thought leaders - cisco · advanced hospital management systems in a new location by henri-arnauld...

Essays from health innovatorsEdited by Kevin Dean

Thought Leaders

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ContentsPreface 2Dr. Kazem Behbehani, Assistant Director General, External Relationsand Governing Bodies, World Health Organisation

Introduction – Essays from health innovators 4Kevin Dean, Director of European Public Sector Healthcare Team, Internet Business Solutions Group, Cisco Systems, Inc.

Enabling patient access and expertise 8Bob Gann, Director, NHS Direct Online, England

Trust and confidentiality in healthcare: working with information technologies 16Dr. Anthony Nowlan, Executive Director of the National Health ServiceInformation Authority, England

Sweden – a test ground for telemedicine/telecare 26Dr. Håkan Eriksson, Department of Woman and Child Health, and Professor Lars Terenius, Department of Clinical Neuroscience, both of Karolinska Hospital, Stockholm, Sweden

The experience of two unusual French hospitals 38Dr Henri-Arnaud Hansske, Chief information officer of Centre Hospitalier d’Arras, France

The Paperless Hospital, the user point of view 50Pierfrancesco Ghedini, ICT and Information Manager at Modena Healthcare Authority, Italy

The Dubai Healthcare City project 58Dr. Martin Berlin, Chief Strategy Officer, Dubai Development & Investment Authority

National policy and strategy for ICT in healthcare: Germany 66Reinhold A. Mainz, Commissioner for Telematics, National Association of Statutory Health Insurance Physicians, Cologne, Germany

Basic concept model of the new national healthcare information system (NSIS) 72Walter Bergamaschi, Director, Ministry of Health Information Systems, Italy

Developments in direction and delivery of IM&T for the National Health Service in England 80Sir John Pattison, Director of Research and Development, and Dr. Peter Drury, Head of Information Policy, Department of Health, England

Cooperative development of the healthcare infostructure for Europe 90Dr. Angelo Rossi Mori, Istituto Tecnologie Biomediche, CNR, President, Centre ‘PROREC Italia’ for the promotion of the Electronic Health Record

Biographies 108

Thought Leaders Essays from health innovators

Preface

Dr. Kazem Behbehani, Assistant Director-General, ExternalRelations and Governing Bodies, World Health Organisation

ealth has been described as auniversal value that transcendsculture and class and isconsidered by the WHO to be at

the heart of human development. It bringspeople together by virtue of being acommon concern. The right to enjoy thehighest attainable standard of health hasbeen enshrined in WHO’s constitution,written more than half a century ago. Yettoday, we still face an intolerable burdenof illness that afflicts many peoplethroughout the world.

Health is also an economic issue.Economic growth, stability, human dignityand the fulfilment of human rights willonly be achieved when people are giventhe opportunity to lead healthy lives. Themost significant measure of human well-being is the status of one’s health.However, healthcare is expensive andbecoming more so every day. A key tobreaking the cycle of disease and ensuingpoverty is effective health promotion andprevention. Many countries are hinderedfrom achieving the goal of ‘health for all’by weak mechanisms in promoting healthand providing health information. Theprovision of electronic health informationis one way to palliate shortcomings.

Information and technology are criticalcomponents of people’s daily lives. Recent

advances in technology andtelecommunications have both brought uscloser and contributed to the wideninggap between prosperity and poverty, andbetween health and sickness. Informationcan either divide or unite, depending onits use. It provides the means either tocorrect social inequities or to create them,enhance development or maintainunsustainable practices. This bookdiscusses important issues on e-health tobring together information, technologyand health, and to highlight the relevanceof information to the well-being ofindividuals and societies.

One of the more important uses ofcommunication technology must be in thefield of health education at all levels, notonly making the knowledge of specialistsavailable to everyone, but also educatingfuture health professionals. As you will seein some of the examples given, theknowledge and understanding of healthprofessionals is critical to the success ofadopting e-health technologies.Furthermore, to keep abreast of the latestknowledge from research in such areas asphysiology, pathology and genetics is anenormous task, yet the skills andcompetence of doctors and healthprofessionals have to be maintained andvalidated. A major advantage ofcommunication technology is thatelectronic materials can be quickly

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updated and disseminated, whereas text-books take time to prepare and publish,and are costly to distribute.

The use of modern electronic media todeliver information, mould attitudes andchange behaviour is a significant newmeans of learning and managinghealthcare, both within and across countryborders. For instance, WHO has developedthe Health Academy to bring healthinformation in easy-to-understand termsto the general public. This initiative uses e-learning to enable people to adopt abehaviour and lifestyle that will keep themhealthy and productive as well asimproving their quality of life. It is onlyone example of the way in whichtechnology can be used for thebetterment of mankind, but one that willhave a lasting impact.

This innovative publication provides thereader with other examples of howtechnology is being, and can be, used toimprove health worldwide. The potentialuse of technology in health is enormousand we have only begun to scratch thesurface. Yet it is encouraging that e-learning for e-health is attracting muchattention, which should help stimulatedialogue between the public, medicalprofessionals and policy-makers. However,to enable populations to benefit requires

not only strong political and materialcommitment on the part of governments,but also partnerships with internationalorganisations and the private sector. Weall have a responsibility to keep healthinformation in the public domain.

‘This innovative publication provides the reader with

examples of how technology is being, and can be, used to

improve health worldwide.’

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Introduction – Essays from health innovatorsKevin Dean, Director of European Public Sector HealthcareTeam, Internet Business Solutions Group, Cisco Systems, Inc.

ccasionally in our working livesthere is an alignment ofpowerful forces that causes atechnology, a management

theory or a new product to resonate withthe broadest of audiences – citizens,private companies, public serviceorganisations and politicians – in manycountries. Often these times are difficultto forecast; often the outcome is difficultto predict with any accuracy. Here in theearly part of the 21st century, there is onetopic that is consistently debated, thehighest priority on the agendas of mostnations, and unlikely by its very nature tofade away – healthcare. There areformidable forces driving healthcare, andin particular the way information is usedto support its management and deliveryup the world’s agenda:

• Ageing populations in the developed world, whose expectations of service and quality of life are ever rising through developments in other industries, be they banking, media, retailing, or leisure

• Massive leaps forward in the tools, techniques and treatments used to prevent and cure diseases, ever adding to the demand and cost of care

• An explosion of public access to information, rapidly accessed through the internet, changing the relationship between patients and the organisationsthat care for them throughout

their illness• Finite resources, even in the richest

nations, that can be devoted to public services

• Increasing mobility of citizens, both inside their own regions or countries, and between countries

• Huge potential for both health-disasters and life-changing improvements in the quality of life,in developing nations, through often simple changes in public and personal health practice

• Rapid adoption of web-based technologies in many industries, and in many countries rich and poor, driving up the productivity and quality of almost all products and services

In particular, the advent of the internettechnologies with the capability toincrease access to information, facilitaterapid communication, reach remotelocations – is giving clinicians, managersand politicians concerned with healthcarethe opportunities to manage and providecare faster, at lower cost and higher levelsof convenience for their patients.

With this book, we want to achieve justtwo objectives. Firstly, to allow innovatorsin the field to set out, in their own words,their experiences of planning anddelivering innovations in managinghealthcare using advanced informationmanagement. Secondly, to reveal through

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their essays that what we see, through ourongoing relationships with these thought-leaders, are some of the most burningtopics in the broad sea of ‘e-health’.

The subject of e-health is a massive one.At one point e-health touches activesurgical intervention – expert surgeonscontrolling robots over a network toperform specialist operations on patients far away, scaling the specialist’sability to provide care beyond their ownhospital. At another point, e-healthinvolves providing potentially millions of health professionals withongoing education via on-line learningthrough video on demand, virtualclassrooms and the like. Still further arethe smartcards, home monitoring, tele-consultations, grid-based distributedcomputing analysing blood test results….the list is almost endless.

Therefore, choosing the topics to coverhere was not simple – almost all areas ofe-health are a fascinating mix of social,financial, political, clinical and technicalissues. There are also marked differencesin approach, priority and practice aroundEurope. However, as we engage atregional and national levels... themanagers and policy-makers of healthcarein the 21st century, there are three themesthat consistently emerge, in allgeographies and all cultures.

Firstly, how does the patient (or whenwell, the citizen) experience change withthe advent of a higher volume of morepersonal, and widely transmitted healthinformation? In particular, what can bedone about two crucial subjects – how toprovide public access to care and diseaseprevention through technology; and theprivacy of health information that must beshared to speed up the journey throughcare? Bob Gann and Anthony Nowlanhave set out their experience from the UK.

Next, what is happening in hospitals andin healthcare communities to takeadvantage of advances in informationsystems? There are thousands of projectsstarting and in progress around Europealone; we have asked experts with verydifferent situations to share theirexperiences – on telemedicine by LarsTerenius and Hakan Eriksson from Sweden;using past experience implementingadvanced hospital management systems ina new location by Henri-Arnauld Hansskefrom France; delivering some of the firsttruly paperless medical centres in theworld by Pierfranceso Ghedini fromnorthern Italy; and on the ambitious plansto create an entire ‘Health City’from Martin Berlin of Dubai, UAE.

Lastly, while there are many examples ofisolated IT initiatives in hospitals oroccasionally in a local community, how do

‘The authors of the essays have a number of distinguishing

features – they have all been deeply involved in intensive

programmes in the key topic areas; they can speak from

real experience often gathered over years of working with

information systems in health.’

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you use IT to improve the cost, speed andquality of healthcare in an entire nation?Or across national boundaries? We haveexamples including three of Europe’slargest health systems (Reinhold Mainz onGermany, Walter Bergamaschi on Italy, SirJohn Pattison and Peter Drury on the UK’sstrategy), with very different approachesto essentially the same underlying issues.Angelo Rossi-Mori completes the picturewith his views on the future of e-health in Europe.

The authors of the essays have a numberof distinguishing features – they have allbeen deeply involved in intensiveprogrammes in the key topic areas; theycan speak from real experience, oftengathered over years of working withinformation systems in health as eitherusers, implementers or policy-makers; allhave a unique insight to contribute, basedon their core expertise, the culture ororganisational structure in which theywork. As a group, we have drawntogether authors from very differentorganisations, roles, countries andcultures, to help get a perspective on

the common factors and differences inapproach needed to deliver e-healthsuccessfully. We are also privileged to have a wider perspective on e-health and its importance around the globe inthe preface by Dr Kazem Behbehani of the World Health Organisation.

As you move through the chapters, it maybe useful to have a reference model for e-health to help put the contributors’points into an overall context. Figure 1right sets out one such model, segmenting the various elements of an e-health strategy. All our experience inworking in e-health tells us that thesuccessful strategy, whether at local ornational level, needs to embrace allelements; to have a balance across theportfolios; and support clinicians andpatients through the considerable changes in the delivery of healthcare.

