionals and patients. In M.Rigby & M.Thick (Eds.) Taking Health Telematics into the 21st Century (pp.61-76). Oxon: Radcliffe Medical Press Ltd. 2000

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E-Health I. Iakovidis, P. Wilson and J.C. Healy (Eds.) IOS Press, 2004

North Karelia Regional Chain of Care: Finnish Experiences Pentti ITKONEN North Karelia Hospital District, Joensuu, Finland Abstract. Information- and communication technology is one of the most important cornerstones in more and more data and knowledge intensive health care sector. However these factors don’t create ﬁnancial gains and productivity beneﬁts spontaneously. They need organisational and social innovations and new business models. The growth of productivity is connected to the process and organisational innovations and not to the number of computers and the growth of using ICT. One of the problems prohibiting health care profession to move to real e-work environment is the lack of the reliable measures and on these measures based performance measurement and strategic management. Health care can be improved by utilizing ICT and tools like performance measuring are key weapons in the arsenal of new e-work environment and measuring based new strategic management. Neither public sector nor not-for-proﬁt hospitals look for ﬁnancial rewards as their ultimate proof of success. Instead, they seek to achieve ambitious missions aimed at improving the health standards and wellbeing of the citizens. ICT- based new way of managing in the public sector is just beginning to gain a critical level of digitalization and will most likely come to its own in the coming years. Therefore, it is essential to research on how the health care sector can be moved towards new regional models and clinical workﬂow using intelligent standard based strategic management and performance measurement. If the breakthrough of the eight-hour working day and shortening of working time are evaluated afterwards, it can be stated that they have made the society more anthropocentric and humane. During one century the annual working time has shortened from 3000 hours to 1700 hours in the European Union countries. These foundations of a more humane society – eight-hour working day and shortening of regular working time – are however disappearing in the post-industrialized information society. There are various grounds for the eight-hour working day. These grounds relate to quality of life, occupational safety and health and productivity of work. It is worth asking if the nature of work has changed in a way that the truths of an industrialized society do not hold true or has the development of working time in health care sector become uncontrolled in some new way?

Introduction During the previous European Union fund period and within the fourth and ﬁfth framework programme information technology projects were implemented in health care in the North Karelia Hospital District in Finland. As a result of these projects a regional health care communication system was developed and the ideas and experiences presented in this paper are based on these projects. [1–4]

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Table 1. Electronic referrals from health centres in 2002 in North Karelia Hospital District Month January February

Referrals 1508 1356

March

1560

April May

2023 2290

June July

2405 2555

August

2877

September October

2833 3166

November

3278

December Altogether

2974 28825

In North Karelia Hospital District the Electronic Patient Record has been used for three years. Our experience is that Electronic Patient Record serves an enormous range of tasks, including direct patient care, preventive care, clinical decision support, audit and accountability, legal evidence, management and ﬁnancial control, clinical trials, research, and comparison. Hospital medicine has complex workﬂow, job specialisation and division of labour which creates complex and diverse patterns of information use. For example, the mode of information use is different in intensive care, on inpatient wards, at outpatient clinics and in general practice surgeries with regard to variables such as the volume and half-life of data, the need for rapid response and the value of decision support tools and integration with medical devices. These uses have been classiﬁed as clinical management, clinical administration, clinical services and general management. Furthermore each group of staff has speciﬁc needs of its own. Each group has its own audit, quality assurance, decision support and other requirements. This helps to explain why most successful patient record system have been limited to situations where the scope of use is well understood, such as general practices or individual clinical units in hospitals. Electronic referring has been in use in the North Karelia Hospital District since 1997. In 2002 the last electronic connections were made to all regional ﬁfteen health centres and the number of referrals in 2002 is shown in the Table number 1. Electronic patient record system has been in use in the North Karelia Hospital District since 1999. The system is in use in all medical specialities and they provide about 37.000 thousand digital documents every month. Also doctors themselves make documentation and the number of these documents in terms of percentage of all documents is shown in the Table number 2.

1. New Regional Models New regional models have been under national discussion in the most European countries. The traditional hierarchy as a coordination form between hospitals and primary care is now moving towards market and network coordination. The traditional model to

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Table 2. Patient record texts written by doctors in terms of percentage of all documents in different medical specialities Medical speciality

January 2002

May 2002

September 2002

December 2002

3,4 33,6

2,9 41,6

3,8 31,8

12,3 37,8

Physiatrics Gynecology

8,3 5,5

24 4,1

9,4 6,4

11,7 4,7

Pulmonary

25,2

24,9

12,6

24,8

4,6 4,4

5,5 4,5

4,3 4,6

5,5 5

Psychiatry in hospital Open psychiatry

Surgery Otology Pediatrics

13

10,3

14,2

14,1

Neurology Ophthalmology

14,9 15,2

18,8 15,1

17,4 14,6

15,8 12

Internal medicine General psychiatry

12,7 16,8

14,3 6,5

12 9,6

15,1 13,4

organise hospitals is breaking down and the driving force behind these models is information technology. Compared with other alternatives ICT offers the greatest development potential in the future to create new regional models and clinical practice and also to increase the productivity in health care sector. In North Karelia Hospital District the support functions that ﬁt to network business have been separated from the core functions of the hospital. The model is called the public enterprises. These enterprises are independent and are common to hospital and regional health centres and are established in laboratory, X-ray, medical technology and digital archiving. To transmit laboratory results and x-ray images through safe networks will be a proﬁtable eCommerce model in the future. These functions are the most suitable for large and region independent network business especially after the development and use of public key infrastructure and intelligent archiving systems. Also booking and paying of services and the follow up of working time can be connected to networks after these applications. [5]

2. Strategic management New information technology has the potential to change medicine as radically as industrial revolution changed craft workshops over a century ago. As a result we are likely to see dramatic changes in doctor-patient relationship. We hopefully see also dramatic changes in the management processes of the hospitals and health care units. The old paper based workﬂow and reporting system that had been established with ﬁrst paper based patient record and archiving system simply cannot meet the challenges represented by these innovative performance management extensions. Automating the clinical workﬂow, archiving and reporting systems provide a number of beneﬁts and maximize its use as a measurement system, strategic management system, and communication tool. The advanced analytic and decision support provided by even the simplest archive software allow organizations to perform intricate evaluations of performance and critically examine the relationships among their performance measures. Automation also supports true organization wide deployment of the tool. Employing

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performance measurement techniques allows managers in health care sector to clearly demonstrate to politicians and citizens alike the value the hospitals and caregivers bring to citizens. Tracking that value comes from the development of meaningful, outcomebased indicators that can be used measuring the effectiveness of health care sector success. In an age of declining budgets, those managers turning to performance measurement have a tool to clearly outline how allocation of funds to health care sector will make a difference to the citizens ultimately affected by the health care service delivery. The ultimate goal of the public sector hospitals is to fulﬁl their mission and patient and customer requirements, not achieve ﬁnancial success. However ﬁnancial metrics still have an important place in the overall management and political decision making framework. Working efﬁciently and creating value at lowest cost will be of critical importance in any organization, regardless of its status. Determining the costs of services rendered can lead to important conclusions and dramatically affect funding decisions. [5]

3. Knowledge autonomy in health care The diagnostic reasoning in medical settings is based on special knowledge possessed and controlled by the profession of medicine. The knowledge gap between the patient and the doctor is so wide that diagnostic reasoning is inherently opaque to the layperson. The physician is a technically competent person whose competence and speciﬁc measures can not be competently judged by the layman. The latter must therefore take these judgements and measures “on authority”. This means that because of the communication gap between the doctor and the patient, the latter cannot understand the diagnostic process and the client’s participation in the diagnostic process is minimal. There is documented evidence from a number of trials that patients who are encouraged to take responsibility and assume an active role in their own healthcare management do better, enjoy a better quality of life, have fewer complications-and cost less. Paternalism is giving way to partnership; process centred healthcare is giving way to patient centric care and consumer healthcare is emerging as a signiﬁcant driver in the sector. Citizens are already spending an increasing percentage of their disposable income on healthcare and are making more decisions concerning their treatment. The informed, knowledgeable and increasingly demanding patients will be at heart of the healthcare system. Because of technology development, it is likely that especially the patient-doctor relationship will radically change. The future of technology will be development of a new relationship between the patients and the care professionals. The likelihood is that patients will adapt and ﬁnd it normal and natural for a physician ask for second opinions on-line and access information a range resources to help reach the right decision about treatment, based on the best available evidence. All this development means that the health care professionals are loosing their knowledge autonomy to two different directions. One direction is the health care organisation and the other direction is the citizen. In the future health care organisations need and use only structured documentation and information. Also all evidence based models and regional guidelines are based on structured information. This is limiting the professionals to use their knowledge autonomy in their own individual way. [5,6]

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Figure 1. The knowledge autonomy moves from health professionals to the organisation and to the citizen.

4. eWork and the working time perspective The trends of the new working time regime are yielding the collective regulation, differentiation, separation and vague limits of working time. We can speak about a working time mosaic, which has replaced the coherent, regulated and industrially disciplined working time regime. Along the new socialisation processes ﬂexibility and adaptation to changing needs of working time in work places have taught us to see them similarly self-evident as the adaptation to the discipline, regularity and monotony of the industrial working time regime. In the 1970s the hundred-year-old trend of shortening industrial working time ended, slowed or changed direction. The vision of shortening working time in the industrialized society is no longer self-evident. Working time becomes non-political, when it is redeﬁned as questions of success of enterprises and organisation of work. A new common trait is that especially the fortunate people work long hours, whose work is autonomous, well paid and who usually promote a personal career. [7] We can also distinguish two pictures from the working time regime. According to an optimistic vision, the post-industrialized time organisation will be approved just like the industrialised one was approved. Time is received from traditional, industrial, community and biological qualiﬁers. Industrial leisure-time institutions (free evenings, weekends, annual leave, pension) are disappearing. Several agencies are open 24 hours a day, and it will be approved to do anything anytime. Irregular working time will not be such a problem as is was during the industrial regime. People may utilise the working time mosaic, for example in order to share parenthood by taking turns in working and staying at home. A more pessimistic vision foretells that people cannot adapt to changing working time rhythms and uncertainty of work. Problematic consequences of irregular and asocial working time do not disappear instead they become more common. Safety and community of collective social rhythms and routines (free evenings, weekends, holidays) cannot be replaced. New individual rights of working time (sabbatical years, spare holidays, care leaves, ﬂexible working time, etc.) are poor substitutes for the loss of old rights. [8] The fact that information work in health care is movable, in other words it can be detached from temporal and spatial connections, is one of the most profound characteristics which obscures the borders between working time, work and leisure time. So far,

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working time in information work of health care is not known – how uniform or varying the different personnel groups’ working time will be, from day or week to another, where this work is done (hospital, on the way to work, home or elsewhere), how times, places and tasks are connected to each other, and whether vacations and weekends are compromised. Increase of knowledge intensive work in health care may create totally new trends of working time – working time is diversiﬁed, stretched, ﬂexible, and a working time mosaic is emerged. It is known that highly educated experts have ﬂexible working times, but the mechanisms leading to this are not clearly known. Is it a free choice or an inevitable consequence of numerous facts [9].

5. Conclusion Utilising the information and communications systems contains the most sustainable development potential in the healthcare. The main focus in the development work has been put on the growth of technology market and that way on the competitiveness of the country or the whole continent. The role of technology in the management of healthcare and thus the improvement of the productivity of the whole ﬁeld of healthcare has received less attention in the discussions while at the same time the traditional ROI has been more or less disappointing in eHealth sector. Before we can achieve cost effective and productive health system based on a new technology we need to take many new costs. We need to buy new devices and workstations, pay telecommunication costs, pay for many new licences and educate thousands of people. We also need to avoid all security and justice risks. As a consequence of this the role of information technology as such does not increase the productivity of healthcare. The growth in productivity is directly related to process- and organisational innovations and especially in the employees’ possibilities to adopt the information systems and new courses of action. Exploiting these possibilities to their full potential requires extensive changes in the structures of the health care service systems, operational processes, management, wage structure and working hours. The returns of investments and gaining the potentials also depends on how we succeed to get consensus on critical questions. These questions are information content, representation and capture, technical interoperability and standards, security and legal issues and software needs. For instance our experiences in using new technology in wards is that the time a doctor needs to spend on a ward round has increased about 25%. However it is cost effective to undertake electronic ward rounds because they have improved the working patterns on the wards and a doctor can do everything he needs at the bed side. Assistant staff and secretaries can handle more patients and the productivity of the hospital has increased and has been one of the best in Finland according to DRG- related benchmarking. As mentioned above apart from ﬁnancial gains and savings eHealth also has many other dimensions. In North Karelia region the co-operation with primary care has increased very much. When the patient has been in a hospital having investigations and hospital care, or maybe even having some procedures done by the physician in primary care, the general practitioners always receive the discharge letter electronically. This is important, so that they can record the discharge letter ﬂexibly in their own electronic patient record system, where it can be used when the patients returns to their care. In hospi-

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tal wards patient circulation is faster, they can receive new patients more effectively and the general atmosphere in the wards is better. All doctors in these units use the system and they do not want to go back to the traditional way of working. A common digital archive with primary care means remarkable savings for healthcare as it stands. They help cut down the costs which occur with traditional paper documents and archives. More importantly, the archive enables completely new regional healthcare models that require online availability of patient information regardless of time and place. Technology also creates fundamental conditions for strategic management in the public sector. In the future the performance of health care can be evaluated reliably from various aspects. Also the staff can be remunerated using performance related pay based on reliable indicators rather than employing the traditional system of equal remuneration. In Finland almost 80% of private sector employees receive performance related remuneration of some sort. According to researches carried out in Finland the use of performance related remuneration also decreases the probability of the resignation of the staff. Performance related pay is a more effective way for companies to reduce the turnover of the labour force than overall raises in the wages. Performance related pay together with technology engages the key personnel to the company, increases the wage ﬂexibility and enables ﬂexible working hours and the possibility to work according to the pace best suitable for each individual worker.

References [1] Terve-project. Project plan and Final Report. The regional subsidy 6 of the ERDF. North Karelia Hospital District. Joensuu 2000. [2] Sesam-project. Project Plan and Final Report. The Agenda 2000- Programme European Union. North Karelia Hospital District. Joensuu 2002. [3] CHIN-project. Co-operative Health Information Network. Telematics Application Programme. European Union. Final Report 1999. [4] RESHEN-project. Regional Secure Healthcare Networks, IST-2000-25354, Action Line: 1.1.4. [5] Itkonen P: Finnish Health Telematics Approach for Patient Centric Care. Advanced Health Telematics and Telemedicine. The Magdeburg Expert Summit Textbook. B.Blobel and P.Pharow (Eds.) IOS Press 2003. [6] Lorenzi M.N, Riley T. R. Organizational Aspects of Health Informatics. Managing Technological Change. Springer New York 1995. [7] Sennett R. The Corrosion of Character. The Personal Consequences of Work in the New Capitalism. W.W Norton&Company, New York&London 1998. [8] Roberts K. Work and leisure, the recent history of a changing relationship and the related research issues. Vrijetid studies 1998; 1: 57-67. [9] Itkonen P: Development of a Regional Health Care Network and the Effect of Knowledge Intensive Work on Personnel and Organisation. Methods of Information in Medicine 2002; 41: 387-392

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UUMA Regional eHealth Services in the Hospital District of Helsinki and Uusimaa (HUS) Kari HARNO Helsinki University Central Hospital, Hospital District of Helsinki and Uusimaa, Finland Abstract. The UUMA approach is based on a stepwise implementation of integrated regional healthcare services to create a virtually borderless healthcare organisation - a patient centred virtual workspace. In the virtual workspace multiprofessional teams and patients collaborate and share information regardless of time and place. Presently the regional ehealth network is comprised of four different integrated services between primary, secondary and tertiary care within the county of Uusimaa. The strategic healthcare modules consist of an (1) ereferral and econsultation network, (2) a knowledge-based disease management platform, (3) PACS system and (4) a universal model for integrated regional services between professionals and patients by a link directory service. The ereferral between primary and secondary care not only speeds up the transfer, but also offers an option for communication in the form of econsultation between general practitioners and hospital specialists. By sharing information and knowledge remote econsultations create a new working environment for integrated delivery of eServices between the health care providers. Last year over 60.000 eReferrals were transferred between health care providers. When associated with viewing of patient data through the link directory, interactive econsultations enable supervised care leading to the reduction of outpatient visits and more timely appointments. The link directory service extends the dimensions of networking between organizations by combining legacy systems within regional primary and secondary care. The link directory is an interface to diverse patient information systems, like HUSpacs, containing links pointing to the actual patient data located in remote information systems. The original data including images can be viewed with a web browser, but data can be accessed only with the patient’s informed consent. The chronic disease management system is disease speciﬁc: information is utilised in parallel to viewing other relevant medical data through the link directory. We aim to create a new working environment for professionals by incorporation of innovative information and communication technology, new organisation of work and re-engineering of workﬂows. The citizen has an active role in deciding on the use of his medical information, participating in decisions on his care, carrying out guided self-care and taking steps of pro-active prevention.

1. Introduction All nations feel the pressure of an increasing demand for health care services. This is mainly due to an aging population and associated with uncontrolled medical costs. Ba-

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sic healthcare costs could decline as aligned consumer/purchaser incentives toward selfcare, prevention and health maintenance emerge. Many attempts have been undertaken to shift a major emphasis onto health promotion and prevention of manifest diseases. Teleradiology is evolving from a point-to-point application to a universal network closely resembling the Internet. A picture archiving and communication system (PACS) that uses digital data held in a single or distributed database and is accessible through a network, offers new interfaces and gateways to healthcare facilities. This enables hospitals and clinics to reengineer new seamless clinical processes both within hospitals and between remote health care institutions. The necessary cultural change to achieve a transformation of health care work by integrating primary and secondary care with information technology may be deeper than it sounds [1]. First of all, the different actors in health care must be actively networking together. The care between them must be genuinely seamless so as to allow a global assessment of the clinical condition. In addition, the responsibility to orchestrate the care must be deﬁned clearly. Incentives must be adapted along these functional requirements. Unnecessary clinic (and hospital) visits should simultaneously be reduced to a minimum.

2. Population and eHealth services The Hospital District of Helsinki and Uusimaa (HUS) covers 21 hospitals and over 60 health centres. These health care organisations serve over 1, 4 million citizens, whose patient data may soon be accessed online irrespective of its origin. They are treated by means of modern, innovative ehealth services, a service portfolio called UUMA. At present, UUMA consists of the following modules: 2.1. eReferrals and eConsultations – electronic referrals and interactive remote consultations We have set up a wide-area referral network in the metropolis area (1 million inhabitants) of Helsinki between primary care and three university hospitals. This network was initially launched in 1990. In the university hospitals all specialties are involved. In 2002 there were 67,000 e-referrals transferred between the Helsinki University Hospitals and primary care. The solutions extend from the initial VPN use (Vantaa) to EDIFACT standard (Espoo) and HL-7 (Helsinki). A transition to standardized HL7 messages utilizing C-way message transfer systems (HUSway) through a single Network Access Point (HUSnap) is in progress. 2.2. HUSpacs – one of the largest regional PACS in the world HUSpacs, the PACS of the Hospital District of Helsinki and Uusimaa (HUS) is one of the largest regional PACS installations in the world. In total, over 1,000,000 examinations will be handled per year, representing around 20 terabytes of imaging data completed on about 300 connected modalities. HUSpacs project started in 1997 and will be ﬁnished by the end of year 2004.

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2.3. Navitas Link directory – for locating and viewing patient data from diverse information systems The link directory is a central reference database containing links to patient data stored in their legacy systems. The upgrading of the legacy systems is made possible by application integration across the extended regional infrastructure. Provider access is possible by web browsers and patient information includes (primary care/hospitals) visits, critical data, EOE (laboratory and imaging), images and reports, laboratory results, referrals and discharge letters. All data is sorted according to social security coding, which is standard procedure in Finland. Standard API connections between primary care information systems and the reference data are installed. The documents are produced in CDA format and messages transferred in a standard pattern (XML/HL 7). 2.4. ProWellness chronic disease management system – web and mobile based system for treating chronically ill patients The Hospital District of Helsinki and Uusimaa and primary care organizations are utilizing a software program, which is a client/server system. The clients are web-browsers and the server is a web-server running Windows NT. Patient data is owned by the care unit, but joint usage is possible, when mutual agreements are made between the organizations. All patient information is gathered to a central regional database. The solution is XML-based and uses open standards like HL7. Data transfer protection is handled mainly by SSL (secure socket layer) and also with smart cards. Laboratory results may be fed directly or transferred as HL-7 messages from the laboratory system to the diabetes management system. Digital fundus cameras are used for initial screening and follow-up of diabetic retinopathy and they are linked directly to the diabetes register. The retinal photographs and the ophthalmologist’s statement may be viewed in the user interface. Pictures are stored in shared PACS archives and data may be retrieved to the server, examined by the consulting doctor and compared with previous retinal status by the networking ophthalmologists. 3. Results 3.1. eReferrals and eConsultations Present health care systems are hospital oriented and there is both sustained growth in demand for these services and increase in their costs. Efﬁcient support for the work of the primary care physician is needed to manage the demand and also for cost containment. Communication by surface mail is slow and not interactive. The use of telephone is hampered by the interruption it causes, the difﬁculty to get hold of the specialist and the lack of access to the medical records by the hospital doctor. One promising area of ehealth is the electronic referral, which not only speeds up the transfer but also offers an option for communication between the primary care physician and the hospital specialist. By sharing information and knowledge remote econsultations between primary and secondary care physicians evolve into a new working environment for integrated delivery of eservices between the health care providers. Besides transferring data or information between providers, networking partnerships have to be structured by mutual agreements.

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The underlying model of the electronic referral process is: • • • •

the referrer initiates an e-request the organization receives it the organization allocates it for reply the responder replies to the initiator.

The ereferral module has been in production for over ten years and has gone through extensive assessment studies by us [2–6] or analyzed by third parties [7,8]. In these studies the ereferral system has decreased the need for secondary care services by reducing ﬁrst visits to outpatient clinics by 36 % and in less urgent cases by 50 %. The system allows more patients to be treated at less expense. Because all patients are thoroughly examined beforehand, the numbers of repeat visits as well as direct costs remain lower. We have shown convincingly that the interactive use of an eReferral system improves access to an adequate level of care and even large scale use results in more timely appointments. By prospective follow-up studies we have been able to prove that the quality of health care using remote eConsultations is consistent with outpatient face-to-face visits. 3.2. Regional HUSpacs HUSpacs has a common database for 21 hospitals, which ensures the availability and low cost of imaging services offered also to the 32 communities in the hospital district. HUSpacs also contains examinations ordered from HUS by over 60 primary care centres. Even if there is one common image database in the HUS area, it is logically divided for images of different organizations. Examinations ordered by the primary care are routed to the web servers situated therein. General practitioners may view images with web browsers. The aim of the regional HUSpacs is to ensure seamless radiological services in secondary and primary health care in the HUS area. The examinations are archived electronically to a regional image archive and are securely viewed via the network in any hospital or health care centre. The reporting radiologist or the clinician can consult or compare images regardless of the organization they have been taken in. The image trafﬁc is controlled by a time reservation system and a radiology information system (RIS). An X-ray referral, which has one or more examinations, is written to the RIS system. No images are printed on ﬁlm or paper any more; the operation is ﬁlm-free. There is a common regional long-term and back-up archiving of images that has been bought as an ASP (application service provision) service. Each hospital or a hospital group have their own local RAIDs for short-term online archiving. The capacity of the fault-tolerant RAIDs is sized to store 1-2 years of image material. Advantages of HUSpacs [9–11] are: • • • • • • • •

less transferring of patients; ﬂuency of health care chains and better quality of care avoiding overlapping examinations and useless radiation exposure simultaneous interactive consultations regardless of time and place online consultations between the radiologist on duty and the clinician online availability of images and reports processing of images for improving the quality of diagnostics decrease of the cost of X-ray examinations by digital archiving no need to build new, massive archiving rooms

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3.3. Navitas link directory Navitas is a regional service designed to overcome the organizational barriers restricting the use of clinical information between secondary and primary healthcare. Navitas is provided as a fully hosted ASP (application service provision) service to HUS and its ﬁve member cities in the Helsinki area by a consortium of three private companies. The system was originally developed as a part of an EU funded InterCare project together with HUS and the participating companies. It has been in use since 2001. In the past patient information located in different organizations was inaccessible online for the professional. The only way to access information was to order the papers by post. In addition to the costs and long delivery time, the difﬁculty was to know which systems contained relevant information. The Navitas service has been designed to overcome these barriers and to enable a seamless, cross-organizational access to patient records in the HUS region. The core of the regional Navitas service is the Navitas Link directory. It is a service which maintains a regional directory of links pointing to patient and treatment information located in any of the connected health care information systems in the region: each participating organization has its own patient information system in addition to the 11 presently stand-alone patient information systems in HUS. HUS has also many other clinical information systems e.g. the laboratory system and HUSpacs, which have all been connected to the link directory. At the moment there are 15 patient information systems connected to the Link directory. A speciﬁc adapter software has been installed locally into each of the systems through which links are fed into the Link directory. Links are HL7 (Health level 7)/CDA (clinical document architecture) compliant messages containing the identiﬁcation of a patient and a short description of the contents of the particular patient record. No actual records are stored into the Link directory. Navitas has a regional user database and centralized authentication and authorization services; this enables the participating organizations to have complete control over their own users. The health care professionals can access Navitas from their personal workstations using a web browser. The data transfer is encrypted and only private, dedicated networks are used to transmit the data. Viewing of the patient data through the links requires the patient’s informed consent. When clicking a link, a window will open up to display the actual clinical information. The information is queried by the Navitas Link directory from the patient information system itself. The view provided by the Link Directory is a read-only view, structured in a user-friendly and visual way. The Navitas Link directory service is available today for the health care professionals in the Metropolitan Helsinki area. The directory contains information about over 700.000 citizens. Currently there are about 11 million links in the database. The number of links has been minimized in order to make it easier for the professional to get a holistic view on the patient’s medical history. In HUS, for example, several visits are grouped into one care period. 3.4. ProWellness chronic disease management system Diabetes Management Systems or diabetes registers have been in use in Finland since 1997 and presently more than 18.000 diabetics are registered. This means that 12 % of the 150.000 diabetics in Finland are included in these management systems. Nine

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out of 21 hospital districts operate diabetes registries. The number of diabetics in these registries ranges from 350 to 8.000. A regional diabetes data register has been installed in the Hospital District of Helsinki and Uusimaa in 2001 [12,13]. All nine hospital districts are utilizing an identical software program, which is a client/server system. The clients are web-browsers and the server is a web-server running Windows NT. The diabetes care system may be networked throughout regional care units involved in diabetes care. Patient data is owned by the care unit, but joint usage is possible, if mutual agreements are made between the organizations. Since all patient information is gathered to a central regional database this makes the system interoperable nationally as well. It is xml-based and uses open standards like HL7. Data transfer protection is handled mainly by SSL (secret socket layer) and also with smart cards. The ProWellness system is content independent and supports both the professionals and patients within the care process. The ProWellness system is a district wide system, which integrates the different care units and the patient into one seamless care team. The system consists of two parts: 1) clinical care management system for health care units and 2) self-care systems for people with chronic conditions. The solution may be accessed through secure web links by healthcare professionals in the area. This accessibility enables information sharing between care-givers providing them with real-time information on patient health status, care balance and visits to other care units. The system currently has 30 users in HUS located in both primary and secondary care. All the diabetic patients in the region can be treated within the system. The system sets no limits to the number of patients and hence the HUS staff can add as many patients to the care management program as they wish. 3.4.1. Clinical Care Management Software The software helps health care professionals compare the health status of own patient groups with the whole population, track down problem areas and issue development programs, and see outcomes of interventions. To obtain consistency in care, it offers a frame for good quality care of an individual patient, providing tools and knowledge for daily routines. The network technology enables using full patient records when needed

Figure 1. ProWellness’ district wide and patient centered care process.

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Figure 2. Self-care system.

ensuring continuity in care, and adapting a shared care model among primary and special care. Through ProWellness Care Link system the patients’ self-management data can be viewed directly from the Clinical Care Management software allowing the patient to be an active member of the care team. 3.4.2. ProWellness Self-Care System In diabetes self-care, the patient unloads the measurements directly from the blood glucose meter using a modem or mobile phone into the ProWellness database. The system stores the results and generates reports which are available also to the patient if he/she has an access to Internet or digital television. This enhances patient empowerment and the collaborative care model. The care team may have an access to the home diary with the patient’s consent. ProWellness Self-Care System offers people a new easily accessible environment to manage their self-care. The tools are designed for people having chronic disease and are used to follow up body parameters – blood glucose, blood pressure, pulse, weight, etc. The systems are developed on same set of applications and can be scaled to handling any other self-care processes. 4. Summary The initial beneﬁts from the eservices have emerged in relation to access to care, quality of care and economics. Several studies on the assessment of the eservices have been launched in the hospital district and in due time they will reveal information that may be used to develop the services further. Access to care • Regional equality in combination with networked expertise: the same quality of care is now available in all parts of the Hospital District. • Timely care: ereferrals and econsultations have resulted in more timely appointments.

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• Pro-active self-care: chronically ill patients have taken an active role in the care team. Quality of care • Seamless care: re-engineering of the workﬂows has enabled seamless care chains. • Shared information: the shared information is available regardless of time and place. • Patient safety: unnecessary radiation exposure has been reduced. Economics • Use of resources: larger share of patients have been managed in primary care. • Less examinations: by avoiding overlapping examinations, costs have been reduced. • Filmless imaging: regional PACS brought savings of 5.6 M€ in 2002. References [1] Harno K, Grönhagen-Riska C, Pohjonen H, Kinnunen J, Kekomäki M. Integrated regional services: are working process changes desirable and achievable? Journal of Telemedicine and Telecare 2002; 8 (suppl 3):26-28. [2] Harno KSR. Telemedicine in managing demand for secondary care services. Journal of Telemedicine and Telecare 1999; 5:189-192. [3] Lillrank P, Paavola T, Harno K, Holopainen S. The impact of Information and Communication Technology on Optimal Resource Allocation in Healthcare. International Conference on TQM and Human Factors – towards successful integration. Linköping, Sweden 1999. [4] Harno K, Paavola T, Carlson C, Viikinkoski P. A prospective study of an intranet referral system between primary and secondary care on clinical effectiveness and costs. 3rd Nordic Congress on Telemedicine, Copenhagen, Denmark 2000:64. [5] Harno K, Paavola T, Carlson C, Viikinkoski P. Improvement of health care process between secondary and primary care with telemedicine – assessment of an intranet referral system on effectiveness and cost analysis. Journal of Telemedicine and Telecare 2000; 6:320-329. [6] Harno K, Arajärvi E, Paavola T, Carlson C, Viikinkoski P. Patient referral by telemedicine and videoconferencing in orthopaedics – effectiveness and cost analysis. Journal of Telemedicine and Telecare 2001; 7:219-225. [7] Wootton R. Recent advances: Telemedicine. BMJ 2001; 323(7312):557-60. [8] Roine R, Ohinmaa A., Hailey D. Assessing telemedicine: a systematic review of the literature. Canadian Medical Association Journal 2001; 165(6):765-71. [9] Pohjonen H. Image fusion in open-architecture PACS-environment. Computer Methods and Programs in Biomedicine 2001; 66: 69-74. [10] Kinnunen J, Pohjonen H. PACS in Töölö hospital. Computer Methods and Programs in Biomedicine 2001; 66: 31-35. [11] Harno K, Roine R, Pohjonen H, Kinnunen J, Kauppinen T. A framework for systematic assessment of the regional HUSpacs after the reengineering of hospital and external processes. CARS 2002, Computer Assisted Radiology and Surgery; 618-622. Lemke MW, Vannier K, Inamura AG, Farman KDoi K & Reiber JHC (editors). Springer-Verlag Berlin Heidelberg 2002 and CARS. [12] Harno KSR, Pekkarinen T, Kauppinen-Mäkelin R, Paavola T, Böckerman M. A mobile, webbased IT support system in the treatment of newly diagnosed T1DM. 8th DOIT (Diabetes Care Optimization through Information Technology – Study Group of the EASD) Workshop, 7th – 8th September 2001, Sterling, UK. [13] Harno K. E-enabled integrated diabetes care. 4 th Nordic Congress on Telemedicine/Norsk Telemed 2002. 30 September – 2 October 2002. Tromso, Norway.

2. eHealth Systems and Services for Health Professionals

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Telemedicine – Contribution of ICT to Health Markku ÄÄRIMAA Docent of surgery Secretary general of the Finnish Medical Association Abstract. ICT opens new possibilities to health care and practice of medicine, but carries some inherent risks as well. Based on a study conducted by the CPME representing European doctors current telemedical practices and difﬁculties encountered by doctors are reported and next important steps are proposed. An European e-Health Highway should be built and obligatory standards for it and for all software used in the health care should be urgently ﬁxed. The medical profession should take care of practical guidelines for doctors, and authorities should agree on international collaboration to supervise the practice of medicine over the net. Telemedicine should be a normal part of the national healthcare systems, and telemedical services should be reimbursed as any other medical services.

Modern and developing information and communication technology offers huge possibilities to health care. ICT may modify the whole sequence of events from maintaining health, meeting disease, contacting health care, receiving treatment and controlling costs to the use of accumulated information for analysing risks and planning preventive measures for the population. The accumulation of vast amounts of documents is typical in health care. The archiving of patient records, x-ray- and other pictures, electrograms and lab results is space consuming, expensive and laborious. With the help of ICT archiving in electronic form is much easier, less expensive and more automatic. Retrieval of documents is fast and effective. Conﬁdentiality can also be better taken care of, as all documents can be individually protected. This is not possible in paper archives, where those seeking patient records have access to all documents in the archive, and documents are used in a number of unprotected places. Sending documents from one place to another with conventional means is time consuming and costly. Not to speak of sending a patient to another doctor for consultation in cases where sending information may sufﬁce. Undue delays, lost working hours and travelling expenses can be reduced with proper use of electronic transmission of relevant information. Electronic networks make it easy to transmit written documents, pictures and sound and consult e.g. expert radiologists, pathologists or cardiologists. In some cases patients can seek advice “electronically” from their own doctor who might be far away. A lot of relevant information, both for patients and doctors is available in the net. Perhaps our systems of providing health services ought to be adapted to the new possibilities. New dynamics could be introduced in health care if patients could make their

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choices based on accurate information of available treatments, doctors, waiting times, cost of care and quality of services. Data, e.g. of contagious diseases can be automatically collected from large areas. The collected e-data can then be transformed into meaningful statistical information with much less difﬁculty than information collected in paper form. Can we swallow all this without jeopardising existing valuable elements in health care, like the good personal patient-doctor relationship based on familiarity and trust? Can the individual responsibility of a doctor be pushed into the vast and anonymous network? Some risks and adverse behaviour have already been encountered. The interface between the huge potential of ICT and human being is the screen of a computer. Doctors may be seduced by the screen and concentrate their attention to it while the real source of information, the patient, is sitting at their side. Patients may be tempted to seek advice from the net, while their condition should cry out for face-to-face consultation with a doctor. The information obtained from the net can be erroneous, and technique may fail. Important documents produced by one software may be unreadable by another. Viruses may destroy systems and documents and hackers may try to break conﬁdentiality. All new technologies have their inherent risks, which have to be remembered in the pace of development. The speed by which ICT applications have emerged in health care is remarkable, although changing working habits is far less speedy. New terms, like telemedicine and e-health now belong to every day vocabulary. It has been said that telemedicine is the fastest growing branch of medicine today.

Deﬁnition of Telemedicine Telemedicine is one way of practicing medicine which may provide opportunities and increase possibilities to effectively use available human and material resources. According to the Standing Committee of European Doctors (CPME) deﬁnition telemedicine refers to the practice of medicine over a distance. In telemedicine interventions, diagnostic and treatment decisions, recommendations are based on data, documents and other information transmitted through telecommunication systems.

Current Practice of Telemedicine The CPME performed a study in 2000-2001 asking the medical associations of all EU countries to which extent telemedicine is practiced and what the problems are. According to the responses it can be concluded, that telemedicine was practiced in various forms in all EU-countries, but nation-wide systems and routines did not exist yet. There are a number of entrepreneurs in the public, private and insurance sectors. Hundreds of projects are under way, which usually are of small scale and experimental. Summarising the results it can be stated that telemedicine in Europe is in early infancy but growing. Any “telemedical culture” has not emerged yet.