Throughout all the information containedin this book, we hope you will be able todiscern a number of basic realities aboutsuccessful e-health:

Introduction – Essays from health innovators

Secure, Intelligent, High-Speed Infrastructure

Target Funding, Strong Governance, Manage Implementation and

Change Working Practices, Increase IT Competence, Work with Industry

Portfolio 1 – Clinical tools Health Records,

Prescriptions Service, Appointment Booking,

Patient Access, Images, Telemedicine

Portfolio 4 –PatientServices

Web foundations – Directory, e-mail, Consent/Authentication

Portfolio 2 – Knowledge

Management & e-Learning

Portfolio 3 – e-Enablement

e-ProcurementE-HR,

e-Finance

Perfo

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Perfo

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Figure 1 – e-health reference model

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• The importance of standards in bridging the organisation and geographic gaps in healthcare provision

• No e-health service can be effective without a reliable, secure infrastructure that allows controlled access to patient and management information, knowledge and transactions

• Health workers and patients both need to understand the full power, and associated responsibilities, that end-to -end information systems bring to care delivery – e-health does not automate paperwork, it changes the way people work;

• The value that information management support for healthcare can bring is immense, offering everything from shorter hospital stays and waiting times for operations toradically lower costs of healthcare over a patient’s life. Obtaining these benefits requires a much more cohesiveapproach at community, regional, national and international levels

• A change from the past where activitieshave been mainly at very local levels

We hope that by reading through thefollowing practical experience and viewsof our contributors you will have access tovaluable lessons that accelerate your ownsuccess in e-health.

Introduction – Essays from health innovators

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Enabling patient access and expertiseBob Gann, Director, NHS Direct Online, England

t the beginning of the newmillennium, we are entering anew era – the era of patientexpertise. In the old era (the

20th century), expertise was seen as thepreserve of highly qualified doctors andother health professionals. Major socialchanges have now called into question ourunderstanding of where expertise lies. Theshift in the burden of illness from acute tochronic conditions has created ageneration of people living with long-termillness and disability (known as expertpatients). At the same time, revolutionarydevelopments in information andcommunications technologies are enablingdirect access for patients to healthcareservices and knowledge sources previouslyonly available to professionals.

21st century healthcare

Early in 2003, the UK Chancellor of theExchequer committed significantadditional funding to the National HealthService. The Chancellor also commissioneda leading banker, Derek Wanless, toproduce a report on how the new fundingmight most effectively be spent (1).

Wanless identified the following keydrivers for 21st century healthcare:

• 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 investingin support for self-care. A 21st centuryhealth service can support self-care byenhancing people’s independence andexpertise through investment ininformation, skills and technology. Thereport suggests that by 2020 visits tofamily doctors could decrease by 40% andvisits to hospital outpatient departmentsby 17% due to increased self-care, bothfor everyday health problems and chronicillnesses. For every £100 spent onencouraging self-care, about £150 ofbenefit could be delivered in return.

Expert patient

In the UK, at any one time, as many as 17 million adults are living with a chronicillness (such as heart disease, arthritis,diabetes, asthma, epilepsy, mental healthproblems etc). People have informationneeds specific to their individual illness

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but there is also a core of common needs.These include: recognising and acting onsymptoms; dealing with acute attacks;making the most effective use ofmedicines and treatment; and accessingsocial care and other services.

Patients live with chronic illness every hourof the day, every day of their lives. Theyacquire considerable personal expertiseand doctors often observe: ‘My patientunderstands their disease much betterthan I do.’ (2) Recognising that theknowledge and expertise held by thepatient has for too long been an untappedresource, the Department of Health hasnow developed an Expert PatientsProgramme (3) aimed at improvingknowledge, skills and confidence, so that patients can take effective control of their own lives.

Shifting the information fault lines

Rapidly increasing access to informationand communication technologies (ICTs)has been one of the most significant socialrevolutions of the past ten years. Currentestimates suggest that, worldwide, over500 million people have made use of theinternet (4). By the end of 2002, 45% ofUK homes were connected to the Internet(a figure that has risen from only 10% in1999), with an average online time ofeight to nine hours per week. Accessing

health information is one of the mostcommon reasons for going online. Surveyssuggest that up to 75% of all web usershave accessed health information, andthose that do so access health informationthree times a month (5).

The web revolution has undoubtedlynarrowed the old information dividebetween professionals and patients. Inprinciple anyone can access most forms ofknowledge – and anyone can publish –quickly, cheaply and with potentially verywide readership. Developments ininformation and communicationstechnologies are opening up to patientsand the public information sources thatwere once the exclusive preserve ofprofessionals. At the same time, patientsand carers are able to share theirknowledge and experience with others,wherever they may be in the world.

In the past we have approached healthinformation with a clear segregationbetween patient and professionalinformation needs. However, a more validdistinction is between expert users (wholive or work with a health issue on a dailybasis) and occasional users (who may haveonly occasional information needs on thetopic). But despite this shift, new faultlines have been created. It would bewrong to assume that we are all expertsnow. Significant disadvantage remains,

‘Developments in information and communications

technologies are opening up to patients and the public

information sources that were once the exclusive preserve

of professionals.’

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such as access and poverty ofunderstanding.

Poverty of access

While, on the one hand, technologicaladvances have been a force forinformation equality between patients andprofessionals, on the other there isconcern that new technologies mayfurther exacerbate health and socialinequalities. The ‘digital divide’ mayexclude the poor, the homeless, refugees,people from ethnic minorities and peoplewho are illiterate, disabled or elderly –exactly those groups who may have thegreatest health needs and unequal accessto health services.

Figures from the UK (6) confirm thatinternet users tend to be young (48%under 35, only 11% over 55), affluent andemployed. Only 16% of those aged over65 have access to the internet, and thereare regional variations with more peoplein the affluent south of the country usingcomputers, compared with the moresocially deprived North and Midlands.

However, the rapid take-up of digitalinteractive television in the UK offers realpotential for widening access tohealthcare information and transactions.Penetration of digital TV into UK homes isnow very similar to that of the internet(about 45% of homes in each case). Earlyadopters of digital TV have tended to bein lower socio-economic groups (7), andthe availability of large numbers ofspecialist-language channels also makesdigital TV attractive to minority ethniccommunities. The UK now enjoys the mostdiverse and advanced interactive TVenvironment in the world, well ahead of

the rest of Europe – the European averagefor digital TV take-up is about 19%, lessthan half of that enjoyed in the UK (8).

Poverty of understanding

Decreasing the digital divide is not,however, simply a question of providinggreater access to more information. To bereal experts, people also need the toolsand skills to make the best use ofinformation. There is no doubt that healthinformation on the internet is of veryvarying quality. Health professionals havetheir subject knowledge, and oftentraining in critical appraisal skills, to helpthem sift the good information from thebad. Although there are now a number ofprogrammes teaching critical appraisalskills to patients and consumerrepresentatives, members of the publicoften do not have this expertise.

As a result, a number of initiatives havebeen developed to identify quality criteria,which can be used by professionals andlay people alike to assess the quality ofhealth websites. These tend to have threemain approaches:

• Codes of conduct or ethics• Systems of accreditation• Evaluation tools

Quality of health information on theinternet has been the subject of a themeissue of the British Medical Journal (9).

Despite these concerns, there is growinginterest in the opportunities offered byequal access to knowledge to supportshared decision-making between patientsand professionals (10,11).

Enabling patient access and expertise

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E-health services

The revolution in electronic access(particularly the digital interactive TVboom) provides the opportunity for accessto much more than information. Over thenext ten years we can expect to see thedevelopment of a range of e-healthservices increasing patient involvement,enabling online transactions – andsupporting home health monitoring and telemedicine.

Patient involvement

Interactive television will be used as a toolto promote healthy lifestyles, particularlyamong harder-to-reach groups like youngmen. ‘Enhanced programming’ providesviewers with the option of pressing theirinteractive button to call up informationon a health topic that may be featured ina popular drama or current-affairsprogramme. Relating health issues toprogrammes with mass appeal in therelaxed environment of TV viewing couldbe a powerful communication channel.

Quizzes, surveys and online ‘voting’ haveproved popular in other areas ofinteractive television (eg: a national IQ testcarried out by the BBC, reality shows suchas Big Brother, etc). Health calculatorsincluding body mass index, diet calculatorsand life expectancy are likely to be

similarly popular health applications.

The internet has proved particularlysuccessful in building communities ofpeople with similar interests regardless ofgeography. Chat rooms have provedvaluable for providing mutual support andsharing expertise for people dealing withlife issues (such as having a baby), orcoping with illness and disability. Less welldeveloped to date, but with potential forthe future, are ‘virtual consultations’,where a patient talks to a doctor, nurse orother health professional in a private webchat environment.

Online transactions

In the UK there is a governmentcommitment to all patients having accessto their own health record. This will not beachieved without exploiting access to‘here and now’ technologies, including theinternet and digital television. Citizens arefamiliar with appropriate security andauthentication procedures that allowsecure online transactions in banking andcommerce. Similar mechanisms will enablepatient access to their electronic healthrecord anywhere in the world from aconvenient web browser. Patients will alsohave the opportunity to create their ownpersonal health organiser, recordingmedications, appointments, care wishes,and next of kin details. The personalhealth organiser will also provide anenvironment for patients to record theirown experiences of illness, treatment andcare (and to share this with who theywish). They can also select health topics of interest and receive regularupdates on news, research, etc, relevant to their concerns.


Relating health issues toprogrammes with mass appeal inthe relaxed environment of TVviewing could be a powerfulcommunication channel

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There is a huge cost to healthcare systemsin ‘did not attend’ for appointments andnon-compliance with medicines. Onesolution may be patients choosing toreceive reminders by email or SMS textmessage. Other healthcare processes thatare particularly appropriate for electronictransactions include bookingappointments, ordering repeatprescriptions and tracking test results.

Home health monitoring

Electronic home health monitoring wouldhave clear benefits in supporting themanagement of people with conditionssuch as diabetes and asthma. For example,a patient with diabetes could input theirdaily blood glucose level into theirinteractive television set-top box foranalysis. Both the patient and relevanthealthcare professional could be alerted toany areas of concern, and an appointmentbooked online if necessary.

In future, rather than relying on themanual entry of data, a range of devices(eg: heart rate monitors) could beconnected to the set-top box via infra-red connection.

Case study: NHS Direct

Since its launch at three pilot sites in1998, NHS Direct has become the largestprovider in the world of direct accesshealthcare using modern communicationtechnologies (12). NHS Direct provides24/7 access to clinical advice andinformation, providing self-care guidanceor referral to appropriate healthcareservices. The nurse-led service has nowexpanded to cover the whole of Englandand Wales via 23 call centres, and is now

being implemented in Scotland (asNHS24). NHS Direct now handles about six million calls a year, projected to rise to16 million a year by 2006.

NHS Direct harnesses new technologies to deliver healthcare services direct topeople’s homes. It allows people to accessinformation and advice 24 hoursa day, seven days a week, enabling themto make better informed choices aboutthe range of healthcare options availableto them.

From the outset, NHS Direct recognisedthe contribution that clinical decisionsupport systems – software systems thathelp nurses in their assessment of patients– could make in ensuring a consistentlysafe service. At the piloting stage, a varietyof clinical decision support systems wereused. However, from October 2001, all 22NHS Direct call centres have been usingthe same system, the NHS ClinicalAssessment System.