Encountered Problems IT technology has reached practical applications in medicine only very recently, and the majority of European doctors have never had education in telemedicine or electronic

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communication in general. For many doctors well working medical routines do not seem to need additional possibilities offered by telemedicine. Knowledge in this ﬁeld is however increasing: nowadays courses of IT-technology belong to the curricula of medical students in many universities. As no uniform ways of practicing telemedicine still exist, education remains on more general areas. Basic IT-knowledge, the use of internet and searching medical literature usually belong to these courses. Time is needed in order to get a critical mass of professional users literate in this new area. Those who use telemedicine report many problems. Reliability of networks is criticised. Defects in reliability lead to the exclusion of many important areas. Services in acute situations can not be offered, if experience says that connection can break even when maintaining it is vitally important. Lack of standardisation and legislation, problems in assessing qualiﬁcations, problems with security, lacking possibilities to identify doctors and patients and many kinds of technical problems belong to complaints reported by users. For some services, like transmission of high quality 3-D visualisations require network transmission speeds which are not available. One of the major obstacles on the way to wide use of telemedicine is incompatibility of systems.

European e-Health Highway Reliable and safe high speed networks dedicated for e-health are needed. An European e-health highway should cover all EU countries. The access to this highway should be free for all doctors, other relevant health professionals and authorities. It should allow transmission of documents, communication between professionals, retrieval of patient data and transmission of epidemilogic and other information. TV-techniques are already used for “live” consultations and more operations are performed in the future robotically, over long distances. All this requires considerable network capacity and high reliability.

Standards are vital For the future development of e-health it is vitally important that only approved standards are used in telemedical communication. Standards should be set for all documents used for professional purpose, starting from coding protocols, archive formats and retrieval systems. Transfer protocols and other technical solutions for communication should be standardised. The aim should be that all software developed for e-health are compatible with all the others and no one can get a dominant position in the development by patenting or by other means. Only open architecture should be allowed, income should be generated from health services rather than from dominating technology. New e-health solutions emerge with increasing speed. Without regulation we can end up with a situation, where there is big number of players on the ﬁeld without a common game. With investments and rooting routines each of the players grow more and more bound to their own sophisticated systems. Therefore setting standards in an early phase is now an urgent matter. This should be done by EU and national authorities rather than by industry alone.

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Creating Common Medical Language Medicine is a very international discipline, but medical culture is not independent from local cultural backgrounds. It can be observed that the evolvement of medical practices and language has taken many slightly different directions. Diagnoses can vary for same conditions, and even bigger variations exist in the terminology of diagnostic and therapeutic procedures. Selling and buying health care services will be more common in the future, for which purpose DRG (diagnosis related group) systems have been developed. There is a large variation in the composition of DRG:s, even nationally. In order to allow comparison of prices and related expenses also DRG:s should be harmonised. In local practice it is not very important if the use of terminology is different in a faraway place. In telemedicine distance and national borders lose much of their importance. Understanding right can become a problem and it may be necessary to harmonise medical language. To some degree harmonisation can be anticipated together with growing collaboration.

Reliability, Security, Identiﬁcation of players Projects have been started in the EU for assessing the value and reliability of health information in the net. When e-health systems are professionally used it is important, that there are reliable sources of information on authorised doctors and providers of health services, like hospitals. The authorities should agree with professions in which way and what information should be displayed, and what are the conditions for the use of these sources. When personal services are given over the net, it is important that the partners can identify each other. Especially the doctor – patient relationship is a personal contact, where this aspect is essential. Anonymous use of telemedicine should be allowed neither for doctors nor for patients regardless of the status (commercial or non-commercial) of the service. Reliable methods for identiﬁcation of the players are needed also when working with colleagues, pharmacies, insurance systems and authorities. Electronic ID –cards could be one tool for identiﬁcation purposes. A doctor’s card could show his/her name, competence, speciality, nationality and registering authority. Patients could as well have electronic cards showing their identity, nationality and sickness insurance systems. Health cards and methods for electronic signature have been developed in the EU for years, and the work goes on. It is important that solutions are simple and easy to use. Massive management requirements will halt the development of e-health and should be avoided.

Guidelines and Rules According to the medical directive (93/16/EEC) doctors are authorised to practice medicine in all EU countries if authorisation is granted to them in one. The interpretation of the CPME is the same as that of the Commission: the directive gives authorisation to doctors to practice telemedicine over national borders in Europe.

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This may not be enough as professionals are quite cautious in starting new ways of practicing medicine without clear information how that can be done and what the rules are. To lower the starting threshold, speciﬁc guidelines are needed. The CPME has given several sets of guidelines like “ethical guidelines in telemedicine” and “CPME guidelines for e-mail correspondence in patient care”. The Directive on certain legal aspects of electronic commerce in the internal market invited professions to regulate themselves on marketing in the net. The CPME pursued this request, and has approved “Good practice guide for marketing professional medical services over the net”. These guidelines are published in “CPME guidelines for Telemedicine”.

Supervision of Telemedicine When the practice of telemedicine increases it is more and more important, that the practice of medicine in the net can be controlled and supervised to ensure patient safety and high quality. In all countries there are bodies and authorities for this purpose, but there is much to be improved in international collaboration. Supervision of the practice of medicine is largely based on patient complaints. In telemedicine the patient and the doctor can be situated in different countries, and it may be difﬁcult for the patient to execute his/her right to complain in this situation. The aim should be that the patient is able to make a valid complaint in his/her country although the doctor might be in another country. The supervising authorities should collaborate in this situation, and authorities of the country of the doctor should then take necessary actions. Authorities supervising doctors should agree on methods used for this purpose.

Liability and Patient Insurance Lawsuits have increased also in European medicine with an alarming rate. Accidents happen in health care and working over the net does not change this fact. So far there are only sporadic cases of reported errors in telemedicine and their consequences. When practicing over the net the doctor has to face the possibility that a wrong decision or advice could ﬁnally be settled in a court of a foreign country. For the doctor or other professional it is difﬁcult to estimate the seriousness of these risks, and uncertainty will certainly delay the development of services in the net. One possibility to eliminate this obstacle is to introduce patient insurance for the international practice of telemedicine. Patient insurance is operational in health care in the Nordic countries, where a great deal of costly and time consuming law suits has been avoided.

Reimbursement of Telemedicine In order to get telemedicine on its wings it is necessary that telemedicine is treated as any other form of medicine. It should be integrated to the national health care, publicly subsidised and reimbursed by the national social security systems. Reimbursement of services should follow the patient and be possible across national borders.

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Educating e-Health The role of IT-technology increases rapidly in medicine, and basic skills of the use of computers and networks must be a part of all future medical curricula. In some areas of practicing medicine over a distance is nothing new. Radiologists and pathologists are used to give expert opinions of x-ray pictures or biopsies telematically, while speciﬁc skills may be required in other ﬁelds. The impact of technical equipments between the patient and the doctor must be understood, and the situation where the diagnosis is based on live voice or picture is different from a normal doctor-patient contact. In some areas telemedicine requires unique techniques. Telerobotical operations differ from what surgeons normally learn. Disciplines dedicated to the use of telemedical techniques probably emerge. Telemedicine is best suited for doctor-to-doctor consultations, and the ﬁrst contact to a doctor should always be a face-to-face consultation. IT offers however many possibilities to patients as well. Patients seek already much health information from the net, and in the future more health services will be available. As applications appear, people should know more about e-health. It should be considered what schools could do to increase e-health literacy.

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SURGETICA at Grenoble: From Computer Assisted Medical Interventions to Quality Inspired Surgery P. CINQUIN, J. TROCCAZ TIMC-IMAG, UMR5525 UJF&CNRS, SIIM-CHU Grenoble, France G. CHAMPLEBOUX, S. LAVALLEE PRAXIM, LA TRONCHE, FRANCE Abstract. Research on “Computer Assisted Medical Interventions” (CAMI) was initiated in Grenoble in 1984, as an attempt to take up the challenge of “Minimally Invasive Interventions”, thanks to the introduction of Information and Communication Techniques in the Operating Room. In a ﬁrst section, we will describe our initial vision. The corresponding achievements will then be presented. A ﬁnal section will show that the challenge now is to “invert this movement”: instead of moving the computer in the Operating Room, we should embed the surgeon (or at least his or her expertise) into the Information Technology based tools he or she uses.

1. Computer Assisted Medical Interventions (CAMI) at Grenoble 1.1. A brief “History” of CAMI at Grenoble Year after year, medical interventions become more and more “minimally invasive”, implying that the operator’s natural senses be taken over by artiﬁcial sensors and that the operators natural dexterity be assisted by stable, accurate, and safe guiding devices. The kind of miniaturisation that medical intervention has now achieved makes the introduction of ICT a key point for further progress in minimally invasive interventions. The medical objective of CAMI therefore is to perform previously deﬁned operative strategies more accurately and less invasively by use of guiding systems under intraoperative sensor surveillance. When this research was launched in 1984, a methodological framework had to be developed, the technical feasibility had to be proven, the medical interest had to be established, and the potential for a real “market” was not obvious. Nowadays, the methodology we deﬁned is widely accepted, and numerous clinical studies established the clinical added value of systems that are sold by several strongly competing international companies for a wide variety of clinical situations. The team that was set up at Grenoble played a key role in this evolution, thanks to several factors.

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The multidisciplinary characteristic of this team is the ﬁrst of these factors. From the beginning, this team very closely associated clinical partners, scientists, and companies. This represents today a “task force” of about 110 people (35 in a team of the TIMCIMAG CNRS&UJF Laboratory, 50 in a company, PRAXIM, 25 in various departments of Grenoble University Hospital). A real “osmosis” took place between people with complementary skills, young surgeons undertaking PhD while engineers deeply investigated surgical day-to-day practice to bring to light the scientiﬁc and technical bolts which are often hidden in the details. Close co-operation with companies took place from the start, and lead to the creation of PRAXIM in 1995. “Genericity” is the second factor. Our ﬁrst clinical success was obtained in 1989, when an image driven robot was used on more than 1000 patients to assist in stereotactic neurosurgical procedures [1,2]. We designed the corresponding methodology [3,4] in such a way that it easily allowed for extension to a wide variety of medical and surgical domains. Thirdly, lightness of the solutions is also crucial. The close co-operation with medical teams lead to the identiﬁcation of solutions that serve very precise objectives, but which respect the general surgical method. For instance, we showed that some surgical procedures may be efﬁciently assisted on the basis of physiological information that are acquired purely intra-operatively, and without any imaging modality [5], which enables seamless integration in the surgical procedure. Likewise, we came to the conclusion that a wide majority of surgical procedures can be served with “navigation” devices, which lead us to restrict the application of robotics to very speciﬁc situations. Even for these situations, we favoured specially tailored solutions, enabling man-machine co-operation [6] rather than tele-operation, and original and light robotics architecture [7,8]. Finally, European co-operation was decisive. The Information Sciences and Technology programme offered the possibility to contribute to structure the European scientiﬁc, clinical and industrial communities in the domain of Surgetics. This was initiated by the CAMI (Computer Assisted Medical Interventions) project, launched in 1994 under the AIM (Advanced Informatics in Medicine) programme, and at a much wider scale by the IGOS 1 & IGOS 2 (Image Guided Orthopaedic Surgery) projects since 1995. These projects fostered the stemming up of several innovative ideas, many of which are now R embedded in the SURGETICS station that will later be described, but also in solutions developed by TIMC-IMAG and Praxim for partners of these projects, such as Aesculap (whose OrthopilotTM beneﬁted from IGOS), or Medtronic (whose StealhTM spinal solutions beneﬁted from registration methods developed by TIMC for Sofamor, before it merged into Medtronics). This very positive context also prepared for research in medical robotics (CRIGOS, Compact Robot for Image Guided Orthopaedic Surgery, IST project), intra-operative imaging (MI3, Minimally Invasive Intra-operative Imaging, IST project) and surgical education (VOEU, Virtual Orthopaedic European University). 1.2. A sound scientiﬁc basis The experience gathered by TIMC-IMAG at Grenoble University Hospital during the late eighties had made it possible to propose a general methodology for Surgetics in three steps : Perception - Decision – Action [3,4]. Perception is performed both pre-operatively and intra-operatively. The relevant information comes mostly from medical imaging devices : Computed Tomography (CT),

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Magnetic Resonance Imaging (MRI), Digital Radiology, Portal Imaging Device (PID), Ultrasound Imaging (US), Positron or Single Photon Emission Computed Tomography (PET or SPECT), endoscopic and microscope video images are the most frequent examples. Information coming from other types of sensors borrowed from Computer Vision, such as video cameras or range imaging sensors, is also available. Various signals (electrophysiology, pressure, Doppler, tactile feedback) can be analysed. Finally, since they contribute a priori statistical knowledge, geometrical and anatomical rules and models (such as Atlases) have to be taken into account. These types of data have different and varied representations : projections (X-Rays), sections (US), series of sections or volumes (CT, MRI), anatomical surfaces (range ﬁnder), signals, evolution with time (echocardiography), and their therapeutic use requires accurate calibration of imaging devices. Decision is an important step involving both construction of patient models and intervention planning. Construction of patient models means merging all the available information in order to build a “virtual patient”. This implies accurate registering of all information sources to make optimal use of each one. Among all the registration methods available, anatomy based registration has major advantages since it is much simpler to perform, more accurate, and applicable to soft tissues. These methods, however, require segmenting complex medical images, for which active contours often offer an adequate solution. Intervention planning is the modelling of an intervention and the simulation of its morphological and functional consequences. Simulation has a visual component (navigation through complex medical structures) and a gesture component (based on modelling the interaction between medical instruments and the human body). The result of this simulation is the selection of an optimal strategy. Action consists in guiding the selected strategy while it is performed. This implies that the virtual strategy meet the real world. So, when intra-operative sensors are combined with the already created “virtual patient”, the operator is provided with “augmented reality” which is an effective combined mixture of the real and virtual worlds. Different levels of assistance exist to perform a selected strategy, including robots in some cases. In all cases, safety is essential and requires massive redundancy of sensors, processors and actuators.

2. Achievements of CAMI at Grenoble We will ﬁrstly present the typical IT components of CAMI systems. CAMI achieved a degree of maturity that lead us to launch in 1995 a start-up company, PRAXIM, which now holds a strong industrial position in the CAMI domain, and which is the European leader in Computer Assisted Orthopaedic Surgery. We will present its generic product R (SURGETICS ), then discuss its degree of implementation. Finally, we will provide instances of the on-going research at TIMC. 2.1. IT components of CAMI systems We will structure this section according to the general three steps methodology for CAMI (Perception - Decision – Action) that was designed in the late eighties [3,4].

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2.1.1. Perception a. Sources of information – Interfaces to all type of image sources have been developed, to allow their use as input of morphological information (Computed Tomography, Magnetic Resonance Imaging, X-Rays, ultrasound data). – 6D localizers : these devices are able to track surgical objects in real time; the solution currently implements a passive PolarisTM from NDI. These objects are for instance: ◦ “probes”; the tip of any surgical tool can be tracked, thus transforming said tool into a probe enabling collection of 3D data about the objects touched by the tool; for “navigation”, the relevant information is the position and orientation of the tool (a drill, for instance), with respect to the targets and dangers; ◦ bones, or organs: once equipped with a marker, the position and orientation of an organ can be monitored. b. Calibration – original calibration procedures have been developed, to enable quantitative use of the gathered morphological and dynamic data. 2.1.2. Decision Speciﬁc methods have been developed, enabling: ◦ image segmentation from 3D data sets, ◦ multi-modal image registration (elastic or rigid, 3D/3D or 3D/2D, heuristic or stochastic, bone morphing), ◦ intervention planning (modelling the consequences of the interventions, from various viewpoints: morphological, dynamical, proximity to dangerous anatomical structures, . . .). This planning may be performed before the intervention, or in some cases during the intervention. 2.1.3. Action – Surgical Navigation: speciﬁc user interfaces have been developed, that allow the surgeon to monitor in real time the action he performs, with respect to his plans. These user interfaces include both software components, and also speciﬁcally adapted surgical ancillaries. – Medical Robotics: speciﬁc robots have been developed, taking safety and ergonomics principles into account. This lead to the introduction of the concept of “synergistic” robotics, where user and robot co-operate to perform the targeted task, and to the concept of “Lightweight Robotics”, where the robot is designed to move directly on the patient. Instances of such systems will be given in section 2.4. R 2.2. SURGETICS R The Surgetics System of PRAXIM (Figure 1) consists of a universal and multifunctional surgical navigation station (Hardware with optical localizer, computer, touch

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Figure 1.

screen, display), capable of performing a multitude of applications (Software) in the ﬁelds of orthopaedics, head and neck surgery. These CE marked applications are: – – – – – –

an evolutionary endonasal navigation application (Head Surgery) a total knee Arthroplasty navigation application (Knee Surgery) a pedicular screw placement navigation application (Spine Surgery) an Anterior Cruciate Ligamentoplasty navigation application (Knee Surgery) a unicompartimental knee prosthesis navigation application (Knee Surgery) a Computer assisted dental Implantology system (Head Surgery).

R System are developed using the All PRAXIM application entering in the Surgetics same approach:

– Versatility / Universality – Reliability / Accuracy – Ease of use / Simplicity: ◦ Rapid installation

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◦ A linear protocol allows user to move forward and backward throughout the steps of the protocol ◦ Visual aids throughout the protocol ◦ Double-pedal system replaces awkward keyboard and mouse ◦ Passive rigid body : no encumbering wires during surgery ◦ Full-compatibility with standard surgical tools and work habits Each application includes a protocol guiding the user all along the different steps prior to the surgical navigation. For each step, the surgeon is provided with both graphic and on-line textual help. Each step is validated by the control pedal. The application protocol is divided into 3 main steps: ◦ Morphologic, kinematic and dynamic data acquisition, ◦ Planning of the surgery: the surgeon selects the best technique and approach that promotes mini-invasive surgery, offering the maximum security for the patient and reduce the risk. ◦ Surgical act: the surgical act that has been planned is strictly followed during the surgery. Each application is used with speciﬁc ancillary (tools) specially designed for the surgery. R station and applications are open to all surgeons. The double conThe SURGETICS trol pedal replacing keyboard and mouse sets the surgeon free. He can conduct the intervention as he is used to, enjoying the localisation of his tool. No extra time is required by R station and applications. The necessary time allotted to the the use of the SURGETICS installation of the application (5 to 10 minutes) is rapidly made up during the intervention by the comfort and conﬁdence provided to the surgeon. R are numerous and vary depending on the type of The contributions of SURGETICS surgery. However, general contributions include the following advantages. Reduction of the invasiveness of surgery: The primary goal of minimally-invasive surgery is to reduce post-operative complications while adhering to the protocol of existing surgical methods. A small incision (instead of a typically large one) diminishes the risks of infection and the threat of long hospital stays for the patient. Obviously, then, the use of a navigation station must avoid all unnecessary invasiveness: that’s why during R total knee arthroplasty, for example, the SURGETICS system does not use rigid body instruments on the knee or hip, which would require a supplementary incision. An increased level of precision: this increases the level of surgical success. In this context, the term precision has two meanings: ﬁrst, it refers to the availability of a precise surgical plan, that is, the ability to obtain enough information to choose the correct operative “path” and to construct a simulation of the possible results that is valid and accurate. Secondly, precision refers to the precision of the surgical act itself. Even if an operative plan boasts a sub-millimetric level of accuracy, the surgeon must be able to perform the surgery with the same high level of precision. This requires guiding systems (passive, semi-active, or fully-active) which are capable of following a predeﬁned plan and assisting the surgeon in situations where precision is more important than dexterity. R reduces operating time to a minimum. Reduction of operating time: SURGETICS Thus it reduces the time needed for tourniquet and the risks of contamination and anaesR reduces the amount of medical equipment and the thesia. Additionally, SURGETICS number of personnel needed.

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General facilitation of surgery: Well-tested, quality equipment and ergonomic interfaces permit the surgeon to be more at ease and thus ensure better operating conditions. The ability to perform operations that are considered difﬁcult: In certain cases, computer-assisted surgical techniques can make possible operations on organs or regions that were previously inaccessible without endangering the patient. R success through clinical results: Recording perA record of SURGETICS operative patient data into a database ensures the traceability of operations. On a larger scale, gathering post-operative results and planning in databases also allows us (thanks to R protocols in a more rigorous fashion. statistical analysis) to validate new SURGETICS 2.3. Extent of implementation Before being CE-marked, all our projects went through clinical research programmes, closely monitored by the relevant Ethical Committees and strictly observing the corresponding regulations and laws. Several of our projects are still at this stage of clinical validation (please refer to section 2.4). The objective of these clinical research programmes is to establish the clinical interest of the proposed solutions. R System was the Endonasal ApplicaThe ﬁrst CE Marked product of the Surgetics tion with the ofﬁcial date of November 19, 2001 (Figure 2). Following this success, several other applications (especially Total Knee Arthroplasty Application in March 2002 (Figure 3), Computer assisted dental Implant Surgery in May 2002, Spine Surgery in September 2002, Unicompartimental Knee Arthroplasty in October 2002, Anterior cruciate ligamentoplasty in November 2002) have been CE Marked and are currently used in clinics, hospital, and private practice (Figure 4). The process of CE marking is fully operational and 10 new applications for Total Knee Arthroplasty, derived from the generic one, have been CE marked since one year. It is important to be able to adapt an application to speciﬁc demands of surgeons and / or to be in accord with the process of the manufacturer of implant. The following applications are still in the process of CE marking waiting to be exR System: tended to the Surgetics – Intramedullary nail locking – Computer Assisted Long bone fracture reduction – Total Hip Arthroplasty

Figure 2. ENT surgery, Pr. Reyt, 1997 1 UJF/Praxim patent (more than 320 patients).

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Figure 3. Total Knee Arthroplasty, Pr. Saragaglia, 1997 1 UJF/Aesculap patent, 1 UJF/Praxim patent, several hundreds of patients.

Figure 4. ACL reconstruction, Dr. Julliard, 1994 1 UJF/Praxim patent (recently licensed to Aesculap) over 200 patients.

– Shoulder Arthroplasty – Maxillo facial navigation surgery – Iliosacral Surgery 2.4. On-going clinical and technological research R is today embedded in a surAs was described in the previous section, SURGETICS gical navigation workstation, which is CE marked for various clinical applications. The present section gives a brief overview of on-going and future validations of the application of this navigational concept to other clinical applications, describes advances in imR age acquisition and surgical planning, and illustrates the extension of the SURGETICS concept to encompass medical robotics.

2.4.1. On-going clinical validation of the Surgetics navigational concept Orthognathic surgery: in cases where the mandible has to be split in two parts, a key step of the intervention consists in replacing the posterior part of the mandible with respect to the skull. “Rigid bodies” are ﬁxed in both the posterior part of the mandible

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and the skull. When necessary, the surgeon can move the mandible, monitor its position, and replace the mandible in a perfect position, thanks to a speciﬁc user interface. First patients were operated in 1997. Clinical interest of the method was established on more than 20 patients [9]. Ultrasound-based sacro-iliac screw insertion: CT-images are used to plan the optimal position of screws used to ﬁx the sacrum to the iliac bone. A 6-D tracked ultrasound probe is used to acquire points that belong to the surface of the sacrum. These points are registered to the corresponding 3D data acquired from the CT. The screws can then be “navigated” towards their optimal position [10]. First patients were operated in 2000; ﬁrst results are encouraging. Ultrasound-based pericardiac puncture: a 6-D tracked ultrasound probe is used to deﬁne the position of a pericardiac effusion. An aspiration needle can then be navigated towards the effusion. This approach enables much more easy and accurate localisation of the position of the tip of the needle (which in too many cases goes beyond the pericardium, into the heart). After demonstration of the feasibility on animal models, a ﬁrst patient was treated with success in December 2002 [11]. Conformal radiotherapy: the objective is to increase the ratio of efﬁciency of irradiation over induced morbidity. A more accurate localization of the target is mandatory. In prostate radiotherapy, pre-operative CT images of the prostate are registered with 6-D tracked ultrasound data. This enables optimal positioning of the linear accelerator. First patients were treated since 1995 [12,13]. This approach is currently being applied to brachytherapy. Distal Nail Locking. A means to stabilize a femoral fracture is to introduce a nail in the canal of the femur. The problem of nail locking is solved by using calibrated ﬂuoroscopic image and by navigation of the screw. Total Hip Prosthesis. The same principles of the Total Knee Arthroplasty application are used to replace the hip. The goal is to navigate the position of the axis of the cup. 2.4.2. Future clinical validation of the Surgetics navigational concept Liver surgery: in radio-frequency destruction of liver tumours, accurate positioning of a needle in the liver is essential. A 6-D tracked ultrasound probe is used to deﬁne the position of the tumours, and the needle is navigated towards the target. Feasibility studies have been positive, ﬁrst patients are soon expected [14]. Vascular surgery: the positioning of endoprostheses is a key issue for minimally invasive treatment of Aortic Abdominal Anevrysms. We have proven the feasibility of improving accuracy and reducing X-ray exposure of the patient and of the surgical team, by navigating the tip of the guide of the endoprosthesis with a magnetic 6D localizer (AuroraTM, NDI). This implies registration between pre-operative CT, intra-operative Ultrasound images and magnetic data [15]. 2.4.3. Advances in image acquisition and in surgical planning Soft tissue deformation modelling: a model was developed to represent the connections between the bony structure of the face and the skin, taking muscles into account. Fitting this model to real data is time consuming, because a Finite Elements code has to be run. Elastic registration between a model that was built once and real data makes it possible to beneﬁt from an accurate prediction of the consequences on the skin of a modiﬁcation of the bones, with a reasonable cost [16,17].

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Minimally Invasive Intra-operative Imaging: we developed a “light” CT, designed to be used in an Operating Room. A C-arm carries a ﬂat planel X-ray sensor and rotates around the patient in about 1 mn. Feasibility shows that such a system provides very satisfactory morphological data, especially for bony structures [18]. Modelling of the diaphragm: a mechanical model of the muscles and structures involved in breathing was developed, and ﬁtted with specially acquired Magnetic Resonance Images. We obtained the ﬁrst images of a breathing diaphragm, which will be very useful in situations where compensating breathing artefacts may be useful [19]. 2.4.4. Medical robotics Passive Arm with Dynamic Constraints: an original robotics architecture [20,21] has been developed. This architecture is a Passive Arm: it cannot move by itself, and the user has to grasp it to make it move to the required position. But the system has motors that are used to constrain the movements of the arm: this arm can only be moved to previously deﬁned positions. This architecture was the ﬁrst of a set of “co-operative robots”, and will be used to facilitate performance of complex surgical movements. Tele-Echographic Robot: an original and very light architecture was developed to mobilize an ultrasound probe on the abdomen of a patient. Contrarily to classical robots, this system cannot carry the probe (which lies on the patient), but is used only to position it at the correct position. A remote expert moves a dummy probe, whose movements are reproduced by the robot. Images acquired by the probe are then transferred trough telecommunications means (ISDN lines, for instance) to the remote expert, who can propose a diagnosis. Feasibility was proved on volunteers, and a clinical study is going on to show the clinical interest [22]. Light Endoscopic Robot: an original and very light architecture was developed to orient an endoscopic camera used for abdominal procedures (Figure 5). This system uses a very small part of the operating ﬁeld, and has a very simple user-interface. First tests on cadavers were very positive, a clinical study is on its way [23].

Figure 5. Light Endoscopic Robot (clinical validation planned 2003).

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3. Conclusion: from CAMI to Quality Inspired Surgery Since the ﬁrst efforts in CAMI, a major issue has been to bring Information Technology (computers, navigation devices, robots, . . .) in the Operating Room, and to use them to enhance a speciﬁc component of a complex medical or surgical intervention. First generation of industrial systems stemming out of this research phase reﬂect this movement, characterized by a fragmented view of the targeted medical issues. The challenge now is to “invert this movement”: instead of moving the computer in the Operating Room, we should embed the surgeon (or at least his or her expertise) into the ICT-based tools he or she uses. Taking up this challenge implies a major renewal of the currently available set of knowledge and expertise. This replaces Quality (in its medical meaning) at the heart of the process of combining surgery and informatics. A global vision of the therapeutic process makes it possible to identify the points where relevant ICT may signiﬁcantly enhance the clinical outcome, thus ensuring real impact on Public Health issues. Reaching this Quality objective cannot be envisaged without a coordinated effort towards education: men and women will have to implement these new procedures, and this will require evolutions in the way various jobs are today practiced. Coming-up generations of physicians will indeed add an “IT dimension” to their skills, and will become capable of conceiving their work as the control of transduction of energy and of information under various shapes. Likewise, scientists in this domain will rely on model-embedded expertise to improve the relevance of their contributions, which will make them closer than ever to their medical colleagues. Finally, Quality requires support from the Industry, since the proposed conceptual and educational effort we plan would remain useless if no instruments were designed to embed the corresponding results. Companies must be involved at very early stages in the elaboration of the knowledge and expertise, in order to ensure efﬁciency of the efforts. To reach these objectives, a proposal of Network of Excellence, entitled SURGETICA, was elaborated by a set of medical, scientiﬁc and industrial partners, with the objective of integrating European resources, shaping a “Quality Inspired Surgery” Virtual Laboratory and University. This integration already began, giving Europe a leading position in ﬁrst generation tools, whose industrial maturity now emerges. SURGETICA NoE represents a unique opportunity to give to this integration effort the “second wind” it requires to succeed in consensually deﬁning Quality in Surgery, thanks to massive use of IT-based Models, thus enabling development of completely innovative solutions to renew Surgical Practice.

References [1] S. Lavallee, P. Cinquin, J. Demongeot, A.L. Benabid, I.Marque & M. Djaid. Computer assisted driving of a needle into the brain.In : Computer assisted radiology, Proceedings CAR 89, éds H.U. Lemke, M.L. Rhodes, C.C. Jaffe & R. Felix, Springer Verlag, 416-420, 1989. [2] Benabid AL, Lavallee S, Hoffmann D, Cinquin P, Demongeot J, Danel F. Potential use of robots in endoscopic neurosurgery. Acta Neurochir Suppl (Wien). 54, 93-7, 1992 [3] S. Lavallée & P. Cinquin. Computer assisted medical interventions. In: 3D-imaging in medicine, éd. K.H. Höhne et al., 301-312, Springer Verlag, Nato ASI Series F, 60, 1990.

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[4] P. Cinquin et al. Computer Assisted Medical Interventions at TIMC Laboratory: passive and semi-active aids. IEEE Engineering in Medicine and Biology magazine, special issue Robots in Surgery, 14(3):254–263, 1995. [5] R. Julliard, S. Lavallee, and V. Dessenne. Computer Assisted Anterior Cruciate Ligament Reconstruction. Clinical Orthopaedics and Related Research, (354):57-64, 1998. [6] J. Troccaz, M. Peshkin, and B. Davies. Guiding systems for Computer-assisted Surgery (CAS): introducing synergistic devices and discussing the different approaches. Medical Image Analysis, 2(2):101-119, 1998. [7] Vilchis, J. Troccaz, P. Cinquin, A. Guerraz, F. Pellisier, P. Thorel, B. Tondu, F.Courrèges, G. Poisson, M. Althuser, J.-M. Ayoubi.Experiments with the TER tele-echography robot. Proceedings Medical Image Computing and Computer Assisted Intervention (MICCAI 2002), Lecture Notes in Computer Science Vol. 2489, Tokyo, September 25-28, pp. 138-146, 2002. [8] P. Berkelman, P. Cinquin, J. Troccaz, J.-M. Ayoubi. Development of a Compact Cable-Driven Laparoscopic Endoscope Manipulator, Proceedings Medical Image Computing and Computer Assisted Intervention (MICCAI 2002), Lecture Notes in Computer Science Vol. 2489, Tokyo, September 25-28, , pp. 17-24, 2002 [9] Bettega G, Cinquin P, Lebeau J, Raphael B. Computer-assisted orthognathic surgery: clinical evaluation of a mandibular condyle repositioning system. J Oral Maxillofac Surg.;60(1):2734; discussion 34-5., 2002 [10] Tonetti J, Carrat L, Blendea S, Merloz P, Troccaz J, Lavallee S, Chirossel JP. Clinical results of percutaneous pelvic surgery. Computer assisted surgery using ultrasound compared to standard ﬂuoroscopy. Comput Aided Surg. 6(4):204-11., 2001 [11] O. Chavanon, L. Carrat, C. Pasqualini, E. Dubois, D. Blin, and J. Troccaz. Computer-guided pericardiocentesis: experimental results and clinical perspectives. Herz, 25(8):761-768, 2000 [12] L. Brunie, S. Lavallée, J. Troccaz, P. Cinquin & M. Bolla. Pre- and intra- irradiation multimodal image registration: principles and ﬁrst experiments. Radiother. Oncol., (29):244-252, 1993. [13] Troccaz J, Laieb N, Vassal P, Menguy Y, Cinquin P, Bolla M, Giraud. Patient setup optimization for external conformal radiotherapy. J Image Guid Surg.1(2):113-20., 1995 [14] D. Voirin, Y. Payan, M. Amavizca, C. Létoublon, J. Troccaz. Computer-aided hepatic tumour ablation: requirements and preliminary results. Compte-rendus de l’Académie des Sciences, C.R.Biologies, pp309-319, Elsevier, 2002 [15] S. Pujol, M. Pécher, P.Cinquin. Magnetic guidance of endovascular devices in preoperative CT images for the treatment of abdominal aortic aneurysms. In Surgetica CAS 2002, Grenoble, France, September 19-20, pp316-322, 2002 [16] Payan Y, Chabanas M, Pelorson X, Vilain C, Levy P, Luboz V, Perrier P. Biomechanical models to simulate consequences of maxillofacial surgery. C R Biol. 325(4):407-17, 2002 [17] Chabanas M., Marécaux C., Payan Y. & Boutault F. Models for Planning and Simulation in Computer Assisted Orthognatic Surgery. Proceedings Medical Image Computing and Computer Assisted Intervention (MICCAI 2002), Lecture Notes in Computer Science Vol. 2489, Tokyo, September 25-28, pp. 315-322, 2002. [18] L. Desbat, M. Fleute, M. Defrise, X.Liu, C. Huberson, R. Laouar, R. Martin, J.H Guillou, S. Lavallée. Minimally invasive interventional imaging for computer assisted orthopedic surgery. in Surgetica CAS 2002, Grenoble, France, September 19-20, pp288-295, 2002 [19] E. Promayon and S. Craighero. Object-Oriented Discrete Modeling: a Modular Approach for Human Body Simulation. In E.Keeve and N. Ayache, editors, International Workshop on Deformable Modeling and Soft Tissue Simulation, Bonn, Germany, November 2001. [20] J. Troccaz and Y. Delnondedieu. Semi-active guiding systems in surgery. A two-dof prototype of the passive arm with dynamic constraints (PADyC). Mechatronics, 6(4):399–421, 1996. [21] O. Schneider and J. Troccaz. A six degree of freedom passive arm with dynamic constraints (PADyC) for cardiac surgery application: preliminary experiments. Computer-Aided Surgery, 6(6):340-51. 2001.

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[22] Vilchis, J. Troccaz, P. Cinquin, A. Guerraz, F. Pellisier, P. Thorel, B. Tondu, F.Courrèges, G. Poisson, M. Althuser, J.-M. Ayoubi. Experiments with the TER tele-echography robot. In Proceedings Medical Image Computing and Computer Assisted Intervention (MICCAI 2002), Lecture Notes in Computer Science Vol. 2489, Tokyo, September 25-28, pp. 138-146, 2002. [23] P. Berkelman, P. Cinquin, J. Troccaz, J.-M. Ayoubi, Development of a Compact Cable-Driven Laparoscopic Endoscope Manipulator, Proceedings Medical Image Computing and Computer Assisted Intervention (MICCAI 2002), Lecture Notes in Computer Science Vol. 2489, Tokyo, September 25-28, pp. 17-24, 2002

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The Oxford Clinical Intranet: Providing Clinicians with Access to Patient Records and Multiple Knowledge Bases with Internet Technology Jonathan D.S. KAY, Dave NURSE ∗ , Christos BOUNTIS, Kevin PADDON Oxford Medical Informatics, Oxford Radcliffe Hospitals, Oxford, UK ∗ CSW Health Ltd, Oxford, UK Abstract. The Oxford Clinical Intranet provides clinicians in primary and secondary care across Oxfordshire with: • Access to information about their patients held on multiple remote disparate computer systems, including admissions and episodes, Laboratory Medicine reports, Radiology reports and hospital discharge letters. The patient records are managed using CSW Case Notes. • Access to support and advisory information, developed both within the organization and collected from other sites and projects, a wide range of internal handbooks, directories and guidelines and links to external resources, including evidence-based resources, the Cochrane Collaboration and the NHS National electronic Library of Health. • Automated retrieval and presentation of the support information that is contextually appropriate to the task being carried out by the clinician and the information held about the patient. For example laboratory reports are linked to handbooks and other reference sources using eLABook, a web-interfaced database subsystem. Internet technology has been used throughout, thus providing a thin-client architecture with cross-platform ability. Appropriate data standards have been used across the communicating systems and the intranet is compliant with the UK eGovernment Interoperability Framework. The intranet was developed at low cost and is now in routine use. This approach appears to be transferable across systems and organisations.