Virtual contact centre technology allowsNHS Direct to move calls around sites toensure the best fit between demand andcapacity; handle service or system failurein individual call centres; recruit ingeographic areas where it is easiest torecruit staff; and close individual centresfor training, staff development, or systems maintenance.

NHS Direct Online

Following the establishment of the firstNHS Direct telephone call centres, theservice moved promptly towards thedevelopment of an NHS Direct website.NHS Direct Online was launched by the UKPrime Minister, Tony Blair, in December


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1999 and has established itself as Europe’sleading health website (13). This wasrecognised in May 2003 when it won theeHealth Europe Award for EmpoweringCitizens in Management of Health andWellbeing at the European Commission in Brussels.

HealthSpace

NHS Direct Online has been piloting apersonal health organiser called My NHSHealthSpace. This is a secure webenvironment in which users can recordtheir own personal health information (eg:blood group, medication, vaccinations,allergies, appointments) and care wishes(eg: birth plans, organ donation). Areminder option by email or SMS textmessage is also available forappointments, medication etc.HealthSpace can also act as a mailbox forresponses to personal health informationrequests submitted to the NHS DirectOnline Enquiry Service, and a channel forselective personal news feed on healthitems of interest has been developed.Password permission to the user’sHealthSpace could be shared with apartner, carer or doctor if wished – and ofcourse HealthSpace goes with youanywhere in the world so long as you canlog on to the internet.

HealthSpace has been piloted with a smallgroup of patients in Oxford in 2002-3 and

is available as an option on the NHS DirectOnline website. NHS Direct Online is nowworking with the National Programme forIT to develop HealthSpace as a web portalthrough which patients can access theirelectronic NHS record.

NHS Direct Digital TV

During 2001-2, digital TV pilots wereestablished in several parts of the UK –providing access to NHS Direct Onlinecontent, which has been redesigned forthe digital TV medium, as well as tospecially commissioned programming onhealth topics. The largest of the pilots,Living Health in Birmingham, also provideda GP appointment booking facility and,through the NHS Direct In Vision initiative,allowed users to see the NHS Direct nurseon screen when contacting the local NHSDirect call centre.

Evaluation of the pilots by City University(14) proved very encouraging with goodinitial take-up of the services and positiveuser experience. Following the pilotprojects, work has now commenced todevelop and implement an NHS Directinformation service across all digitaltelevision platforms nationwide. Theservice will start in 2004 and provideinformation on health conditions andtreatments, medicines, local NHS services,health advice for travellers, etc. There willalso be further pilots of opportunities fordelivering healthcare transactions viadigital interactive TV.


HealthSpace is a secure webenvironment in which users canrecord their own personal healthinformation and care wishes

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The 21st century patient

So how will technology transform patientexperience in the 21st century? We willsee patients accessing healthcare througha range of channels, including telephonecall centres, websites, public kiosks,mobile devices and digital interactivetelevision. As internet penetration reachesa plateau at about half the population wecan expect to see digital televisionbecoming the access medium of choice formany people. Digital television will reachpopulations currently untouched by theinternet, enabling us to go some waytowards bridging the digital divide. Thesetechnologies have enormous potential tosupport appropriate self-care and chronicdisease management, to enablemonitoring and support for conditions athome, and to involve patients as activeand informed partners in their own health.

References

1. Wanless, D. Securing our future health: taking a long-term view London: HM Treasury, April 2002

2. Kohner, N. & Hill, A. Help! Does my patient know more than me? London: Kings Fund, 2000

3. The expert patient: a new approach tochronic disease management for the 21st century, Department of Health, September 2001

4. NUA Internet Surveys: How many online? (August 2001)

5. Taylor, H The Harris Poll: cyberchondriacs update (April 2001)

6. Age Concern, Older People and IT May 2000

7. Go digital, ITC April 2003

8. European digital pay television platforms: market assessment & forecasts to 2006, Screen Digest, March 2003

9. Trust me, I’m a website: theme issue British Medical Journal 324(7337), 9 March 2002

10. Bessell T L et al. Do internet interventions for consumers cause more harm than good? A systematic review. Health Expectations 5: 28-37, 2002

11. O’Connor A et al. Decision aids for patients facing health treatment or screening decisions: systematic review. Cochrane Library, Issue 4, 2002.

12. Jenkins, P & Gann, B Developing NHS Direct as a multi-channel information service, British Journal of Health Care Computing 19(4), 20-1, 2002

13. Jenkins, P & Gann, B NHS Direct Online in 2003, British Journal of Healthcare Computing & Information Management 20 (6) p25-27, 2003

14. Nicholas, D et al, First steps towards providing the nation with healthcare information and advice via TV sets, City University, London, December 2003


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Trust and confidentiality in healthcare: working withinformation technologiesDr. Anthony Nowlan, Executive Director of the National HealthService Information Authority (NHSIA), England

onfidentiality is one of the mostconfusing and contentious issuesthat arise in the course ofapplying information technologies

in healthcare. At heart the issue appearsstraightforward. Individuals – patients –impart highly personal information to theircarers and advisors and expect thatconfidence to be respected. The trust thisestablishes is a foundation of healthcare.Legal, professional and ethical principlesexist in most jurisdictions to protect thattrust. However while the issue may besimple at heart, the realisation in modern healthcare practice is far fromstraightforward. All too often a seeminglymodest proposal to improve some aspectof the delivery of health care, such as thebetter management of scheduling, canbecome tangled in a web of issues underthe heading of ‘confidentiality’. There aremany arguments and counter-argumentsamidst a daunting collection of issues thatrange from the practicalities of a PublicKey Infrastructure through to therelationship between teenage children and their parents over contraception.

In this essay I wish to provide a set ofprinciples or perhaps just insights to helpthose who are wrestling with such issues.My central argument is that the key toprogress is the realignment of informationmanagement and issues of confidentialitywith the basic principles of health carepractice. We must stop seeing the

management of information as separatefrom and unlike other health careactivities. In addition there is no singletechnical action that can ‘fix the problem’.Progress requires coordinated technical,clinical, policy, and societal actions and Iwill list challenges to a variety ofconstituencies.

This essay draws on my recent closeexperience of working on confidentialityand privacy issues in the National HealthService (NHS) in England. This workinvolved extensive research andconsultation on new proposals withpatients, carers, the public, healthprofessionals and other interested parties.I shall also draw on my time in clinicalpractice and health informatics researchand development both in academia andindustry. This essay is not, however, anaccount of the specific policies beingfollowed in England. I seek to identifycommon principles that may apply acrosshealthcare systems.

Encountering confidentiality

The issue of confidentiality is perhaps themost common challenge facing thosetrying to design and implementinformation systems in healthcare. It ishowever, not unusual for that to berealised rather late in the day.

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Early in the life of a project to implementa system containing personal healthinformation, system security is alwaysrecognised as important. A cluster ofissues are identified to be managedtogether, including security andconfidentiality, often spoken of as nearsynonyms. Considerable effort goes intoidentifying technologies that providestrong system defences against externalattack and, given it is healthcare, the costsare justified.

The challenge to these plans for securityand its close relative confidentiality comefrom two possible sources. The first sourcecan be internal. The implementersthemselves during the course of the workencounter many anecdotes, concernedindividuals, and views on what is needed.They realise confidentiality is a complex,potentially contentious issue, with no clearand agreed specification of what isrequired. Extensive debate can result,raising risks to the scope, cost, andtimescales of the work.

The second source can be an interestedexternal party who realises what theproject is aiming to do and challenges it.Confrontation frequently results. Theimplementers are caricatured as violatorsof civil liberties. The implementers asindividuals, wishing only to make theworld a better place, cannot understand

why they are demonised. They label theobjectors as an extremist minority.Positions seem irreconcilable. No amountof technical reassurances makes adifference. If the external forces aresufficiently influential a veto is exercised.Work may stop.

Preventing such scenarios requires twothings: sufficient time and an appropriateapproach to decision-making. The time isneeded for debate and consultation, andthis must take place before decisions onspecifications are taken. Perhaps thegreatest risk is fear and confusion. Thedebate informs the design and also givespeople the time they need to understandand reflect on any proposals. This isessential for support and trust. This timemust be planned for.

The appropriate approach to decision-making is more complex and perhapsunfamiliar to information technologyspecialists. All too often the variousstakeholders, protagonists and antagonistsare seeking an absolute answer based on,for example, a technical or legal solution.But such absolutes are rarely, if ever,found in healthcare. To make progress wemust realign the management ofinformation and confidentiality withoverall patient care and draw on thewealth of experience gained in dealingwith analogous problems such as in the

‘Modern healthcare needs highly connected systems to

manage care safely and efficiently. Information technology

is just as much a necessary health technology as any drug

or surgical instrument.’

18

treatment of diseases. The basic principleis one of balancing health benefit againstrisk. To apply this to informationtechnology we must position it as a healthtechnology and examine the drivers for its use, the argued benefits, and thepossible risks.

Information technology as a health technology: what is thedriving need?

It is not uncommon for changes inlegislation to be cited as the root of ourcurrent difficulties – ‘patients have morerights’. This sees the problems as beingimposed on healthcare from outside andis a seriously limited perspective. If theduty of confidence is a foundation ofhealthcare practice, expressed for example through professional ethics, then it is there we must look to bothunderstand the changes that are takingplace and find pointers to their resolution.I consider those changes under threeheadings: medical science and healthcarepractice; peoples’ expectations, and finally, legal context.

Medical science, healthcare practice and the need for information technologies

In times past, healthcare was muchsimpler. A patient’s care was given by afew individuals such as the family doctorand perhaps a single doctor at the localhospital. Those times are rapidlydisappearing and in many areas have longsince gone. Driven by the relentlessadvances in biomedical science, thedevelopment of new diagnostic tools andtreatments, and the resultantspecialisation, the practice of medicine

involves more people than ever before.The treatment of common conditions nowrequires many individuals to work inteams to care for an individual patient.

The growth of specialisation andconcomitant economic pressures has ledto diversity of provision. Public, private,and voluntary sector institutions areproviding services to the same patients. A wider range of professionals such ascommunity pharmacists are playing abigger role in looking after patients andinnovative telephone-based and onlineservices are changing how we gain accessto care. Increasingly, health and personalsocial services are combining, particularlyin care for elderly patients. And, perhapsmost significantly, patients themselves andtheir families expect and are expected toplay a bigger part in looking after theirown health. These scientific, professional,and organisational developments offer thepossibility of great benefits to patients butlike all ‘advances’ in health care there arecorresponding problems.

There is now well-documented evidence ofthe routine failure of individual patientcare in our increasingly complexhealthcare systems. For example, the USInstitute of Medicine (IOM) cited in 2000the findings of two large hospital-basedstudies which, if replicated across the USA,suggest a conservative estimate of 44,000Americans dying from medical errors eachyear1. This makes medical errors the eighthlargest cause of death in the USA, coming ahead of automobile accidents,breast cancer and AIDS. In addition, theIOM reported in 2001 that we fail toexploit what science has made possible,with the average time between anintervention being demonstrated to be

Trust and confidentiality in healthcare: working with information technologies

1 To err is human: building a safer health system, Institute of Medicine, USA, 2002

19

efficacious and its widespread adoption inday-to-day practice being 17 years2. In theUK, research suggests that in NHShospitals alone adverse events in whichharm is caused to patients occur in about 10% of admissions – or at a rate in excess of 850,000 a year, and cost theservice an estimated £2 billion a year inadditional hospital stays alone, withouttaking any account of human or widereconomic costs3.