1. Setting Oxfordshire has a population of 630,000. The Oxford Radcliffe Hospital is an academic hospital on four sites has 1,500 beds, employs 10,000 staff and has a turnover of about €500 million per annum. It has 1,500 beds and provides 112,000 admissions/ year and 400,000 outpatient attendances/ year. There are 90 General Practices in the county.

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2. Design 2.1. Architecture and Content We used a three tier intranet architecture [1–3]. The ﬁrst tier is a web browser on the clinician’s computer. We adopted the following speciﬁcation: frames, tables and JavaScript, but did not require Java. The second tier is middleware which appears as a web server to the clients and offers the following functions: • Access control • Storage of patient identiﬁcation which can then be passed to servers without requiring re-entry by the user • Gateway and similar software to allow access to the servers. The third tier is the servers. 2.2. Servers holding patient-identiﬁable information The departments of Biochemistry, Haematology and Immunology use the Oxford Laboratory Information Management System [6]. This was written in-house in M and runs under Unix. Intranet access was provided by using WebLink [5] to provide on-line access to the M database. The Telepath system [7] used in the Hospital Blood Bank and the Patient Administration System were accessed similarly. The Microbiology department uses the SunQuest commercial system [8] written in InterSystems M [5] and runs under Unix. Intranet access was provided by storing completed reports in HL7 format in a data warehouse. The Cellular Pathology department uses systems for Paediatric and Surgical Pathology systems which are written in-house in FileMaker Pro [9] and offer completed Histology reports. Intranet access was provided by using Tango [10] to provide Common Gateway Access (cgi) access to a mirror of the live database. Access to Radiology reports is similar to that for Microbiology reports. We developed a new system which generates and archives the immediate discharge document which is sent to the primary care practitioner. This retrieves the demographic data from the Patient Administration System, allows the clinicians to add information and then delivers it to the appropriate practitioner’s in-tray and archives it. Creation and modiﬁcation of the document and viewing of the completed document can be performed from any browser on the intranet [4,5]. The clinical intranet runs as independent modules within the CSW Case Notes portal through which access has been extended to clinical users across Oxfordshire. This also accesses the Patient Master Index used by the middleware for access to other servers. 2.3. Support, advice and other non-patient-identiﬁable information The local Biochemistry handbook, Delivery Suite Guidelines for the department of Obstetrics and Gynaecology, and a variety of information used in the internal management of the Hospital were converted from word-processed information and stored as static HTML pages on a Macintosh web server using WebStar [11]. The Microbiology handbook was converted from wordprocessed documents to a FileMaker Pro database and served on a Macintosh server through Tango. The Hospital’s Medicine Information

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Leaﬂets are stored both as HTML and PDF documents. Some hyperlinks between these documents have been created manually. The subsequent development of the laboratory handbook (eLABook) has been one of the most active areas of development, both to address local users’ requirements and to explore the technological possibilities available to provide customised knowledge management. The aims of this work are to provide contextually appropriate knowledge to laboratory staff, to clinicians who are considering laboratory investigations required by patients or interpreting completed reports, and to provide a wide range of educational resources to both. The current technology consists of a database describing many aspects of laboratory investigations, local and remote documents and databases. Knowledge can be presented according to the status of the users and the entry point. Locked PDF documents are used to archive the database whenever changes are made, to support audit of what knowledge is available and to produce printed versions. All entries are stamped with date and time of creation, the author and the editor who accepted it. It is possible to analyse use of the database and this may be used to improve its value to individual users and in particular use cases. Bandolier [13], a journal devoted to evidence-based medicine, is produced monthly in Oxford for the National Health Service R&D Directorate. It is published on the Internet and a copy of the site was transferred to a server on the intranet. The NHS Centre for Evidence based Medicine produces critically appraised topics (CATs) which are one to two pages long. They are published on the Internet in the CATbank [14]. The British National Formulary is the most widely used source of information about medications and clinical uses. Various versions of this [15] have been included. The current version is available both locally and by direct access to a version on the Internet. The primary care practitioner telephone directory was already available written in FileMaker Pro and was accessed through Tango. A hospital telephone directory was written in Frontier [12] and served on a Macintosh. Frontier was also used to collect Department of Health Executive Letters and press releases automatically from the Internet and transfer them to a Macintosh server. 2.4. Automated contextual links Automated contextual linkage from laboratory reports to the critically appraised topics in the CAT bank at the Centre for Evidence-Based Medicine were made by adding the Version 3 Read codes for analytes and specimen types [16] to the laboratory reports on LIMS and to the database used to manage the CATbank. When such a contextual link is available the middleware notiﬁes the user by presenting an icon adjacent to the report. With one click from the laboratory report the user is then shown the local laboratory handbook, the list of appropriate critically based topics and also other information, for example the criteria for the diagnosis of diabetes mellitus when a plasma glucose report is inspected. eLABook uses this technique extensively to search web resources such as AssayFinder, the British National Formulary, PubMed and Online Mendelian Inheritance in Man.

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2.5. Security and access control Access is controlled by individual usernames and passwords which are regularly changed. Because of the stateless nature of HTTP communications we designed a security approach with state-aware features. After a user enters a valid username and password a token is created which includes the date and time and the IP address of the client computer. An encrypted version of this is used for all accesses from the client to the middleware. This prevents a URL visible to the user on a screen being recorded and used from another machine or at another time, or with an inappropriate user name or password. This token is declared invalid after 5 minutes after which the user is required to log in again. An important design concept is that, despite the wide range of systems being accessed, the user is only required to log-on once. 2.6. Client machines Access was required from a wide variety of computers of varying age, power and, consequently, speed, using the Macintosh and Microsoft Windows operating systems. The preferred browser was originally Netscape Navigator 2.02, but users are free to change this to a browser with the same or greater functionality. This policy allowed roll-out of the intranet across a large area of the Hospital without purchase of new hardware. The current browser standards are those of the UK electronic Government Interoperability Framework (eGIF). 2.7. Network The Hospital had an extensive existing local area network, predominantly of 10 Mb/sec Ethernet with TCP/IP services. This was upgraded to 100 Mb/sec within sites and a minimum of 2 Mb/sec between sites. There is a single 64kb/sec link to each general practice and up to 10 users in each practice. 3. Results 3.1. Utilisation The service has been in live use since 1995 with continuous, incremental, modular development. By March 1999 the typical weekday usage was 500 to 600 sessions. It currently has 4,117 users with individual user accounts (3,501 in secondary care and 616 in primary care) including medical practitioners, nurses and many other healthcare professionals. All NHS staff can use the nonconﬁdential support and advice information. The service is used throughout Oxfordshire and there are no plans to extend this to other areas. Over 2,000 new laboratory reports for inpatients and outpatients in the Hospital are generated each day and the intranet is now the routine medium for their inspection. Paper reports are issued as previously. During the development of intranet the Biochemistry and Haematology laboratories moved to 24 hour open access with no requirement on clinicians to phone to request analyses, and only results outside clinically dangerous limits are telephoned by laboratory staff to clinicians.

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3.2. Speed On the fastest client computers the most complex user requests are completed in under 2 seconds. Access from general practice is limited by the slow speed of the WAN connections. Clinicians identify faster response as one of the most important developments.

4. Costs The development of the service was funded from NHS funds and research grants. The departmental servers were already in place, and the only costs were to develop the middleware and procure the CSW Case Notes tools. The original implementation cost about €22,500, excluding the client computers. Recurrent licence costs are €50,000 pa and support staff costs €100,000 pa.

5. Beneﬁts 5.1. Cost Beneﬁts Using telephone calls rather than the intranet would take about 70 man-hours/ day at an annual cost of €125,000. This approach allowed existing departmental systems to be retained while allowing integrated access to them from remote users. This is much cheaper than re-procurement: the replacement cost of all of the connected systems would be about €7.5M. Hyperlinking between patient records, local knowledgebases and remote knowledgebases is also much cheaper than trying to recreate all the support information locally. For example where deﬁnitive advice is already available in the National electronic Library of Health the system can contextually indicate this to the users. This economy of scale saves money and provides the users with the best advice, regardless of location. 5.2. Access to care The intranet provides access to the same patient-speciﬁc information and the same advice and support across primary and secondary care. This removes the discontinuity between primary and secondary care that is experienced with other systems architectures, and which is so undesirable for patients and staff. This removes the need for investigations to be repeated at each encounter, or for patients to make further appointments because information is not yet available. 5.3. Quality of care The contextual linkage of support information to patient-speciﬁc tasks is vital for the delivery of evidence-based medicine. For the evidence to affect care it must be delivered in a way that makes it convenient for the clinician and at a volume that is appropriate. Hypertext allows the minimum necessary information to be displayed, while indicating the presence of more information, which might be useful for education and discussion, rather than in the pressure of consultation.

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6. Discussion and future plans 6.1. Architecture We were able to achieve our objectives of accessing the information in all of the relevant existing systems. Several different tools and approaches were needed, but it appears that this approach will be transferable to other systems and institutions. New releases of database management systems and word processors usually have improved functionality for Internet access which will facilitate future work of this kind. The two main choices for the architecture of computerised hospital information systems to date have been to procure an information system from one supplier which attempts to provide many functions, or to purchase departmental “best of breed” systems and arrange communication links between them. In many institutions the latter approach has allowed the purchase of the departmental systems but achieved inadequate communications between them. The intranet approach appears to us to tip the balance in favour of multiple communicating systems. One of the few advantages of having so many disparate systems in our own organisation is in creating conﬁdence that this approach will be transferable to other systems and other organisations. This approach also has a major difference from the procurement of a single system from one supplier in that the human computer interface presented to the clinician, that of the web browser, is already familiar to many of the users and to all nurses and doctors who have recently graduated. This is very different from the proprietary interface presented by many hospital information systems. It also allows the rate of addition of both internally and externally generated knowledge bases to be determined by the institution rather than by the development time scale of the supplier. The architecture we selected is different from the concept of providing a data warehouse with information provided from multiple departmental systems, although for two of the systems (Microbiology and Radiology) we selected data warehousing as the most appropriate solution. Our objectives did not include the development of an executive information system which would allow analysis of, for example, activity across the multiple information systems. This requirement would strongly encourage the creation of a single data warehouse, which would then be accessed by the middleware. We have demonstrated that that approach is not necessary for our clinical objectives. 6.2. Costs A major advantage of the thin-client approach is the reduction of support costs. It should be much cheaper to replace a client computer as there is no need to recover locally held data. When adding a new service there are no additional costs at the client end: a new link appears the next time the relevant page is accessed. New computers are now usually delivered with the browser software installed. 6.3. Support information With the increasing availability of support information, evidence-based and other, it has become apparent that the major problem is not the generation of information but providing appropriate access to it. The same information will need to be presented in different ways for different purposes. For decision making at the point-of-care the infor-

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mation system should identify from the actions of the user which information should be presented, and then present it through the same medium that is being used for viewing the computerised patient record. The volume of information should be appropriate to the user’s requirements. This “pop-up” approach should be contrasted with the “drill-down” approach which will remain appropriate for educational, research and planning purposes. It is likely that many institutions will need to use externally generated knowledge bases for a large part of their clinical practice, especially in the area of Evidence Based Medicine. We have found it possible to ﬁnd acceptable technological solutions to move these knowledgebases to servers on our intranet or to directly access them on the Internet. 6.4. Future work We are currently adding patient reports from additional departmental systems including technical cardiology and the diabetes management system. Although the use of Read codes and very simple logical rules were suitable for our ﬁrst attempts at automated contextual linkage we think this is probably not scalable when large numbers of externally generated knowledge bases are offered to the clinician. We intend to evaluate Medical Subject Headings (MeSH) [17] and the UMLS [18] as linkage tools for this purpose. The problem is largely semantic: a user viewing a plasma glucose report is likely to be interested in the entry in the local biochemistry handbook, the criteria for the diagnosis of diabetes, the local and national formulary entries for insulin, and the critically-appraised topics relevant to plasma glucose measurement, insulin therapy and diabetes mellitus. The connection between these is obvious to a clinician but extremely difﬁcult to manage across multiple computerised knowledgebases developed independently. A similar problem exists in generating, maintaining and presenting procedural and other knowledge across sites. The eLABook project is addressing part of this problem by developing a data architecture which supports sharing of information where that is possible while maintaining local control where that is necessary [19]. This approach only brings the information to desktop computers tethered to the wired data network. We have carried out one experiment using wireless handheld computers, and will continue to evaluate further devices as they become available. As some of these handheld computers use unusual operating systems the choice of a web browser as the only software required on the client computer may be helpful where the use of more proprietary client application software may prevent its use on such systems. Another development which is likely to have a major effect on the development of our intranet is the ability to manipulate and communicate structured and semistructured data through the use of XML. As in many other institutions our ﬁrst widespread application was laboratory reports, where there is extensive knowledge on how these can be structured and coded. This is not true of all areas of the patient record but the combination of document management techniques and databases brought together through XML appears promising for extending the fraction of the patient record that can be rapidly computerised. Our previous work with computerised communication with primary care practitioners has largely been through the use of store and forward messaging [20]. This was appropriate when we started work in 1988 because of the extensive use within the United Kingdom of databased systems within general practice and hospitals, and the problems with

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availability and speed of wide area communication. It is now appropriate to look again at the use of direct access from general practitioners to the hospital systems. The moves towards greater patient empowerment and the NHS requirement for patients to have access to a copy of clinical correspondence have driven a study of the best technological approach to achieve these. Our preferred model is for the patient to visit the general practitioner and to browse both the primary and secondary care components of the record from there. The architecture we have designed will support this, and also the likely future step of direct access from home.

Acknowledgements The Oxford Clinical Intranet was developed by Dave Nurse and Jonathan Kay, with help from many collaborators including: David Sackett, Sharon Straus, Brian MacDonald, Douglas Badenoch, John McVittie, Kevin Paddon, James Penn-Dunnett, Ian Bowler, Kieron White, Ken Nicholl, Paddy Phillips, Chris Bunch, Ian Mackenzie, Nick Atkins, Sonja Decker, Herb Parker, Pauline Hurley, Janet Knowles, Thomas Lamandais, Anne Ecobichon and Alistair West. Content contributors to eLABook included: Ian Mackenzie, Aram Rudenski, John Keenan, Brian Shine, Janet McIlroy, Niki Meston, Frank Geoghegan. Vian Anber, Elaine Murphy, Andrew Silverman, Sue Standing, Steve Justice, Christos Bountis and Jonathan Kay. The current team leaders are Jonathan Kay, Kevin Paddon for the laboratory medicine and radiology records, Christos Bountis for the knowledge management components and Chris Pipkin for user registration and training. The Oxford Clinical Intranet was selected as the Deloitte Group Information Management Project of the Year in 1998.

References [1] Internet as Clinical Information System: Application development using the World Wide Web. Cimino JJ, Socratous SA, Clayton PD. Journal of the American Medical Informatics Association.1995; 2: 273-284 [2] Moving Ahead on Webbed Feet (Editorial). Masys DR. Journal of the American Medical Informatics Association.1995; 2: 332-333 [3] Information in practice: Using the technology of the world wide web to manage clinical information. Fraser HSF, Kohane IS, William J Long WJ. BMJ 1997;314:1600 [4] Managing clinical documents. Nurse DR, Phillips P, Kay JDS, Ruddell S. Exchanging Healthcare Information, Manchester 1996. ISBN 0 948198 25 7 [5] InterSystems Corporation http://www.intersys.com/ [6] Remote links to a laboratory computer: low-cost solutions without high-speed networking. McVittie,J.D., Kay,J.D.S., Quainton, T.J., Stewart,R.D. Annals of Clinical Biochemistry (1988); 25, S1, 187-188 [7] CDS Group Ltd. http://www.cds-group.co.uk/ [8] SunQuest Information Systems, Inc. http://www.sunquest.com/ [9] FileMaker, Inc. http://www.ﬁlemaker.com/ [10] Pervasive Software Inc. http://www.pervasive.com/ [11] WebStar http://www.starnine.com/

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[12] UserLand Software, Inc. http://www.scripting.com/frontier5/ [13] Bandolier http://www.jr2.ox.ac.uk:80/Bandolier/ [14] NHS Research and Development Centre for Evidence-Based Medicine, Oxford http://cebm.jr2.ox.ac.uk/ [15] Quartet Software Ltd. http://www.quartet.co.uk/ [16] Oxford Medical Informatics http://oxmedinfo.jr2.ox.ac.uk/WWWdocs/Read/Readinfov2.html R http://www.nlm.nih.gov/mesh/ [17] Medical Subject Headings (MeSH) [18] Uniﬁed Medical Language System http://www.nlm.nih.gov/research/umls/umlsmain.html [19] An integrated knowledge management system for the clinical laboratories: an initial application of an architectural model. Bountis C and Kay JDS. Health Data in the Information Society, Proceedings of MIE 2002, The 17th International Congress of the European Federation for Medical Informatics 2002. [20] Communication of Structured Medical Information by Computers: the Oxford Experience. McVittie J and Kay JDS in “Progress in Standardisation in Health Care Informatics” ed DE Moor GJE, McDonald CJ and Noothoven van Goor J. IOS Press 1993

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The Contribution of ICT to Health: The Andalusian Health Network José Antonio COBENA FERNANDEZ Secretary General of the Andalusian Healthcare Service, Spain Director of IT Strategy Digital humanism: Θαυμ´ αζειν π´ αντα . . . μ´ αλα γ´ αρ φιλοσ´ οφου το´ υτο το π´ αθος, το θαυμ´ αζειν, ου γ´ αρ αλι´ε αρχ´ε φιλοσοφ´ιας: this state of mind (pathos) is precisely a characteristic of the philosopher: the amazement, which is the principle of philosophy... Platón, Teeteto, 155 d ´νθρωποι και ν´ ´ρξαντο . . . δια γ´ αρ το θαυμ´ αζειν οι α υν και πρ´ ωτον α φιλοσοφε´ιν: through the admiration, the men arrive now and arrived formerly at the origin from to philosophize. Aristóteles, Metafísica, 1, 2, 982 b 12 ss. The Andalusian Public Healthcare System (SHPA) is in the process of implementing its Digital Healthcare Strategy, which is deﬁned as the organization process whereby the digital information and communication systems and technologies, as the scenario and change driver and Technological Integration model focusing on citizens, (ISTOC paradigm) are progressively being incorporated into its corporate functions. The SHPA’s Digital Healthcare Strategy is to take advantage of the capabilities currently provided by the Information and Communication Technologies (ICT) geared to modernizing the existing healthcare services by introducing new digital healthcare services that will reach their maximum scope in the new concept of Digital Healthcare in Andalusia. The improved quality of the healthcare service offered and the equity and accessibility of healthcare delivery, the concept of mobility of both the professionals and citizens, the feedback of healthcare information from/to professionals and citizens, or the application of the legislation in force relative to the security of healthcare information, are some of the key elements that originated this global process change. In the information era, Information and Communication Technologies have become the essential environment and the driving force behind the updating of our health services.

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The ISTOC Paradigm The technological paradigm derived from the e Health Strategy summarizes this vision of connecting citizens, technology and healthcare: ‘Integration of Systems and Technologies Oriented to Citizens (ISTOC)’ to guarantee the continuum of care to Andalusian citizens, allowing their health related information to be available at the point of care, regardless of where he/she is and to support the health professional’s aim to provide high quality care.

1. Andalusia Andalusia, known to many as “the bridge between two continents”, “the gateway to Europe”, “a melting pot of cultures” or “a meeting point of two seas,” ﬁts perfectly within any of these deﬁnitions. Andalusia is a direct link between Europe and Africa, and the place where the Atlantic Ocean meets the Mediterranean. Andalusia has been fought over by numerous cultures since the earliest times of civilization, being one of the areas of settlement of our prehistoric ancestors. Andalusia covers 17.3% of Spanish territory, 87,268 km2 in total, making it the largest single region, with an area greater than countries such as Belgium, Holland, Denmark, Austria and Switzerland.

2. Digital Strategy of the Andalusian Public Healthcare System Digital Strategy (e Health in Andalusia): An organization process through which the Andalusian Regional Ministry of Health includes digital information and communication systems and technologies in its corporate functions, as the environment and driver of its change, and as the technological integration model focusing on citizens.

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e-HEALTH STRATEGY Best possible use should be made of the information and communication technologies and systems for citizens, with a view to providing high quality healthcare assistance, enabling access to the services provided and granting access to personal health and administrative information, including his/her electronic health record. The Public Healthcare System is responsible for generating, updating and storing this record.

Quality of Digital Care: Accessible and equitable services portfolio, with an optimum professional level, which takes into account the status of current knowledge as well as the digital resources available, thus gaining the citizens’ allegiance and satisfaction.

The Quality Vision leads to an Andalusian Public Healthcare System characterised as follows: • • • • • • • •

More effective and efﬁcient service. Decreased variability in clinical practises. Assignment of resources based on performance and decreased cost. Sustainability over time. Modern and easily adaptable to change. More personalized attention. Adaptation to the needs of citizens. Quality leading to increased satisfaction.

2.1. Regional Ministry of Health / Andalusian Healthcare Service (SAS) In Andalusia, the Regional Ministry of Health, together with its main dependent Organization, which is the Andalusian Healthcare Service, are responsible for managing and supervising the public healthcare service in the Andalusian Autonomous Community. 2.2. Corporate Data Network of the Andalusian Ministry of Health According to the e-Health e-Europe 2005 action plan, by the end of 2005 Member States should develop healthcare information networks among points of care (hospitals, laboratories and homes) with broadband connectivity where relevant. In parallel, the Commission intends to set up European-wide information networks of public healthcare data and coordinate actions for Europe-wide rapid reactions to health threats.

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2.2.1. Characteristics The project to migrate the communications network of the Regional Ministry of Health and the Andalusian Healthcare Service to the Corporate Network of the Government of Andalusia has been in progress since 1999. The particular conditions that are essential for the healthcare network as regards communications infrastructure needs (wide geographical dispersion, rural areas in which the coverage provided by telecommunications operators is minimal or even non-existent, the need to transmit large volumes of information (medical images, telemedicine, etc.) in real time, operation 7x24x365, etc.) has made it necessary for a speciﬁc analysis to be carried out with a view to providing infrastructures of sufﬁcient quality at a reasonable cost. Network Technologies • Lines: ATM, Frame Relay, Frame Relay over ISDN, ISDN, ADSL, Frame Relay over ADSL, Frame Relay over Satellite • More than 4,000 network active devices: routers, switches, hubs, bridges. . .

2.2.2. Coverage Indicators One of the basic goals of implementing the SSPA’s Digital Healthcare Strategy is to modernize the existing healthcare services and to introduce new digital healthcare services. Therefore, it is necessary to have powerful technical infrastructures that enable the new services to be provided with appropriate quality. The Regional Ministry of Health’s Corporate Communications Network provides coverage to all its Centers, both administrative and healthcare services, and must be considered as the main technical infrastructure, on which the implementation of the SSPA’s Digital Healthcare Strategy is based.

ANDALUCIA Its surface area is 87.597 km. and it has a population of 7,403,968 inhabitants. 18% of the population is younger than 15 years of age and 18% is older than 65. • 1.420 Primary Care Centres. • 33 Public Hospitals. • 80.000 Healthcare Professionals. • 23.285 Hospital beds. • 6.000 M € Health Budget. • 6.522.217 citizens holding a chip health card • Life expectancy at birth: - Men 74, 82 %. Women 81,42 %.

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2.3. Services at Citizen’s Home Application of the Information Technologies to healthcare service delivery enables aspects such as citizen equity and accessibility to the healthcare services, or information feedback, to be improved. The Virtual Ofﬁce of the Andalusian Public Healthcare System, internet portal Inters@s (www.juntadeandalucia.es/salud), enables Andalusian citizens and SSPA professionals to access - through the Internet and with the security provided by the electronic signature - services such as consultation of administrative data, change of doctor, appointments for primary health services, etc. comprising an extensive offering that is accessible at any time of the day and from any place, with the sole condition that the user must have an Internet connection.

2.4. Citizens’ Digital Health Record Perhaps one of the major shortcomings identiﬁed in traditional healthcare delivery is the absence of a single repository in which the full record of each citizen’s state of health and illnesses is recorded, prepared on the basis of the different events that take place throughout a life of interaction between citizens and the Public Healthcare System. The Diraya project, a system to record the Digital Medical Record of each citizen, is the solution whereby the SSPA intends to remedy the lack of records, ensuring constant medical assistance without differentiation between Primary and Specialized services and, by appropriate use of the Information and Communication Technologies, enabling citizens’ medical records - generated and stored in digital format - to be created, maintained and placed at their disposal.

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3. Key Aspects to Consider 3.1. Interoperability At ﬁrst, to comply the terms agreed on by consensus in the Law for Cohesion and Quality, regarding the Healthcare Information System: In order to achieve the maximum ﬁdelity in the information that is produced, the Spanish Ministry of Health, in agreement with the Inter-area Council of the National Healthcare System, will establish data and ﬂow deﬁnition and standardization, indicator selection and the technical requirements needed for the information integration, a consensus (agreement) is needed for real inter-operability in Andalusia, which already has a User Database and a Digital Healthcare History, in the technical environment of this System, given that, standard use, high availability, multi-language, future and possible evolutions, as well as security, are acceptable principles subject to the most recent and concrete speciﬁcations. The problem, in short, is not technological but strategic, speciﬁc to the functional and technological autonomy of each Healthcare Service, in every Autonomous Community. That is, the complete inter-operability between Autonomous Communities (EU) should be approached, based on speciﬁc collaboration agreements, independently of the establishment of a central information repository, as would be approved in the Inter-area Health Council, which could offer the agreed information for Services provided by the Ministry, generally and speciﬁcally for those services agreed between Communities, to respect the particular characteristics of each Region. Therefore, the scheme must be that of an agreement on an informational and operational basis in agreement with the Law

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for Cohesion and Quality, with special stress on the role to be played in this vision by the Inter-area Health Council. 3.2. Technological Standards Due to the information ﬂow between Assistance systems as well as between its management systems, a need arises to establish the standards for information interchange that will be used as the basis for System Integration.

Key aspects to consider: √ √

Interchange Standards: Problems, Necessity, Focus, Normalization Organizations, and Health Standards (Pre-Norm ENV 13606, HL7, DICOM, HIPAA, etc.). Support Standards: Communications, Architectures/Technologies, Languages, Security, Multimedia.

4. What Is Expected of Andalusia? The Second Modernization: ‘New Solutions in Systems and Technologies Management of Information and Communication in the Citizen Service’. 4.1. Citizens Citizens are the center of the Andalusian Ministry of Health, and their satisfaction is the key element of the quality of service 4.2. Citizens’ Digital Health Record The Citizens´ Digital Health Record comprises a group of documents, personal and nontransferable, related with citizens’ health and illness processes, which are stored in a digital media and can be transmitted electronically, allowing free line-based access for the citizens and the professionals participating in the processes and events, with speciﬁc authorization from the citizen in question. The Citizens´ Digital Health Record also complies with the constitutional guarantees expressly deﬁned and developed in the legislation for the national health system and speciﬁcally the autonomous communities.

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4.3. Diraya It is the tool for Healthcare delivery and administrative management in primary and specialized care including emergency services based on the following components: √

√ √

√

Uniﬁed Health Record. Structured on the different events that comprise the health record of a user, generated in primary or emergency assistance, hospital and specialized assistance. Incorporation of the Assistance Processes. Guaranteeing inclusion and control of assistance processes that are implemented at all times. Continuity of care. Allows management of activities, which, for a single process, arise with respect to a user in different environments: Primary, emergency, hospital and specialized assistance. Web appointment Integration, in information and citizen services centers, Health card, etc.

5. Description of proven economic beneﬁt The most relevant direct economic beneﬁt from the use of Diraya, has been the improvement in clinical time archived by reducing the administrative (writing) time allocated by doctors to paper based administrative procedures. This improvement can be estimated between 20 to 50% of total administrative workload of primary health care doctors (5 to 15% of total time allocated to consultation work), or 200 to 500 full time equivalent doctor/year: • Reduction in general cost associated to administrative manipulation and safe keeping of paper Health Records folders for over 50M consultations per year. • Pharmacy cost: For the period September 2001-December 2002, 11,6M€ estimated savings in pharmaceutical prescriptions related to the use of the electronic prescriptions module of EHCR. The savings are based on the incremental use of generics prescriptions over pharmaceutical specialities. • Temporary Occupational Disability (TOD) costs: The general agreement for health care funding between the Central Government and the Regional Government, for the period 1998-2001, established a complementary fund linked to the improvement in economic indicators of Social Security Subsides for TOD. The control of those indicators has been based in rationalizing the disease management of the affected medical processes supported by a better knowledge and monitoring by family doctor, enabled by the new EHCR System. The achievement of the goals included in the Agreement has generated a complementary income of up to 193 M€ for the Regional Health Care System. The savings estimated by the Regional Ministry of Health to the Social Security, in TOD Subsidies in the four year period, has been established approximately in 487 M€ (tenfold the 48 M€ of the initial investment). Regarding CEGES in order to be able to carry out an exact assessment of the economic beneﬁts derived from the Systems and Technologies Management Centre, one of the ﬁrst tasks undertaken in the development phase of the project – prior to actual rollout – was to prepare a cost-beneﬁt analysis. On the basis of a series of baseline hypothe-

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ses, two cost-saving scenarios were considered in this analysis, referred to generically as ‘conservative’ and ‘optimistic’ in accordance with the requirement of the baseline hypotheses. Quantiﬁcation of the savings obtained with the operation of CEGES stems from two main sources: on one hand, savings can be achieved due to the fact that the Centre deals with 65% of the incidents with no need for ﬁeld or on-site deployments, which reduces the costs associated with the provision of support to the end users (reactive savings); on the other hand, the existence of a work team devoted to proactive detection of possible issues, reduces the number of inactivity hours of the corporate systems, with the subsequent cost reduction (proactive savings). Four and a half years after roll out of the Centre, the review of the cost-beneﬁt analysis shows that the actual savings obtained are slightly over the forecast ﬁgures of the most optimistic scenario. The overall ﬁgure for savings achieved is around 5.006K€ in 2002 when the most optimistic forecast was 4.688K€. The overall ﬁgure for estimated savings until 2002 was 2.101K€. 5.1. Proven beneﬁts in terms of access to care • Facilitation of citizen access to administrative transactions: web access to Primary Care doctor list offer and election. Change of Primary Care doctor choice. • Electronic appointment increasing the efﬁciency of the system and improving the patient conditions. • EHR access at any moment (out of hours, telephone consultation, emergency) in local health care facilities. Since implementation of new DIRAYA version, access will be possible from wherever there is a network connection or SSL Internet. • Teleconsultation as the use of EVISAND. • Access to drug delivery and follow up of drug treatment in pharmacies for chronic patients without need of attending family doctors for renewal of prescriptions. • Signiﬁcant advance in provision of healthcare services in accordance with the principles of universality and equality: guarantee that Information Systems will be used to support healthcare assistance throughout the network, regardless of the location of the service provision Centre. The citizen always has the best Information and Communication Systems and Technologies resources at his/her disposal, regardless of the location. • The Systems and Technologies Management Centre has contributed to the fact that in 2002 the availability of technical infrastructures has settled at 98%, which ensures access to the healthcare services by the citizens. It also enables equal conditions of access to healthcare services regardless of the physical location from where the service is provided. 5.2. Proven beneﬁts in terms of quality to care The applications deployed in Andalucia facilitates the continuum of care both horizontally (within the Primary Care team) and vertically (through Primary Care, Emergency Care and Specialized Care).

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It allows the rational use of drugs, by accurate record and follow-up of prescriptions and consumption and aided prescription for interactions, secondary effects and contraindications as well as epidemiological and pharmaco-epidemiological surveillance. CEGES, as a key factor enabling development of the Digital Strategy of the Andalusian Public Healthcare System, allows a signiﬁcant advance in provision of healthcare services in accordance with the principles of efﬁciency and quality, which allows by improved management of medical care processes, temporary disability certiﬁcates, reduction of waiting lists, free choice of specialist doctor, etc. Provision and maintenance of the corporate technical infrastructures of the Public Healthcare System enables the citizen to access the health services regardless of the Centre location. In practice, to have all the relevant health information available at the point of care, anytime it is needed, support the health professionals to deliver higher quality care and improves the care process through information and exploitation tools for output and outcome production of care analysis, evaluation, quality assurance and knowledge generation.

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From SARS to Systems: Developing Advanced Knowledge Management for Public Health E. Andrew BALAS, Dean, Santosh KRISHNA School of Public Health, St. Louis University St. Louis, MO, USA Abstract. Historically, public health has been at the forefront of data processing applications but it is lagging behind other areas of health care in the application of advanced interconnected and mobile information technologies. Ready to use technologies are lacking not only for the management of emerging infections or bioterrorism but also for the coordination of prevention and chronic care initiatives. Advanced information and knowledge management for community health should expedite the transfer of research evidence to practice and provide essential logistical support for action. We need to ﬁnd ways to integrate new scientiﬁc knowledge into our environment in order to expedite the translation of research to practice.

Introduction A century ago public health was in the forefront of applying information methods. Later, it became lagging behind many other areas of business and services, including primary care and patient care. With the help of meetings like this conference organized by the European Commission, it can regain a leadership position and become a pioneer of information technology applications again. Such progress is much needed by our communities as we face many health and lifestyle challenges. It is, of course, a particular privilege to contribute to an initiative launched by Commissioner Liikanen. We in the United States very carefully observe what is going on in information society initiatives here in Europe. Let me give you just one example of that. When I worked for the United States Senate on health care legislation issues that was a time when the so-called HIPAA legislation was introduced. A major part of that was about privacy and conﬁdentiality of patient information, and much discussion was focused on the European standards. I think that the European leadership in protecting the privacy and conﬁdentiality of health information played a major role not only in Europe, but also in the United States. This is a movement that actually transformed health information applications throughout the world. Ultimately, transatlantic collaboration has much potential for the future, and we certainly would like to see expanding partnerships.

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1. Emerging Risks and Available Public Health Information Systems Logistical considerations suggest that it is impossible to build separate information systems speciﬁc to SARS, West Nile virus or any other emerging infection. Similarly, we cannot have a separate information system for bioterrorist attacks, like anthrax, polio, and others. Instead, we need a strong and comprehensive public health information infrastructure. At every opportunity, when the public’s attention turns to concerns of health we should advance the overall information infrastructure of public health. Figure 1 presents an overview of the systems that do exist in public health at various levels. First we need to take a look at the left side of the slide, the major information sources that are used by public health professionals on a daily basis. These include suspicious symptoms and syndromes, not the ﬁnal diagnosis just initial impressions, unusual disease events, rumors of suspected outbreaks. Obviously one question that needs answer is how we can computerize rumors, quite a challenge. Of course, the various types of soft information move into websites and online chats, and at some point to academic institutions, non-government organizations and others. Reports of these events eventually reach the national and international authorities. Other sources of information include ofﬁcial reports. They come from ministries of health or national institutes of health of various countries and represent a wide variety of information sources that need expedited processing. There have been a number of successful applications of computer assistance for public health information gathering and presentation. This is the classic computer application in public health: registries/databases of risks, diseases, and care resources. The list includes epidemic intelligence systems, systems of event detection, and preparedness/command centers. Especially when you see crises – and SARS is being one of them – there is a lot of emphasis on command centers where all pertinent information is coming in.

Figure 1. Public health information systems: sources, systems, actions.

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Subsequently, it is processed for decision makers to make more informed priority setting. It is always popular to present the information in a geographic context and with spatial and temporal trends.

2. Human Decision Makers Of course, all information eventually goes to human decision makers raising some signiﬁcant concerns. Some of the events, such as SARS, are so fast and the time is so little, that traditional human processing may be signiﬁcantly challenged. For example, when the anthrax attacks happened in the United States, the ﬁrst time they were discovered actually not in Washington, but in Florida, just a few weeks before the attacks happened in the nation’s capital. Fortunately, the director of the public health department of the United States Capitol immediately realized that the Florida attack may be extended to Washington, D.C. He used these precious days to set up agreements that could allow the timely processing of specimens. For example, he signed an agreement with the Navy Medical Center to process the specimens, and of course, they did not expect that there would be thousands of specimens a few days later. So when it comes to people, to human decision makers, we need to raise concerns. We need to think about the next step, the action. What you can see in public health information systems is that very little computerization happening on the action side (Figure 1). There are a few examples of actionable computerization: electronic alerts and management of logistic health support, standardized information products for media and professionals and so on – but it is an extremely limited selection. In other words, the public health profession is very good at collecting and storing information but we are not very good in electronically acting on that information.

3. Linking health data with scientiﬁc knowledge for practical action The question comes, how do we structure scientiﬁc knowledge for practical action? Just by collecting data, you can’t turn that into action without adding valuable knowledge to that. This is a challenge that far exceeds narrowly deﬁned public health or the management of crises. Two examples can illustrate these challenges. Genetic Revolution. One example is, of course, the steady stream of new genetic information that needs to become actionable, practical knowledge. Eventually, the newly discovered genetic sequences will become valuable public health information and preventive care is likely to be tailored based on your genetic makeup and environmental inﬂuences. For example, established assumptions suggest that cancer on the father’s side of the family does not count. In reality, half of all women with hereditary risk for breast cancer inherited it from their father [1]. (Figure 2) So don’t trust your father’s health history that much as you used to do. There are many other examples of this very profound paradigm shift as science progresses. So, we need to channel this knowledge and link it to the individual data, a major challenge of linking health data with scientiﬁc knowledge for practical action. Case for Biotechnology A kind of tasty example is that we have a very detailed speciﬁcation of what healthy food and healthy eating mean. This knowledge is rapidly becom-

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Figure 2. Contribution of family history to breast cancer.

ing available as nutrition sciences are progressing. The following is basically a chunk of the American Heart Association Dietary Guidelines [2] saying that in the ideal diet protein is about 15% total energy or 50 to 100 g for the day; sodium chloride <6 g for the day; saturated fat <10% of energy; cholesterol <300 mg for the day; fat intake of 30% of total energy; 20 to 50 g of soy protein is consumed throughout the day; or the diet high in polysaccharides, starches, and low in monosaccharides and disaccharides plus free from trans-unsaturated fatty acids. Such speciﬁcation sounds more for a jet engine than for your stomach. However, this is the knowledge that we have, and somehow that should be channeled into action. And the question, is how do we translate this information to the kitchen and how will this become tasty food that you can actually enjoy and beneﬁt from?

4. Beyond Complexity: Speed of Change We need to examine the speed of change, how the health profession – a kind of interesting question in the highly educated health care workforce – is able to respond to the challenges posed by the evolving science. We are investing enormous resources in science and producing vast amounts of research results. Now the question is, are we using these results? The answer is, well, at best, probably end with a question mark. We can examine a number of established preventive care procedures - like mammography, beta blocker after myocardial infarction, diabetic eye exam - that have been very well substantiated in randomized clinical trials. Such analysis can show how these procedures penetrate practice. The percentage of people who beneﬁt from the procedure is of course increasing. However, the trend of increase is an unfortunately slow pace. Actually, if you average all these changes, it’s about 2.39% of people that get added to those

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Figure 3. Speed of change in farming.

beneﬁting from the procedures, an extremely low number. No wonder it takes decades to get innovation into practice on a large scale. When you go to see a doctor, do you want to beneﬁt only from procedures that were discovered twenty or thirty years ago? Or would you like to beneﬁt from procedures that were discovered ﬁve years ago or ten years ago? I think these are logical questions and this is not just about discovery. It’s not just about breast cancer. It’s not just about beta blockers. It’s the way we manage information. Ultimately, we need to manage information better and we need to make knowledge more accessible. Just a comparison for the penetration of innovation in other ﬁelds, we can evaluate the global area for the Bt cotton, [3] which is a new product, new seed. Conventional wisdom assumes that agriculture is very slow to change. Many farmers live in remote areas and they are probably slow in responding. In reality, their speed of innovation, the penetration across these countries is 4.94% percent. So actually farmers are faster in adopting new technologies, at least in this particular example, than many clinicians. Certainly it’s not because of the competence of our clinician colleagues, but because of our information systems. The emergence of SARS is a good illustration of the challenges of responding to emergencies. It really shows that we need to develop some of our actions before the crisis hits. And SARS is a good example of the confusion that comes around. In the United States, the Centers for Disease Control (CDC) issues travel advisories like in many other countries and they advise people not to go to certain areas because of the danger of infection. So what happens if somebody comes from that area instead of us traveling there? Of course, the travel advisory doesn’t say anything about that. A number of prestigious universities actually gave advisory to their students not to invite relatives from Asian countries affected by SARS. Obviously Silicone Valley companies and others were watching that. They shut down conferences because of concerns of the Asian travel and hotels are

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concerned with their guests and so on. Subsequently, the CDC actually had to make a statement that travel advisories are only for outbound travel and not for inbound travel. “At this time, CDC does not recommend canceling or postponing classes, meetings or other gatherings that will include persons traveling to the United States from areas with SARS.” [4] We cannot insist on the established priorities of health, changes are inevitable. Andrea Fisher, the former Minister of Health in Germany, said that people have a romantic relationship with their hospitals. People everywhere, in every country, including the United States, and I’m sure that many of you have a relationship with your hospitals that is based more on tradition and perception than outcome expectations. We need something more, perhaps a more committed relationship with the way we manage information and knowledge in the service of health and well-being.

5. Actionable Knowledge To make a difference in outcomes, we need actionable knowledge. Here is the challenge: you have the publication coming out in a traditional article format and you need it in a totally different format for practical application. Obviously we need to translate new knowledge to a computable, actionable format (Figure 4). Fortunately, newer health care information systems that are sold in the United States have this decision support capacity. However, they don’t have the knowledge necessarily while having the capacity to support that. On the long-run we should expect more and more knowledge turned into these IFTHEN logical rules.

Figure 4. Knowledge into action – Clinical Alerts.

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6. PDA Health Alerts to Public Health Departments One of the most promising ways to deliver knowledge is the PDA Health Alert. These personal devices, good illustrations of small and mobile technologies, are starting to really make a good difference. Historically, the Center for Disease Control has a Health Alert Network to distribute information to state and local public health departments. Now with SARS, emerging infections, and bioterrorism, they want to contact the clinician more readily. Fortunately, Internet and the PDA are rapidly growing in availability. There is one particularly successful PDA system and it’s called ePocrates [5]. The medical profession has very well received it and currently two hundred and ﬁfty thousand clinicians are signed up to use the system. That’s about thirty-ﬁve percent of all doctors in the United States, an enormous number. When people say that doctors don’t like computers, they should look at these numbers. Actually the Department of Health and Human Services is experimenting with the transmission of bioterrorism health alert to these PDA devices using this particular software. Eventually the clinicians should be more integrated, more involved with the response.

7. Research into Practice: Built-in Intelligence Finally, we should highlight one more opportunity that is probably the most promising. Sometimes knowledge does not need to go into a computer in order to get out of the textbook and transfer into practice. For example, when you go to the gym there are treadmills that can ask very personal questions like your weight, age and so on. After entering that information, the machine adjusts the load in a way that it will keep your heart rate in the right range. In other words, the knowledge is actionable and based on good science. Obviously, when you exercise, you do not need a textbook or even a laptop. Not everything that is electronic should end up in the laptop. Fortunately, there is a growing number of systems that exemplify that including active alert systems for health care, wind sheer advisory system in airplanes, downhill speed advisory system in trucks, target heart rate program in treadmills, closed loop clinical devices, or even functional food. The knowledge has to be built into the environment, an intelligent, knowledgeable environment. The current long delay and waste in the transfer of research to practice is unacceptable and should be avoided by better management of knowledge [6]. That is our hope for the future in terms of delivering new knowledge produced by the advances of science.

References [1] Genetic Risk Assessment: Assessing Your Risk for Hereditary Cancers. Page available at: http://www.gacancer.com/patients/genetic_risk_assessment/ [2] American Heart Association: Dietary Guidelines. Circulation 2000;102:2284. [3] James C: Global review of commercialized transgenic crops: 2001 Feature: Bt. Cotton. ISAAA Briefs, 2002 Ithaca, NY

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[4] Centers for Disease Control. GUIDELINES AND RECOMMENDATIONS: Interim Guidance for Institutions or Organizations Hosting Persons Arriving in the United States from Areas with Severe Acute Respiratory Syndrome (SARS) September 23, 2003, 10:00 AM EST. Page available at: http://www.cdc.gov/ncidod/sars/hostingarrivals.htm [5] HHS tests Palm PDAs for bioterror alerts to doctors. COMPUTERWORLD, MARCH 24, 2003. http://www.computerworld.com/mobiletopics/mobile/story/0,10801,79660,00.html [6] Balas EA, Boren SA. Managing Clinical Knowledge for Health Care Improvement. Yearbook of Medical Informatics. Schattauer, 2000:65-70.

3. Empowering Patients and Citizens in Management of Health and Well Being

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Realizing the Potential of the Internet for Health and Medical Information Celia BOYER Health On the Net Foundation, Geneva, Switzerland Abstract. The latest advances in information technologies have allowed for the development of applications that have had tremendous repercussions in the healthcare ﬁeld. Along with access, means must be provided to ensure that information is trustworthy and relevant. This article examines some of the problems arising from unprecedented access to vast quantities of health information made possible by the Internet. The role of search engines is explored and some of their associated problems are mentioned. We then presents the most mature of these initiatives to protect the Internet citizen, the HONcode, developed by the Health On the Net Foundation. Finally, we conclude on the concrete result of the Health On the Net Foundation initiatives since 1997.

Introduction If you are able to ﬁnd the trustworthy and relevant medical information you seek with just a few mouseclicks, don’t bother reading this article. If, on the other hand, you have been frustrated at the time spent to ﬁnd a few unconvincing results, then this article may be for you. Recent advances in information technologies have had huge repercussions in the ﬁeld of health. Not only can nearly everyone use the information, but publishing your own web site is just as easy. This has resulted in an unprecedented proliferation of information sources on a global scale. But searching for information has become more difﬁcult, and the quality of search results is often disappointing. Along with Internet access, one must also have the means the check the reliability and the relevance of health information, and enhance access to information of the highest quality. To provide a permanent structure meeting this need, Health On the Net Foundation (HON, http://www.hon.ch/), was created in 1996 by the Geneva Ministry of Health (Département de l’Action Sociale et de la Santé de Genève – DASS) to act a watchdog, to protect the public interest. This article presents the solutions offered by HON to guide Internet users to the most reliable sources of medical information, and ﬁnd their way in the unfamiliar, ever-changing and sometimes dangerous information landscape. These solutions include MedHunt, HON’s medical search engine, and the HONcode, a code of conduct which sets minimum standards for information providers. In the past, one visited the library to ﬁnd information about an illness. With widespread Internet access, citizens have become more autonomous in their quest for knowledge affecting their lives. Web sites proffering health advice abound; as shown by Google1, currently the most complete, which proposes over 108 million pages containing the word

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‘health’, and 20 million mentioning the term, ‘medicine’. Terms relating to health are now the second most popular search subjects (the most popular is sex). Nearly one in ﬁve Swiss citizens - 18%, the highest percentage in Europe - uses the Internet to ﬁnd health information2. Of course a novice user searching for health information may quickly become frustrated. He or she will also have to decide whether to trust the many sources of dubious advice which may appear in their search results. Commercial interests and values clash with those of simplicity and common sense, and medical controversies continue to rage. Searching the Internet is now an essential skill needed by all, for any but the most superﬁcial web surﬁng. General-purpose search tools - and others speciﬁc to the medical and health domains are available on the web to help the user. Choosing among these is the beginning of any search strategy.

Where and how to search? On the heels of the Web came the search engines, automatically indexing the entire content of the public Internet. The best known and currently the most popular is Google. Google is a web application, available free of charge, providing access to over three billion indexed pages. As a result of the vast number of documents searched, it is not surprising that many documents will be found for a given query. The results are often disappointing, due the sheer size of the results set and to the irrelevance of many documents which may indeed contain the searched-for terms, but in an unrelated context. To provide the user with a more efﬁcient tool and more useful results, specialized search engines and directories have been developed for the medical and health domains3,4,5,6 . The number of irrelevant results is thus diminished. HON has developed a ‘full-text’ search engine7, MedHunt8, as well as a hierarchically arranged directory of web documents by theme, HONselect9 . These tools require an automated indexing system in order to retrieve medical web pages. For this, the robot M.A.R.V.I.N10 (Multi Agent Retrieval Vagabond on Information Network) was developed in 1996 by Health On the Net Foundation11 and the Swiss Institute of Bioinformatics12. M.A.R.V.I.N roams the web, searching for Web sites and documents relating to a speciﬁc ﬁeld of interest. The robot M.A.R.V.I.N. is an ideal means of limiting a web search over the Internet. Currently, three applications make use of databases created by M.A.R.V.I.N. The ﬁrst, MedHunt, is devoted to medicine, the second, BioHunt to moleculaire biology, and the third, 2Dhunt, performs search services related to two-dimensional electrophoresis. For HON’s medical search engine, MedHunt, M.A.R.V.I.N. limits its search to documents relating to health and medicine. The documents found by the robot are recorded in a database and can be consulted through MedHunt. The documents are organized in four categories: a general category, including all medical web sites (currently over 85,000 documents), and three others devoted to hospitals, support groups and conferences. MedHunt includes not only the sites automatically discovered by MARVIN, but also those sites certiﬁed by HON as respecting the HONcode, code of conduct created by HON in 1996. This initiative is discussed in the paragraphs below. Now, the search engine described above has been supplemented with a classiﬁcation system comprising some 33,000 medical terms, as well as extracts from specialized data-

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bases, to create a veritable medical encyclopedia, HONselect. Through a single interface, the user is presented with information from a variety of sources, all directly relevant to the theme of his or her research. Information comes from HON’s own databases13, but also from trusted sources such as MEDLINE14, ClinicalTrials15 , and daily medical news. Over 4,500 persons use HONselect every day. HONselect is an extremely complete tool for patients, but also for health professionals. One of its greatest strengths is to translate a common term into a scientiﬁc one and vice versa, to make the most effective use of specialized databases. All the tools developed by HON include a spelling corrector, to speed access and help with diverse linguistic backgrounds. Both HONselect and MedHunt are available in ﬁve languages: English, French, German, Portuguese and Spanish. (Danish, Dutch and Italian are already available in MedHunt), with simultaneous translation service and classiﬁcation according to these languages. Following a brief apprenticeship, new Internet users or experienced health professionals will ﬁnd HONselect to be an ideal tool to target and reﬁne their research.

HONCode: The Guiding Principles of Health On the Net Finding a piece of information is good start; it then must be determined to be relevant and trustworthy. The quality of online information is very uneven; few web publishers respect minimum quality standards16. When searching for health or medical information, users must decide whether to trust the references they ﬁnd. But how, and on what basis? There is usually no authority certifying the information, yet health and medical information is of a critical nature. A patient who is ill or vulnerable may become the victim of specious information, provided out of ignorance or by design. Who will protect Internet users from false or misleading information? To best gauge the quality of information we can look to the organization producing it. Thus, it is unlikely that false or misleading information will be provided by the World Health Organization (WHO)17 or National Institutes of Health (NIH)18 . But for information from the tens of thousands of less well-known sources, the danger is great. As the Internet gained popularity in the mid 1990s, and to address the uncertainty expressed by many observers, a group of web publishers, patients and HON decide on a course of action. The concept of ‘conﬁdence space’ was born. Its purpose was to create a ‘place’ on the web where information providers willing to uphold agreed ethical standards could share their information on a voluntary basis. The HONcode was developed by HON Foundation to unify and standardize medical and health information on the Web. HON put in place an accreditation process according to the HONcode19, the oldest and most widely applied standard of quality for online medical and health information20. Webmasters wishing to participate in this initiative and join the ‘conﬁdence space’ need to formally apply for accreditation via the HON website. Any medical or health website, containing information for patients or other individuals, or for health professionals, even if its content is not of a strictly medical nature, can apply for HONcode accreditation. Doing so requires a commitment to only provide information or services of real value to the user, and to respect all eight principles of the HONcode. Currently

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translated into 27 languages, the HONcode principles raise the following ethical issues, and oblige the accredited publisher to: • Specify, if medical advice is offered, if such advice comes from a medical professional, and if so, provide full information on their credentials; • State clearly that the information provided is intended to complement and not replace the doctor-patient relationship; • Protect the private nature of personal information submitted by visitors to the site; • Back up any statements concerning the beneﬁts or ill effects of products or treatments discussed on the web site; • Cite the source of information published; • Provide the names of the web site publisher, authors and webmaster; • Disclose sources of ﬁnancing of the web site; • Distinguish between editorial and advertising content. Each request for accreditation is handled by a member of the HON team. The web site is thoroughly visited and compliance with all eight principles of the HONcode is veriﬁed. Sites found to be in compliance are attributed a unique numerically coded seal which is to be displayed on the home page of the site. The seal is linked a certiﬁcate the HON web site (see example below) which provides details of the sites accreditation.

Due to the nature of the Web, always changing, often anonymous, difﬁcult to regulate, HON monitors certiﬁed sites for compliance. Sites are checked annually, or more often in case of complaints.

Conclusion The HON web site has become a reference for medical web sites on the Internet. HON’s search tools and code of conduct, the HONcode, are de facto standards for the quality of online health and medical information. Some 16,000 persons visit the HON web site every day. In June 2003, over 700,000 searches were conducted using HON’s search tools, by over 500,000 visitors who viewed collectively, more than two million pages. In recognition of its international status, HON was granted consultative status with the Economic and Social Council of the United Nations (ECOSOC). The HON foundation is internationally known for its pioneering work in Health Information Ethics, and as the originators of the HONcode, used in 67 countries. The HONcode is the most widely known and applied online ethical code, with over 3,600 accredited sites. HON continues

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to work to improve the quality of information for patients, and enhance access to the latest medical discoveries for professionals. The Internet has rendered obsolete the notions of borders and distance with respect to information. Its advantages are obvious to all, but there are also disadvantages. The worldwide web is a dangerous labyrinth where any individual can become lost. We must keep in mind our objectives, and conduct our critical research in places we know to be safe. Finding relevant information and ascertaining its trustworthiness are two inseparable concepts necessary for the web to ﬂourish as an unprecedented source of source of knowledge and expression.

Notes 1. Google : http//www.google.ch 2. Picker Institute Europe, 2002, representative sample of 1000 adults by country 3. « OMNI » http://omni.ac.uk/ 4. « Medical World Search » : http://www.mwsearch.com/ 5. MEDLINEPlus: http://www.MedlinePlus.org/ 6. HealthFinder: http://www.healthﬁnder.org/ 7. Full text: not limited to the strict medical vocabulary 8. http://www.hon.ch/MedHunt/ 9. http://www.hon.ch/HONselect/ 10. http://www.hon.ch/MedHunt/Marvin.html 11. http://www.hon.ch/ 12. http://www.isb-sib.ch/ 13. HON Sources: HONmedia 3’400 images et videos, 600 international conferences, sites HONcode certiﬁed 35’000 trustworthy Web documents 14. MEDLINE from the National Library of Medicine , 12 millions of scientiﬁc articles references from the medical domain since 1969 15. Clinical Trials from the National Health Institute, 3’000 clinical trials 16. Patient use of the internet for information in a lung cancer clinic. Peterson MW, Fretz PC. Chest 2002 17. http://www.oms.int/ 18. http://www.nih.gov/ 19. http://www.hon.ch/Conduct.html 20. BMJ Petra Wilson, Chief ofﬁcer of the European Commission

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NHS Direct Online: A Multi-Channel eHealth Service Bob GANN Director, NHS Direct Online, Southampton, United Kingdom Abstract. In the UK NHS Direct has developed a multi-channel e-health service for patients and the public. NHS Direct is enabling patient and citizen opportunities for fast access to information by using 24 hour telephone call centres, the web, digital interactive tv and public touch screen kiosks. This multi-channel strategy is based on the principle of providing people with maximum choice in the route by which they access information, with the assurance of consistent high quality information whichever channel they choose.

Twenty ﬁrst century healthcare Earlier this year the UK Chancellor of the Exchequer committed signiﬁcant additional funding to the National Health Service. The Chancellor also commissioned a leading banker, Derek Wanless, to produce a report on how the new funding might most effectively be spent [1]. Wanless identiﬁed the following key drivers for twenty ﬁrst century health care: • Patients want more choice and higher quality services • An ageing population and chronic disease management is driving up health costs • Information and communication technologies have considerable potential for improving delivery and quality of care • There will be major changes in the ways in which health professionals work Wanless saw particular value in investing in support for self care. A twenty ﬁrst century health service can support self care by enhancing people’s independence and expertise through investment in information, skills and technology. The report suggests that by 2020 visits to family doctors could decrease by 40% and visits to hospital outpatient departments by 17% due to increased self care, both for everyday health problems and chronic illnesses. For every £100 spent on encouraging self care around £150 of beneﬁt could be delivered in return.

UK policy on eHEALTH The Wanless Report echoed a well established e-health policy stream in the UK. In June 2002 the Department of Health published its IT strategy for the 21st century. Although principally focusing on delivering the key priorities of electronic records, elec-

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tronic bookings and electronic prescribing, the new strategy also looked forward to harnessing information technologies to meet patient information needs. The new strategy recognises that public information will be delivered via a range of channels. Furthermore information will increasingly be linked to electronic transactions. “Patients can expect up to date information about their symptoms to be online via internet or DiTV, or can phone a call centre to receive advice, and make appointment bookings online.” [2]

The information revolution Rapidly increasing access to information and communication technologies (ICTs) has been one of the most signiﬁcant social revolutions of the past ten years. Current estimates suggest that worldwide over 500 million people have made use of the Internet [3]. By the end of 2003 50% of UK homes were connected to the Internet (a ﬁgure which has risen from only 10% in 1999) with average time online 8 to 9 hours per week [4] Accessing health information is one of the commonest reasons for going online: surveys suggest that up to 75% of all web users have used it to access health information, and those that do so access health information 3 times a month [5]. The web revolution has undoubtedly narrowed the old information divide between professionals and patients. In principle anyone can access most forms of knowledge – and anyone can publish, quickly, cheaply and with potentially very wide readership. Developments in information and communications technologies are opening up to patients and the public information sources which were once the exclusive preserve of professionals. At the same time patients and carers are able to share their knowledge and experience with others, wherever they may be in the world.

NHS Direct Since its launch at three pilot sites in 1998 NHS Direct has become the largest provider in the world of direct access healthcare using modern communication technologies [6] NHS Direct provides 24x7 access to clinical advice and information, providing self care guidance or referral to appropriate health care services. The nurse-led service has now expanded to cover the whole of England and Wales via 23 call centres, and is now being implemented in Scotland (as NHS24). NHS Direct now handles around 6 million calls a year, projected to rise to 16 million a year by 2006. NHS Direct harnesses new technologies to deliver healthcare services direct to peoples’ homes. It allows people to access information and advice 24 hours a day seven days a week, enabling them to make better informed choices about the range of healthcare options available to them. From the outset, NHS Direct recognised the contribution that clinical decision support systems – software systems that help nurses in their assessment of patients – could make in ensuring a consistently safe service. At the piloting stage, a variety of clinical decision support systems were used. However, from October 2001, all 22 NHS Direct call centres have been using the same system, the NHS Clinical Assessment System. Virtual contact centre technology allows NHS Direct to move calls around sites to ensure the best ﬁt between demand and capacity; handle service or system failure in

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individual call centres; recruit in geographic areas where it is easiest to recruit staff; and close individual centres for training, staff development, or systems maintenance.

NHS Direct Online Following the establishment of the ﬁrst NHS Direct telephone call centres, the service moved promptly towards the development of an NHS Direct website [7]. NHS Direct Online (www.nhsdirect.nhs.uk) was launched by the UK Prime Minister, Tony Blair, in December 1999 and has established itself as Europe’s leading health website. In May 2003 this was recognised by winning the eHealth Europe Award for Empowering Citizens in Management of Health and Wellbeing at the European Commission in Brussels. NHS Direct Online now receives around half a million unique visitors each month. This is very similar to the number of telephone calls received each month by the NHS Direct call centre network - as many citizens now choose to make contact with NHS Direct electronically as through the more traditional telephone access route. NHS Direct Online has been piloting a personal health organiser called HealthSpace. HealthSpace is a secure web environment in which users can record their own personal health information (eg. blood group, medication, vaccinations, allergies, appointments) and care wishes (eg. birth plans, organ donation). A reminder option by email or SMS text message is also available for appointments, medication etc. HealthSpace can also act as a mailbox for responses to personal health information requests submitted to the NHS Direct Online Enquiry Service and a channel for selective personal news feed on health items of interest has been developed. Password permission to the user’s HealthSpace could be shared with a partner, carer or doctor if wished.

NHS Direct Digitial TV During 2001-2 digital tv pilots were established in several parts of the UK –providing access to NHS Direct Online content, which has been redesigned for the digital tv medium, as well as to specially commissioned programming on health topics. The largest of the pilots, Living Health in Birmingham, also provided a GP appointment booking facility and, through the NHS Direct In Vision initiative, allowed users to see the NHS Direct nurse on screen when contacting the local NHS Direct call centre. Evaluation of the pilots by City University (15) proved very encouraging with good initial take up of the services and positive user experience. Following the pilot projects, work has now commenced to develop and implement an NHS Direct information service across all digital television platforms nationwide. The service will start in 2004 and provide information on health conditions and treatments, medicines, local NHS services, health advice for travellers etc. There will also be further pilots of opportunities for delivering health care transactions via digital interactive tv.

NHS Direct multi-channel service The NHS Direct multi-channel service now includes:

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22 NHS Direct call centres all using the same NHS CAS decision support system NHS Direct Online website 200 NHS Direct touch screen information kiosks in public places 1.7 million NHS Direct Self Help Guide books NHS Direct Digital TV service to be launched in 2004

Beneﬁts of NHS Direct A number of beneﬁts for users and the national health care system are suggested for NHS Direct’s multi-channel services. These can be summarised as: Cost beneﬁts The Wanless Report [1] provided a cost beneﬁt analysis of the promotion of self care through channels such as NHS Direct and suggested that every £100 spent on supporting and promoting self care achieves £150 worth of beneﬁts. As demand increases on the NHS Direct call centre network there are considerable advantages in driving users to lower cost online information channels, freeing capacity in call centers to focus on clinical needs which require personal nurse advice. Access beneﬁts NHS Direct provides fast access to healthcare and information using modern technologies, 24 hours a day, every day. The multi-channel service provides choice of medium and may reach people who would not otherwise access healthcare services. There is some evidence that younger people & men may prefer our website, while pilots suggest that lower socio-economic groups and older people may use digital tv. Quality beneﬁts In a confusing maze of health information sources, of widely varying quality, NHS Direct provides a reliable gateway to high quality health information. The quality of NHS Direct Online’s own services has recently been audited through independent review by Commission for Health Improvement (CHI) in February 2003. This was the ﬁrst time that CHI (the independent audit and inspection body for healthcare providers) had reviewed an e-health service. NHS Direct Online’s systems for public involvement and staff management and training were particularly commended. CHI’s overall conclusion was: “NHS Direct Online is a dynamic forward thinking organisation which has achieved a great deal in a relatively short time”.

References [1] Wanless, D. Securing our future health: taking a long term view London: HM Treasury, April 2002 [2] Delivering 21st century IT support for the NHS London: Department of Health, June 2002 [3] NUA Internet Surveys How many online? (August 2001) www.nua.com/surveys/how_many_online/index.html [4] www.oftel.gov.uk/publications/research/2002/q9int_r0702.htm

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[5] Taylor, H The Harris poll: cyberchondriacs update (April 2001) www.harrisinteractive.com/harris_poll/index.asp?PID=229 [6] Jenkins, P & Gann, B Developing NHS Direct as a multi-channel information service British Journal of Health Care Computing 19(4), 20-1, 2002 [7] Jenkins, P & Gann, B NHS Direct Online in 2003 British Journal of Healthcare Computing & Information Management 20 (6) p25-27, 2003 [8] Nicholas, D et al First steps towards providing the nation with health care information and advice via tv sets City University, London, December 2003 http://www.soi.city.ac.uk/organisation/is/research/dhrg/reports/ditv-ﬁnal-full.pdf

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Area Wide Electronic Booking: A Revolution in the Management of Health and Well Being Ray WAGNER, Stephen MILLER, Ashley O’SHAUGHNESSY South East London Enterprise Community, NHS, U.K. Abstract. Area wide electronic booking provides patients with the choice of date, time and place as well as the certainty of appointment when referred into secondary care by their GP. The system provides substantial beneﬁts to both primary and secondary care as well as to the patient. This model is to be imminently implemented throughout the NHS in England, drawing from the experiences gained in South East London.

1. Introduction Traditionally within the NHS, patients have been offered little choice in their healthcare pathway. When a patient is referred from primary into secondary care, they have no input into the appointment booking process and ultimately receive an arbitrary appointment date, allocated by the Hospital, which may arrive several weeks after the initial decision to refer. The adoption of electronic booking systems empowers the patients and allows them to become actively involved in their own healthcare, providing them with meaningful choice, certainty and increased information.

2. Existing Process The existing method of referring and booking an appointment for a patient involves the following processes: Following the consultation, the General Practitioner (GP) will dictate a referral letter to the Hospital Consultant whom they believe is most appropriate to assess the patient’s needs. They will outline the information they feel is relevant for the Hospital Consultant to be able to best further the patient’s care. This approach presents the problem of GPs referring mainly to established contacts, rather than to the most appropriate clinician to treat the patient. There is also a lack of consistency in referral letter content. The dictated letter then has to be word processed by a member of practice staff and returned to the General Practitioner to be checked and signed before it can be sent off to the relevant Hospital. This process within primary care can take up to ten days from start to ﬁnish.

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Once within secondary care, the referral letter is received by the relevant Consultant’s secretary who opens the letter and then forwards it to the Consultants ‘in-tray’. The Consultant decides if the patient needs to be seen in an outpatient appointment and also prioritises the referrals urgency. However, there may be the need to re-refer the patient to a more appropriate consultant if the initial referral has not reached the most suitable clinician to treat the patient. Finally, another letter is sent to the appointments clerk who allocates an appointment date, which is subsequently posted out to the patient. This accumulates to give an average wait of four weeks before the patient receives conﬁrmation of their appointment date. During this time, patients may ring the practice and even book further consultations with their GP to check the status of their appointment. As the patient has not contributed to the decision about their appointment date, they may be unable to attend and a new date will need to be set, further slowing the progress of the patient along their care pathway.

3. Area Wide Electronic Booking System Using the area wide electronic booking system, when the decision to refer a patient is made, the GP accesses the system via their personal computer. The relevant specialty is chosen and the basic patient details are input. The GP then completes a referral protocol, which has been developed in collaboration between primary and secondary care clinicians and ratiﬁed by all organisations involved in the project. The protocol guides the clinician to the most appropriate and timely clinic and can also be used to capture additional information such as if transport or an interpreter is required. The protocols have been designed to be intuitive, using a mixture of ‘point and click’ and free text answers, and also as standardised as possible, requiring only the information necessary to determine the most appropriate clinic and urgency to complete the referral. Additional data including scanned images/test results can be added to the protocol at a later stage by either the GP or a member of practice staff. The protocol outcome displays all of the services within the local area that are suitable for the patient to attend. It is here that the patient, with the help of the GP, chooses which option is best for them. A service availability table, indicating comparative waiting times between services, assists in the decision making process. In the majority of cases, the GP then forwards the referral details to reception where the booking process is completed. The option to hide clinical information from practice booking staff view is available. The referral is accessed using its unique booking reference number and via an interface with the selected service providers computer patient administration system (PAS), the available appointment slots are seen. For each available clinic, the ﬁrst three appointment dates are displayed and the patient selects which is best. The patient ﬁnally decides which time is most convenient and the appointment date and time are conﬁrmed both with the patient and on the service provides PAS. The system is ﬂexible and enables a range of booking scenarios. For instance, utilising their unique reference number, the patient is able to book the appointment by calling the surgery the following day. Alternatively the GP can complete the whole process within the consultation if desired.

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The system also provides an advice and guidance facility, wherein the GP is able to ask an opinion of a secondary care clinician. Electronic dialogue between the two healthcare professionals can be sent back and forth and can provide suggested treatment regimes that may not require the patient to attend a hospital appointment or alternatively conﬁrm that an appointment is necessary. Also logging on to the system using a desktop personal computer, the secondary care clinician can review the referral details and view any attachments. They have the option of accepting, rescheduling or rejecting the referral with a valid reason. Any changes to the referral are reﬂected on the GPs homepage and are ﬂagged as such.

4. Technical setup The system is accessed through a browser interface both in primary and secondary care. There are standard web servers at each hospital as well as one “enterprise server” that acts as a broker between hospitals. The software interfaces with the PAS at the hospitals – using real time information to book appointments. It also interacts with some of the general practice clinical systems, where it populates demographic and medical history details. The system runs over NHSnet – the secure private network of the NHS. The software is proprietary, however it runs on standard database (SQL) and messaging applications. There is work underway towards standard interfaces and architecture.

5. Beneﬁts 5.1. Economic The most notable impact from both a patients and primary care clinicians’ point of view is the signiﬁcant reduction in time that the system propagates. The time for conﬁrmation of a secondary care appointment is reduced from 3 or 4 weeks to a matter of minutes. The immediate choices available to the patient and the resulting certainty that booking then provides, as part of this process, has meant measurable reductions in Did Not Attends (DNAs) in secondary care. The affect of this is to enable more efﬁcient organisation of clinics, as less vacant slots have to be left because of expected DNAs. All of this leads to greater systemic efﬁciency and better resource management. The nature of the system enables much better quality of data and information to ﬂow though the system, it is concise and accurate. It also negates the need for clinicians to hand write referrals, which can often lead to difﬁculties. Given the improved information, the resultant management information and the real time picture of referrals it presents, enables better-informed decisions to be made regarding service and resource provision. The advice and Guidance facility enables a de facto secondary care opinion to be sought on line. This has been shown to prevent unnecessary referrals and has a direct impact on the cost of patient treatment, as there are no wasted ﬁrst appointments. A signiﬁcant cost saving comes form administrators no longer having to search for and chase up written referral letters as all information is contained in the system with a full audit trail available. In some Practices the amount of time saved by an individual member of the administrative staff not having to chase appointments can be up to eight hours and there are commensurate savings in secondary care.

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It is also recognised that a greater economic good may result. Patients are better able to arrange their appointments around their work and so should be able to ﬁt appointments into pre-arranged annual leave or travel shorter distances if choosing a hospital near to work, thus time lost to employers should be reduced. With the Area Wide booking system there are further economic efﬁciencies accruing due to the breaking down of NHS organisational silos and the need for a single point of access to a variety of services. 5.2. Quality The system provides for much greater patient involvement in determining the path of their care, it provides an immediate choice of place, time and date. The patient can book immediately or within a day. This provides the patient with absolute conﬁrmation of their appointment, reducing uncertainty and removing a great deal of anxiety. The protocol-based nature of the system ensures that appointments are made to appropriate specialties and indeed supports the idea of further specialisation with sub specialty referrals. The protocols also ensure that both clinical governance and national priority requirements are met. The process of protocol agreement across NHS organisations ensures that there is consistency of approach and interpretation, this also means that the referral information itself is much more consistent and appropriate. Given the nature of the system it means that communications between different NHS organisations is improved, a real dialogue can now take place at time of referral between relevant clinicians and administrative staff. The system also promotes education for referring clinicians by allowing booking rules (protocols) to reﬂect changes in referral guidelines and by allowing electronic protocols to directly reference on-line clinical guidelines. For instance there are hyperlinks in relevant protocols to Royal College Guidelines on Radiology. The system exists within the NHS private and secure network but it has rigorous access and security measures, which make it more reliable and secure than current paper and telephone based systems. It ensures that bookings and referrals arrive at the right place and are read by the right person at the right time. All bookings and referrals can be accessed from archives giving full audit details of who, what when and where. There is further access restriction dependant upon who is looking at the system. In effect this means that a receptionist cannot see a patients medical details when booking an appointment on their behalf. 5.3. Access The Area Wide system displays, in real time, the comparative choices open to the patient. Based upon this they are able to make a better-informed decision with their clinician than previously. It is implicit in the patient’s decision that it is far more likely to be convenient to them then a hospital dictated date. The system also allows for the booking of both transport and interpreting services, again providing a more patient friendly and focussed level of access. Within protocols exist the ability to co-ordinate the booking of related and prerequisite tests. This provides much greater convenience for the patient and presents a more streamlined service to them.

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The impact of wider use of such a system (and it is intended to have a broadly similar service nationally) will enable the NHS to shape its services and developments around the preferences of individuals, patients, their families and carers. Indeed the current system can be adapted to provide for a range of non secondary care outcomes making the NHS even more responsive to patient and clinical requirements.

6. Future Work It is planned to extend the area wide system to include neighbouring hospitals, increasing the choices available to patients. The development of a booking management service is also being investigated, which will effectively remove the booking process from both primary and secondary care and free up resources for other tasks. The booking management service will utilise the same software, making use of the unique booking reference number and will be accessed via telephone. The area wide principle is also to be rolled out throughout the NHS in England with the aim of being ubiquitous by the end of 2005. Planning, development and implementation for this major undertaking will draw up the experiences and lessons learnt from the work in South East London.

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Slovene National Insurance Card System: Connecting Patient and Health Care Marjan SUSELJ Health Insurance Institute of Slovenia Ljubljana, Slovenia Abstract. The paper outlines a case of an implemented modern IT solution in the health care, that is, the Slovene health insurance card system. The system is in full operation nation-wide and covers all the aspects of health care and health insurance operations. The system allows reliable identiﬁcation of patients and service providers and, with its design open to enhancements, is a major breakthrough in the process of transition to e-health. The paper addresses both the national and international perspective of such IT solutions, with the main issues and goals being the quality of services to the citizen, the health care system economics and management, and the free movement of people and services in the internal market. Special consideration is devoted to the compatibility and interoperability of national systems with the emerging European health insurance card. Furthermore, the paper outlines the main ﬁnancial dimensions of the development to date and the changes achieved through the intensive development in terms of quality and accessibility of health care services.