It is now openly acknowledged that thesefailures involve skilled doctors anddedicated nurses. Most are not simplefailings of those individuals; they are thoseof a system – the health system.Developments in medical science andclinical procedures have long sinceoutstripped our ability to organise anddeliver care. By any measure, our ways ofdelivering appropriate care are failingprofessionals and patients. The IOM states:

‘Poor designs set the workforce up to fail,regardless of how hard they try. If wewant safer, higher quality care, we willneed to have redesigned systems of care,including the use of informationtechnology to support clinical andadministrative processes.’

Without access to appropriateinformation, a health system is at bestinefficient and frustrating and at worstdangerous. Modern healthcare needs

highly connected systems to manage caresafely and efficiently. Informationtechnology is just as much a necessaryhealth technology as any drug or surgicalinstrument. The basic requirements onsuch environments are not surprising.Those providing care, if appropriate,typically want information on currenttreatments, major health problems, pastprocedures and so on. Patients and thepublic, when asked, want those providingcare to have the relevant up-to-dateinformation. They recognise, however, that more efficient sharing of healthinformation presents some risks.Information shared inappropriately withinhealthcare could affect the way people aretreated by health and other public services(eg about terminations of pregnancy,debt, literacy or mental health problems).As medical science develops, more willbecome known, not only about people’spresent health but also about their futurehealth. If this information isinappropriately shared outside healthcare,it may prejudice people’s ability to getjobs, life insurance or mortgages. Thecentral point is that the very things thatpromise benefits also bring risks. The two,as with other health technologies such asdrugs, are inextricably bound together. I shall return to this point.

People’s expectations

The late Roy Porter described how around1800, with the birth of clinics, the sickman became a patient and progressivelydisappeared into the equations of healtheconomics, sociology and diagnostictechnology4. Patients were discouragedfrom asking for information about theirhealth and had little or no choice overtheir treatment.


Medical errors are the eighthlargest cause of death in the USA,coming ahead of automobileaccidents, breast cancer and AIDS

2 Crossing the Quality Chasm: A new health system for the 21st century, Institute of Medicine, USA, 20013 An organisation with a memory: Report of an expert group on learning from adverse events in the NHS, HMSO, London

2000 ISBN 01132244194 The greatest benefit to mankind: a medical history of humanity by Roy Porter, WW Norton & Co, 1997.

20

Porter called this ‘medical body-snatching’.Expectations of both patients and thosecaring for them are, however, nowchanging. Patients expect more medicalpossibilities, choice of services provided attheir convenience and greater control overtheir care. The old certainties of thecaptive patient have gone and thepressure is on to produce the body thatwas snatched. This further increases thefluidity and complexity identified aboveand demands sophisticated ‘patientrelationship management’ systems tomanage care safely and efficiently. It alsomeans the use by patients themselvesmust be fully part of the design of anyinformation management system.

Legal context

Despite my introductory remarks, the legalcontext is self-evidently important. Lawsdiffer from one jurisdiction to another, butin all we see stronger legislationcontrolling the handling and use ofpersonal information. In the UK the DataProtection Act 1998, the Human RightsAct 1998, and the common-law duty ofconfidence, together with professionalethics, all protect the privacy of patientsand their health information. Typicallyinformation that identifies individualpatients must not be used without thepatient’s informed consent. Depending onthe circumstances, consent can either beassumed (implied consent) or activelyasked for (express consent). What isessential is that the patient understands to what they are consenting.

It must, however, be recognised thatcompliance with the law is a necessary butby no means sufficient requirement. Aneffective healthcare system requires high

degrees of trust and confidence in thesystem, both from patients and theprofessionals providing care. If this trustfails then no amount of formal legalcompliance can compensate. Patients andprofessionals will manipulate the recordkeeping mechanisms, even to the extentof keeping dual records. This has beenobserved, for example, in situations wherethe clinicians believe health insurers haveinappropriate access to detailed clinicalinformation, and that access is forcingclinical actions that run contrary to theirprofessional judgement. Such abreakdown in trust is in nobody’s interest.

Principles

While the changes outlined above presentchallenges, they also point the way tosolutions. Below I present a set ofprinciples to help guide the developmentof an integrated approach to themanagement of confidentiality as weintroduce information technologies into healthcare.

See confidentiality as a shared asset,not a problem

The first principle concerns attitude. Inhealthcare we are given the legalpermission and the assent of individualsand society to ask things and perform actsinvolving instruments and toxic substanceswhich in any other context would be aserious criminal offence. That people willimpart their deepest confidences tostrangers they met a few minutespreviously is an enormous asset and aprivilege to be valued by those providingcare. It is not a ‘problem’ to be overcome.This asset helps us achieve our objectivesbut to exploit it we must involve people in


21

decision-making. This is a sharedresponsibility.

Be explicit about benefits, risks, andresources

Confidentiality must be considered interms of both the benefits of highlyconnected information systems and notjust the risks they may pose. Far too oftenonly risks are fed into the equation. Ananalogy would be a doctor offering atablet to a patient and only telling themof every conceivable side effect andpossible adverse event (which probably forevery drug includes in some rare situationsdeath), without explaining the healthbenefits of taking it and the consequencesof not taking it. Any rational person wouldreject the offer. Every healthcare decisionis a benefit-risk judgement, and theexploitation of information technologiesto provide health benefits is at a basiclevel no different.

The benefits and the risks are inextricablybound together. We must develop oursystems to maximise the benefits andminimise the risks, but at some point ajudgement has to be made. Healthcarehas, over many decades, developed andrefined methods for informing these sortsof judgements. For example, the clinicaltrial and the regulatory mechanisms todetermine when a drug is fit for use. Themechanisms take into account both theseverity of the disorder being treated andthe potential adverse effects. We toleratepotentially serious side-effects from a drugto treat cancers that are unacceptable in adrug to alleviate the symptoms of a cold.We must learn from these experiences andseek to apply them to the management ofhealth information.

Incorporate individual judgements andchoices

While the knowledge of benefits and risksinform decisions, the final judgement isalways an individual one. Research hasshown that we differ in how we weigh thefactors and make the trade-offs. Theexample of an individual with HIV/AIDS isfrequently cited as a straightforward casewhere information should be madeparticularly difficult to get hold of.However, when asked, some affectedindividuals place more weight on the risksto their health of clinicians treating them,unaware of the details of their condition,particularly in urgent situations, than onany general risks to confidentiality. Somemay take the converse view. Also, ourviews change over time. We may not betoo concerned over who knows of apossible diagnosis of high blood pressurewhen 21, but it can feel very different inone’s late forties, with issues of insuranceand employment heavy on the mind.

There are no absolute rules and we mustadopt systems that can reflect individualdiversity. It will not be possible toaccommodate every wish and nuance, but we must determine an appropriate,acceptable balance. Again this is nodifferent from other aspects of healthcare practice.

Ensure people are informed and ableto respond

If confidentiality is a matter of judgement,balancing benefits against risks, thenpeople must be informed in order to makethat judgment and respond, ie giveconsent. This does not mean that peoplehave to be continually signing pieces of


22

paper, which in itself does not guaranteethe individual is informed. People may beinformed through general mechanisms,such as public information campaigns, orspecific individual explanations, dependingon the circumstances. This is very similarto the wider consent to care. For example,research with patients shows they expectthose directly involved in their care toshare the information needed to providethat care, when for example a referral ismade for specialist treatment. They aren’t,however, typically aware of the otherpotential uses of health information, in forexample research, audit, and theadministration of health services. Thesedifferences must be understood andappropriate information provided topeople either generally or specifically.

Patient confidentiality is about people,not institutions

The management of confidentialitycontinues to be based primarily onorganisational constructs such ashospitals, doctors’ offices and overarchinghealth departments or authorities. Indeed,patient confidentiality is often equatedwith guarding the information assets ofthe institution and determining thecircumstances under which institutionsmay share information. This is protectingthe wrong thing: the institution ratherthan the individual. It can lead to bothsins of commission, when information isinappropriately shared within aninstitution, and sins of omission, wheninformation is not shared acrossinstitutions for the benefit of the patient.

Patient confidentiality is about people, notinstitutions. The institution can no longeract as a proxy for the patient’s interests.

The task is to guard an informationenvironment centred on the individual notthe institution. We often speak of theimportance of ‘continuity of care’. Well,‘continuity of confidentiality’ is nodifferent. This principle has a significantimpact on the design of systems formanaging confidentiality, both technicaland procedural. It is just one aspect of thewider challenge of providing person-basedsystems that help secure the integrity ofindividual care across institutionalboundaries and over time.

Governance is integral to the design

Many existing systems of governance, likethe information systems themselves, aredesigned around institutional constructs,such as hospitals, with which patients’have discreet relationships. If you have aproblem you challenge the relevantinstitution. As healthcare moves tonetworks of care this model breaks down.A patient is dealing with a whole systemwhose internal complexities are unknownto them. For example, when somethinggoes wrong it will be very difficult for theindividual to determine who is responsiblefor dealing with their complaints. Likewisethe individual clinicians will increasinglydepend on the information capabilities ofother parts of the whole system. Forexample, a family doctor will need toentrust information obtained inconfidence to a whole variety of specialistproviders that he or she may have nevermet. All parties need confidence in ‘the system’.

The governance of the whole informationenvironment is an integral part of thedesign of that environment. Appropriatemutual assurances are required and all


23

parties must know and have confidence inthose who provide those assurances. Ifproblems occur, then people mustunderstand to where they go to seekredress, particularly following complexsystems failures. Governance is a complexmix of legal requirements, societalexpectations and customs, andprofessional duties and regulation, so noone solution will suit all jurisdictions. Itmust, however, be addressed from theoutset to ensure it is appropriatefor the task.

5. Challenges to four constituents

When introducing new informationsystems into health we are not justautomating practices. We are makingpossible new approaches to care, affectingthe technical, organisational, professionaland societal aspects of care. The principlesabove can help with crafting those newapproaches:

• Promulgate a positive attitude and shared ownership of the asset

• Apply a healthcare benefit versus risk approach

• Incorporate individual judgements and choices

• Ensure informed and enabled patients;• Design around people and not

institutions

• Integrate governance into the design

However, no single constituency can alonedeliver on even these principles, and I amsure there are many more. I conclude withsome of the challenges to thoseconstituencies.

To the information and health systems experts

The pervasive theme is one of systemsdesigned around the individual. The risks,the benefits and the choices are all inrelation to an individual. The challenge isto define, construct, secure and managesuch person-based environments that canendure across institutional divides andover time. This brings some obviouschallenges, of which I mention two.