Introduction Following gaining independence, Slovenia undertook important reforms in the ﬁeld of health care as well. The major systemic reform was launched in 1992 to bring the Slovene health care and health insurance systems in line with the European systems. Private practice was reinstated in the health care sector. Today, we meet a mix of public and private service providers in the health care network, and the function of personal physician, who regulates the patient’s access to services and beneﬁts at different levels. Within the public health care network, all service providers operate under contracts with the Health Insurance Institute, who is the purchaser of services. The national expenditure on health care has been in the region of some 9.07 % of the total GDP over the past years. The Slovene health care system faces the familiar pressures and challenges of population ageing, development of medical science and technology, increasing drug expenditure etc. as experienced in all countries around the world, in particular in the developed regions. The health insurance scheme comprises the public compulsory health insurance and the private voluntary insurance segments. The compulsory insurance is provided by the Health Insurance Institute as a public non-proﬁt service. The Institute operates autonomously under the steering and supervision of the Parliament. The voluntary insurance is provided on a commercial basis. The main body of insurance policies consists of insurance against copayment of services basically and to a major percentage covered by

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the compulsory health insurance. Overall, the supplementary health insurance funds (not all of them private) account for some 15% of the total health care expenditure. In parallel with organizational reforms, Slovenia undertook systematic development of the application of information technology in the health care sector. Namely, the Slovene policy and decision-makers share the belief that IT is a major factor for the quality of services to patients and to economical operation of the health care service. With continual investment and development, we have seen a number of important achievements over the past years, with the Institute taking an active role in these efforts. Thus, since 1993, almost all administrative work posts are equipped with computerized data processing systems. All the databases relevant for the health insurance operation have long been computerized and developed. Electronic data interchange is the prevailing mode of all reporting and accounting transactions between the health care service providers and the Institute. The intense IT support to the every-day work of health insurance and health care professionals has resulted in a high level of “information technology literacy”. This environment was the starting point for a computer readable health insurance card (HIC) and for the building of a more integrated and advanced information network, as the next logical steps in the data interconnection of all actors in the health care sphere.

1. HIC Project – A National Project The HIC project objectives included the following main sets of improvements: − quality of services and treatment of insured persons, at the Institute as well as at the health care service providers; − communications between the Institute, doctors and health care organisations; − reduction of the volume of procedures and administrative tasks; − higher level of data security and accuracy within information systems; − ﬁnancial and national economy beneﬁts at reasonable ﬁnancial investment; − infrastructure for integration of different IT systems in health care and health insurance; − facilitation of a citizen’s and a health professional’s access to the e-environment; − paving the way for further penetration of IT in the health care environment. Though initiated, sponsored and managed by the Institute, the HIC project was set up as a national project. The main characteristic was the involvement of all relevant bodies and organisations in its steering and monitoring. The project steering and evaluation of its key phases were the function of a national project board, which involved the participation of: − − − −

the Institute management, the Ministry of Health; the Government professional bodies and agencies responsible for informatics; the public institutes in the health care ﬁeld; and the professional associations of health care workers.

At the operational level, the project structural scheme addressed all the key project aspects, ranging from the technology through organisational, legislative and economic, to education and training. Namely, the project did not just introduce new technological solutions, but involved an important social change.

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The project was formally launched in autumn 1995. The ﬁrst year was dedicated to the new system design. The design was submitted for discussion to the general public and relevant professional and political groups and bodies. Next, it was tested and veriﬁed in a pilot project in one region, involving close to 70 thousand insured persons. The successful pilot project opened the way to the national scale introduction. The actual deployment of the national system began in October 1999, and the full system operation was achieved in October 2000. Throughout the design and implementation process, HIC project observed the following approach principles: − covering of the entire health care sector, all processes, entire national territory in a uniform way; − establishing a common platform and interfaces for all environments (uniform and standard API’s); − application of common technology building blocks; − providing adequate education and targeted training to all user groups; − preliminary testing and veriﬁcation through a pilot project; − systematic evaluation and review exercises at all major decision points and milestones; − continuous monitoring of acceptance with all user groups; − establishing the consensus support context. 2. HIC System Outline 2.1. HIC System Technology and Scope The HIC system structure, in terms of technology, is illustrated in Figure 1.

Figure 1. HIC system technological components and structure.

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As regards the technology, the main HIC system components include: − the health insurance card (HIC), issued to every insured person (2 million cards); − the health professional card (HPC) serving as the access key for secure access to HIC data and network services (17 thousand cards issued); − the IT platforms in the health care ofﬁces to operate the card, integrated in the normal local data processing environment (6 thousand workstations upgraded); − the network of self-service terminals (SST) (285 terminals). Both cards are microprocessor based smart cards. They support a range of security functions and are sized to accommodate upgrading with new functions and data during their service life. The SST network covers the entire national territory. The terminals are located in major health care facilities and are accessible to the HIC holders throughout the day. The network primary function is the updating of card data. In addition, the terminals serve as health care information kiosks. Their third important function is the secure downloading of new functions and data on the cards. The network is also the infrastructure for a number of e-services. Such a network is an additional channel for communication with the insured persons. It supplements the Internet channels, counter work and call centres. 2.2. HIC System Functions In line with the international experience and recommendations, the Institute opted for a phased introduction of the system functionality; the system technology, though, being sized for future enhancements. In the initial phase, by October 2000, administrative functions were implemented: the holder’s identiﬁcation data, insurance data for both the public compulsory and private voluntary insurance, and the details of selected personal physicians. From October 2000, the system designers have involved in a continuous development of functionality enhancements. In this way, the system functions expand to cover more health insurance business needs and into the medical sphere. To date, several new functions have reached the stage of implementation or ﬁnal design stage. The functions concern the e-services through the SST network, the recording of the cardholder’s commitment to posthumously donate organs for transplants, and the information support of issuing medical technical aids. In parallel, a number of new functions or extensions are in preparation. The list includes the support to prescribing and issuing medication, the recording of vaccination data, life critical allergies to medicines. The dimension of intervening into the medical aspects of health care, shared by all these extensions, inevitably and obviously implies lengthy processes of establishing a consensus about the use and management of data involved, as well as about the procedures, authorities and responsibilities involved. The entire design and development process is thus dominated and timed not by the technical aspects, but rather by procedural, doctrinal, jurisdictional and political issues. The technical infrastructure for such enhancements is in place and available. In the technological segment, the HIC system is being upgraded with digital signature and the public key infrastructure (PKI). In the ﬁrst phase, this enhancement will be implemented with the health professional card, later on, extension to the health insurance card is envisaged. The additional security provided with this technology promises to turn

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the cards into powerful and secure tools for access to network services and data, in an integrated card/network environment.

3. Project Financial Dimensions The HIC project involving considerable ﬁnancial resources was released for realisation only after a comprehensive preliminary cost-beneﬁt analysis. The costs taken into account included all investment in development, computer equipment, training and maintenance, while on the beneﬁt side, detailed analyses were done of the anticipated effects in terms of the simpliﬁcation of procedures in health care and health insurance, the simpliﬁcation of procedures of registering-in health insurance on the part of the employers, simpliﬁcation or abolishment of unessential procedures for the insured persons, anticipated reduction of the rate of reclaims due to improved data quality, etc. The detailed evaluation upon the completion of the project fully conﬁrmed the forecasts. The planned and realised ﬁnancial structure of the project is shown in Figure 2. The follow-up monitoring of the new system effects revealed further ﬁnancial beneﬁts, in terms of improved control over input and output resources, both in the sector of compulsory health insurance and in the supplementary health insurance sector. These beneﬁts shortened the predicted payback period even further. In the cost-beneﬁt analysis, only the ﬁst phase functionality was taken into account, while all subsequent functionality enhancements bring substantial business beneﬁts at moderate incremental investment in development. An example of such a new function is the recording of issued medical technical aids on the card, a project completed in June 2003. The total development and implementation costs did not exceed 100 thousand EUR, while the new application signiﬁcantly facilitated the information segment (data available to the prescribing doctor at time of prescription, data available to the pharmacy or supplier at the time of issuing, ﬁnancial data available to all payers, simpliﬁed procedure for the patients) of a ﬁeld with an annual budget of 40 mio EUR. We estimate that the total costs of next similar functionality enhancements should be in the same size bracket: support to the drug prescription, recording of selected medical data for emergency situations etc.

Figure 2. HIC project ﬁnancial structure.

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4. Slovene HIC System in the Cross-Border and International Perspective From the very outset of the HIC project and throughout its progress, Slovenia was fully aware of the importance of international compatibility and interoperability of the envisaged HIC system. The incentives for this commitment derive roots both from the awareness of the economic and operational beneﬁts of applying proven and universal technologies, as well as from the vision of the positioning of the new system in line with the emerging similar systems in the community in which we are entering, to facilitate future cross-border interoperability in establishing an environment for free movement of people and services. The experts involved in the HIC system design have observed the available standards and recommendations for technology and functionality, developed under the EU sponsored development and concertation projects. Furthermore, we have actively participated in a number of initiatives and projects in the EU framework, including our active participation in the EU Netlink project and our involvement in the TB 11 eHealth workgroup in the scope of the eEurope 2002 initiative. The EU Commission has launched an initiative for an EU health insurance card to further promote the free movement of European citizens in the internal market, with the phased introduction of this document and its context envisaged in the period up to 2008. The second, electronic, phase will be grounded mainly on the results of the Netc@rd project. The Slovene card and IT solutions in the health care look to be fully compatible with the current and planned EU health insurance card functionality. In view of the infrastructure already in place, and experience gathered, Slovenia is particularly interested and committed to participate actively in the projects addressing the second electronic phase, such as the Netc@rd project.

5. Effects on the Quality and Accessibility of Health Care Services Quality and accessibility of services to insured persons – patients, while a non-tangible beneﬁt component, is the ultimate goal of any introduction of information technology solutions in the health care. These beneﬁts can though be inferred indirectly, through a number of improvements, such as: − availability of up to date and accurate relevant information at all times and locations of dealing with the patient throughout the Slovene health care system, and in turn, higher quality professional treatment, less administrative chores for the health care workers and more time available to treat the patient; − facilitated insight of the patient into his/her data in circulation in the health care system, and thereby stronger sense of responsibility for these data; − increased accessibility of health insurance services to the client – consultations through the self-service terminal network accessible non-stop, on a 7days/24 hours basis; − contribution to the transparency of expenditure of resources in the health care, both in the compulsory and voluntary insurance sectors; − uniﬁed technology applied by all health care service purchasers, i.e. a single edocument, leading to signiﬁcant simpliﬁcation for both the patient and the health

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care workers. The uniﬁed integral e-document and technology, and the proﬁciency in its uses among all the Slovene citizens is a ﬁrm basis for the facilitation of the movement of people in the health care system now at the national scale, and in future, in the common market; − a number of initiatives induced by the project in the broad health care environment, invigorated further investment in IT and its use in the professional medical work.

6. Further Integration of the Health Care Information System As a phase in the continuous process of modernisation of information systems in the health care sector, a major project is under way in Slovenia, the Health Care Management Project. It is managed by the Ministry of Health and co-sponsored by the World Bank. Health care is a complex system, which combines many subjects, such as providers of health care services, users of health care services, health care policy makers, etc. Good communication among these subjects is of key importance for the system operation, management, planning and development. It can only be assured by precisely deﬁned standards (data), which can be unequivocally understood and used by all the participants in the system. Thus, one of the key project objectives is the formulation of health information standards, including their architecture, data models, coding systems and classiﬁcations, conforming with the TC 251 HISA scheme, to enable the introduction of diagnosis related groups and further development of electronic patients’ records. The process of the development of an integrated information in the health care is illustrated in Figure 3.

Figure 3. Integrated information system in the health care.

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The development of the information system is an important component in the overall health care system reform, which has recently been announced and outlined by the Ministry of Health. In this respect, the HIC system already in place, with its combination of secure cards and network solutions, is seen as a valuable technological infrastructure for the implementation of the project concepts. In the process, the card will embrace other data beyond the current identiﬁcation and administrative set, and will progressively embrace health care and medical functions.

7. Conclusions In accordance with the objectives, plans and concepts invested in its development and implementation project, the Slovene HIC system has proven to accommodate the needs of the entire national health care and health insurance system. One major element of its success and acceptance was its bringing beneﬁts to all health care actors, users and shareholders. For the patient, the system facilitates access to health care and health insurance services, for the health care workers, it ensures reliable and accurate patient identiﬁcation, provides up-to-date data and thus also facilitates the reporting and accounting of services provided, to the health insurance providers, the new system has contributed to the overall transparency of data and ﬁnancial ﬂows, and to the health care sector as a whole, the system offers a versatile and standardised technological infrastructure for the phased and systematic introduction of new information uses, broadening of the function set towards the health care and medical applications. Thus, it is the vision and systematic approach that facilitate the implementation of concepts and solutions bringing signiﬁcant beneﬁts to all and each user group. The principal mission of IT in the health care system, like in any other public service sector, is to contribute to the quality of services to the client - patient, to promote his/her autonomy and sharing of responsibilities. Deriving on its experience and know-how gathered in the course of the national HIC project and other successful projects completed, Slovenia is committed to actively participate in international projects in the ﬁeld of card and network solutions for health care and health insurance sectors, and to share its experience with developers and designers in other countries attacking the implementation of modern IT solutions in the health care sector. The Slovene national HIC system project has demonstrated that even in the delicate ﬁeld of health care, dominated by the utmost necessity of data security and privacy, as well as of security of procedures, positive results can be achieved and veriﬁed. To beneﬁt further from initial success for the beneﬁt of all the citizens, continuous and fast development in this ﬁeld is another pressing demand.

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Sustains - Direct Access for the Patient to the Medical Record over the Internet Benny EKLUND, Ingrid JOUSTRA-ENQUIST County Council of Uppsala, Sweden Abstract. The basic idea of Sustains III is to emulate the Internet banking for Health Care. Instead of an “Internet Bank Account” the user has a “Health Care Account”. The user logs in using a One Time Password which is sent to the user’s mobile phone as an SMS, three seconds after the PIN code is entered. Thus personal information can be transferred both ways in a secure way, with acceptable privacy. The user can then explore the medical record in detail. Also get full and complete list of prescriptions, lab-result etc. It’s also an easy way of exchange written information between the doctor and the patient. So far Sustains has showed that patients are very satisﬁed and is also beneﬁcial for the physicians.

1. Introduction Would patients beneﬁt from instant access to their own medical record? And how would the doctors react to such a scenario? Those were two of the questions asked when the County Council of Uppsala set off to explore the effects of giving the patients access to their own medical record via the Internet. Other questions asked were; what are the security and integrity implications? Is sufﬁcient technology available? One of the most important objectives was to encourage patient involvement. A basic condition for patient involvement is to have access to that same information as the providers. The project, funded by the EC and the Swedish Knowledge Foundation, launched a system that deals with all the technical, security and integrity matters. The central idea of Sustains III could be understand as a copy of Internet banking, but for Health Care. Instead of an “Internet Bank Account” the user has a “Health Care Account”. The user logs in using a One Time Password. Thus personal information can be transferred both ways in a secure way, with acceptable privacy. The user can then explore the medical record in detail. Also get full and complete list of prescriptions, labresult etc. It’s also an easy way of exchange written information between the doctor and the patient. The project started as an EC-funded project in 1997 and continued in 1999 with a nationally funded project. We wanted to strengthen the patient’s position versus the Health Care provider. The test group consisted of 100 patients in the ﬁrst project. In the second we gave more patients the possibility to access to their whole and complete Medical Record via Internet.

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The Swedish Federation of County Councils has recently published a book to show the beneﬁts of similar services [1].Today the service is in production. So far we have offered it to 2.300 patients and will extend it to the whole population in the region consisting of 300.000 inhabitants, with start 2004. A presentation of Sustains could be found at http://www.lul.se/sustains. There are other projects concerning Internet access for patients. One is PCASSO where doctors as well as patients can access medical records from an intranet [2]. Another project tries to distribute data wireless [4,5].

2. Materials and Methods In the project we have combined several phenomena and typical characteristics in the society of today: Technological - society • • • •

High coverage of Internet accesses High coverage of PC’s at home and public places Very high take-up of using webs at the average of citizen level. Almost a cell phone in everyone’s pocket

Financial • EC-funding (about 2.000 KSEK) • KK-funding (Swedish Knowledge and Competence Foundation) (about 3.000 SEK) Organisational • Project had a very good network of professionals, bridging cultural and technological difﬁculties. • Fast transition from paper-based information to computer-based, at back ofﬁce (hospitals and GP’s) With basic conditions as above, we set up two pilot projects and executed them. We focused on security and privacy, beneﬁts for the citizens and the provider, and ﬁnally accessibility of information regardless of time and place. The results from the two pilot projects where combined in a speciﬁcation for a system which had been launched in limited production since November last year. We presently have a plan to reach a capacity for all citizens in the region, within three years. We are also aiming to provide a “seamless understanding” of the Health Care for the citizens. The ideal situation is that the citizens experience the back ofﬁce of the service as one organisation, even if the resources we use are composed of databases from different governmental bodies. The service itself is dependent of very complex technological structure. However, the project can be considered as “low budget” and only acting as the “missing link”. SUSTAINS I (the ﬁrst pilot) This was an Esprit IV project (Project 22994 – Sustains). The project was split in two parts: Italy – concentrating on public kiosks and Sweden – using Internet. The latter gave 100 citizens personal access to a back ofﬁce of a Patient Administrative System at

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Uppsala University Hospital. The evaluation gave a very clear indication that the users wanted “all information available” including the Medical Record. SUSTAINS II (the second pilot – Funded by KK-stiftelsen Swedish Knowledge and Competence Foundation) In the second project we put the users request into operation and also increased the security level up to an “Internet banking level” which we considered to be satisfying the average citizens’ demand for privacy and integrity. We set up a team of two private companies (from the Esprit project) and two public organisations. A substantial part of the efforts was publicity in papers and appearance at conferences (see list below). This was necessary due to some obstructive cultural barriers in the professional organisation, but also among citizens who were unused to think “outside the box”. This activity has been very successful. 2.1. Risk Management Health Care as such is business that contains a certain amount of risk management. To be a patient and be a weak target for treatment and diagnostic procedures is indeed to be on a path where both visible and hidden risks are present. Therefore, risks are perhaps viewed in different light compared with a situation where the person is healthy. To display the whole Medical Record via the Internet for the patient is a delicate matter of risk management. Our experience is that, compared with the risks of Internet banking, the opinions of risks and security are divided into two mainstreams. One group consider the medical information as much more sensitive compared with the economical transaction in the bank account. The other group has the opposite opinion. However, these are some of the most common risks expressed by both professionals and patients: • What is the risk that a hacker gets access to very private data? • Is there a risk that the patients misunderstand the information regarding their condition? • Can physicians be more cautious when recording observations, making the notes less useful for future use? • What’s the risk that a user gets access to other users Medical Records? Such questions must be very carefully explored before presenting the concept to both professionals and citizens. 2.2. Managing Implementation The above issue has been explored in a number of seminars. We found that the idea as such has been highlighted by many, but implemented by none. One reason could be the difﬁculties to successfully combine the phenomena’s and typical characteristics in the society of today, mentioned earlier, together with a trustworthy risk- and change management. 2.3. Sustains III – A Technical Description 2.3.1. Overview Sustains is built as a multi tier solution. This is mainly for security reasons but also for performance and ﬂexibility reasons. The end user is only required to have a reasonably

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up-to-date web browser to access the service. They simply connect to a speciﬁc URL belonging to the County Council. The web server then establishes a secure connection to the system application proxy server through the corporate ﬁrewall. After having been authenticated, the user is granted access to his Medical Record residing on the Medical Record server of the treating medical unit. The whole system uses four different hardware tiers and even more software tiers. 2.3.2. The Connection The connection uses PKI and X.509 certiﬁcates to ensure integrity and authenticity. After contact has been established between the proxy and the web server, the proxy tells the web server to ask the user to identify himself. An external RADIUS server then performs the authentication on behalf of the proxy, which includes granting access to a certain Medical Record. The proxy then sets up a session key to keep track of the authenticated user and whose Medical Record he is authorised to access. 2.3.3. The Authentication The external RADIUS server uses strong authentication to ensure the identity of the user. This is done by an ordinary user name and PIN as well as a randomly generated onetime-password. The password is generated by the server and distributed to user’s mobile phone as an SMS-message through the GSM network. This of course requires the user to be registered in advance together with his or her mobile phone number. This is considered to be strong authentication since the user is identiﬁed using something he knows, the PIN, and something he has in his possession, the mobile phone or the SIM-card. 2.3.4. Accessing the Medical Record Once the session is established the user is allowed to access all parts of his or her Medical Record. The session key ensures that the user never breaks the chain of access rules and never has any possibility to access the Medical Record of any other patient. In order to ensure that no one can interfere with the safe running of the Medical Record server, the proxy always checks every question or statement sent from the web server to the Medical Record server. This means that, even if someone takes control over the web server with hostile intentions neither should he be able to access the information from the Medical Record server nor should he be able to interfere with the information processing on that server.

3. Results Our objectives were to help consumers of Health Care to ﬁnd a way for living a normal life. They must also be in control of their personal data of treatment and health. As a side effect we also wanted to make the provider’s workﬂow more effective and efﬁcient. Does our project meet those expectations? Below are some highlights from the two reports of the pilots preceding Sustains III. The number of users in the two pilots was 100 persons, but not the same individuals. The average age of the users (patients) was 55 year and the gender distribution was equal. We also found that different educational levels were approximately well represented and that slightly less than 90% of the users had access to

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data from home since the last two years (1999). Most of the users (70%) had experience from computers at work and one third of them had access to Internet 3-5 times a day. Also most of them (77%) had never used a service of type “Ask the Doctor on the Net”. Many of the users also had previous experience of service on the Internet as Internet banking and purchasing (70%). We also asked the users for the most wanted services. The results (in terms of popularity) are: Medical Record, Booking of visits, Check of bookings, Drug listings, Medical dictionary, Fees, Medical list, Change of GP, Transportation, Earlier transports. It should be mentioned that the “Medical Record” is a rather complex subset of many documents. When we asked how they ranked the risk, most of the users (82%) expressed that they have not been worried for security risk. It should be mentioned that all users in the pilot Sustains II had a SecurID token which they were provided. The users were also asked whether they would be worried for security risk in case of “full scale service”. 73% of the users expressed that they have not been worried for security risk while 2% expressed “big concern”. For the Health Care providers the following results were found. There was no effect on back ofﬁce systems performance (only 350 users). This GP has 2.300 persons on his list. A heavy part of the project was the administration of accounts and tokens. In a full scale production it is necessary to ﬁnd more effective ways for creation of new user accounts. Also the cost of tokens was substantial. In our present system the One Time Password is therefore distributed to the users’ mobile phone as an SMS which pops up in the display without need to open the Message Inbox. The most common objection from physicians was that they expected an avalanche of call from patients who did not understand what was in the medical record. Our experience was that there was no extra call from patient who did not understand the content. Another fear from physicians was that patient may be more hostile and suspicious when they are able to read the notes. On the contrary we found an increased conﬁdence in doctors and staff from patients. One very important need for change was to shorten the delay of signing the text as we only exposed signed parts of the medical record. The professionals also predicted a faster transition to a more precise language in the records as well a belief in that better patient understanding for complex and time consuming processes, will lead to increased patient satisfaction. Also the physicians expressed a general expectation of substantially more efﬁcient care, when more users and more functions ands services will be available in the future. The present uptake of the service today is about 15% of the population. But still the general awareness of the existence of such services is rather low compared with Internet banking in Sweden. For the present system in production (Sustains III) the GP’s estimate of time saving for staff together, is 1 hour/patient and year. 3.1. Security, Integrity and Technical Characteristics The solution is formed with several tiers of hardware and software. The patient authenticates himself using his civic registration number, a personal PIN and a One Time Password. The authentication server generates a new password every time the patient log on and is distributed to the patient’s mobile phone as an SMS. Moreover advanced proxy ﬁrewall technology is used to keep the communication and information safe.

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3.2. Learning Points The basic idea of Sustains III is very easy to understand. It’s simply a copy of Internet banking. Instead of an Internet Bank Account you have a Health Care account. But it has been easier for banks to exploit this concept. There are several reasons for that: The information in the bank world is better structured. The most active bank customers are in the most capable age. They can easily, and are willing, to pay for the service. The bank customers and the bank professionals are at almost the same “level”. None of them are considered as the typical “weak” part. The comparison between Health Care and Banking can be useful to understand what impact e-services in Banking or Health Care can have on both private economy and healthMany other parameters determine if an individual will be wealthy or healthy. But efﬁcient e-services will help the individual to make decisions when such can be made. It’s easier to see relations between incomes and expenditure, as well as between physical condition and way of living, when one is involved in the case. It’s also easier to express wishes, preferences and request information about present and past status to the professionals supporting one in any aspect. In other words, professionals making decisions on someone else’s behalf must of course act on known information. E-services can substantially improve quality of such decisions. But there is a necessity to improve systems such as Sustains III with structured ways of getting information from citizens. Now we are half way – trying to present functions that consumers of Health Care ﬁnd fruitful to use. Without these users we can do nothing. Another area we found important to further explore is the citizens’ role as coordinators and auditors of their own Health Care. But why should the patients and relatives bother about that? Is it not t the responsibility of the provider? While this may be the case, the processes will be more efﬁcient with committed resources that are present all the time and have both a second opinion and a real interest in the case. One can compare the situation when a parcel delivery company provides a “tracking number” to the customer. Why do they make all those efforts to keep the customers informed in details of the process of delivering a parcel across the Atlantic? There are of course a number of reasons. But what they achieve at the same time is two things which are not so obvious: First they avoid the customers calling and make inquiries about the case. Second they also get a “free” auditor. Someone who immediately calls if the delivery goes in wrong direction, get stuck for a long time or other indications of malfunctions: Increased quality with the help of the customer. Why shouldn’t the Health Care take advantage of such phenomena? Today such resources from relatives and patients have been underestimated in the business of Health Care. What are the strong points and the weakness of the project? Let’s start with some of the strong points: 1. Patient can now be a powerful resource in the Health Care. 2. Relatives, friend and neighbours now have a powerful tool in supporting the patient navigating in the “Jungle of Health Care”. 3. Patient and relatives will act as auditors and quality controllers of the process. 4. The degree of self service will be substantially eased. 5. Patients’ understanding of complex Health Care procedures will be more tangible. 6. The need for more patients’ enactment will increase when more specialists are involved. This system is an enabler for that.

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7. The perception of good quality is not necessarily the same for doctor and patient. By this service the latter opinion could be strengthen. 8. The service corresponds to modern customer centred philosophy. The weak points: 1. The project addresses the part of the population who can use this technology. However, the biggest part of “Health Care customers” we found were not having access. This is decreasing but will still exist and thereby those services can still be labelled “For Wealthy Only”. 2. The exploitation to other parts of Europe can ﬁnd an obstacle in lack of a national patients’ identiﬁer. 3. The cost of the service balanced against beneﬁts may be obvious, but very difﬁcult to measure. Should the users pay for the service? 4. Compared with Internet banking there is a problem of keeping up the users skill to use the service. That is because people use Internet banking 2-4 times a month while the average citizen is only sick once a year. Therefore the focus may be the group of elderly and people suffering from chronically diseases or “high consumers”.

4. Conclusions The basic idea of Sustains could best be understood using the concept of Internet banking as a model. Before Internet banking became a wide spread service, it was available only to the staff of the bank. In the same way, bank customers have currently access to their own bank accounts; patients can access their own medical record over the Internet. Whether the patient wants to read the doctors’ notes at home or need the same information at another doctor’s place when traveling, Sustains can be a useful tool. Being able to access the information in his medical record, the patient is likely to have better knowledge of his own condition and therefore have better chances to participate in the planning and treatment of the sickness. It also makes it easier for relatives of the patient to participate in the care without having to be present at every encounter with the health care. The comparison with the Internet banking can be used to better understand the impact that Sustains will have on the health care business. Just as the banks e-services alone can’t increase the economic wealth of their customers in any obvious ways, the e-health services will of course not increase the health of the patients. But availability of efﬁcient e-services will help individuals to make decisions when such can be made. The more one is involved in his case; the easier it is to see relations between the way of living and physical condition. It’s also easier for a patient, to express wishes, preferences and other information to professionals dealing with his health care. In other words, professionals making decisions on patients’ behalf must of course act on known information about patients’ preferences. E-services can substantially improve quality of such decisions. But there is a necessity to improve systems as Sustains III with structured ways of getting such preferences from citizens. In August 2003 an article was published in the front page of the biggest daily newspaper in Sweden (Dagens Nyheter, 18th of August 2003). It started an avalanche of reactions in the media and is still going on (November). Also legal actions against the project

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have been made from a governmental body. The overall reaction however, is that such an important service for Patient empowerment just can’t be stopped.

References [1] Landstingsförbundet. Alla kan vinn@ - e-relationer öppnar vården. Stockholm: Landstingsförbundet; 2002. Report No.: 2084. [2] Baker DB, Masys DR. PCASSO: a design for secure communication of personal health information via the internet. Int J Med Inf 1999;54(2):97-104. [3] Halamka JD, Osterland C, Safran C. CareWeb, a web-based medical record for an integrated health care delivery system. Int J Med Inf 1999;54(1):1-8. [4] Duncan RG, Shabot MM. Secure remote access to a clinical data repository using a wireless personal digital assistant (PDA). Proc AMIA Symp 2000:210-4. [5] Chan AT. WWW + smart card: towards a mobile health care management system. Int J Med Inf 2000;57(2-3):127-37.

Address for correspondence Benny Eklund, +460705 101306, [email protected]

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Advanced Technology Permits the Provision of Advanced Hospital Care in the Patients’ Homes Elias PAPAZISSIS Director of Hospital at Home Department, Hygeia Hospital, Greece Abstract. Improvements in disease management and the aging of populations in Western countries are the main factors that have resulted in a disquieting rise in demand for expensive hospital beds. The patient-centred and family-friendly concept “Hospital at Home” has recently appeared on the global scene of health services, promising to offer a solution. This type of service has proved to be very welcome to patients and those they live with. However, Hospital at Home schemes reported in the literature are organized only to provide improved primary care services, usually to patients who are discharged from hospital a few days early and for the rest of their treatment. These services are mainly provided by nurses who perform one or fewer home visits a day and the medical contribution, if any, is limited to telephone consultations when necessary. Whenever something unusual happens the patient is readmitted. Some Hospital at Home settings, which are characterized as “admission avoidance”, actually include only patients with conditions so stable that they might have stayed at home anyway, with some good primary care support. Yet Hospital at Home has much more to offer. Incorporated in the administrative structure of a hospital as real wards, manned with doctors, nurses and other health professionals on 24-hour duty in shifts and providing frequent –at least twice a day– regular home visits by doctors and nurses, Hospital at Home can reproduce real hospital conditions in the patients’ homes. Portable medical devices enable the performance of a wide range of examinations at home, while information and communication technology neutralizes distances and makes collaboration between the virtual team and other contributors feasible and effective. Almost any patient whose condition neither requires prompt surgical operation nor meets the criteria for admission to an intensive care unit can be safely hospitalised at home, provided that he is attended by a properly organized, properly equipped and highly alert Hospital at Home service.

Introduction From prehistoric times and for ages afterwards pain, injury, illness, and natural forces in general, so much exceeded human power that man practically surrendered himself to superstition. Therapeutic interventions were limited to palliative treatment, such as cold poultices on a febrile patient. Any other attempt at healing was desperately experimental and usually ineffective. Doctors were people who felt a real calling to relieve human suffering, both in body and mind, often at considerable self-sacriﬁce. And of course very

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often an evil incentive led some other people to call themselves “doctors”, to invent fake “therapeutic techniques” and maliciously beneﬁt from the suffering of their fellow men. Although Hippocrates and other brilliant ﬁgures did not effectively manage to dissolve the darkness in knowledge, the contribution of their wisdom to our civilization is an invaluable legacy. They gave the moral orientation by which today’s medical ethics are guided. In the last two centuries things changed dramatically. The nature of diseases started to be discovered one by one. Illnesses began to be attacked at their root and the light of science irreversibly replaced the darkness of ignorance. A major characteristic of the industrial revolution was the concentration of production in large units, which was the means to achieve massive productivity of goods. Medicine could not escape this process. The rapid development of technology and the substantial understanding of biology led to an increasingly sophisticated management of disease. We passed from the healers’ art to the industry of treatment. The diagnosis and treatment of disease increasingly demanded both the contribution of doctors of different specialities and the availability of expensive facilities. So the model that prevailed was the hospital. From prehistoric times man’s warmest shelter has always been his dwelling place, where his body and mind could relax. No matter if it was a cave or a hut, a vessel or an igloo, a peaceful house in a forest or an apartment in a city, man has always had a warm feeling of safety and protection at home. Home Care ﬁrst appeared at the dawn of the 20th century. The Home Care concept embodies the idea of relieving a person’s pain in the place that gives the greatest mental calm: the patient’s own home. Today home care is available in at least 63 countries and probably in the near future almost all nations of the world, both developed and developing, will have to provide increasing quantities and varieties of home care services. Most recently the increasing pressure for acute hospital beds [1] has given birth to a new type of home care, which is speciﬁcally deﬁned as the “provision of health care services to patients at home, who otherwise would have to be treated in hospital”. This type of home care, named “Hospital at Home” or “Hospital in the Home”, is the most advanced version of home care, aiming to provide a hospital setting in the home environment. The challenge is to achieve this shift of services from hospital to home, without depriving the patient of the undoubted beneﬁts of biotechnology and expertise found in the hospital environment.

1. Home Care in the World The system has its roots in the USA, which is the country with the longest tradition in home care provision. The ﬁrst associations appeared between 1885 and 1889, when home was the workplace for most nurses. [2,3] By the year 1905 455 visiting nurses were employed by 171 associations. Today there are as many as 20,215 home care organizations in the USA, providing home care to more than 7 million residents, services which cost over $38 billion every year! Although today most countries seek for randomised controlled trial evidence to decide whether they will support the development of home care, the Americans are so accustomed to the home care notion that they spend these huge amounts of money on home care provision without RCT evidence. [4] In January 2003 the Canadian Government committed itself to the 2003 First Ministers Accord on Health Care Renewal, in recognition of Canadians’ views, to provide a ﬁrst

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dollar coverage for a core set of fully portable acute home care services to be available by the year 2006. [5] In the UK 2.7 million contact hours of home care were provided to around 424,000 households, during a survey week in September 1999. [6] World Homecare and Hospice Organization (WHHO) made in 1995 an attempt to collect in one place information on what home care services were available in each country of the world. After soliciting 187 countries, 63 of them reported that some form of formal home care services was in current operation in their countries. Assistance to the disabled, nursing, health education, palliative treatment, social work, physiotherapy, rehabilitation, vaccinations, wound care, are some of the vast ﬁelds in which home care has its predominant role.

2. Hospital at Home. The International Scene and Present Innovations Increased life expectancy and the consequent aging of the population, along with the recent and ongoing improvements in disease management, have led to an increasing pressure for hospital beds in almost all countries. Any alternative that could relieve this pressure would obviously be very welcome. During the last few years the idea of providing care at home, so as to save some length of stay, has emerged and, being fascinating, promising and challenging, it has been realized in a few schemes. Although these practices are actually advanced Home Care services, they are usually called “Hospital at Home” or “Hospital in the Home”, to be discriminated and evaluated separately from more conventional home services. Most of the reported Hospital at Home settings are mainly oriented to early discharge of patients, previously treated in hospital and usually for the last few days of their treatment, when minimal interventions are required. [7] Some Hospital at Home are called “admission avoidance” or “total episode substitutions”. However these patients are initially evaluated in the emergency room of a hospital and usually hospitalized for one day. Furthermore only patients who have a deﬁnite diagnosis and whose conditions require very “light” support are judged to be eligible for Hospital at Home. In almost all of the cases care is offered only by nurses and in very few of them is there some contribution by general practitioners. There is no reported Hospital at Home in which hospital-like activities take place at home. In this chapter we shall describe how hospital conditions can be efﬁciently reproduced at home with proper administrative structures and assisted with the support of present and future technologies.

3. From Hospital to Home: The Evidence Several small randomized controlled trials (RCTs) have been carried out to evaluate Hospital at Home set up by hospitals, to early discharge patients most commonly with stroke, hip fracture, knee replacement, deep venous thrombosis, cellulitis and exacerbations of COPD. Parameters considered for evaluation were safety, cost effectiveness (better results at same cost) or cost efﬁciency (similar results at lower cost), patient and carer satisfaction. A few studies have examined the impact of Hospital at Home on prevention of

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hospital-related problems such as exacerbation of dementia, depression, bowel or urinary incontinence. Almost all authors agree that there is a higher degree of patient satisfaction in patients treated at home, than in hospital. However all reviewers agree that evidence is insufﬁcient to show the impact of Hospital at Home on slowing down the health care cost escalation and on management of hospital beds. Due to the variation of conditions managed, small size of the studies, variable degrees of care intensity and different methodologies, results are often contradictory.