Many people will want at some time andsome place to interact with thatinformation environment, most typically toprovide care to the individual it concerns.Research with patients shows that accessto this information should be on a true‘need-to-know’ basis. This involves boththe role of the provider (such as doctor,nurse, clinic administrator, etc) and theirrelationship with the individual (ie thatthey are legitimately involved in their careand are not for example just any doctorwho wants to have a look). Theserequirements demand the management ofidentity, roles and relationships over timein relation to the individual patient, notjust the institutions. Our abilities to deliveron these requirements have progressedsignificantly, but more is required.

Respect of individual choice andjudgement requires a degree of‘personalisation’ of the environment. In


Patient confidentiality is oftenequated with guarding theinformation assets of theinstitution...This is protecting thewrong thing: the institution ratherthan the individual.

24

the UK, for example, the proposal is forpatients to be able to request specificinformation and be subject to additionalaccess controls which they grant. Whenchoosing to use these extra controls,individuals must be informed of anypotential problems they may create fortheir care. Systems will need to managethese choices and provide practicalchannels through which patients canexpress their wishes. This includes thesocial and organisational aspects as wellas the technical, recognising thatindividuals vary greatly in their desire and ability to affect such choices.

To policy-makers and regulators ofinstitutions and professions

The main challenge to this group is theestablishment of appropriate governanceand the ensuring of mutual trust andappropriate risk-sharing among thestakeholders. The arrangements will differfrom one setting to another, but healthcare is a strategic capability andconfidence in the system is a strategic responsibility.

To healthcare professionals

Healthcare professionals need tounderstand how the management ofinformation is fully part of caring for theirpatients and should integrate it as suchinto their practice. If they do this thenmany of the issues with confidentiality willalign with familiar concepts such as theirrelationship with the patient, their duty ofcare and to inform, clinical standards ofcare, the responsibilities of the patientsthemselves, and their relationship withprofessional colleagues. At the same time,the introduction of systems in which the

provider is no longer the sole locus ofcontrol, with diversity of individual patientpreferences, the provision of support forinforming patients and patientparticipation will make demands. As withthe introduction of any health technologythey will need the knowledge, skills, andresources to the job properly. Thosedemands will need to be properly judgedagainst competing demands on healthcareresources, and healthcare professionalsneed to lead in that assessment.

Patients

Ideas of person-based informationenvironments and the patient havingcontrol over that environment is thelanguage of empowerment. With thatempowerment come the inevitableresponsibilities. People vary greatly in theirdesire and ability to take control of theirhealthcare and their preferred balance ofdecision-making between themselves andtheir professional advisors. Theinformation aspects of their care will beno different. Individuals will, however, ingeneral need to take more care of theirinformation, its accuracy and who is usingit – a kind of self-care for information. Todo this people need to have a much betterunderstanding than they do now of theirhealth information, what it is and whathappens to it. This cannot be a purelypassive thing and patient groups or similarbodies are needed, focusing on thisimportant issue.


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And finally

I have outlined what I believe are someimportant principles that appear to havehelped in moving forward practical issueswith the introduction of informationtechnologies and the management ofconfidentiality in a large health system. I close, however, by emphasising the needfor a positive attitude. Confidentiality isoften referred to as ‘the poisoned chalice’.It is not. It is an intrinsic aspect of thebenefits we are seeking to bring toindividuals through the new ways ofproviding care. We must recognise theshared responsibility and apply ourselves appropriately.


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Sweden – a test ground fortelemedicine/telecareDr. Håkan Eriksson, Department of Woman and Child Health, and Professor Lars Terenius, Department of ClinicalNeuroscience, both of Karolinska Hospital, Stockholm, Sweden

elemedicine/telecare has attractedinterest in Sweden for severalreasons. There is a well -developed IT sector and

competence among potential users. Healthservices are available to all on equal termsand therefore networking is easilyimplemented. The geographic distancesand very sparsely populated areas restrictaccess to medicine and care. Finally, thenext to zero growth economy setseconomic limitations to increasing needsin healthcare of an ageing population.

Sweden is also a test ground for medical research using the tools oftelemedicine. Besides the general access to healthcare, Sweden offersexcellent possibilities to define patientpopulations and their families via registers.An example of a research database ispresented in this overview.

An outline on problems andpossibilities

Advantages of telemedicine/telecare

Somewhat simplified, there are four interest groups that would benefit fromtelemedicine/telecare applications. These are:

• Patients and their families• Health services, ie county

councils/regions and municipalities• Operational/contracting units, ie

hospitals and units in hospitals, local healthcare centres and other primary care units, units within municipal healthcare and social services, etc

• Staff and various professional sub-groups

Introduction of telemedicine/telecarewould provide:

• Access to expertise and more advanced equipment at more specialised centres

• More rapid diagnosis and treatment than via referral, etc

• Better opportunity for research, development and teaching

• Improved and faster access to up-to- date medical information on diagnosis, methods of treatment, etc, both for medical staff, patients and the general public

• Better support for medical staff in basic and in-service training, etc

• Lower costs for staff, emergency standby personnel etc

Individual effects are of different value and significance to respectiveinterest groups.

T

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Several countries face a strategicdecision

Telemedicine/telecare applications havebeen tested and used to a limited extentnot only in Sweden but also in almost allcountries, even in countries withconsiderably less advanced andmultifaceted health services than Sweden.On the other hand, there are fewcountries, if any, where such applicationsare used on a large scale and undernormal conditions, that is, as integrated parts of the ordinary healthservice and with functioning forms forfinancing them.

It is a general prediction in a number ofcountries that telemedicine/telecareapplications will be very common withinfive to seven years and that results will bevery positive. It is also generally realised byall sectors of the health services, a numberof problems attached to the introductionand adaptation of such applications to therest of the health services. However, afteran initial stage, when technical andeconomic choices have been made andsome applications have been introducedas regular routines, introduction mayoccur rapidly, since normal applicationswithin telemedicine/telecare no longerinvolve advanced technical problems.

Sweden and a number of other countries

with different health service systems thus face the challenge of choosingstrategies for widespread use oftelemedicine/telecare applications.

The use of telemedicine/telecare inSweden – an overview

To date, telemedicine has been testedand/or used in over 100 applications. The first occurred as early as the 1960s,but it was not until the 1980s thatdevelopments gained momentum. Morethan 75% of all hospitals have testedsome form of application or are actuallyusing them now. The majority of theseapplications have taken the form of pilotand development projects. Projects thathave been integrated into regular healthservices are comparatively few in number.In addition, the use oftelemedicine/telecare is rapidly increasingin connection with educational andtraining activities, etc.

One telemedical area within which thereare a relatively large number ofapplications, both in Sweden andinternationally, is radiology, where X-ray,computer tomography and magneticcamera images are transferred forconsultation and so-called second opinion.In addition, telemedicine/telecare is usedin more permanent forms in a growingnumber of cases, including the most

‘It is a general prediction in a number of countries that

telemedicine/telecare applications will be very common within

five to seven years and that results will be very positive.’

28

northern county councils. This is relatedpartly to distance and partly to thedifficulty of recruiting and keepingqualified medical staff in small towns inrural and sparsely populated areas.

Obstacles and problems

Naturally a number of problems andobstacles have existed and continue toexist that, on their own or in combination,have tended to slow down theintroduction of telemedicine/telecareapplications.

1. TechnologyUntil recently, the technical problems ofgetting equipment to work without accessto special support staff have beenconsiderable. Previous costs of equipmentand telecommunications were also far toohigh to allow large-scale introduction.However, it can be noted that thesituation is much better today and thatfurther improvements are continuallybeing made, thanks to the pace ofdevelopment in the field of IT.

2. AcceptanceA main obstacle, and this problem hasproved to be long-term, is to find ways ofintroducing telemedicine/telecareapplications into health services so thatthey can be both accepted andunderstood by the staff involved andresult in the improvements that wereintended. Among the above -mentionedproblems is the fact that the use oftelemedicine/telecare affects workingmethods, cooperation patterns and the division of labour among variousgroups of staff. Problems often also arise when distributing thecosts/investment of resources and

the income/return between the unitsinvolved, such as when the income/return falls on one unit, and the majorityof the costs on another.

3. IntegrationHowever, the most serious obstacle is thattelemedicine/telecare has not yet beenclearly integrated into an operationalperspective and used by management toimprove and renew relevant sectors of thehealth services.

Traditional means of introducing newtechnology do not work

The traditional method of introducing newtechnology into a sector, via pilot studies,evaluations/assessments and decisions,does not work in relation totelemedicine/telecare applications. A healthcare unit cannot introducetelemedicine/telecare applications entirelyon its own. The whole point of suchapplications is that the care provider isable rapidly and simply to cooperate withother care providers and support functionsthat are located elsewhere and often inanother organisational unit, ororganisation. The major advantages oftelemedicine/telecare arise when suchapplications are used in a number ofdifferent situations and together with arange of other care providers and supportfunctions in the health service.

Not even an average-size county council isable to introduce economically viabletelemedicine/telecare on a large scale. In fact, many applications presupposecooperation with social and health servicesin the municipalities and with universityhospitals where highly specialised medicalcare is involved. To achieve maximum

Sweden – a test ground for telemedicine/telecare

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Figure 1

results, regional and national cooperationis required. A broadband connection ofthe healthcare sector in seven regions wasestablished in a regional collaborationproject. This network, Sjunet (sju equalsseven in Swedish) was later extended as a national network. (Figure 1).

An operational perspective oftelemedicine/telecare

The challenges and problems facinghealth services necessitatetelemedicine/telecare

The need for and advantages ofintroducing telemedicine/telecareapplications must be seen in anoperational perspective. Can suchapplications help to solve or alleviate the

problems and challenges facing healthservices now and in the future, in theshort and long term?

These problems are partly of a generalnature for health services as a whole orlarge sectors throughout the country, andpartly specific, for Sweden, focusing onrural and sparsely populated areas.

Goals/problems at stake throughout health services:

• Improving quality of services to keep pace with the development of expertisein medicine and care

• Improving service to patients• Economising with scarce resources as

regards specialists and other qualified medical staff within a number of


SJUNET at the start SJUNET today

From a regionalcollaboration project to anational IT-infrastructure forthe healthcare sector

• A broadband connection which, e.g. makes videotransfers possible• The connection is based on Internet, i.e. a VPN (virtual private network)• The connection is encrypted and secured• One connection means all-to-all connections (simple)• Several services have been established within the net

Modified after K.G. Nerander. Carelink.

30

clinical sectors and medical services• Increasing accessibility and shortening

waiting times• Improving collaboration between

different healthcare units/care providers and competence levels of health services

• Improving the working situation and job satisfaction of medical staff

• Optimising the use of resources/economic efficiency

Goals/problems, specific for health servicesin some parts of rural and sparselypopulated areas:• Maintaining the desired extent of

supply of different health services • Providing healthcare at an acceptable

level of service• Recruiting and keeping qualified

medical staff

These problems cannot be solved in thetraditional manner in the health services,that is, by employing more staff and byreorganising. These paths are closed, dueto, inter alia, lack of money for financingand to shortages of trained medical staff.The most important reason, however, isthat traditional solutions will not workwell, even in the short term, and that theywill delay and hamper reorientationtowards long-term solutions that arecapable of being developed.

From this perspective, it seems obviousthat it will be necessary to reorganisebasic work processes and their interactionwith each other. It is here that IT, includingtelemedicine/telecare applications, isrelevant. This is not to say that theincreased use of IT will automatically leadto improvements in the health services. Onthe contrary, increased use of IT requires

initial investments and decisions at alllevels of management in the healthservices. What needs to be emphasised isthat not only by introducing but also byspreading the use of IT, conditions shouldbe created for long-term solutions that arecapable of being further developed.

Other challenges – the need for staffin services providing care of theelderly and in home care

In a longer-term perspective, the use oftelemedicine/telecare applications incombination with other IT applications hasthe potential to deal in different wayswith problems and challenges other than those mentioned above. One of these challenges is perhaps the mostserious problem in the health servicesduring the coming decades – that is, the difficulty of recruiting and keepingstaff in primary municipal health andsocial services. Another challenge is to provide different forms of medicalcare both in special institutions and in people’s own homes.

Telemedicine/telecare is one aspect oftotal IT use – a national ITinfrastructure and strategy is needed

Telemedicine/telecare applicationsrepresent only part of the total use of IT inthe health services. Such applications aregreatly facilitated if they are coordinatedwith other IT applications, particularlythose concerning patient administration,registering of medical records and otherhealth documentation and medicalservices (radiology, laboratory medicine,etc). Telemedicine/telecare applicationsmust therefore be coordinated and


31

Figure 2

integrated into all operations and IT use of health service management and health units. (Figure 2)

Seen from the user’s perspective, ie that of the medical staff, the same equipmentused regularly for IT purposes, usuallyordinary PCs, must also be adapted fortelemedicine applications. It would beimpracticable for people to use several IT applications in parallel, especially when there are different administrationand user interfaces for differentapplications. A technical solution with a PC, equipped with added functions tofacilitate telemedical applications and with special requirements, should be

provided if necessary.

To allow use of expertise and informationelsewhere, at other health units, somefundamental common terms and formatsfor describing operations in so-called‘operational models’, together with acommon technical and administrativeinfrastructure – both ‘hard’ and ‘soft’ – forall health services throughout the country,are needed. In purely practical terms, thismeans reaching consensus on the solutionof a number of key questions at thenational level. A cohesive description ofwhat is needed or should be aimed for atthe national level to facilitate efficient andcoordinated use of modern IT should becompiled in one document, a national IT


Hospitalcare

Electivecare

Primarycare

Rehab-unit Pharmacy

Internet Connection

Call-centrecare-

coordinatorPatient

Information/CommunicationInfrastructure

Patient’s phone orInternet

Mobilemedical

equipmentCare

provider’sdesktop

Webinterface

HealthCare

Net work

32

strategy for the health services.

Work is currently under way incollaboration with the organisationCarelink on the construction and further development of a commoninfrastructure for IT that encompassestelemedicine/telecare. An important partof this infrastructure already exists in theform of a common linking solution for alltypes of telecommunication (speech,computers, image/video) in the healthservices within all county councils andregions, as well as a number of privatehealthcare companies. Work is continuingwith support services necessary fortelemedicine/telecare, including catalogueservices and a security solution.

Start-up financing – a key issue

The basic problem economically as regardsthe introduction of telemedicine/telecarecan be said, in somewhat simple terms, toconsist of finding the means of achievinglong-term, essential improvements inmedical care and service in a sharplydecentralised healthcare system with manyactors. In this system, an individualprinciple for healthcare services or ahealthcare producer is not able tointroduce large-scale, reasonably pricedtelemedicine/telecare on his/her own. Onthe other hand, individual actors are ableto introduce applications to solve relatedproblems, such as difficulties in recruitingspecialists in specific areas. But this isoften not done in a manner that createssustainable and economically acceptableconditions supporting continuedexpansion of telemedicine/telecare as amatter of course.

From the economic point of view, theintroduction of telemedicine/telecareshould, ideally, be undertaken in acoordinated manner and in closecooperation with all the parties concerned,even those not expected to be involved fora number of years. Telemedicine/telecare isthus best introduced into a county councilor region jointly with representatives ofthat county council or region, includingrepresentatives of hospitals, primaryhealth services, and IT entrepreneursengaged by them. This means coming toan agreement, not only on a number oftechnical issues, but also on issuesinvolving financing and the distribution ofinquiry, introduction and investment costs,and eventually the running costs.

The optimal solution is that technical andeconomic issues are solved at the nationallevel, by consensus between all the actors.

IT databases in medical researchand development

Digital information as a databank forresearch and development

The access to digital information onpatients and their disease history in astandardised format will openunprecedented possibilities for researchand development. The introduction oftelemedicine/telecare will also generatedata banks that could be used to evaluateexisting or newly introduced treatmentprinciples, not only on a single-patientbasis but on patient populations. Thiscould also assist in selecting patients forthe proper therapies or avoiding therapiesthat would be ineffective and/or introducesignificant side-effects. A critical issue isthe medical records and the record system


33

that, at present, if they exist in a digitalformat at least in Sweden, are not directlyin communication. As an example, in theStockholm County alone with a populationof over two million, over 20 differentclinical data-handling systems are in use.For the future it will be essential to limittheir number and connect them in anetwork. This process should obviously beextended nationally.

For a research or development programmecertain information would be extractedfrom the clinical records. This couldinclude general diagnostic criteria relatedto the disease, metabolic or otherlaboratory markers, results from medicalimaging, etc. A new dimension is availablethrough genetic screening. Selection of adrug may be influenced by the metabolicroute of degradation; a fast metabolisershould have a higher dose than a slowmetaboliser, etc. Another example iscancer chemotherapy, where geneticcharacteristics of the tumour, rather thanits tissue or origin, should guide therapy.For such predictions it will be essential tohave access to populations of patientswith a similar clinical profile. A databasecould be generated by accessing theinformation available in the differentclinical records.

A related possibility for research and

development is clinical trials where, forinstance, two treatments are compared.Pairs with the same diagnosis could bematched more closely by computer search,rather than manually as now, a time-consuming process with considerable risksfor selection bias.

Proper diagnosis is the cornerstone in allmedical treatment. It is the basis forsecondary prevention, treatment,rehabilitation and decisions on sick leaveor early retirement. Certain pathologicalconditions are by their very nature sodifficult to diagnose that often not only asingle doctor but a team of doctors and/orother healthcare providers discuss aconsensus diagnosis. A typical example ischronic pain. The complaint is by its verynature subjective and relies on the signsand symptoms presented by the patient.Further insight can be obtained by variousdiagnostic procedures including nerveblock, medical imaging questionnaires,personality inventories, psychiatricconsultation etc, each of which maycontribute to the global view of themedical problem and decision on atherapy that may or may not improve the quality of life for the patient. As the term suggests, chronic pain issuffering without end and frequently areason for sick leave or early retirement on a pension. The multidimensional natureof pain and the difficulties of its taxonomyis a challenge for medicine. The access to a clinical database could serve tooptimise and rationalise the handling of these conditions.

Diagnostics in psychiatry is oftenproblematic, since the symptomsconsidered central to a diagnosis may varyin intensity or are even absent (if other


The multidimensional nature ofpain is a challenge for medicine...The access to a clinical databasecould serve to optimise andrationalise the handling of theseconditions

34

characteristic symptoms are present). It istherefore hard to conceptualise a certaindiagnostic category. A widely usedmanual, the fourth Diagnostic andStatistical Manual of the AmericanPsychiatric Association (DSM IV from1994) is widely used as a research tool,but is too extensive to be useful in generalpractice. With this or simpler manuals,psychophysical measures, medical imagingof the brain, laboratory markers etc, eachpatient can easily generate many hundredsof diagnostic items. It is a clinicalexperience that many symptoms are notdisease-specific – for instancehallucinations or cognitive disturbancescan occur both in schizophrenia and mood disorders.

To obtain better definition of types andsubtypes of mental disorders, andparticularly schizophrenia, an attempt is

being made to use a multidimensionaldatabase that describes the psychiatricsymptoms and other variables. Thisdatabase (Human Brain InformaticsNetwork, HUBIN) is multidimensional and

accessible for research purposes. Bystatistical and mathematical analysis ofrelationships between the differentvariables in each individual and in groupsof individuals, it is hoped to obtain bettermarkers for diagnosis, prognosis and leadsfor therapy. The HUBIN database will usethe latest advances in mathematicalcomputation and multiparametric analysisto validate the current basis for therapy orreplace it with other criteria (for moreinformation on HUBIN, seewww.hubin.org). (Figure 3)

What is needed to force the paceof the development oftelemedicine/telecare?

A cohesive strategy and actionprogramme is necessary

As indicated, telemedicine/telecare is acollective term for several different ITapplications that may be used within allareas of health services and in theinterplay between these areas. There is nosimple formula or universal measure that


HUBIN Central Core Database,

Computer facilities, Statistics

Schizophrenia

Parkinson’sdisease

Alzheimer’sdisease

Multiple sclerosis

Bipolar disorder

Depression

Alcoholism

Other areas,outside health

Figure 3

35

in one fell swoop will solve all theproblems and lead to the broad use oftelemedicine/telecare intended. Instead,several measures of different types will beneeded which, taken together, canproduce results.

A set of interacting strategies andmeasures that will lead to broader use oftelemedicine/telecare have been identified.The proposals for strategies and measureshave been arranged in five strategy andinvestment areas:

• Strategy area A – strategies to establish the technical and other basic preconditions for telemedicine/telecare

• Strategy area B – strategies for telemedicine/telecare in hospital care, primary healthcare and local health services

• Strategy area C – strategies for telemedicine/telecare in health and social services in primary municipal units

• Strategy area D – strategies to supportpatients/persons receiving care and heir relatives

• Strategy area E – strategies to enhance the market for IT and medical technology

A separate programme on data safety hashigh priority. All connections are encryptedand secured.

Economic aspects

A major problem connected with theintroduction of IT into Swedish healthservices has been the limited selection ofgood IT products and services offered onthe market. Among other things, this isdue to the fact that the Swedish principles

for health services and healthcaredepartments have had difficulties incooperating and coordinating theirrequirements when procuring IT supportfor basically the same tasks. Suppliersoften found their product investmentsunprofitable, and consequently there wasno incentive to invest in improvements,new products and services. The Swedishhealth services need therefore tocooperate so that together they cangradually improve market supply.

One aspect of these problems is thatdefined IT support must function togetherwith already existing IT support and anythat may be added in the future. Thispresupposes a well-defined infrastructurefor IT in health services, preferablyincluded in a national IT strategy for thehealthcare sector. This is a crucial area ofwork for the IT coordinating body Carelink(see above). Several activities in thissphere, in which IT suppliers are alsoparticipating, are already in progress.

A number of measures discussedpreviously imply sophisticated technicalsolutions that are of considerable interestto Swedish companies specialising in ITand medical technology. It has thereforebeen emphasised that Swedish agenciesand other bodies aiming to supporttechnical development, companydevelopment and the like, committhemselves to these issues. Furthermore, itis essential that technical and otheruniversity institutions be involved in theareas mentioned. The greatest number ofIT support applications used in healthservices refer to tasks and functions thatare available in a few places and are small-scale. Very small companies may also be ina leading position within limited areas


36

(niches). It is therefore essential forSwedish IT companies specialising intelemedicine/telecare, other IT applicationsand medical technology, to sell theirproducts and services abroad in order toincrease volumes and reduce prices.Financial support for small companiesshould cover improvement and concreterealisation of ideas and plans for productsand services in the IT and medicaltechnology sphere in a broad sense,including telemedicine/telecare.