4. What is a Hospital? The ﬁrst reported hospital was created by the Christian Orthodox Church in AD 300– 400. [8] A large variety of disparate places and institutions have been called hospitals since then. Hospitals in nunneries, mobile military hospitals on the battle-ﬁeld, asylums, psychiatric hospitals, sanatoriums and modern general tertiary hospitals. What is that speciﬁc element, which is common in everyone of them and without which an institution would not continue to be a hospital anymore? For example there are, or have been reported, hospitals without operating theaters, without intensive care units, without emergency departments and even without laboratories. Yet the element of short distances between patients, facilities, doctors and nurses has always been there and it is exactly that which characterizes a hospital and facilitates: 1. 2. 3. 4.

Teamwork Close observation of patients Smooth diagnostic and therapeutic ﬂow. Rapid intervention in case of life-threatening complications.

If we move a patient from a hospital to his or her own home, these distances become inevitably much longer. How can we overcome this barrier? In this chapter we shall describe how the application of an advanced Hospital at Home model, with the support of modern technology, can overcome, can neutralize the disadvantages of having a patient away from a hospital. In other words how we can make the inevitably long distances become virtually short. Let’s follow the elements of the hospital model one by one and examine the techniques and the structures with which we reproduce them in the Hospital at Home model.

5. The Proximity between Nurses and Patients In a hospital nurses are NEAR the patients. The beneﬁts deriving from this proximity are that nurses can easily perform regular ward rounds, to record patient’s vital signs, to monitor rates of solution infusion, to administer medication on time according to schedule and to hurry back to any patient, when something goes wrong. In the Hospital at Home model teams of nurses and assistants also perform every day as many regular home visits as required, to record vital signs, to monitor infusion rates and to administer medication on time via any route (IV, IM, PA, SC etc). They also remain on call for additional home visits, if required, as for example for implementation

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of a new care plan following the doctors’ instructions, or to correct the patency of an IV line when a problem is reported. Acquisition of vital signs and other biosignals such as ECG can be alternatively and additionally accessed from a distance, provided that they are continuously recorded with the use of bedside monitors. Nurses, doctors or other appropriate and authorized health professionals can have remote access to these data via telephonic or other connection (GSM, GPRS etc). This technology provides maximal and rapid information, without necessarily the physical encounter between nurses and patients. Telematic transmission of “heavy” information such as pictures and videos, which was very difﬁcult some years ago, is now obtainable in sufﬁciently good quality. Cameras that can be tele-controlled allow health professionals to monitor patients as from the bedside. However it should be stessed that patients’ rights to privacy have to be thoroughly addressed, respected and secured. Electronic IV pumps [9] are a good example of automation in patient’s treatment, which is abundantly available and widely used. They secure both constant infusion rates and automatic administration of medication at scheduled intervals, as they permit constant and intermittent infusion at once. Furthermore they provide security by giving alarm at any ﬂow obstruction or at any presence of air in the infusion line. The operation of such devices is easy to control from a distance. For safety reasons nursing personnel on call must stay alert, so as to rapidly access the patient, in any case of malfunction.

6. Patients’ Access to Major Facilities The diagnostic process often requires examinations such as computerized tomography (CT), Magnetic Resonance (MRI), Nuclear Medicine, Positron Emission Tomography (PET) etc. The decision to proceed to a new examination is not always predictable, but rationally based on clinical thought in the light of the latest acquired results of other examinations. On the other hand, for the patient’s safety and treatment’s effectiveness, the diagnostic process has to be completed as quickly as possible. Hence the beneﬁt of having a patient in a place where all these laboratories are established is more than obvious. Technological improvements in making the machines required for such examinations less bulky are amazing and ongoing, but still incapable of shifting the standard place of performance from hospital to home. Portable computerized tomographers are today in use by many hospitals. [10] They are mainly used in intensive care units for critically ill patients whose transportation is better avoided. They weigh not more than 450 kg, they can be easily transported on elevators and through corridors, and can pass through 90 cm doorways! [11] The expectation that portable CT scanners will be much lighter and that they will be easily carried from home to home in ordinary vehicles in the future is absolutely reasonable. However we should not expect that any of the above-mentioned facilities will be abundantly available in the home environment in the near future. Patients for long time ahead will inevitably have to be transferred to hospital for some examinations, but they may return to their homes as soon as a group of examinations is completed. Such a scheme to be beneﬁcial in terms of patients’ safety and satisfaction has to ensure: 1. Easy access to laboratories without time-consuming negotiations or waiting lists.

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2. Transportation of patients with minimal discomfort. 3. Rapid acquisition of results and prompt information to the attending doctors. The degree of achievement of any of these tasks is an indicator of good Hospital at Home performance, insofar as they reproduce in-hospital conditions. 7. The Era of Portable Devices As the development of micro-electronics permits the manufacture of more compact devices, the list of high-tech examinations which can be performed by portable equipment, becomes longer and longer. Portable X-ray units are nowadays sufﬁciently reliable. The use of digital cassettes provides extra quality and brings digital x-ray technology into the patients’ homes. Portable real time digital radioscopy with laptop connection is now commercially available for dentistry, [12,13] so it is expected to be soon available for medical examinations too. Encephalography, electromyography, sleep apnea study, and spirometry are some examples of examinations out of many which can be easily performed at home. Portable ultrasonography machines are getting impressively small, light and effectively compete with the capacity of the big units. However, ultrasonography is a highly counteractive examination requiring the “real-time” involvement of a highly experienced doctor. The reliability of the examination is directly dependent on the doctor’s expertise. Moving such an experienced doctor from home to home will reduce his productivity with concomitant increase of the examination cost and thus adversely inﬂuence cost-efﬁciency. Schemes in which general practitioners perform the u/s scanning and send videos and/or still images, in real time or not, to specialists for conﬁrmation of diagnoses have been evaluated in some small studies. [14] Until enough evidence is there to prove the sufﬁcient degree of validity in such practices and until standards are agreed and established, they cannot be recommended for clinical application at the present. Yet another amazing facility is already a reality: robotic remote control of ultrasound machines! [15,16] Although this sounds like something out of science ﬁction, it will be a part of everyday clinical practice, sooner than expected. Endoscopy of the alimentary tract is at almost the same stage of interactivity as ultrasonography is. Furthermore endoscopy requires extra skills, causes more discomfort and implies more risk to the patient than ultrasonography. On the other hand still endoscopic pictures are much more useful than still ultrasound images. So, provided that a general practitioner’s skills are sufﬁcient, telemedicine consultation with specialists may result in comparable results with conventional endoscopies. However the development of the most fascinating endoscopic capsule [17] is clear reassurance that new brilliant technology is on its way here to give us new convenient alternatives. We only have to wait for its arrival. 8. The Close Working Relationship between Doctors and Nurses In a hospital the patient’s unique care record is usually somewhere in the small physical space between his bed, the nurses’ station and doctors’ ofﬁce. Any examination result or

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report is immediately ﬁled in it. The nurses update it with the last measurements of vital signs, look for new doctor’s instructions and check the medication card, as soon as they administer a new dose. Doctors can easily access the ﬁle, they get the new information and write their instructions, which are promptly implemented by nurses. The ﬁle with the ongoing information, the instructions and the feedback from implementation of the instructions are quickly transferred between different persons. It is essential that these persons are physically very close to each other, otherwise this process gets very slow, with an inevitably adverse impact on the patient’s safety. In the Hospital at Home setting involved persons who need to exchange information may be at any time located in different places in a usually large geographic area. Thus a traditional paper patient-ﬁle would be of little value and make the system so inﬂexible that the eligibility criteria of patients to be treated would have to be limited to very simple cases. An advanced Hospital at Home clinic can hardly be efﬁcient enough to avoid admission of acutely ill patients, without a powerful patient management software application. The ﬁle is “virtual” so as to counterbalance the burden of distances. The “virtual” ﬁle enables handling of the same patient’s record by different care workers at different places simultaneously. Data are promptly uploaded to the server from anywhere, so whenever the patient’s ﬁle is re-downloaded to any laptop it has been updated with the new lab results, vital signs and all the other doctors’ and nurses’ remarks. Doctors get quick information from nurses and nurses rapidly undertake and follow doctors’ instructions for implementation.

9. Doctors NEAR their Patients Doctors in a hospital visit the patient regularly on at least a daily basis, to closely follow his condition. Doctors of different specialities are often asked to visit the patient and contribute with their consultations to the diagnosis and treatment. In the advanced Hospital at Home medical teams perform regular “ward rounds” once or twice a day, as they would do in a hospital, by performing home visits. Telemedicine facilities such as transmission of pictures, [18] videos, [19] sounds from electronic stethoscopes [20] and bio signals and on the other hand a complete multimedia medical record greatly reduce the necessity of physical bedside presence of other specialists, who can contribute with their excellent expertise from a distance. [21] The most important of all, is that doctors in a hospital are there near the patients, to act rapidly, in case a life-threatening condition occurs. In any Hospital at Home setting, a lot of attention has to be paid, in order to reproduce in-hospital conditions in such adverse situations. Medical and nursing teams have to be on a “round the clock” alertness, to quickly access the patient, and they also have to be trained, experienced and properly equipped, to be able to act at the site of the crisis and provide aid, exactly as they would do in the emergency department of a hospital. Whenever the patient’s safety requires, bedside nurses in shifts on a 24-hour basis, in continuous communication with the doctors, can act with therapeutic life-saving interventions, within seconds after the occurrence of a complication, or discontinue infusions of speciﬁc medications as soon as a critical condition is controlled. Such a structure makes conditions at home resemble those in a high dependency care unit. [22]

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If the complication requires admission to hospital, airway patency, oxygen supply, venous canulation, ﬂuid replacement and prompt initiation of standard treatment have always to be secured prior to the transportation, so as to be done with the maximum safety.

10. Eligibility of Patients. Selection Criteria Some Hospital at Home studies adopt very narrow eligibility criteria, which exclude for example any patient who requires intravenous therapy, [23] whereas some others dare include more acutely ill patients. [24] Safety is closely related to the efﬁciency of the supporting mechanism. Thus standards on inclusion and exclusion criteria for Hospital at Home, have to thoroughly address the following parameters: 1. Nature of the disease to be managed, co-morbidities and the risk of life-threatening unforeseen complications. 2. Intensity of care (degree of monitoring) 3. Efﬁciency of the service (skills of doctors and nurses, equipment). 4. Response of the service (maximum time from the report of a complication to access the patient). All possible adverse situations such as trafﬁc hold-ups have to be considered. Well organized Hospital at Home units with high capacity regarding the above keyissues can provide complete substitution for hospitalisation in a wide range of both acute and subacute conditions.

11. Is Hospital at Home Cost-Effective? Many attempts have been made to prove the cost-effectiveness or the cost-efﬁciency of hospital at home. However there are many variables inﬂuencing the results such as: 1. Conditions managed at home are very variable; they require different types of intervention (IV infusions, SC injections, inhalations, physiotherapy) and different quantities of resources. 2. Substitution of the ﬁnal (less costly) days of hospitalisation, or the whole episode. 3. The total length of stay may be longer in some mixed schemes, than it would be with in-hospital treatment alone. 4. Cost of in-hospital treatment is difﬁcult to evaluate. Most of the studies take into account the price which the insurance has to pay but not the real costs. 5. Insidious costs (involvement of informal carers) [25] and unapparent cost savings (helping family members not to decrease their professional productivity because of their relative’s illness) were not addressed. Furthermore the economic signiﬁcance of the social beneﬁts (convenience of the family) has never been. These barriers have led to confusing and contradictory results of economic evaluation of the system, with some studies concluding that Hospital at Home is less costly than in-hospital care [26] and others not. [27]

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Complete and careful addressing of all cost-inﬂuencing parameters is imperative. Any bias in economic evaluation has to be eliminated in future studies. Moreover hospital at home should not be regarded as a standard concept, leading to false comparisons between unlike services. An attempt at classiﬁcation of comparable Hospital at Home schemes into categories would be very helpful.

Go ahead or not? It is a global experience that health professionals are usually resistant to adopting new technology, particularly when technology is not directly practice-oriented but aims to facilitate work, to increase productivity and to ensure safety, as information and communication technology does. On the other hand preventable medical errors have proved to be a leading cause of death. In the US alone deaths due to avoidable adverse medical events (at least 44,000 every year and possibly as many as 98,000) exceed the deaths attributable to motor vehicle accidents (43,458), breast cancer (42,297) or AIDS (16,516)! [28] Information and communication technology has been proved able to prevent most of these errors [29], saving thousands of lives. Although safety can stand alone as a reason for tuning into the technological wavelength of the present and the future, safety is not the only beneﬁt. The World is changing, so people, attitudes and styles of life do. Technology opens horizons. Man has the choice to ﬂy over them. And he does. It is a historical ironlaw that has never failed yet. Once technology has opened the way to safe, advanced hospital treatment in the home environment and people are happy with the idea, nobody can stop its evolution. It will deﬁnitely take place sooner or later.

References [1] Hobbs R. Rising emergency admissions. BMJ 1995; 310:207-208. [2] Buhler-Wilkerson K. Home care the american way: an historical analysis. Home Health Services Quarterly 12 (1991): 5-18. [3] Buhler-Wilkerson K. The Call to the nurse: our history from 1893 to 1943. vnsny.com. Available from: URL:http://www.vnsny.org/mh_about_hist_more.html. Accessed September 5, 2003. [4] Montalto. Hospital in the home: take the evidence and run. MJA 1999; 170: 148-149. [5] Canadian Government. 2003 First Ministers’ Accord on Health Renewal. [6] Kilbey T. Community Care Statistics 1999. Home help/home care services. Department of Health England. [7] Staley C. Patient selection and assessment guidelines. VCACI Newsl [serial online] 2000 April;4(2):p.8. Available from: URL: http://aca.health.vic.gov.au/documents/16042000.pdf. Accessed September 5, 2003. [8] Montana Ofﬁce of Rural Health, Montana Area Health Education Centre, Montana State University-Bozeman. Rural Community-Based Home Health Care and Support Services - A White Paper. 2001. [9] Gilbert D, Dworkin R, Raber S, Leggett J. Outpatient parenteral antimicrobial-drug therapy. N Eng J Med 1997; 337:829-839. [10] Laux A, Rogalla P, Kern H, Hamm B. Use of a portable CT scanner for monitoring ventilated patients in an intensive care unit. Rofo Fortschr Geb Rontgenstr Neuen Bildgeb Vergahr 2001; 173(7):591-594.

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[11] Mirvis SE. Mobile CT in a major trauma centre. Medicamundi; 41(2). [12] Price C, Ergul N. A comparison of a ﬁlm-based and a direct digital dental radiographic system using a proximal caries model. Dentomaxillofac Radiol 1997; 26(1):45-52. [13] Wakoh M, Kuroyanagi K. Digital imaging modalities for dental practice. Bull Tokyo Dent Coll 2001; 42(1):1-14. [14] Hussain P, Melville D, Mannings R et al. Evaluation of a training and diagnostic ultrasound service for general practitioners using narrowband ISDN. J Telemed Telecare 1999; 5(1):9599. [15] Masuda K, Kimura E, Tateishi N, Ishihara K. Three dimensional motion mechanism of ultrasound probe and its application for tele-echography system. Proc. international conference for the IEEE intelligent robots and systems (IROS); 2001; Maui, HI: p. 1112-1116. [16] Yao W, Istepanian R. 3G mobile communications for wireless tele-echography robotic system; EU supported project Mobile Tele-echography using an Ultra-Light robot (OTELO); Contract no:EST-2001-32516. [17] Fritscher-Ravens A, Swain CP. The Wireless Capsule: New Light in the Darkness. Dig Dis 2002; 20:127-133. [18] Lowitt M, Kessler II, Kauffman C, Hooper F, Siegel E, Burnett J. Teledermatology and inperson examinations: a comparison of patient and physician perceptions and diagnostic agreement. Arch Dermatol 1998; 134(4):471-6. [19] Hui R, Zhu B, Huang R, Allen C, Demarest K, Richards D. Subcarrier multiplexing for highspeed optical transmission. J Lightwave Technol 2002; 20(3):417-427. [20] Bratton R, Cody C. Telemedicine applications in primary care: a geriatric patient pilot project. Mayo Clin Proc 2000; 75:365-368. [21] Celi LA, Hassan E, Marquardt C, Breslow M, Rosenfeld B. The eICU: It’s not just telemedicine. Crit Care Med 2001; 29[Suppl.]:N183-N189. [22] Rosenfeld BA, Dorman T, Breslow MJ, Pronovost P, Jenckes M, Zhang N, Anderson G, Rubin H. Intensive care unit telemedicine: alternate paradigm for providing continuous intensivist care. Crit Care Med 2000 Dec; 28(12):3945-3946. [23] Murphy NM, Brune CC, O’Neill SJ, McElvanely NG, Costello W Richard. An outreach programme for patients with an exacerbation of chronic obstructive pulmonary disease. IMJ [serial online] 2003; 96(5):[7 screens]. Available from: URL:http://www.imj.ie/news_detail.php?nNewsId=2656&nVolId=102. Accessed September 5, 2003. [24] Caplan G, Ward J, Brennan J, Coconis J, Board N, Brown A. Hospital in the home: a randomised controlled trial. MJA 1999; 170: 156-160. [25] Soderstrom L, Tousignant P, Kaufman T. The health and cost effects of substituting home care for inpatient acute care: a review of the evidence. CMAJ 1999; 160:1151-55. [26] Jones J, Wilson A, Parker H, Wynn, Jagger C, Spiers N, Parker G. Economic evaluation of hospital at home versus hospital care: cost minimisation analysis of data from randomised controlled trial. BMJ 1999; 319:1547-1550. [27] Shepperd S, Iliffe S. Hospital at home versus in-patient hospital care (Cochrane Review). In: The Cochrane Library, Issue 1 2003. Oxford: Update Software. [28] Kohn L, Corrigan J, Donaldson. To Err is Human: building a safer health system. Washington: The National Academies Press; 2000. p. 26-48. [29] Bates D, Gawande A. Improving safety with information technology. N Eng J Med 2003; 348:2526-34.

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Boario Home Care Project S. SCALVINI, M. VOLTERRANI, A. GIORDANO Cardiology Dpt. Fondazione S. Maugeri IRCCS- Gussago BS F. GLISENTI HTN S.p.A.

The seemingly intransigent problems of increasing cost and inequitable access to quality health care, coupled with the merger of the information technology and health services gave rise to the ﬁeld of telemedicine. In broad terms, since its inception in 1998 the history of Boario Home Care Project can be characterized as consisting of three major phases. Each phase has been closely linked to signiﬁcant advances in Information Technology and Telecommunication. In the ﬁrst phase the project was to realize a telematic network for the General Practitioners in a mountain territory particularly hard to reach (Vallecamonica, a valley in the PreAlps) and to give them the possibility, over a 24 hour basis, of monitoring cardiovascular diseases of their patients using a mobile electrocardiographer. The recorded ECG could be sent by a ﬁxed and mobile GSM telephone to the receiving station in Boario Terme where a Cardiologist reported the trace, offering an interactive teleconsultation and prescribed therapy, if necessary. The Cardiologist was “physically” present and worked directly at a workstation in the call center. In the second phase the project was extended to the regional and then national territory and the number of enrolled GPs increased. At the same time a new way of disease management for chronic cardiac patients started. The vast amount of work generated by the call center obliged us to imagine the following “telework” ﬂow: the call center operator received the call, asked the patient’s data and received the ECG. Afterwards the user was put through to the Cardiologist who received the trace at home on his PC by FAX, reported the trace and provided teleconsultation. In the third phase, that is nowadays, the structure of the Service Center has been implemented with new broad band technologies (HDLS). The nerve center is now equipped with 4 Hewlett Packard servers (with back-up hardware to avoid activity interruptions), a WEB server for Internet connection, ﬁrewall for data security, a computerized call-center, 15 LAN workstations with 4 printers (over a network) and a central fax-maker. The system information ﬂow is the following: a phone call arrives (from General Practitioners, patients, Health Centers, Rest Homes, etc.) and the user is automatically identiﬁed through the stored telephone number or his identity code. Then the phone call is addressed to a free operator who recalls the patient’s data stored in the enrolment phase and activates the “new call procedure”, inserting new data relative to this call (a control one or a call made in presence of symptoms). At this point the trace can be received, the user is put through to the Cardiologist or the Nurse on duty (a three actors call takes place)

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who are at home and are connected to the central data base through Internet. The Specialist or the Nurse examine the stored informatic clinical report and compare the trace with the baseline one, they collect information about patient’s history and clinical symptoms, providing teleconsultation and/or nursing triage. At the end the reported ECG trace is sent to the user by e-mail or telefax and the data are stored, transferred to the web-server and are available “on the net” in the informatic clinical report, in an anonymous way and in cryptography for password owners only. An innovative telework model has been adopted for the professional ﬁgures involved (the Specialists and the Nurses) providing for a dedicated telephone line, a personal computer connected to the central system through the Internet, “always on” ADSL and data protection system (VPN). In this way the remote personal computer works in terminal emulation to prevent the data stored in the central server from being transferred on local disk or printed. Four different types of services are now available:

1. General practitioners 1200 General Practitioners (GPs) received a portable 12 leads electrocardiographer which can be interfaced with a ﬁxed or mobile telephone and transfer the recorded ECG trace to the receiving station where a cardiologist reports the trace and offers a teleconsultation. Up to today the GPs asked for a teleconsultation for 52834 patients: 35 cardiologists are involved. The analysis of a sample of 13177 patients showed that teleconsultation solved the GPs’ problems for 10606 patients (80.4%), in 5% of cases the patient were addressed to the Emergency Department and in 14.7% of cases a request for further diagnostic test was made [1,2]. The diagnostic accuracy of the service (as for the Emergency Department referral) [3] was tested on a sample of 3456 patients and was of 94.5%, showing the substantial diagnostic value of the Service. The same accuracy was tested for the chest pain symptom and the result was that the telecardiology service showed a sensitivity of 97,4%, a speciﬁcity of 89,5 % and a diagnostic accuracy of 86,95 versus ED admission for chest pain [4]. Moreover the potential reduction of costs for the National Health Service through a telecardiology service has been estimated. In a group of 891 patients there was a reduction of 47% of Emergency Department referral and of 95% of the cardiologic consultations in comparison with the normal procedure followed by GPs [5]. The same potential reduction of costs was tested in a subgroup of 311 elderly patients: there was a 37% reduction in referrals to the Emergency departments and a 94% reduction in the number of requests for cardiological consultations [6]. The good results, even if they are preliminary, must be attributed to the effective teleconsultation which takes place after the ECG transmission, between two professional ﬁgures, an experienced cardiologist and the GP who knows his patients very well; this aspect conﬁrms the impression of the reciprocal reliance and compliance of GPs and specialists in managing problems and possibly in following diagnostic and therapeutic common protocols. Improving this professional relationship, telecardiology can aid the appropriateness of hospital admissions and referrals to the Emergency Department, of diagnostic tests demands and of chronic disease home management [7].

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2. Chronic patients Chronic cardiac diseases such as chronic heart failure proﬁt by multidisciplinary approaches, able to reduce hospitalization and improve the patient’s quality of life at the same time and to reduce costs for National Health Service. Home Telenursing is an integrated approach which must involve the patient, his family the General Practitioner (GP) and Specialized Cardiac Centers. The physiologic data and biologic signals transmission gives objective data which may show the need of an intervention of a physician or a nurse; the possibility of real time transmission of these objective data by telephone in association with subjective data given by the patient allow telemedicine to become a new and unique approach to the problem [8]. 150 patients were given a device which was able to record a 1 lead trace; the trace could be transmitted to the Service Center where especially trained and experienced nurses were available for the evaluation of the trace and for an interactive teleconsultation about the patient’s state of health, symptoms, weight, diuresis and therapy. Teleconsultation provided two different possibilities: scheduled appointments (Telemonitoring), every week for patients with severe heart failure (III NYHA class) or every ﬁfteen days for patients with moderate heart failure (II NYHA class) and calls in the presence of symptoms (Teleassistance), in which the patients could call the Service center 24 hours a day all year round and talk with the nurse. The GP and the cardiologist of the reference Hospital were informed about the patient’s situation and could intervene at any moment about diagnostic and therapy arrangements. This group of patients was compared with a group of 150 patients with an usual follow-up. The preliminary results of the project are characterized by a signiﬁcant reduction in instabilization (22.9% in the group followed with telemedicine in comparison with 55.4% of the group with normal follow-up) and in hospitalizations (17.6% vs. 36.5%) [9].

3. Telediagnosis Palpitation is a common symptom that sometimes results from a substantial cardiac arrhythmia. Establishing the cause of palpitations may be difﬁcult because historical clues are not always accurate. A 24-hour Holter monitor is usually used, but the yield of this instrument is low in patients whose symptoms occur infrequently. Another instrument used to study palpitations is a transtelephonic event recorder. This hand-held device was given to patients and they could apply it to the chest when the symptoms occurred. The patient pressed a button to record about 30 record of cardiac rhythm, which was stored in the memory of the device. The recording was later transmitted over the telephone for printing and interpretation to a call-center working 24 hours a day. Here a nurse compared the trace with the baseline one, checked the pt’s symptoms, and decided to end the telephone call or, in presence of major arrhythmia, to request the cardiologist’s intervention. 310 pts were randomly assigned to receive an event monitor (ER) or a 24hour Holter monitoring. ER were used for 7 days or until two recordings were obtained while symptoms occurred. The percentage of patients in whom Event recorder was able to record the ECG trace during palpitations was 76.8% in comparison with the Holter monitoring in which the percentage was 47.8% [10]. In conclusion, more patients reach a clear diagnosis in real time when use ER in comparison with Holter for palpitation. For

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this reason Event Recorder should replace Holter monitoring for this purpose whenever possible.

4. Call center service for hospitals Terminals have been implemented in University and public hospitals, functionally linked with the Service Center, conﬁgured to share the application program interface of the Central Station with “on site/on line” license. After hospital discharge the patients with cardiac diseases (chronic heart failure or arrhythmia) receive a telecardiology device and they can contact their cardiac division with a telephone call (the user’s telephone number is automatically identiﬁed); the operator recalls the stored patient’s data, view of them on the monitor an activates the “new call procedure” during which he inserts new data relative to this call (a control one or a call made in presence of symptoms). The patient can now transmit his biological signals (as ECG) and he is automatically connected with the Nurse or the Cardiologist of their own Cardiological Division who provide teleconsultation and triage activity (for example comparison of the ECG with the previous ones) with updating of informatic clinical report. At the end of all the procedures, the data are stored, transferred to the web-server and available on the net only for password owners The Service Center provides the technological and organizational support, while health activity is managed by the Cardiologists and the Nurses of the hospital. Now the Boario Home Care Project is ﬁve years old and it has demonstrated its value as for increased access to care, quality of care and reduction of costs for the National Health Service. Another main characteristic of the project is that it can easily be transferred to another context with different accessibility and quality of local services. In conclusion, Boario Home Care project has reached its maturity and many results even if we can consider them preliminary; in fact in the ﬁeld of Telemedicine, although claims about the utility and the efﬁcacy of new telecommunication systems have been widely made, these are not founded on strong evidence. Our research has shown some deﬁciencies in the design and they are often not controlled. Trying to solve these problems we have planned two controlled studies in cooperation with Italian Health Ministry, hoping that these new results will be able to give some answers to the main open questions in the ﬁeld of Telemedicine.

References [1] S. Scalvini, E. Zanelli, D. Domenighini, G. Massarelli, P. Zampini, A. Giordano, F. Glisenti, on behalf of the Boario Home-Care Investigators. Telecardiology community: a new approach to take care of cardiac patients. Cardiologia 1999; 44 (10): 921-924. [2] S. Scalvini, E. Zanelli, M. Gritti, R. Pollina, A. Giordano, F. Glisenti, a nome dei ricercatori del “Boario Home-Care”. Appropriatezza dell’invio in pronto soccorso mediante un servizio di telecardiologia sul territorio. Italian Heart Journal Suppl. 2000; 1 (7): 905-909. [3] S.Scalvini, E. Zanelli, M. Volterrani, M. Castorina, A. Giordano, F. Glisenti a nome dei Ricercatori “Boario Home-Care”. Riduzione potenziale dei costi per il servizio sanitario nazionale mediante un servizio di telecardiologia dedicato ai medici di medicina generale. Italian Heart Journal Suppl. 2001; 2 (10): 1091-1097. [4] S. Scalvini, A. Giordano, F. Glisenti. Telecardiologia: una nuova modalità per gestire il territorio. Monaldi Archives for chest disease; sept. 2002; 58:2, 132-134.

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[5] S. Scalvini, A. Giordano. L’intervento multidisciplinare nei pazienti con scompenso cardiaco cronico: il ruolo della Telemedicina. Monaldi Archives for chest disease; dec. 2002;58:3, 252-255. [6] S. Scalvini, E. Zanelli, M. Gritti, P. Gazzaniga, R. Pollina, A. Giordano, F. Glisenti. Telemedicine: utility for care and monitoring in ischemic cardiac disease. Computers in Cardiology 1999; vol.26: 409-412 [7] S. Scalvini, E. Zanelli. Telecardiology : a new support for general practitioners in the management of elderly patients. Age and ageing 2002 ; vol. 31, number 2 (March 2002): 15 S. [8] Scalvini, E. Zanelli, C. Conti, M. Volterrani, R. Pollina, A. Giordano and F. Glisenti, for the Boario Home Care Investigators. Assessment of prehospital chest pain using telecardiology. Journal of Telemedicine and Telecare 2002 ; 8, number 4 : 231-236. [9] S. Scalvini, E. Zanelli, M. Volterrani, O.Buscaya, D.Domenighini, A. Giordano. Effect of a home based telecardiology on chronic heart failure outcomes: a case control pilot study. ESC Congress 2002, 31 August-4 September 2002 Berlin, Germany. [10] S. Scalvini, G. Martinelli, E. Zanelli, M. Volterrani, A. Giordano, F. Glisenti. Event recorder transtelefonico per il monitoraggio del cardiopalmo accessionale. XXXIV Congresso ANMCO, 31 Maggio-4 Giugno 2003 Firenze, Italia.

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User Perspective of DITIS: Virtual Collaborative Teams for Home-Healthcare Barbara PITSILLIDES Cyprus Association of Cancer Patients and Friends (PASYKAF) Andreas PITSILLIDES ∗ , George SAMARAS, Panayiotis ANDREOU, Dimosthenis GEORGIADIS University of Cyprus Eleni CHRISTODOULOU NetU Consultants Ltd Niki PANTELI University of Bath Abstract. DITIS supports home-care by offering wireless health care services for chronic illnesses. The main service is the dynamic creation, management and coordination of virtual collaborative healthcare teams for the continuous treatment of the patient at home, independently of the physical location of the team’s members (or the patient). For each patient a ﬂexible (dynamic) virtual medical team is provided, made up from visiting home-care nurses, doctors, and other health care professionals, responsible for each case. This virtual team is able to provide dedicated, personalized and private service to the home residing patient on a need based and timely fashion, under the direction of the treating specialist, without the necessity to move the patient from his home, thus making better use of the scarce and expensive medical professionals and scarce hospital beds, irrespective of geographic or organisational barriers. DITIS uses a number of state of the art technologies which are seamlessly put together, such as collaboration and personalization via mobile agents, access to medical data from anywhere and any time via a variety of mobile devices and a variety of protocols (i.e., WAP, HTML) and continuous connectivity via new communication technologies such as ADSL and GPRS, and soon UMTS. All the technologies are selected for platform independence.

1. Introduction Recent trends in the provision of health care services are toward a more results-oriented, integrated and accountable health system that delivers the right services, to the right people, at the most appropriate time, in the most cost-effective manner. The shift * Andreas Pitsillides, Department of Computer Science, University of Cyprus, Kallipoleos 75, P.O. Box 20537, CY1678 Nicosia, CYPRUS, Email: [email protected] Ditis web site: http://www.ditis.cs.ucy.ac.cy

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from facility-based care to home-based care is pressing, as well as the shift to evidence based medicine. Furthermore, technological advances are enabling a greater shift from institutional services to community-based services, such as home-care. Given the paradigm shift described above, the DITIS project was initiated in 1999, to support the activities of the home healthcare service of the Cyprus Association of Cancer Patients and Friends (PASYKAF). DITIS goal is to deliver a product that can improve the quality of the citizen’s life. Contrary to today’s health processing structure which is, in all practical terms facility-based care, this project aims to shift the focus onto home-based care, where everything is moving around the patient, supported by a team of healthcare professionals. Given that the team cannot be by the side of the patient at all times, DITIS developed a collaborative software system to support dynamic virtual health care teams, customised for the differing needs of each patient, at different times. The virtual healthcare team is supported in its provision of dedicated, personalized and private service to the home residing patient on a need based and timely fashion, under the direction of the treating specialist. Thus it is expected that chronic and severe patients, such as cancer patients, can enjoy ‘optimum’ health service in the comfort of their home (i.e. a focus on wellness), feeling safe and secure that in case of a change in their condition the health care team will be (virtually) present to support them. The present users of the system include the Health-Care professionals treating cancer patients (Home-Care nurse, Oncologist, Treating doctor, Psychologist, Physiotherapist, Social worker etc. . .), and the PASYKAF administration. It is expected that the system will be extended to other paramedical professionals, as for example the Pharmacist and the Cancer Registry, currently located at the Ministry of Health. Furthermore, the system can be adapted to cater for other home health care needs, as for example cardiac, renal or diabetic patients. DITIS deploys a novel networked system for Tele-collaboration in the area of patient care at the home by a virtual team of medical and paramedical professionals, implemented using existing networking and computing components. (The novelty of the system and competing approaches are brieﬂy discussed in [1].) It was originally developed with a view to address the difﬁculties of communication and continuity of care between the home health care multidisciplinary team (PASYKAF) and between the team and the oncologist often over 100km away. DITIS has through its database and possibility of access via mobile or wire line computers offered much more than improved communication. Its ﬂexibility of communication and access to the patient’s history and daily record at all times, anywhere (home, outpatients or in the event of an emergency hospital admission), has offered the team an overall assessment and history of each symptom. DITIS has thus offered improved quality of life to the patient, for example by offering the nurse’s the possibility of immediate authorisation to change prescription via mobile devices and the oncologist the possibility of assessment and symptom control without having to see the patient. It has also offered the home care service the opportunity to plan future services and lobby for funding by offering audit, statistics, and performance evaluation and with these in place, the possibility for research. The DITIS system was initially deployed in the district of Larnaca, with over 350 home visits recorded in August 2003 for 63 patients. The initial results indicated the usefulness of the system, as well as highlighted practical, at times frustrating, problems. DITIS is currently being extended to island-wide implementation to support the PASYKAF homecare service.

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2. Justiﬁcation of needs and aims of DITIS The current context of health and health care is characterized by change and transition associated with health care system reform and restructuring [2,3]. Restructuring initiatives are intended to develop a more results-oriented, integrated and accountable health system that delivers the right services, to the right people, at the most appropriate time, in the right place, in the most cost-effective manner. The aim is to enhance the health quality of populations, by better balancing health promotion and disease prevention, community-based and institutional services. Further technological advances potentially enable a greater shift from institutional services to community-based services due to improved communication and efﬁciency. In the context of home care, home care professionals visit patients at home. Traditionally, the team of professionals was (loosely) coordinated by weekly meetings, or in case of some urgent event information was exchanged by telephone calls, or face-to-face meetings. Often the same information is requested from the patient, so as each professional can build their own medical and psychosocial history and treatment notes (handwritten). These handwritten notes were ﬁled at the PASYKAF ofﬁces, once the healthcare professional returned to the ofﬁce. On a scheduled visit, the ﬁle had to be removed from the ofﬁce and taken with the health-care professional to the patients home. This was inﬂexible, as there was no possibility of access by another health-care professional at the same time After hours on call professionals had to make a special visit to the ofﬁce to collect the patient ﬁle (even if there was no other business with the ofﬁce). For a patient visit to the hospital, especially in emergency, there was no possibility of immediate access to the patient ﬁle from the attending home care nurse. Therefore there was limited possibility for continuity of care from home based to institutional care. As with every manual system, there was limited possibility for audits and statistics, research was difﬁcult, evidence-based medicine was not supported, dynamic coordination of the team was almost impossible, and communication overheads were very high and extremely costly in human and monetary terms. DITIS is aimed to address these problems in the provision of home-care services by a team of professionals. Generally, given the limitations of the existing home-care delivery models, the need for improved ICT supported practices emerged. Even though the context of health reform may vary across countries, major objectives are similar and include: ◦ a move towards people-centred services; ◦ a commitment to healthy public policy and a desire to improve the health status and quality of life of individuals and communities; ◦ increased emphasis on knowledge/evidence-based decision making and efﬁciency and effectiveness in service delivery; ◦ a shift from facility-based health services and a focus on illness, to communitybased health services and a focus on wellness; ◦ the integration of agencies, programs and services to achieve a seamless continuum of health and health-related services; and ◦ greater community involvement in priority setting and decision-making. DITIS aims to support the above healthcare reform objectives. We focus our analysis on home health care of cancer patients, but expect our results to be applicable to home healthcare in general as well as cross cultural and cross border interoperability. Thus

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through DITIS we expect to assist in the delivery of better home-care, by offering the health-care team services that are aimed in achieving a seamless continuum of health and health-related services, despite the structural problems of home-care, as compared to facility based care.