Financing

The total cost of the programme isdifficult to estimate, since so manydifferent measures are involved. A roughassessment suggests that it will be in theregion of SEK 400-500 million over athree-to-five year period.

The largest share of the costs will beborne by the principles for health servicesand healthcare producers. For their part,in the first instance it will involvereallocations as current methods oftreatment, working methods and forms ofcooperation will be graduallysupplemented with or replaced bymethods based on greater use oftelemedicine/telecare applications.

Government financing may also largely bemanaged through reallocations of existingresources within the agencies and otherpublic bodies responsible for healthservices, institutes of education andagencies, and college institutions in thefields of research and development,company and business development, thelabour market, etc. Equally, the proposeddevelopment programme may hopefullybe financed from wage-earner funds.

However, it is the view of the workinggroup that not all support measures canbe financed in this way. There will also bea need for new targeted funds if theintroduction of telemedicine/telecare is to progress at a pace that is desirable and in fact necessary in several areas ofthe health services.


38

The experience of two unusual French hospitalsHenri-Arnauld HansskeChief information officer of Centre Hospitalier d’Arras, France

or the past eight years, a smallteam of northern French healthprofessionals has been committedto making innovations in

healthcare-focused IT and new e-healthapplications.

The members of the team, composed ofclinicians and managers, are passionateabout their work. They are convinced thatIT and e-health applications will hugelyimprove the way in which clinical practicesand healthcare management addresspeople’s needs, as well as bringing higherstandards of quality and performance tothe new working environments that willresult from the change in approach. But,just as importantly, they have beenpragmatic when it comes to selectingprogrammes for e-health IT, ensuring thatapplications are clinician-friendly, benefits-proven and compatible with globalprojects. Their philosophy works. Forproof, one need look no further thanhospitals in Montreuil-sur-Mer and Arras,where they have successfully builtinnovative health information systems.

This essay will relate the main elementstested within the medical experiment inMontreuil-sur-Mer, the lessons learnedfrom it and applied to a hospital project inArras, plus further projects planned for thecoming five years.

Summary of Montreuil-sur-Mer

In 1995, a daring experiment pioneeredthe French movement of health servicesrestructuring when three separatehospitals on the Pas de Calais coast weremerged into a new single institutionlocated in Montreuil-sur-Mer. The newhospital boasted 800 beds, a 20%reduction on the capacity of the threehospitals, and was staffed by 1,200ancillary workers and 75 physicians.

The project offered a unique opportunityto implement a new information systemand new clinical processes in the newinstitution. Luckily, the new hospital wasmanaged by a general director who was afirm believer in information treatment andIT, so a suitable strategy was developedthat was implemented schematically.

The new system consisted of three coreideas. Firstly, a real-time productionsystem, focused on the inpatient (which,at the time, was not a widespread practicein France). Secondly, an internet andelectronic bulletin board for all managers,physicians, staff nurses and secretaries.And thirdly, a partnership with theUniversity Hospital of Lille to developtelemedicine and telexpertise.

F

39

The medical impact

Drawbacks

The arrival of new technology has stronglyworried the medical profession, becauseof the gap between the real advantagesoffered and clinicians’ initial capability inusing it. How can a physician take realadvantage of a new tool when he hasn’tbenefited from the appropriate trainingrequired to understand and use it? Indeed,all the training for the new HIS (HealthInformation System) applications had beenoriented towards nurses andadministrative agents.

Specific training opportunities had beenproposed to medical staff, but manydeclined the offer, not realising theconsequences their choice would havewhen they actually tried to use thesystems. We tried to address the problem,but without much success. Unfortunately,the doctors didn’t yet understand the realvalue of health information systems,considering them merely an electronicversion of their existing paperwork.

Another difficulty we met was duringnegotiations to share information, and theways to protect confidentiality. In additionto realising the importance of thoroughtraining, we also encountered theimportant issue of patient record

confidentiality. We worked hard toproduce a solution for the hospital thatwas acceptable to both clinicians andpatients. This solution works in the stand-alone hospital situation, and isbased on the approach we used forproviding access to the old-style paperrecords – as and when needed by thosewith clinical interest.

Advantages

Luckily, these have been more numerous.The new system appeals to non-clinicianprofessionals as it is an efficient and time-saving way in which to get biologicalresults as soon as they are available,without the need for staff to becontinually phoning the laboratory. It isalso useful for automatically enteringinpatients’ details for radiological orbiological forms, and giving direct accessto patient records with EPR (ElectronicPatient Records) and traced archives.

The new system has resulted in bettercommunication between the wards andthe emergency unit, offering seamlessaccess to inpatient information. It alsomakes it easier to locate inpatientinformation within the system, even if thepatient is admitted to hospital at nightwhen archives are closed.

‘Nurses are much happier because their work is easier and

involves much less reworking of administration, ordering

tests, seeking reports and so on.’

40

With such a vast amount of information,we decided to try to share it with generalpractitioners around the hospital. Weinstalled software on our servers thatenabled general practitioners to read alldata contained in the hospital’sinformation system. The data was secure,thanks to a French network calledReseauSante Social, which is a privatesecured network for health accessed witha professional identity smartcard andpassword security system. The difficultywas that not all GPs were members of thisnetwork, so we had to convince them tojoin. After a few meetings about 75 GPsjoined, with the result that about 3,500inpatients a year since 2000 have comeonto the system.

Criticisms of the system include theslowness of the existing infrastructureunder the new loads of data, theexception being for GPs communicatingfrom outside the hospital; the limitationthat we only have one hospital in the areausing the system and the limitationscaused by having only one provider(because of fears over security andcontinuity of operations).

Critical results

Taken as a whole between 1995 and 2000we have delivered:

• A 20% reduction in beds• A 30% increase in activity • Recognition as one of the best

hospitals in France with regard to production and performance, accordingto the national indicator of medico-economic performance

• A 12% increase in inpatients each year (with the Network GPs) thanks to

introduction of networked working across the primary and acute care boundary

• Overall satisfaction among GPs with the establishment of new relationships and confidence in the hospital

Practical applications of whatwe’ve learned

Built at the end of the 1950s, ArrasHospital – 1,200 beds, 2,000 staff, 150physicians – had become a typicaltraditional, conservative andcompartmentalised organisation plagued by a narrow-minded and blindhierarchy. According to an external auditundertaken shortly after a change inmanagement, the hospital was regardedas expensive, inefficient and lackingsupport from its users.

In 2001, following its Montreuilachievements, the ‘Centre HospitalierArrondissement de Montreuil-sur-Mer’(CHAM) team faced a new challenge whenthey were recruited to restructure thehospital at Arras.

Building on experience gained atMontreuil, the Arras team drew up athree-step agenda: firstly, they wouldconceive and implement a new patient-and professionals-centered HIS, using thevery latest tools and concepts in IT. Next,they would design around the HIS a newclinical, administrative and logisticorganisation. Lastly, they would conceiveand build a new hospital that wouldbecome an innovative platform to gatherhuman, logistic and IT resources dedicatedto health instead of a classic clinicalservice-centered hospital.

The experience of two unusual French hospitals

41

To do this, it was agreed that fourprinciples should be adhered to: speed;access to information and to the system;transparency and absolute reliability incommunication and supporting theclinical workload.

The strategy applied embraced hardware,software and services.

Hardware and basics

• A new internal high-speed Local Area Network, capable of supporting the data and services the sophisticated hospital systems needed

• The creation of external Wide Area Network, with 11 remote sites

• Collaboration with leading companies (Ascom, Cisco, Siemens) and relations with the workforce on a mutual profitable partnership

• Devices that can be upgraded as technology advances – for example introducing IP phones, Video on Demand storage and distribution etc

• Wi-Fi equipment, using sixty antennas to connect wireless mobile devices usedby professionals in the hospital to connect to the HIS

• High-quality PCs for all doctors, staff nurses, boards and wards, secretaries, administrative agents (8OO in total).

Software

• Generally, we have chosen standard software: although we are not a wealthy hospital, we chose to standardise on Microsoft (Exchange, Outlook and all the Office suite), to ensure we had coherent integrated packages

• As in Montreuil, the very heart of the System d’Integration de Service Information Arras (SISAS) Project was the Clinicom software designed by Siemens but complemented by other software and IT tools, with a view to covering as much as possible every aspect of healthcare ‘production’ processes. Siemens is the holder of the overall contract and has a 40-month agenda to fulfill the SISAS successfully. The plan of the project, which is almostcompleted ahead of schedule, is in Figure 1.


Delivering immediate benefits tohealth professionals isfundamental to building theenthusiasm of hospital staff andgive them energy to train for useof HIS and e-health applications

42

Figure 1: the medical information system in Arras hospital


43


44

Services

Delivering immediate benefits to healthprofessionals is fundamental to buildingthe enthusiasm of hospital staff and togive them energy to train for daily use of HIS and e-health applications. Quick-win ideas might include an intranet that supplies:

• A dictionary of drugs • An up-to-date roster of on-call

emergency response staff • Access to all the medical letters

contained in the old information system (via an easy-to-use intranet)

• Full internet access • Subscription to internet medical

information and libraries • Practical help with their working lives,

such as online access to the canteen menu with a real-time video of the queue (so you could choose not to waittoo long!)

Obviously, our venture to bring the ArrasHospital into the 21st century has notbeen conducted without setbacks. But oneyear from the beginning of the project,the new information system having beenactivated in May 2002, the first results arearriving. Nurses are much happier becausetheir work is easier and involves much lessrework of administration, ordering tests,seeking reports and so on. The speed andergonomics of the system are majorcontributors. The administration team isalso more satisfied for much the samereason, and because there have been no systems failures. As for staff nurses, the reporting process that they useextensively was activated in June 2003, so their satisfaction curve is just

beginning. However, support fromphysicians is more difficult. Even thoughthey have new computers, full-time accessto a great amount of information insideand outside and any teaching they mightdesire, they are not completely happy with the project.

The main reason for this seems to be thatold habits die hard, and doctors have beenreluctant to change the habits of alifetime. So, when embarking on a projectof this size and nature, it’s important toanticipate and support change.

On the whole, the impact has beenpositive. This has enabled the activation of another project: the opening of theinformation system for generalpractitioners and town physicians, because the recent changes have boostedthe hospital’s image throughout Arras.


45

The outside links

Improving on past performances

Being short of time, we decided toconcentrate on new aspects and retaintried and tested e-health elements whenthinking about how to communicate andinteract with the local communityhealthcare providers. In June 2003, thefirst part of the opening of ourinformation system was activated as inMontreuil-sur-Mer (Tool NetAcess fromSiemens Health Services).