3. Identiﬁcation of the healthcare team, their roles and collaboration scenarios The healthcare team includes oncologists who are based in the oncology centre, treating doctors who are usually located in the community, specialist home care nurses who visit the patient regularly at home, and a number of other professionals called in as the demand arises, typically physiotherapists, psychologists, and social workers (see Figure 1). The home care nurses spend most of the time with the patient, and thus the analysis has focused on them and their interactions with the rest of the healthcare team. Furthermore, nurses are the ones who form the teams as and when they are needed. Such virtual health care teams promise ﬂexibility, responsiveness and new levels of collaboration. The nurse plays a central role in the home-care environment. The nurse will judge whether there is a need for a doctor or any other member of the caring team to visit the patient or whether to provide teleconsultation at the point of care. Clearly, the size of the team may vary depending on the nature of the enquiry. The nurse may have a virtual meeting with other nurses to check on routine enquiries such as keeping appointments. On another instance, the nurse may simply need to call the psychologist for consultation on the emotional state of the patient. For more complex situations, such as a sudden deterioration of a patient’s health the nurse may decide to have a more interactive teleconsultation with text messages, emails and telephone conversations with different medical experts. As the discussion above indicates, e-health teams may consist of a diverse group of people These teams are project or task-based, and need to be able to reorganise, dissolve, and select individuals with speciﬁc competencies according to need. In such virtual teams, where timely, effective and quality patient management care are the expected outcomes, high levels of interactivity often need to be developed quickly and it is important that they last throughout the short duration of the task life-cycle. Since these teams are often set up at the point of care, they are seen to have a ﬂuid character as a result of the con-

Figure 1. Patient centric home health care.

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stant emergence of contingencies that require ad hoc and pragmatic responses [4]. Even though interactivity is often presented as a key characteristic of a computer-mediated communication system, the emphasis is often on the computer-human interaction rather than on human-to-human computer-mediated interaction and trust [5]. The latter is particularly important since virtual teams are effective not only because of technological advancements but also and most importantly because individuals are able to interact and thus constructively engage in knowledge sharing and creation in the increasingly emergent virtual work environments. In particular, we focus on interactivity among the key actors in medical virtual teams. In such virtual teams, where effective and quality patient management care are the expected outcomes, high levels of interactivity often need to be developed quickly and it is important that they last throughout the short duration of the interaction. During the last few years there is an increasing volume of literature on virtual organisations and virtual teams [5–9]. This body of research generally agrees that virtual teams consist of a collection of geographically dispersed individuals who work on a joint project or common tasks and communicate electronically. 3.1. DITIS Modelling Several scenarios were identiﬁed and analysed in order to implement the collaboration system. The UML (Uniﬁed Modeling Language) has been used to identify roles and analyse and formalise collaboration scenario and tasks between virtual healthcare team members. Using results of the analysis the collaborative system software is developed [10]. Some Common Scenarios include: Referrals, e.g. of a new patient to homecare, to other professionals, and for First home-care-visit; Management of Home-care virtual team, e.g. creation/addition of members and communication with virtual team members; Community based tasks, such as change of prescription, bloods taken, and Chemotherapy; and Continuity of care, e.g. in outpatients, for patients admitted to a hospital, and for staff members on call. To illustrate the process we present a simpliﬁed UML class Collaboration Diagram in Figure 2 for the admission of a newly referred patient. As described above, the building of a virtual team around a patient will normally commence with the arrival of a referral form for a new patient. Once the primary homecare is assigned, the virtual team can be progressive and dynamically created, following the evolving needs. UML sequence diagrams were employed to analyse and design the virtual team service offered by DITIS.

4. System design DITIS is an Internet (web) based Group Collaboration system with ﬁxed and GSM/GPRS mobile connectivity. It employs Mobile Agents, Web Databases with Java Database Connectivity, and web based database for storage and processing of information, including Electronic Medical Record (EMR) pertinent to cancer patients, in accordance with International standards, software for collaborative work, intelligent interface for uniform access to the common database and the Group Collaboration software from both ﬁxed and mobile computing units. DITIS also supports the integration of new technologies in Telemedicine and the home care service for cancer patients through the use of Mo-

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Figure 2. Simpliﬁed Collaboration Diagram for the admission of a newly referred patient, expressed as a UML diagram.

bile Computing Units (e.g. Tablet PC, Pocket PC 2002, Handheld PCs, Smart Phones, PDAs). In the context of DITIS, a number of research and development issues were addressed [1], including: Requirements analysis, Infrastructure development, Design of EMR, Design of collaborative platform, Design of wireless e-services, Design of collaborative software agents, Design and implementation of prototypes, Design of user interface, and Studies of system functionality. A brief overview of some of the design issues follows. The development of DITIS was based on the HL7, ICD-0 and ICD-10 standards [11,12], with a view toward an open Healthcare Information Infrastructure [13]. Note that continuous monitoring of international standards is necessary. In particular, in the light of the high priority for EMR, messaging (e-prescriptions), protecting personal information (PKI and health cards) [14] the use of the following standards is reviewed: the EMR, e.g CEN standard EN 13606, ISO PKI Technical Spec., multipart ISO standard on health cards, CEN standard for e-prescriptions, and for messaging HL7 Version 3 and XML. The development team adopted the use of persistent mobile agents. Each user is assigned explicitly one mobile agent who is personalized to suit his needs, and ensure his/her continuous presence as a member of the virtual team (see Figure 3). Several features of mobile agents are currently being investigated [10] and planned for implementation. DITIS users are busy health care professionals. Such users need fast access to medical information, e.g. side effects of drugs, or combination of two drugs may lead to an unfortunate situation for the patient. This is classiﬁed as a standard human error, but the built in intelligent of agents can minimise this problem. The agent can retrieve

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Figure 3. The Client / Agent / Server application model used in DITIS, showing every user represented by a mobile agent.

information about the two drugs which are about to be combined from the database and deliver it to the user when it “feels” there is a need to do so. An additional equally important feature is the ability of the user agent to adapt its interfaces to any format the user device supports. In this case the agent can work as a proxy for transforming the output into the appropriate desired format. For example, in the case of mobile devices that support WML, the agent will reformat the output for the WML browser. In the case of desktop computers the agent will reformat the output for the HTML browser. In this way, it is expected that the system will handle multi-modal devices and provide a better experience to the busy user. Mobile devices were a necessity since most team members are mobile workers, visiting the patients at home, or need to be accessible from anywhere at anytime. At the time of development high power mobile devices such as Pocket PC 2002 or Tablet PC were not available. Therefore the team turned to existing mobile devices such as the SmartPhones, Pocket PC, Palm PC and Handheld PC. As a result, DITIS interface was built as simple as possible to support such devices. WAP and HTML technologies were used to address the problems of platform independence and portability. If the device supported a WML or HTML browser then it was supported as a candidate host for the application. An example interface is shown in Figure 4 for two commonly available mobile devices, which show a number of menu selections for the home-nurses. The design and development of DITIS, is based on commonly available technology, and includes and integrates: Flexible networking infrastructure, (GSM and GPRS cellular networks and ADSL for always-on high speed access to the Internet); Mobile Agents running on the Voyager platform, for the implementation of ﬂexible communication infrastructure for the support of mobile users; Relational Database with Java Database Con-

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Figure 4. Example collaborative system screen on mobile devices.

nectivity (JDBC) for information storage and processing of Electronic Medical Records and Agents; Tele-cooperation system for sharing of information, team communication, coordination of team activities; Adaptive intelligent interface for database access from a variety of access units, such as devices with GSM/GPRS Internet connectivity, and Fixed units with Internet Access supporting Tele-cooperation; GSM Short Message Service (SMS) to enable push and pull of data and alerts, for example, whenever an agent updates information that affects the virtual medical team. MMS the emerging messaging system is under review.

5. Experience, evaluation and future directions DITIS, supports the activities of PASYKAF (Cypriot Association of Cancer Patients and Friends), who run a national home-based healthcare service for cancer patients living in the community. It is currently installed in all Cyprus counties with the collaboration system currently operating fully in Larnaca (due to the limited availability of mobile devices). 5.1. Clinical objectives Initially our aim was as basic as to improve communication and access to prescription in the home. The beneﬁts have far outreached our expectations and thus our objectives revised: • The presence of the (Virtual) Collaborative Medical Team by the patient at any given time irrespective of locality or cross country movement of either patient or health professional (allowing a local or overseas expert to be involved in consultation). In this way continuity of care is supported. • It creates a common information space. For example, on admission one history taken, shared by the team, offering a comprehensive assessment.

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• Improved secure communication within our home care team and between the team and hospital professionals (in outpatients or on emergency admission). Access to patient record is in accordance with team member’s authorisation levels. • Improved timely access to patient information. For example, while nurse is still by the patient’s side an oncologist can access the nursing record and change the drug chart. The system allows the prescribing doctor to follow up response to treatment at her own time. The symptom(s) are managed immediately (possibly avoiding need for further treatment), improving Quality of Life (QOL) of both patient and health professional. • Flexible collection of statistical data for further audit and research within the home setting. (Currently not attended in Cyprus; this will allow easy access for research.) • Evaluate our service and lobby for government funding. • Improve cost effectiveness and efﬁciency through improved communications and better planning of services and education resources. • Improved health practices (shift toward evidence-based) and reduction of bureaucratic overhead • Assists in promoting the dependant role of the home-nurse legally binding (for example, in the home setting when interacting with a hospital doctor for the prescription of drugs in the home). As a consequence of meeting the above clinical objectives the system improves the provision of health care to Cancer patients, thereby achieving better quality of life than can be expected under the circumstances, in the warmth of their own home. 5.2. Technological objectives: In addition to the clinical objectives some technological objectives were also met. • As all the technologies are Internet, GSM/GPRS, and JAVA based there is platform independence. The components collaborate seamlessly to implement the system. The DITIS architecture can be adapted also for other systems, such as a cardiac patients system, insurance agents and any type of collaborative environment requiring only minor adjustments on the customized database and the cooperative scenarios. • DITIS has developed novelty in the integration of new technologies, in home-care, and the support of home healthcare service through the use of Mobile Computing Units (e.g. Handheld PCs, Smart-Phones) and collaboration software. Efﬁcient and effective nursing care has been supported by DITIS, which provides a centralised web, based database with direct wireless connectivity linking all members of the virtual medical team. 5.3. Evaluation A continuous evaluation of DITIS from a user perspective was undertaken (longitudinal assessment) since the early phases of the project, and full details will be reported at a future date. An overview of the initial results based on the internal report [15], follows. The ﬁeldwork has taken place in various district sites of PASYKAF. Each site is served by a number of palliative care nurses who visit patients regularly in their house offering

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care. Data on DITIS implementation were collected on different stages of the implementation process: Phase 1: The preliminary part of the research has studied the use of mobile telephones by a group of palliative care nurses during the period August to September 2000. Interviews with three nurses and one doctor in the Larnaca site have enabled the study of nurses-to-nurses interactions and nurses and doctors/other specialists interactions via the use of mobile telephones whilst also contributed to gathering information on their level of awareness about DITIS and its potential use in palliative care. Phase 2: This part of the study took place in May 2001 and involved the use of a structured questionnaire that was sent to DITIS developers and potential users. It aimed to explore stakeholders’ expectations regarding DITIS. Phase 3: The ﬁnal phase of data collection took place in April 2003. By this time DITIS has been implemented in four district sites. During this phase, current users of the system in three district ofﬁces of Pasykaf were interviewed: 1 psychologist and 3 nurses. The main issues explored during interviews included the Participants’ actual use of DITIS, their own explanation of why they use DITIS the way they do, and their understanding of what users’ and others stakeholders’ role should be for achieving effective DITIS use. Initial assessment of the results: Overall, the data reveal that DITIS offers innumerable opportunities for palliative care nurses and other cancer-care practitioners. Nurses, psychologists and doctors acknowledge that DITIS has numerous advantages and that they are willing to incorporate it in their work activities. DITIS can improve communication, coordination and collaboration among members. Due to the huge amount of data regarding new and old patient records that need to be handled on a daily basis. Interestingly, even though technology phobia was identiﬁed in Phase 1 as a possible negative factor in the effective implementation of the system, it was later expressed by nurses in all districts that participated in Phase 3 that users are generally willing to adapt the system in their day to day work because they have experienced tasks to be executed faster and easier, saving time and effort. Given the beneﬁts identiﬁed above, there was a general feeling that DITIS has not yet been sufﬁciently incorporated in the daily work activities of the health care workers and that this will be a slow process ( mainly due to time constraints of the switch over and concerns about security and robustness ). It has been widely recognised that the effectiveness of this system’s implementation has been jeopardised due to ﬁnancial resources being constrained or at times becoming unavailable. The limited budget that the project development team had to work with mainly had two major implications. Firstly, that only a small number of mobile handsets could be acquired. As a result, to-date only nurses in one district ofﬁce (Larnaca) were given a mobile device with DITIS application whilst other district ofﬁces have to rely only on PC-based applications. This restricts the use and the potentials of DITIS which has been developed as a wireless application to promote virtual collaboration in cancer care. Secondly, limited ﬁnancial resources inﬂuenced staff availability on the project. The project has been experiencing staff discontinuities since the early stages of DITIS development. To quote a nurse: ”The system was done on borrowed time” (Larnaca, Phase 3), indicating that for the most of the implementation period, there were not any full-time project members; rather even though the system had gained the enthusiasm of several people who committed themselves to the system, none of them were able

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to make a full-time commitment to the project. Instead, there were several temporary project members throughout the duration of the implementation process leading to staffturnover, this brought inconsistencies and delays to the project development. Based on the results of the longitudinal assessment corrective measures are continuously being taken, including a more stable team due to the commitment of all relevant actors and availability of funding. Open questions under study include: The cost of setting up such an infrastructure and supporting it, versus the beneﬁts such as Quality of Life and time saved, are difﬁcult to justify in monetary terms. Also the potential beneﬁt of using GPRS and ADSL (always connected, higher speeds) versus the earlier GSM/WAP mobile telephone device and ISDN for the ﬁxed computer lines (dial-up, low bandwidth) and costs of maintaining such a telecom infrastructure (currently supported by CYTA, Telecom Operator in Cyprus). Another barrier is the high cost of hand held devices and rapid change of technology, which have hindered the projects development Cyprus wide. On a more positive note trust between the team was considered a possible problem but because the team was already used to working virtually, DITIS has enhanced this capacity, rather than being a problem. Trust of the actual system and its security has become more of an issue to be considered as well as the legal framework of e-prescription.

6. Conclusion Today, some 8 years after the initial idea of DITIS [16], the face of cancer care and telecommunications in Cyprus has transformed. The Bank of Cyprus Oncology Centre was recently established, and is working with us on direct referrals through the system and security issues. Also the new technologies of ADSL and GPRS offer easier access by the health care team to current patient information and each other, at all times, and from anywhere. DITIS is offering the possibility for a ﬂexible dynamic virtual health care team for every patient. We expect it will lead to an improved quality of life for both the patient and the health professional. We continually strive to improve user friendliness and responsiveness of system, being aware that the healthcare professional is not always computer literate and always busy. In conclusion, DITIS delivers a product that can improve the quality of the citizen’s life. Contrary to today’s health processing structure which is, in all practical terms facility-based, this project shifts focus onto home-based care, where everything is moving around the patient. Thus chronic patients, such as the cancer patient, can now enjoy ‘optimum’ health service, with improved quality of life, in the warmth of their own friendly environment, without a degradation in the quality of care provided to them, feeling safe and secure that in case of a change in their condition the health care team will be (virtually) present to support them.

Acknowledgement This project was initially funded by the Cyprus Research Promotion Foundation for a two year period (1999-2001). The total support of the Cyprus Telecommunications Au-

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thority (CYTA) with telecommunications infrastructure, WinMob Technologies Ltd for wireless technologies, Ericsson (through S.A. Petrides Ltd) for the provision of handsets, Microsoft for the .net framework and XDA devices, and the Cyprus Development Bank (CDB) for ﬁnancial support are gratefully acknowledged.

References [1] A. Pitsillides, B. Pitsillides, G. Samaras, M. Dikaiakos, E. Christodoulou, P. Andreou, D. Georgiades, A Collaborative Virtual Medical Team for Home Healthcare of Cancer Patients, Book Chapter, M-Health: Emerging Mobile Health Systems, (R. H. Istepanian, S. Laxminarayan, C. S. Pattichis, Editors ), Kluwer Academic/Plenum Publishers, 2003 (to appear) [2] M.Cherry, L. Ogilvie, D. Paquette, Evaluation of Information Standards for Home Care Health Transition Fund Final Project Report, Canadian Institute for Health Information, Canada, March 2001. [3] Canadian Institute for Health Information. National Consensus Conference on Population Health Indicators Final Report. Ottawa: CIHI, 1999. [4] M. Berg, Patient care information systems and health care work: a sociotechnical approach, International Journal of Medical Informatics, 55, 2, 87-101, 1999. [5] N. Panteli, M.R. Dibben, Reﬂections on Mobile communication systems, Futures, 33/5, 379391, 2001. [6] S. L. Jarvenpaa, D.E. Leidner, Communication and Trust in Global Virtual Teams, Journal of Computer-Mediated Communication, 3, 4, June 1998. [7] J. Lipnack, J. Stamps (1997), Virtual Teams: Reaching Across Space, Time, and organizations with Technology, John Wiley & Sons, Inc. NY. [8] R. Kraut, C. Steinfeld, B. Butler and A. Hoag, Coordination and Virtualization: The Role of Electronic Networks and personal Relationships, Journal of Computer Mediated Communication, 3, 4, 1998. [9] R. J. Lewicki, B.B. Buncker, Developing and Maintaining Trust in Working Relationships, in R.M. Kramer and T.R. Tyler (eds) Trust in Organizations: Frontiers of Theory and Research, Sage Publications, Thousand Oaks, CA, 1996 [10] G. Samaras, A. Pitsillides, D. Georghiades, Computational and Wireless Modeling for Collaborative Virtual Medical Teams, Book Chapter, M-Health: Emerging Mobile Health Systems, (R. H. Istepanian, S. Laxminarayan, C. S. Pattichis, Editors ), Kluwer Academic/Plenum Publishers, 2003 (to appear). [11] ICD-10 International Statistical Classiﬁcation of Diseases and Related Health Problems (10th Revision). Web site: http://www.mcis.duke.edu/ standards/termcode/ icd10.htm. [12] Health Level Seven Web Site http://www.hl7.org/. [13] B. Blobel, Analysis, Design and Implementation for Secure and Interoperable Distributed Health Information Systems, Volume 89: Studies in Health Technology and Informatics, 352 pp, IOS Press, 2002. [14] R. Rogers, J. Sembritzki, P. Village, CEN/TC 251 Health Informatics, Priorities for application of ICT Standards–A project report for Ethel Thematic working group T1, CEN/TC 251/N02-073, Dec 2002. [15] N. Panteli, DITIS: An e-health mobile application in Cyprus, Evaluation based on the users’ perspective, Draft Internal report, University of Bath, UK/May 2003. [16] A. Pitsillides, C. Pattichis, B. Pitsillides, S. Kioupi, “Tele-homenursing: A cooperative model for patient care in the home”, Comprehensive Cancer Care: Focus on cancer pain, Limassol, Cyprus, 28-31 May 1997, pp 48.

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eHealth 2003: The Economic and User Perspective Erich R. REINHARDT Member of the Board Siemens AG and CEO, Siemens Medical Solutions Abstract. People’s desire is quite simple: They want to stay as healthy as possible. The aim of healthcare is to help make this desire a reality. Innovations have substantially supported healthcare providers’ in their efforts to increase the quality of care. To continue to make signiﬁcant improvements – even under difﬁcult socioeconomic circumstances – healthcare must now become more process-oriented throughout the complete care process, i.e. from early detection to cure. Modern information and communication technology, i.e. eHealth, is the key to optimize processes within the entire healthcare system and to provide higher quality care at less cost. Quantiﬁable proven outcomes that clearly demonstrate the efﬁciency of eHealth are being realized. Action and co-operation between all healthcare players is necessary to structure and enable healthcare in a way that allows all people to beneﬁt from the tremendous potential for progress that information technology offers to healthcare.

Continuous Improvement of Care through Innovation During the last decades, innovative technologies have made signiﬁcant contributions to the quality of healthcare. With the discovery of x-rays 100 years ago it became possible to take images from inside of the body without the need for invasive procedures. Since then, there have been continual and signiﬁcant improvements in radiology. Today, it is not only possible to receive an x-ray image, but a digital 3-D movie with high spatial resolution revealing anatomic structures up to a resolution of 0.5 millimetres. Very innovative techniques allow incredible details to be displayed. At the same time, acquisition times have become signiﬁcantly shorter and x-ray exposure has been greatly reduced. This example is meant to illustrate how innovative technologies contribute to improvements in the quality of diagnosis. However, innovative technologies also often bring new challenges, e.g. in this case how to effectively and efﬁciently interpret the tremendous amount of data that is now being generated. Computer aided diagnosis will likely prove to be an effective tool to do this, e.g. when it comes to diagnose state of the art computed tomography examinations with a volume of 2,000 images per 20 seconds. In much the same way, eHealth has the same potential to improve the quality of care in the entire healthcare system. Focus on Quality General healthcare discussions, unfortunately, are not focused on the quality improvements that can be achieved with innovative technologies. They are typically focused

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Figure 1. The increase of healthcare expenditures from 1992-2000 in European countries was 37%. However, the share of investment in medical equipment is just 1%.

on cost reduction. Indeed, healthcare expenditures have greatly increased, as shown below [1]. What is driving this increase? Are expenditures being driven by so-called high-tech systems? The answer is very clearly, no. If one considers investments in high-tech equipment, e.g. Computed Tomography, Magnetic Resonance, or Angiography, it accounts for only 0.2% of total annual healthcare expenditures. Even taking all electro-medical equipment into account, just 1% is being invested. And including all reimbursement fees, running costs only account for an additional 4%. We should not only focus on the cost aspect, but also on the quality aspect. If the quality of diagnosis improves, if treatments are more speciﬁc and more comfortable for the patient, these are aspects that need to be considered. Innovative technologies are able to provide tremendous improvements in the quality of care.

Quality Assurance and Early Recognition Safes Cost From a quality perspective, we have to understand the complete healthcare process from early detection to diagnosis, therapy, care, rehabilitation, and home care. In the ideal case, where diseases are detected at an early stage, the burden for patients is lower and the chances for a complete recovery are much greater. Costs for treatment and rehabilitation are also minimized. This can be seen in Figure 2. Today, however, diseases are most often detected at a rather advanced or acute stage, with negative effects on cure and costs. Furthermore, if unintended “adverse events” occur, the situation is even worse. Besides the highly negative effects on costs, “adverse events” are a very serious quality issue. The Institute of Medicine (IOM) published a report in 1999 [2] that stated medical errors cause about 90,000 deaths in the United States every year. Sceptical people may say that this number is exaggerated, but even

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Figure 2. The costs for the different steps in the healthcare process depend on quality assurance and early recognition. The current healthcare process differs from the ideal course. In the case of “adverse events”, costs explode.

assuming that it is half, it is still a very signiﬁcant number. It is in our interest to develop products and solutions that enable us to move from the light blue curve in Figure 2, “adverse events”, to the dark blue curve, the ideal scenario. This is how industry can contribute to improving the quality of healthcare while at the same time reducing cost.

Levers for Improving Healthcare If we agree that there is a need to increase efﬁciency in healthcare, how do we do this? The main objective must be to increase the quality of healthcare while reducing costs. At the same time, this must be accomplished in a patient-centred healthcare system, i.e. one in which the patient is in focus and patients’ values guide all decisions. In compliance with the position of the IOM [3], Figure 3 gives an overview. First, it is important to understand what industry calls “process-driven concepts”. What does “process” mean? In healthcare, process is clinical workﬂow, which involves three categories: prevent, cure, and care. Let’s take the case of cure: workﬂow starts when a person gets injured and ﬁnishes when a person is well again. Each and every step in between has to be optimized in a way that healthcare services become qualitatively better, less expensive, and more comfortable for the patient. This is what we mean by process optimization. Therefore, with the patient always in focus, we have to reduce cycle time, failures, and adverse events. We also have to increase throughput and efﬁciency, and it is essential to establish more competition between healthcare providers. Finally, we have to deﬁne parameters that allow us to measure the quality of the care being delivered. In summary, we have to comprehensively improve the workﬂow, the clinical and operational / ﬁnancial processes, in the healthcare system. Information technology is the key enabler to do this.

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Figure 3. Healthcare delivery involves complex processes and different aspects have to be considered simultaneously.

Time is Brain for Stroke Patients Let’s look at an example of how eHealth can make a signiﬁcant improvement in a highly time-sensitive workﬂow, stroke management in an emergency room. About 600,000 US citizens suffer a stroke each year. A study from 1995 [4] concluded that thrombolysis, if administered within the ﬁrst three hours after the symptoms occurred, would have a signiﬁcant impact on the patient’s quality of life. 45% of all patients arrive in the emergency room within three hours, one would say “in time”, and frequently have a therapeutic window less than one hour. Nonetheless, only 2% currently receive the thrombolysis they need in time. In this case, “time is brain”. However, ensuring treatment is a complex process. Different departments must work closely and ﬂawlessly together. This is a perfect situation for an intelligent eHealth solution, a so-called “workﬂow engine”. It can actively support the management of stroke patients (Figure 4). When the patient arrives at the hospital, the tasks that must be performed are immediately deﬁned and the time remaining for treatment is assessed. All necessary steps are then aligned to the goal of delivering the patient the appropriate infusion on time. However, the “workﬂow engine” does more than deﬁne the various rules, it actively pushes tasks and monitors their status. At the beginning of the process, all of the departments receive a task list. If a task is not completed on time, there is an alarm. If the alarm does not help, a back-up solution is immediately initiated. The impact is signiﬁcant, making sure that all participants know what they have to do and by when.

Proven Outcomes: measurable, tangible results through eHealth Optimizing processes, i.e. clinical workﬂow and operational/ﬁnancial workﬂow, with the support of eHealth is key. The effectiveness and efﬁciency of eHealth solutions is relatively easy to describe, but only real results can convince. Quantiﬁable proven outcomes

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Figure 4. Screen shot of an eHealth-managed stroke patient.

validate our message and motivate us to achieve more. ”Proven outcomes” means having tangible and measurable efﬁciency improvements. In the following pages, seven eHealth proven outcomes are described and demonstrate that eHealth is already making a contribution to high quality, patient-focused care with optimized processes.

1. Optimised Data Management At Bethesda Healthcare System, USA, report turnaround time was signiﬁcantly reduced, from 16.5 to 4 hours, through electronic archiving and distribution (Figure 5). As a consequence, information is available quicker and decisions makers are more informed, thus allowing therapy to start earlier and hospital stays to be reduced. This has signiﬁcant impact on the total clinical process [5]. Another case can be found at the Deaconry Hospital in Germany, where a restructuring and optimization of both clinical and operational workﬂows using eHealth improved resource utilization in the radiology department (Figure 5). With nearly the same number of people and the same equipment, 80% more examinations could be done.

2. Faster Processes eHealth is not only able to synchronize processes in one department, but also among referring physicians in the healthcare enterprise. For example, at the South Carolina Heart Center, post-procedural report turnaround time was greatly reduced (Figure 6). Reports

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Figure 5. eHealth supports timely and cost efﬁcient information exchange and workﬂow.

Figure 6. eHealth accelerates processes across the healthcare enterprise.

that previously took up to 2 days to turnaround, are now available in a matter of minutes. And through the additional procedures allowed by the this time savings, the return on investment on the system was less than one year.

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Figure 7. eHealth reduced the medication process cycle time and medication errors.

3. Faster Administration of Medication and Reduction of Medication Errors The aforementioned Institute of Medicine report also concluded that about 7,000 patients die in US hospitals annually due to medication errors. This has resulted in enormous efforts to optimize the medication process and reduce failure rates. The application of an automated Physician Order Entry (POE) system has led to signiﬁcant efﬁciency improvements at the Ohio State University Health System (OSUHS), USA [6] and Soedersjukhuset, Sweden [6] (Figure 7). In the ﬁrst case, the medication turnaround time (from physician order entry to medication administration) was reduced by 64% at OSUHS, where the system has been running for more than one year. Medication now arrives signiﬁcantly earlier at the point of care and, often, the nurse who was present when the drug was prescribed, is still there. This is a signiﬁcant advantage in order to ensure that the right medication is administered to the right patient at the right time in the right dose. In terms of the overall medication process, it is now easy to verify, to obtain and/or provide additional information, and to document the different steps. The second case, in Sweden, shows that the medication error rate was greatly reduced. And not only are erroneous or incomplete prescriptions the source of medication errors, but they often also cause time consuming investigations. Besides the obvious patient beneﬁt of having the right medication, nurse satisfaction is also higher. Now, as nurses have the tools to support high quality and efﬁcient work, they are more assured in the effectiveness of their tasks.

4. Efﬁcient Prevention When considering clinical processes, we cannot forget prevention. eHealth also supports this growing area of healthcare. An example for efﬁcient prevention with eHealth is

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Figure 8. eHealth can efﬁciently identify individuals at a higher risk for stroke.

the project “t@lking eyes”, shown in Figure 8. The aim of the project is to identify individuals to be at a higher risk for stroke or heart attack. Images of blood vessels in the back of the eye, which are considered to mirror blood vessels in the brain [7], are easily produced using a laser-camera that can be located anywhere, for instance at an employer. Images are taken and transmitted via internet to a specialized center. There, experts evaluate the images and then place a report on a secure server accessible to the participant. 7,000 individuals participated in the ﬁrst phase of this project. Therefrom, 20% were identiﬁed to be at a higher risk for stroke. These people are offered a disease management program that investigates the cause of their vascular abnormalities and educates them on measures to minimize the risk of a stroke or heart attack.

5. Reduced investments Through the use Application Service Providers (ASP), healthcare providers no longer have to invest in their own hardware, no longer have to maintain their own IT department, and no longer have to operate their own data center. All of this can be effectively outsourced and centrally hosted. The healthcare provider pays per use and receives all the applications via the net. This results in signiﬁcant economies of scale (Figure 9). ASP is real business today. In our data center in the United States [8], we already serve more than 1,200 customers with 200,000 physicians conducting 137 million transactions every day. If each of these 1,200 customers would maintain their own IT department, each of them would need at least two people during three shifts for seven days a week. In total, they would have at least 7,200 people. Our data center does the same work for them with 75 people. This should only illustrate how eHealth can be harnessed to improve the efﬁciency and to signiﬁcantly reduce investment in healthcare.

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Figure 9. eHealth can centralise and scale healthcare transactions.

Figure 10. Eight actions to build an integrated, transparent and efﬁcient healthcare system for the beneﬁt of citizens.

Political Requirements to Provide the Basis for eHealth The eHealth concept is already being successfully realized and delivering proven outcomes. The question now is: What can we do on a political level, what do we have to do, in order to utilize all of the potential of eHealth for the beneﬁt of people? This is summarized in the following eight action points (Figure 10).

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First: Fully embrace and commit to IT in healthcare. This conference is a good ﬁrst step and an important milestone. It is fundamentally necessary to have the key participants understand the tremendous beneﬁts that information and communication technology has for healthcare. Secondly, it is essential to reduce regulations and create a more open and transparent competitive healthcare market. It needs to be determined what should be regulated and what should be open to competition, as well as what should be publicly ﬁnanced and what should be the ﬁnancial responsibility of the individual. One thing is for certain, a market open to competition will be marked by quality, innovation, and cost improvements. Thirdly, a reasonable balance between data privacy and efﬁcient data exchange has to be implemented. Speciﬁcally deﬁned rights for data access and sophisticated procedures for data security can ensure that data is kept private, but at the same time that it be harnessed to drive innovation and improve the quality of care. For the individual there are signiﬁcant advantages to data accessibility, e.g. avoidance of redundant exams and a faster and more accurate diagnosis. For the entire healthcare system there are also major advantages of data accessibility, such as the development of proven of evidence-based care paths. On this extremely important topic, we should strive to achieve international and European agreements and standards. The fourth action is also in this context: a legal environment for trans-European healthcare delivery should be created. This is, incidentally, a good opportunity for integrating the EU countries. Action ﬁve: eHealth should use proven international technical industry standards and utilize the information in existing systems to minimize complexity. Here, a lot of work has already been started. Next action point: establish European benchmarks and share best practices. We need to develop a common understanding of what “quality of care” is and deﬁne clear parameters to measure it. Having databases to exchange such information provides answers to questions such as “Who is doing best and why?”. Let’s learn from each other and share the different competencies. Now the seventh step: once it is clear what “quality of care” means and performance is measured, we have the basis to link provider performance to payment. “No outcome, No income” is natural and successful in other industries, so let’s introduce this selfregulating instrument in healthcare, too. Finally, acceding countries have a lot to accomplish in order to reach the standards of the associated countries of the EU. Therefore, a large budget has been provided to further develop their respective infrastructures. However, healthcare has not been included in these development funds. As is investment in transportation, energy, and telecommunication infrastructure, investment in and the continual development of an effective and efﬁcient healthcare system is important. It is important for a country’s economy and is a pre-requisite for the fast harmonization of healthcare standards that will be required through accession. Accession countries have a unique opportunity to set up a modern healthcare system right from the start. However, the success of their accession and integration will be greatly affected by the level of investment that is made in IT infrastructure and medical technology.

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A Promising Future with eHealth Without a doubt, eHealth will continue to strongly contribute to improvements in the quality and cost of healthcare. This is absolutely in line with the citizens’ desire to stay healthy and to receive high quality care. Industry can make signiﬁcant contributions to help develop eHealth and realize the potential in healthcare systems. And industry is not only Siemens. Our competitors are also investing here, as are the large IT companies. Proven outcomes are being achieved. Healthcare delivery is a common task in Europe, so it should be accomplished together. Now, a European Institute of Medicine has been established. In close cooperation with the European Parliament, all the different players have been brought together to synchronize the efforts to provide high quality care in Europe. If there is a real commitment of all of these players, Europe has the opportunity to become an eHealth trendsetter. The technology is available, as are very talented and committed people. We have everything we need. Now, it’s just up to us!

References [1] OECD Health Care Data 2002. [2] To Err Is Human: Building a Safer Health System, Institute of Medicine (IOM), 2000. [3] Crossing The Quality Chasm: A new Health System For The 21st Century, Institute of Medicine (IOM), 2001. [4] Tissue plasminogen activator for acute ischemic stroke, The National Institute of Neurological Disorders and Stroke rt-PA Study Group, NEJM 1995;333:1581-1587. [5] Proven Outcomes Case Studies 1, p.8; Siemens Medical Solutions, Order no. A91100-MB135-10-7600 [6] Baldauf-Sobez, W. et al.: “How Siemens Computerized Physician Order Entry Helps Prevent the Human Error”, in: electromedica 71 (2003) no.1, 2-10. [7] Wong T. Y., et. al., Retinal microvascular abnormalities and incident stroke: the Atherosclerosis Risk in Communities Study, Lancet 2001; 358: 1134–40 [8] Emig, D., Kijewski, J.: “The Application Service Providers in Healthcare”, in: electromedica 69 (2001) no.1, 2-4.

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Introduction to Industrial Perspectives: eHealth Systems, Past Experiences and Future Prospects Stan SMITS Philips Medical Systems Abstract. In this paper some of Philips’ experiences in the domain of eHealth will be described. The main premise however will be that the next major step forward will require a much more ubiquitous and pervasive infrastructure around Electronic Patient Records, giving the patient a much more important role in managing his or her own health.

In order to put the concept of eHealth into perspective we have to understand the overall global challenges in healthcare. First of all it is very important to improve the overall quality of life. This means that we need to save lives, reduce patient discomfort (like CT based virtual endoscopy) and to reduce the number of avoidable medical errors. In this context the Institute Of Medicine study is often quoted that in the US yearly 98 thousand patients die due to avoidable medical errors. This for instance is the reason that major investments take place in automating the Physician Order Entry and in using decision support systems to test for drug interactions. Secondly it is important to control the cost. This is very difﬁcult in healthcare due to the fact that normal economic laws are not applicable. In particular the aging population will have a very big impact and healthcare will demand an increasing fraction of the GDP. On top of this the healthcare is growing also rapidly in many developing countries. An important way to reduce cost and save lives will be to improve in prevention and early diagnosis stages of the episode cycle. Major progress has been made in the domain of cancer treatment but eHealth technologies are already being utilized in early phases of implementation in the domain of cardiology. New technologies like 3D ultrasound will allow for early detection of heart anomalies and the threshold to use this technique, due to the fact that no X-rays are being used will be low. The ongoing revolution in Computed Tomography (CT) with 16 slice and higher scanners will not only allow for fast diagnosis but also for real time 3D heart investigations. More and more whole body scans are being used at the intake of trauma patients. Revolutionary 3D visualization techniques allow for virtual inspection of organs and other body parts. New techniques like virtual endoscopy greatly improve patient comfort and reduce the threshold for colon cancer screening. While the above examples and observations rely on heavy investments by both the manufacturers and the healthcare industry in computer technology, many of the interactions with the patients require them to be present in the hospital or clinic. Philips has

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however started to bring several monitoring and treatment technologies to the home, building on its strength in the semiconductor and consumer electronics domains. Three examples will be reviewed in this paper: “Philips HeartCare Telemedicine” for post event cardiac patients (like CHF), “Cardio on line” for Sudden Cardiac Arrest target groups and “HeartStart”, Philips new home deﬁbrillator. For the acquisition of ECG’s Philips has developed for consumer use two easy to use products, one 12 lead ECG for remote read-out to be used in-house and one 1 lead ECG disguised in a wallet including an acoustic modem, allowing it to be used away from home. In Germany, Switzerland and Italy so-called monitor centers, staffed 365 days a year, 24 hours per day have been established. These centers are staffed by professionals: Medical Specialists and Monitor Center professionals. They have also an extensive knowledge of all General Practitioners, Medical Institutions and Emergency Services. Important however is that this service is integrated into the total care system allowing it to offer the possible care for post event cardiac patients. It will not be a surprise that setting up such a service is a very complex effort with a lot of upfront cost and a need for close cooperation across the whole healthcare value chain: insurers, hospitals, doctors, emergency services etc. And because the business models of these different players are not synchronized signiﬁcant pushback is observed due to the impact this initiative might have on the revenue of a particular player. Key for this service is the low threshold to call during day, night and weekends. The off-hour calls have been increased from 28% to 38%. Taking the initiative to call the patients in the beginning actively so that they are aware that this service is available and that they need to take immediate action when they feel something has helped to achieve this result. The statistics of the calls is being tracked and classiﬁed. Symptoms are being looked for, using the remote monitoring equipment to test so that the staff can take immediate action by calling the right healthcare providers when needed. In fact only 47% of the calls needs to be referred further for treatment. Philips Research in Aachen has developed a second service called “Cardio online”, focused on “Sudden Cardiac Arrest”. In this case the patient is constantly monitored for a sudden arrest of the heart. The survival rate is very dependent on the timely deﬁbrillation to take place. Target groups for this service will be patients with heart problems, elderly people, etc. This is not a hypothetical problem. In the US a quarter million people die each year as a result of a sudden cardiac arrest. In Europe the number is similar. In Germany 10 times more people die each year as a result of this problem than in trafﬁc. And it is without doubt the leading single cause of death. As 80% of the cases occurs at home and 45% is not witnessed this results in a certain death. Only 25% of the witnessed cases gets a CPR almost instantly, in 75% it is done by the emergency service. In short survival at home is only 5%! Special underwear has been developed that allows in a comfortable way to monitor the patient constantly. When needed an alarm is activated, received by the alarm center. Veriﬁcation takes place if there is a bystander or relative available, if so the home Automatic External Deﬁbrillator can be applied, if not the emergency center is alarmed and either a police car equipped with an AED or an Ambulance is dispatched on site.

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As can be seen by the previous example the use of an AED will help to save lives and Philips is very proud to be the ﬁrst on the market with this revolutionary equipment. A paradigm shift is occurring in the industry enabling a journey for clinicians and their patients towards a fully integrated healthcare enterprise. This paradigm shift is based on information technology that is patient-centric and that will be a ubiquitous and pervasive utility in the healthcare enterprise easing the work for doctors and staff with their day-to-day activities and help patients taking care of their health. A big handicap to achieve this vision however is the very fragmented market. In the US 1200 companies with a total sales of 13.6 B $ in 2001 are active in this market. However only 12 players (1%), mostly focused on the Electronic Patient Record centric solutions address 38% of this market. The situation in Europe, due to the fragmentation by country, might even be worse. This means that if signiﬁcant progress in the coming years is to be made, much more concerted efforts are needed. For example the UK is currently deﬁning so-called LSP’s to address this problem to some extend. Key to be able to move from eHealth to a ubiquitous MyHealth vision will be the possibility that no player locks the patient in. This will require portability of EPR information and the realization that many technical and political issues need to be resolved to get there. Also most health systems, if not all, in Europe are different. This will require very high additional costs and may put small countries at a disadvantage. For instance can the manufacturers community afford to make dedicated implementations for The Netherlands with only 100 hospitals and even that number is decreasing, compared to the US with about 5000 hospitals as target market. . . The second element of this future, or futuristic, vision is that the Electronic Patient Record should be the way to document the complete history of the patient from birth (or even before) to death. This will bring many challenges with it like a unique patient number, access rules, ownership of information, economies of scale, technology future proof, ubiquitous access across Europe, if not the world, for patients and doctors (think about elderly people in the North snowbirding in Spain) and taking into consideration the exploding datasets coming out of monitors and imaging equipment. This leads to the following thesis: “A ubiquitous and pervasive infrastructure around Electronic Patient Records will be the key to make the promise of eHealth a reality. This will require teamwork between all industry actors (manufacturers, health systems, doctors, insurers) and the public sector”.

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e-Health Standardization in Europe: Lessons Learned G.J.E. DE MOOR, B. CLAERHOUT, G. VAN MAELE, D. DUPONT Research in Advanced Medical Informatics / Telematics, University of Gent, Belgium Abstract. Challenges regarding standardization in e-Health are analyzed, and solutions for ensuring their practical implementation are proposed. Emphasis is put on new mechanisms for enhancing the collaboration between the industry and standardization bodies.

Introduction In modern society, the systematic availability of medical care services is recognized as a vital component of the social network. With the emergence of information technologies, e-Health systems and services are already playing a key role in shaping the health care delivery of the future. While a large number of countries are about to implement major e-Health policies, programmes and partnerships, they are facing signiﬁcant challenges, including the incompatibility of current information systems due to the absence of implementation of standards [1–3]. It should be recognized that the healthcare sector represents a very complex market. In addition, healthcare policy makers, as well as citizens, expect the quality of healthcare to be driven by factors other than those of commerce alone. As such, public authorities play a key and inﬂuential regulating role. New actor in this fragmented and demanding market, the e-Health industry, which consists mainly of small and medium enterprises, faces the challenge of showing return on investment, in the dual context of driving technological innovation and meeting the high expectations of many diverse health care providers and end-users. Hence, by facilitating implementation platforms, e-Health standards could and should beneﬁt all stakeholders of the health care sector. (see Figure 2).

Figure 1. Dilemmas in e-Health Standardization.

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Figure 2. Beneﬁts of e-Health Standards.

Figure 3. The Beneﬁts of Interchange Standards.

It is often, albeit inaccurately, believed that standardization is counteractive and burdensome, or that it may restrict technological innovation and renewal strategies. However, if carried out properly, standardization assists in forming a sound basis which in fact facilitates and optimizes technological renewal and development. E-Health exchange-standards, which secure interoperability, clearly illustrate how some loop-effects that are beneﬁcial to market expansion, can be achieved (see Figure 3).

Achievements With the progress and major results achieved in e-Health standardization, standards are being used worldwide in many ﬁelds today [4]. The symmetry of past and current activities within CEN/TC 251 and ISO/TC 215 reﬂects the willingness to co-operate at a more global level (see Figure 4). CEN/TC 251 in Europe and HL7 in the US have agreed to collaborate on the basis of mutual appreciation, respect and openness, to seek for pragmatic solutions in matching

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Figure 4. Symmetry between CEN/TC 251 and ISO/TC 215.

their sets of standards in healthcare communication, and to make the results of their co-operation globally available through ISO/TC 215. The recognition that standardization in e-Health represents an international matter will assist in reducing the number of conﬂicting standards and will support the implementation of complementary standardization programmes. European standardization efforts in e-Health have resulted in a number of ENs and ENVs that are commonly recognized as being of outstanding quality, especially in domains such as Electronic Health Records -considered the ’Holy Grail’ in e-Health applications- and Security, two highly specialized ﬁelds where Europe has shown its indisputable strengths.

Challenges To be useful, standards should meet real needs and also be practical. Furthermore, in order to avoid the proliferation of heterogeneous and non-interoperable solutions, legislation should enforce conformance with standards (de jure or de facto). Because of existing procedures – including the restrictions on electronic publication of standards documents-, and some structures, such as the ofﬁcial national standards organizations, timely delivery and efﬁcient implementation of e-Health standards have always been a problem, particularly in Europe. Appropriate structures and procedures should reduce the risk of producing outdated applications doomed to quickly become obsolete in the fast evolving ﬁeld of e-Health standardization. The following table lists some obstacles pertaining to e-Health standardization in Europe. It leads to the conclusion that the main barriers are not mainly technical in nature, but rather legal, linguistic, societal, ﬁnancial, ethical, political etc. Both legislation and standards have ofﬁcial authority. While legislation can be enforced with or without penalties, standards are not compulsory, as they are primarily meant as solutions that have to respond to market rules and needs. In the context of healthcare, however, standards and legislation are linked by liability: “a skilled professional is one who follows the standards that have been developed and accepted by his

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own profession” [5]. Procurers of ICT solutions for health should therefore request products that conform to existing standards and guidelines. Criteria for assessing the quality of several e-Health applications exist, and conformance testing with respect to standards has already been implemented in a number of places. Subsequent to the successful accreditation of EHR-software organized by the Belgian Ministry of Health [6], there is growing interest in planning a certiﬁcation and conformance testing programme at a pan-European level. In the case of EHR-software certiﬁcation, the recently established EuroRec Institute could act as the certiﬁcation authority. Another important problem for the European standardization in e-Health in general and for CEN/TC 251 in particular - is the lack of support from the industry. Although this may be explained by an approach that may have been perceived too research-based at ﬁrst, it has become apparent that the direct involvement of vendors of health information systems (which is not the same as IT consultants) including many SMEs has been seriously lacking. Consequently, the early involvement of the industry in the development of e-Health standards will no doubt facilitate the implementation and adoption of standards by the vendor communities.

Conclusions In order to ensure the early adoption and implementation of e-Health standards in Europe, working methods and structures need to be revised and adapted. The Open Workshop Mechanism, which has already proved its worth in other ICT related domains, may offer a suitable alternative platform where industry players, domain experts and endusers can all work together. Such an Open Workshop structure could also interact more directly with the ISO committee, and thus increase its visibility and impact at a more global level. At the European e-Health 2003 Conference in Brussels (May 22, 2003), Ministers have expressed their commitment to the development of national and regional implementation plans. In particular, they support concerted actions that will address the development of standards, to enable the interoperability of diverse systems and services, and to explore the possibilities of open source applications for achieving this objective [7].

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While the role of the healthcare authorities is of paramount importance, the political will is also crucial to a favourable environment, and needs to be substantiated by legislation and funding. To support a vision of equity, efﬁciency, accessibility and security for the delivery of health care services, e-Health priorities should be aligned with those identiﬁed in the healthcare systems of each Member State. The strategies of the Member States should include the development and implementation of innovative, well thought and efﬁcient e-Health business plans that comprise built-in legal, ﬁnancial and professional incentives for the implementation of e-Health standards. Acronyms CEN/TC 251 EHRs EN ENV ICT ISO/ TC 215 SMEs

Standards Committee, Technical Committee on Health Informatics Electronic Health Records European Norm / Standard European Norm (Vorausgabe) / Prestandard Information and Communication Technologies International Standards Organisation, Technical Committee on Health Informatics Small and Medium Enterprises

References [1] G.J.E. De Moor, C.J. McDonald, J. Noothoven, Progress in Standardization in Health Care Informatics. Studies in Health Technology and Informatics, Vol. 6, IOS Press, 1993 (ISBN: 90 5199 1142). [2] G.J.E. De Moor, Special Issue on Standardization in Health Informatics: Towards Global Consensus and Cooperation. International Journal of Medical Informatics, 49 (1-3):1-258, 1998 (ISSN:138-5056). [3] G.J.E. De Moor, The Promise of Medical Informatics in Europe. IMIA Yearbook of Medical Informatics, Schattauer, 1999 (ISBN: 3-7945-1951-5). [4] G.O. Klein, Standardization of Health Informatics – Results and Challenges. Methods of Information in Medicine, 41:261-270, 2002 (ISSN: 0026-1270 E 3146 F). [5] F.A. Allaert, Law and Standards faced to Market Rules in Health Information Security. Health Technology and Informatics, The New Navigators: from Professionals to Patients, IOS Press, Vol. 95: 125-129, 2003. [6] F.H. Roger-France, M. Bangels, Norms for Telematics in Health Care: Priorities in Belgium. Health Technology and Informatics, E-Health in Belgium and in the Netherlands, IOS Press, Vol. 93: 179-183, 2002. [7] Ministerial e-Health Declaration, Brussels, 22 May 2003. CEU, DG INFSO.

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The Cost Beneﬁt of Electronic Patient Referrals in Denmark: Summary Report Sharon CANNABY and Dean WESTCOTT ACCA Claus Duedal PEDERSEN, Henning VOSS and Christina E. WANSCHER MedCom This summary report is written by ACCA and MedCom in collaboration with the European Commission Information Society Directorate-General

Purpose of the study There is little doubt that applying information and communication technology to healthcare (eHealth) delivers qualitative beneﬁts to patient care, but do they bring any cost beneﬁts? This is the question that the European Commission Information Society Directorate-General (DG INFSO) asked the Association of Chartered Certiﬁed Accountants (ACCA) and the Danish Centre for Health Telematics (MedCom) to investigate. This study, which focused only on the quantiﬁable cost beneﬁts associated with the operation of electronic patient referrals in the Danish healthcare system, attempts to ﬁnd an answer to that question. The study shows that full adoption of electronic referrals will give a potential saving of €3,512,146 or €0.65 per capita.

Electronic communication in the Danish healthcare sector Denmark has been a proliﬁc implementer of electronic communication in healthcare since the late 1980s. Today, the Danish healthcare sector sends over 321 million electronic messages each year and the vast majority of hospitals, general practitioners (GPs), laboratories and pharmacists are able to correspond using electronic communication. (Table 1) The degree of electronic communication varies according to the message type. For example, although the majority of prescriptions, reimbursement requests, discharge letters and laboratory results are transmitted electronically, other messages, such as patient referrals to hospital, are still predominantly transferred on paper (59%)2. 1 www.medcom.dk 2 www.medcom.dk

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Table 1. Access to Electronic Document Interchange (EDI) across the Danish healthcare sector (March 2004)3 Number

%

General Practitioners

1,995

92%

Specialists

490

62%

Pharmacies

332

100%

Hospitals

63

100%

Table 2. Annual patient referrals to hospital in Denmark % Electronic referrals

377,269

41%

Posted referrals

217,160

24%

Faxed referrals

325,739

35%

Total

920,168

100%

Scope of the study A full analysis of the cost beneﬁts of electronic communication in the Danish healthcare sector would take signiﬁcant resources, both time and money. Therefore, it was decided to restrict the study to just one message type: patient referrals to hospital. Nearly 60%4 of patient referrals to hospital in Denmark are still sent on paper, so the study looked at the difference in costs between electronically transmitted referrals and referrals by post or fax. The stages of the study There were four main stages to the study: • • • •

mapping the different information and work ﬂows between GP and hospital identifying the time that each of these information ﬂows takes calculating the cost of each information ﬂow comparing the results to identify which is most cost effective.

Stage One The ﬁrst stage of the study considered the different ways that information may ﬂow between a GP and a hospital whenever a patient is referred for hospital treatment. The GP produces the referral electronically on the Electronic Patient Record system and then selects one of three communication ﬂows: • sends it by post or fax to the hospital • dispatches the referral electronically to the hospital where it is then printed off and processed as though it were paper based 3 www.medcom.dk 4 www.medcom.dk

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• dispatches the referral to the hospital electronically where it is then processed electronically. Stage Two Once the different types of information ﬂows had been identiﬁed, they each had to be mapped out in detail. This was done by identifying a sample group of GPs and hospitals using the three identiﬁed communication ﬂows. The sample chosen included ﬁve hospital regions5, 20 GP surgeries and covered 13 different hospital departments6. These hospital departments receive 41,235 referrals a year, or 4.5% of all referrals in Denmark. The hospitals and GPs were asked to complete a time and motion study describing in detail each step of the referral process including the time taken to process the initial referral, the percentage of referrals that were returned due to incomplete or illegible forms and the time taken to correct the returns. They were also invited to comment on any perceived advantages and disadvantages of electronic referrals. Stage Three The third stage of the study involved identifying the costs associated with the three referral patterns and then calculating the total cost of each. Three types of expenditure were identiﬁed: • handling costs were deﬁned as the total cost of time taken by the GP, practice staff and hospital staff to process each referral • operational costs were deﬁned as the cost of physically transferring each referral from the GP to the hospital • equipment costs were deﬁned as the proportionate cost of hardware, software and training needed to produce, process and send (or receive) each electronic referral. Handling costs Handling costs were calculated using the detailed data collected from the time and motion study. The data was ﬁrst analysed to give the average processing time of each of the referral patterns and then staff costs were attached to give the average handling cost for the three different information ﬂows. Operational costs The time and motion study identiﬁed three ways that GPs send referral forms to hospital: by post, fax or electronically. Equipment costs Equipment costs were difﬁcult to calculate as electronic referrals are just one of the many functions undertaken by GP and hospital information systems. After consulting the manufacturers it was decided to use a proportionate average cost of equipment for GPs and to use the proportionate hospital equipment cost that was calculated for a previous MedCom project. Stage Four The fourth and ﬁnal stage of the study compared the costs of each of the three different communication ﬂows to ﬁnd an answer to the question: What is the cost difference between patient referrals that are transmitted electronically and patient referrals that are sent by post or fax? 5 Funen, Vejle, Viborg, Copenhagen and H:S (The Copenhagen Hospital Coorporation) 6 Seven hospitals are presented in the analysis.

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Table 3. The difference in handling costs between the three referral processes Total handling costs € Referral produced electronically and sent by post or fax

4.33

Referral produced and sent electronically then treated as a paper copy by hospital

1.46

Referral produced and sent electronically and treated electronically by hospital

0

Comparison of costs The study found that there were signiﬁcant differences in costs between electronic and paper based referrals. Handling costs The difference in handling costs between the three referral processes is detailed in Table 3. This shows that the handling cost of a referral sent by post or fax is €4.33 more than a fully electronic referral. As 59% (or 542,899) of all referrals in Denmark are currently sent non-electronically, this suggests a potential saving of €2,350,753 per year if all paper referrals were processed electronically. The table also demonstrates that additional savings of €1.46 would be possible per referral if each hospital that currently receives electronic referrals and processes them manually switched to electronic processing. Table 3 only looks at the handling cost of an initial referral. About 2% of all referral forms submitted to hospitals have to be returned to the GP due to illegibility or incompleteness. A fully electronic system would help reduce the incidence of returns by increasing legibility and incorporating inbuilt completeness checks and so would offer further savings. Operational costs The average cost of sending a referral by post is €0.277 and the cost of sending the referral electronically or by fax is €O.168 . This suggests that adopting a fully electronic referral system would give savings of €0.11 per posted referral. If all 217,160 posted referrals were sent electronically the total saving would be €23,888. Equipment costs The average cost of equipment for GPs and hospitals is very difﬁcult to calculate because: • there are a number of systems available, each with a different price • the cost of equipment depends on the number of work stations • the systems are multifunctional so it is difﬁcult to isolate the cost for electronic referrals • the actual price of the systems is conﬁdential and the prices used are therefore estimates. After consulting a number of suppliers it was decided to assume that a GP must invest on average €900 every ﬁve years to transfer referrals electronically to the hospi7 The cost of a stamp is €0.60 and each letter contains on average 2.2 referrals. 8 Patient conﬁdentiality may be at risk when referrals are sent by fax.

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tals. Therefore, with 1995 surgeries across Denmark, the total GP investment cost in electronic referrals per year can be estimated as €359,100. The average cost of equipment for hospitals is taken from a previous MedCom project concerning the speciﬁc communication of referrals and discharge letters between hospitals. This gave an estimated price of €40,750 for each of Denmark’s 15 hospital regions over ﬁve years. The total equipment cost for hospitals is therefore €122,250 per year. Society cost There is one other cost that can be linked to postal rather than electronic referrals: the cost of delay in treatment for the patient. The study found that about 217,160 referrals per year are sent to the hospital by post and that these take an average of 1.33 days longer to reach the hospital than an electronic referral or fax. This extends the patient waiting time and, for patients unﬁt to work, creates a cost to society. GPs estimate that between 5% and 10% of patients referred to hospital are classed as unﬁt for work at an average cost to society of €939 per day. This suggests that the increased patient waiting times caused by posting referrals could cost society approximately €1,343,026 per year. What do the GPs and hospitals say about electronic referrals? The GPs, secretaries and hospital staff that participated in the study were asked if they had found any particular advantages or disadvantages in using an electronic referral system. The advantages they identiﬁed far outweighed the disadvantages and included: • • • • •

a faster referral process standard patient data already input the referrals delivered to the right department system checks help ensure completeness printed forms are easier to read by hospital staff.

The disadvantages identiﬁed included: • system failure • additional paperwork must be posted • GP focus may be directed at the screen not the patient. Conclusion Initial ﬁndings from this study suggest that widespread adoption of electronic patient referrals would be of signiﬁcant cost beneﬁt to the Danish health economy and would offer potential savings of €1,893,291 in direct costs per year (Table 4). If society costs are included this ﬁgure could increase to €3,236,317 per year. Table 5 describes how the potential savings grow as the number of referrals sent electronically increases. The total savings to date in direct costs, with 41% of referrals sent electronically, is estimated at €1,168,825 or €0.22 per capita. 9 Loss in production: GDP per capita (2002) €93

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Table 4. Annual potential savings from direct costs from adopting a full electronic referral process in Denmark € Handling costs

2,350,753

Operational costs

23,888

Less equipment costs

-481,350

Total

1,893,291 or €5.02 per referral

Table 5. Potential savings

% of electronic referrals

Savings from direct costs €

Less equipment costs10

Savings from direct costs less equipment costs €

Saving per capita €

No. of referrals sent electronically

0

0

0

41% of referrals sent electronically

41

1,650,175

-481,350

1,168,825

0.22

Additional 59% of referrals sent electronically

59

2,374,641

-31,320

2,343,321

0.43

All referrals sent electronically

100

4,024,816

-512,670

3,512,146

0.65

0

At present 92% of Danish GPs have an electronic referral system, therefore, for referrals to be 100% electronic the remaining 8% of the GPs will have to buy equipment at an estimated cost of €31,320. If all referrals were then sent electronically the total saving would potentially increase to €3,512,146 or €0.65 per capita. Further research now needs to be undertaken to determine if this ﬁnding is replicated across all electronic communication in healthcare. In particular, studies need to be made of each of the different types of electronic communication systems currently used by healthcare professionals, including the electronic transfer of: prescriptions, laboratory requests and results, discharge letters and requests for reimbursement. This research will take time and signiﬁcant resources but once complete will provide an answer to the question asked by DG INFSO: What are the quantiﬁable beneﬁts of electronic communication in healthcare? 10 Equipment costs are a ﬁxed cost as they are not dependent on the number of referrals

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ACCA and MedCom hope to contribute to this research and plan to meet DG INFSO to discuss the possibility of extending this study to other areas of electronic communication in healthcare. ACCA (The Association of Chartered Certiﬁed Accountants) ACCA is the largest and fastest-growing international accountancy body in the world, with 320,000 students and members in 160 countries. ACCA has an extensive network of over 70 staffed ofﬁces and other centres around the world. Our portfolio of qualiﬁcations is designed for today’s international business environment. ACCA qualiﬁed accountants are known for having integrity, professionalism and thoroughly relevant knowledge and skills. Our unrivalled access to companies, governments, regulators and practitioners across the world gives us a unique perspective on the needs of modern accounting and ﬁnancial management. We create value for the profession and the business community through our innovative approach to developing new qualiﬁcations and services and to raising awareness of sustainable development and corporate governance. www.accaglobal.com

MedCom MedCom was founded in December 1994 to lead on the development of national EDI standards for the most frequently exchanged messages between the primary and secondary healthcare sector in Denmark. Since then our role has been signiﬁcantly expanded and we now contribute to the development, testing, dissemination and quality assurance of all electronic communication across the Danish healthcare sector. Our latest project aims to introduce internet technology to healthcare communication so that modern IP-based, but still secure electronic communication can take place between healthcare providers and their patients. MedCom is now considered a European leader in the ﬁeld of electronic healthcare communication. We were proud to receive an honourable mention at the eHealth 2003 Ministerial Conference, and a ﬁrst prize together with the Danish national health portal at the eHealth 2004 Ministerial Conference in Cork. MedCom is located within the Danish Centre for Health Telematics, a project organisation established by the County of Funen to give advice and support to health bodies on the use of health telematics. MedCom is funded by The Ministry of Health, The Ministry of Social Affairs, The Association of County Councils in Denmark, Copenhagen Hospital Corporation, Copenhagen and Frederiksberg Local Authorities, The National Board of Health, The Danish Pharmacy Association and DanNet. www.medcom.dk

Acknowledgements ACCA and MedCom are grateful for the help and support of: Ilias Iakovidis, Deputy Head of Unit eHealth, European Commission, Information Society Directorate-General

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Robert Baker, Head of Personal & Professional Development, Salomons part of Canterbury Christ Church University College Tove Kaae, Consultant, MedCom The hospitals, general practitioners and data consultants from the participating hospital regions Note: This is a summary of the full report produced by ACCA and MedCom called ‘The Cost Beneﬁt of Electronic Patient Referrals in Denmark’. For a copy of the report please send your name and postal address to [email protected] or [email protected].

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The Road Ahead Ilias IAKOVIDIS European Commission, DG Information Society Petra WILSON European Health Management Association Jean Claude HEALY European Commission, DG Information Society The recent events dedicated to eHealth, such as eHealth 2003 and eHealth 2004 Ministerial conferences and exhibition, demonstrated clearly that a critical mass of users is being created who already use eHealth services and applications. Citizens, patients and health professionals are experiencing growing beneﬁts from the use of eHealth applications which can increase citizen information, increase patient empowerment, speed up delivery, and reduce medical risks. Yet despite their availability and proven beneﬁts, eHealth systems and services are not yet widely used in real-life medical or health situations. In many places, development is still at a pilot phase, often ﬁnanced through research grants.

Identifying the challenges The reasons for slower deployment of ICT (Information and Communication Technologies) tools in health domain have been a subject of numerous publications and debates in recent years. Some of these challenges related to wide scale deployment have been ofﬁcially acknowledged by the Ministers of health of most of EU countries during the eHealth 2003 conference during the debate and in the Ministerial Declaration. They include continuous commitment and leadership of health authorities, interoperability of e-Health systems, privacy related issues such as conﬁdentiality and security, standardisation and fragmentation of e-Health market, and most importantly, concerted effort by all the stakeholder (authorities, users, industry) to follow agreed and realistic roadmap for deployment of eHealth systems and services. What is needed now is a real ﬁnancial commitment which can allow the necessary organisational and educational changes and developments to be made. Trust and privacy related issues are critical factor for large scale deployment. In order that the trust of both patients and professionals in e-Health tools is won, it is of key importance that the conﬁdentiality and security issues related to the transfer of personal data across eHealth applications are addressed. The European Union Directive on Data Privacy1 has lead all Member States to adopt new or revised Data Protection legisla1 Data Protection Directive 95/46/EC. OJ L 281, 23.11.1995.

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tion which addresses the particular conﬁdentially and security needs of health related personal data. The challenge for the e-Health community is to translate those legal requirements into tools which are secure and complaint with all aspects of data protection. Building trust is a prerequisite to the development of an information society, in e-Health probably more than anywhere else. Related to the elements of trust and conﬁdentiality is the need for national and European level legislation to address with clarity and certainty the liability of all those involved in an e-Health chain. For trust to ﬂourish it must be clear from the outset to whom liability will accrue in the event of a failure or accident of one or several steps in an eHealth process. Many of the preceding chapters highlight the need for interoperability of eHealth applications across internal borders (from laboratory to laboratory, from primary to secondary care) and external borders between European Union members. Full interoperability should enable the seamless integration of heterogeneous systems, allowing secure and fast access to comparable public health data and to patient information located in different places over a wide variety of wired and wireless devices. However, this degree of access and availability depends on standardisation of system components and services (such as health information systems, health messages, electronic health record architecture, and patient identifying services). Similarly, the lack of standards and accreditation of products, together with different national regulations, have pushed up the cost of development and customisation Most eHealth solutions in the Union have either been designed by small- and medium-sized businesses or are developed internally by speciﬁc health organisations.. This has held the eHealth industry back from more substantial investment in eHealth solutions. Accordingly, a coherent European Union policy in standardisation and accreditation is needed. It is, of course, crucial to note that no single stakeholder can carry through implementation successfully without the active co-operation of all the other players. Each of the stakeholders, (health authorities, professionals, consumers, industry), has the power to impact negatively on the uptake an implementation, if it is not perceived as beneﬁcial. Only through concerted efforts by all stakeholders, can we ensure a successful implementation where all partners beneﬁt, thereby creating a win-win situation.

Learning from experiences and past mistakes It is not clear if people can learn from the mistakes of others so as to change their attitude and way of working, but it is certainly the role of conferences such as the eHealth 2003 conference to draw out some of the common lessons in order that those who wish to do so can try to learn2 . Accordingly we here draw out a few key lessons: 1) Ensuring a well thought-out eHealth strategy. The strategy for eHealth implementation is more about information and knowledge management than about computers. The strategic planning and execution should not be left to internal organisational IT support staff, but should also supported by experienced external expertise. It is suggested that the longstanding experience of some European countries in development and implementation be examined closely. 2 Iakovidis I, Learning from past mistakes, European Conference on Electronic Health Records (EUROREC’99), pg. 4-9, 1999.

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2) Building s commitment and leadership of health authorities, in particular related to ﬁnancial and organisation issues, is an essential element for the successful deployment of eHealth. For eHealth to improve the way healthcare is provided, it must be combined with organisational changes and the development of new skills in users. 3) Breaking the pattern of ambitious, large-scale, and all-at-once implementation plans. A stepwise approach with smaller and more reasonable goals - while keeping the vision of the future integrated systems on a regional (or enterprise-wide) basis - has proven to be more effective. The ﬁrst stages of implementation should focus on improving the existing work processes and, to make them more effective, only then proceed with the implementation of systems that leads to the re-engineering of work processes (e.g. requiring data entry). 4) Focusing on ‘keep it up’ rather than ‘set it up’. The real challenge for the successful implementation of eHealth solution is much more to keep it up than to set it up. Many buyers still call for products instead of service. In most of the situations it is more about giving the requirements to the contractor, e.g. what (integrated) information is needed where and how fast, and signing a multiyear service contract instead of paying for a system based on a demonstration and training. Implementation is a slow process and needs continuous funding for many years. 5) Understanding user acceptance. How many times have users boycotted a newlyinstalled system in some way? The incentives of all the groups of users have to be clearly identiﬁed and training carefully planned. There is no easy and fast way of overcoming the users’ fear of technology and changes to their way of work. The period of changes in these categories is measured in years 6) Ensuring compliance with existing legal and ethical rules. Many attempts at deployment have failed simply because the users argued about the legality of the process involving IT system. Most of the time this could have been just an argument against using the system, but it is an effective one. A legal framework and requirements on the conﬁdentiality of personal data, including health related data, are now available in EU in the form of the European Council directive (95/46/EC) implemented through national laws. 7) Working co-operatively. No single group (authority, professionals, industry) alone can carry through the implementation of an eHealth strategy successfully. Only through a concerted effort, can we ensure a successful scenario where all parties gain something (a win-win situation).

Way ahead – Community Leadership As the results of the eHealth 2003 conference, and as continuation of the Ministerial declaration (included in the next section), the European Commission decided to issue a Communication on eHealth and Action plan aiming at awareness of beneﬁts, acceleration of beneﬁcial deployment of eHealth and identiﬁcations of further challenges that should be tackled both at European and National levels. The communication was drafted early 2004 and adopted by the European Commission end of April 2004: eHealth - making healthcare better for European citizens: An action plan for a European eHealth Area3 . 3 Communication on eHealth - making healthcare better for European citizens: An action plan for a European eHealth Area http://www.europa.eu.int/information_society/qualif/health/index_en.htm.

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This communication was presented during the Irish presidency eHealth event as one of 3 communications relating to eHealth together with Communications on patient mobility4 and the open method coordination5. The eHealth communication takes a position that eHealth applications are enabling tools for helping health delivery systems to address major challenges of health delivery systems. It goes further to identify the discrete role of all the stakeholders, including the eHealth industry and its potential. It describes in more detail than the previous sections the obstacles in large deployment and gives a current situation of eHealth implementation in Europe. The Action Plan contained in the eHealth Communication is an answer to some of the major challenges in wider deployment and lessons learnt described in the previous sections. It engages Member States and the European Commission to work on speciﬁc actions both separately and together within given time frame. There are many actions varying from collection and dissemination of information to tackling speciﬁc problems such as interoperability, to political commitments regarding deployment roadmaps and solutions to legal issues. The overall coordination is mainly in the hands of European Commission and it will by a joint effort between General Directorate Information Society that has initiated the Communication and Directorates General Health and Consumer protection and Employment and Social Affairs. Currently European Commission examines how to follow up on each of the actions. The collaboration of all the services, Member states and all the stakeholders will be essential in ensuring the success of the exercise. In summary, the European Commission is supporting eHealth more and more broadly. It is supporting the implementation of the research results through initiatives such as eEurope, speciﬁc deployment actions, publishing Action plans and Communications, ministerial and high-level conferences and policies related to beneﬁcial take-up of eHealth - such as mobility of patients and deployment of health cards. It is also launching a new cycle of research in the ﬁeld of eHealth that incorporates new areas of biomedical informatics focusing on integration of health knowledge from other ﬁelds such as microand nano-technologies, bio-informatics and neuro-informatics. These new eHealth solutions will continue to support the health status of persons and populations well into the rest of the 21st century. The time has come for the European Union at regional, national and Union level to address squarely the challenges of eHealth outlined above in order that the full promise of the many exciting best practices gathered together in these conferences can develop into fully ﬂedged eHealth systems which are seamlessly integrated into national health services in such a way that they become as central to health services delivery as handwashing which, we must remember, was once also seen as a new and questionable practice.

4 Patient mobility is addressed speciﬁcally in a Communication from the Commission, COM(2004), entitled Follow-up to the high level reﬂection process on patient mobility and healthcare developments in the European Union. http://europa.eu.int/eur-lex/en/com/cnc/2004/com2004_0301en01.pdf. 5 Communication on open methods of coordination in health http://www.cc.cec/sg_vista/cgi-bin/repository/ getdoc.cgi?full_ﬁle_name=COMM_PDF_COM_2004_0304_F_EN_ACTE.pdf.

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Author Index Äärimaa, M. Andreou, P. Appelbom, E. Balas, E.A. Bergmo, T.S. Bjerregaard Jensen, H. Bountis, Ch. Boyer, C. Cannaby, S. Champleboux, G. Christodoulou, E. Cinquin, P. Claerhout, B. Cobena Fernandez, J.A. De Moor, G.J.E. Duedal Pedersen, C. Dupont, D. Eklund, B. Gann, B. Georgiadis, D. Giordano, A. Glisenti, F. Harno, K. Healy, J.C. Iakovidis, I. Itkonen, P. Johannessen, L.K. Jones, T.M. Joustra-Enquist, I. Kay, J.D.S.

111 205 79 149 79 59 130 159 238 117 205 117 233 139 233 59 233 182 164 205 200 200 101 246 246 94 79 28 182 130

Krishna, S. Larson, M. Lavallee, S. Malmqvist, G. Miller, S. Nerander, K.G. Nurse, D. Orphanoudakis, S. O’Shaughnessy, A. Paddon, K. Panteli, N. Papazissis, E. Pedersen, C.D. Pitsillides, A. Pitsillides, B. Reinhardt, E.R. Samaras, G. Scalvini, S. Silber, D. Smits, S. Suselj, M. Troccaz, J. Vallejo Serrano, F. Van Maele, G. Volterrani, M. Voss, H. Wagner, R. Wanscher, Ch.E. Westcott, D. Wilson, P.

149 41 117 41 169 41 130 66 169 130 205 190 238 205 205 219 205 200 3 230 174 117 50 233 200 238 169 238 238 246

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