We made two improvements for GPs,based on feedback. The first was an alertsystem for doctors, through text messagesto mobile phones or secure emails, thatone of their patients had been seen by the

hospital (either as an inpatient, for aconsultation or because of their death).The other improvement made it possiblefor GPs to add information to inpatientrecords from their office, linking externalsystems to the hospital’s own databases.

We in turn have made onerecommendation to all our ‘townpartners’, which is to get a high-speedbroadband network connection. Indeed,speed is a large key to acceptance of use.

Next steps: end of 2003

One criticism from GPs in Montreuil wasthat only one hospital gave electronicinformation. So we have joined a regionalproject called ‘Rithme’, which will enablehospitals, private laboratories, privateclinics, private radiologists, etc, to shareinformation concerning the patients theyall treat throughout the entire Nord Pas deCalais region. (Figure 2)


Secured Access ServiceSIIH Nord Pas-de-Calais

Site Serv eur

Direct access for GPs

Security Directory

RITHME

ISDN

Cable

ADSL

Phone

General Practitioners connected to the

network

AMELICORITHME

EXCHANGE

WELC

OM

EW

ELCO

ME Authentication

Encryption

HOSPITALS

SIH RITHME EXCHANGE

RITHME PI Central site

Server

Server

ISDN Evolutive Network

SHH

Health Extranet Provider

Figure 2: schema of the regional Rithme project (www.planethc.fr).

46

Thus, the GP will connect to a specialisedand secure internet address and see a listof all the events on his patient’s journeythrough care, anywhere in the region –including their stay in hospital, tests theyhave had, medical procedures etc. Clickingon each line, he will be able to see if thereare any notifications from any of hismedical partners.

This project complements our first one,which provides direct connection from aGP to his local hospital. Indeed, the GPcan make use of both services – initiallydealing with his patient at the localhospital, then tracking their progressthrough the labs, clinics and privatepractices as required in the region.

Mid-term projects

Rebuilding medical records

Generally, the medical records of a patientare not kept only in one place, beingspread through hospitals, privatelaboratories, GP’s records etc. So our nextstep was to test a system where recordsheld in different locations could be viewedtogether on a PC screen. That’s what weare doing by supporting an idea broughtto us by a start-up company, calledSantnet (www.santnet.com).

Logging patient records

A new French law (4 March2002) hasgiven healthcare organisations andprofessionals new principles on managingmedical information. As soon as the fulldetails of the decrees are known, we willanalyse the interest in positioning ourhospital on such a service.

Pictures technology and radiology

Transferring large radiology pictures (IRM,Scanners, TEP, etc) within the hospital isnot a problem, as long as theinfrastructure is designed to deal withsuch heavy traffic (each examination canlead to approximately 100 pictures and500 megabytes of information )

Picture Archiving and CommunicationsSystems (PACS) and Radiology InformationSystems (RIS) already exist and a lot ofthem are installed in hospitals, creatingthe ability to capture complex images,store them and transfer them fordiagnosis and informing consultants orpatients. But when it comes to sharingthese important types of medical recordwith another professional at a remote site,problems are encountered.

Whether time is spent burning a CD orDVD, posting images throughconventional mail or choosing to get alight JPG-format picture, there is a risk oflosing information through compression –making diagnosis either dangerous orimpossible. None of these solutions issatisfactory and only high-speedinfrastructures connecting hospitals, clinicsand surgeries in the public and privatesector will solve that.

Therefore, a high-speed digital loop will beactivated in a few months in Arras,connecting the healthcare community, andwe hope the medical professional will beable to use it not only for health recordsbut also for these more difficult tasksinvolving images.


47

Conclusion

Developing and promoting e-health andits tools is nowadays a kind of emergency.However, we have shown in Montreuil andArras that rapid, efficient progress ispossible – the prerequisites are supportand funding from enlightened seniormanagement, an experienced health ITteam and willing healthcare professionals.

Moreover, the development of healthcommunication networks is changing theway that information is transferred andshared among health professionals. Thesetechnical developments combine with afundamental change in how the medicalprofession needs to deal with patients –developing the ‘service culture’. Theimpact of these two factors is that thehealth service must capitalise on thecapabilities of new technologies in careand communication to ‘market’ theirservices to patients and citizens; in doingso, far more information will be sharedfrom the healthcare system to the generalcommunity and to individuals on theirown care.

The projects at Montreuil and Arras havealso shown us that we can use thetransparency of data and reports, clinicaltools and processes that work acrossprofessional boundaries, to identify

necessary changes in working culture,technology and within the organisation.

One of our priorities was to ensure thateverybody, particularly physicians and GPs,who needed medical information, wasable to access it. That meant that all thesecurity concerns had to be solved and wecarried out a work on this aspect. This wasone of the keys to our success.

The others key was based uponsatisfaction of needs. The instigators ofsuch a project have to be concerned byergonomics and how new tools can beused easily by different kinds ofprofessionals on a daily basis. Theserealisations don’t come about on theirown. You need organisations andstructures to support them.

With these types of tools one can see how e-health contributes to a bettercost /quality ratio, improving transparency,medical links, the tracking of patientsthrough the system and, for example,shortening the patients’ length of stay in hospital.


Rapid, efficient progress ispossible – the prerequisites aresupport and funding fromenlightened senior management,an experienced IT team andwrong healthcare professionals

48

Bibliography

ALLAERT FA, DUSSERRE L. Dossier médical informatisé: déontologie et législation. La Revue du Praticien. 1996; pp. 333-337.

Anonymous. Dossier médical informatisé – Le respect de règles déontologiques s’impose. Bulletin de l’Ordre des Médecins. Paris. T10. 1997.

DE ZEGHER I, MILSTEIN C, PIETRI P, VENOT A.Construction et maintenance partélématique d’une base de connaissancessur les médicaments. Technologie Santé.1997; pp. 28-34.

McCRAY A, VAN BEMMEL J. Computingand collaborative care, Yearbook ofMedical Informatics, 1997, pp. 4-9.

McDONALD CJ, DEXTER PR, TAKESUE B,OVERHAGE JM. Health InformaticsStandards. Yearbook of MedicalInformatics. 1997; pp. 67-74.

HAYES G. The requirements of anelectronic medical record to suit all clinicaldisciplines. Yearbook of MedicalInformatics, 1997; pp. 75-82.

BRANGER PJ. Clinicians at Work: Sharingcare in the information age. Yearbook ofMedical Informatics, 1997; pp. 83-91.

RAMAN RS, JAGANNATHAN MV, SRINIVASK, REDDY S. Collaboration technology forrural healthcare. Yearbook of MedicalInformatics. 1997; pp. 92-99.

SOUF N, TIERS G, DONSEZ D, BEUSCART R.The inter-regional Information SystemInitiative: the healthcare Working Group.JAMIA. 1996.

BEUSCART R, DELERUE D, SOUF A, TENHOOPEN H, MODJEDDI B. A regional server for medical information. Medinfo.Séoul. 1998.

H.A. HANSSKE; M. LEFEBVRE.Management et communication dansl’hôpital: un secteur à ne pas négliger: lesystème d’informations hospitalier (SIH),Gestions hospitalières. Avril 2000.

H.A. HANSSKE, N. BOCQUILLON.L’hôpital Informatif, Gestion Hospitalières,Novembre 2001.

D. SILBER; The case for e-health, presentedat the European Commission’s first high-level conference on e-health, May 22/232003 – European Commission.


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The Paperless Hospital, the user point of viewPierfrancesco Ghedini, ICT and Information Manager at ModenaHealthcare Authority, Italy

ospital information systems areon the march, driven by therapid evolution of informationand network technology and its

convergence with medical engineering, aswell as the growing popularity of EBM(Evidence Based Medicine1). What’s more,we now have information systems thatcan cater to the needs of an entirehospital2, not to mention a comprehensiveand coherent legal framework coveringissues of security and confidentiality.

All these new initiatives are now beingforged into a single vision: the paperlesshealthcare information system.

This vision is becoming a reality innorthern Italy, at Modena. We are creatingtwo, new-built hospitals at Baggiovaraand Sassuolo with about 600 beds and260 beds respectively. One of these –Baggiovara – will be paperless and theother will be highly automated. Thesehospitals will start treating patients inmid-2004, so our plans andimplementations are well advanced. Thehospital of Baggiovara will be trulypaperless, offering a highly automatedworking environment for both patientsand clinicians. The hospitals will becomplemented by a completereorganisation of the testing labs in theModena district, to implement testing at

the point of care – a revolution in thelaboratory test environment that meansthe lead-times are slashed.

We have to deal with some fundamentalissues, the most significant of which arecultural: a lack of confidence in acceptinghighly automated hospitals; concernsabout security; the lack of widely acceptedstandards and even the productionprocess itself, because its high degree ofcomplexity and potential variability givesrise to usability issues.

The cultural problem

‘Information technology makes everythingpossible,’ or ‘You’ll never automate thisprocess,’ are typical clichés that betraypeople’s misunderstanding of whatinformatics can do for them,misunderstandings that lead them eitherto overvalue or undervalue the technology.This is a tendency to which, of course,physicians and nurses are not immune.

When we started to plan a paperlesshospital3 in 2001, we wanted to try andclear up these misunderstandings from thestart. We felt that the best way to do thiswas to work with technicians and medicalstaff so that they ended up speaking acommon language.

H

1 EBM is generally defined as the systematic review, appraisal, collation and distribution of clinical research data, in order to assist health service professionals in delivering the best level of clinical care. EBM is a principal driver for the development and adoption of new information processing systems in healthcare.

2 Sometimes called Healthcare Enterprise Resource Planning Systems or Healthcare ERP.

51

We began this process by asking users forfeedback about the concept. In return, wegot some useful hints – but also a lot ofunmanageable and vague suggestions! Achange of approach provided the answer:for each requirement put forward by theusers, we got the technical staff torespond with another, opposingrequirement. We then asked the users tostrike a balance between the two.

For example, the users said they wanted a‘highly customisable system’. In reply, thedevelopers asked them to consider thebenefits of ‘a system that allows theexchange of standard data’. This approachencouraged users to realise that there is

always a trade-off, a price to pay. We’renot talking about money here – at least,we’re not talking only about money andwe had to make this clear – but also abouttechnical feasibility and usability. Table 1lists some of the concept pairs that cameup during this process.

By bouncing these demands back andforth, we were able to identify the criticalrequirements for the project, finding theright balance between technical solutionsand users’ expectations. (Table 1)

User Suggestions Technical staff suggestions

The electronic patient record must have the

richness and the quality inherent in the written

medical record and the application must be highly

customisable

But The system must be able to exchange standard data between

different users, must be easy to use and not time-wasting

Easy to use, and not time-wasting But Secure – with clear policies about access to data

Secure – able to maintain high standards of

business continuity

But Economically and technically feasible

Useful for statistical purposes, for calculating

performance indexes and for research purposes

But Secure – able to maintain patient confidentiality

Able to track appropriateness But Simple to implement and simple to upgrade

Able to get unstructured data – handwritten text

and simple schemata, because physicians and

nurses cannot type in data all day: they’re not

clerks

But Able to track appropriateness and the flow of care. The system

must also be able to manage all patient data at the same time

as handling billing and legally-required information

Supported by powerful tools and boasting state-

of-the-art performance

But Not so greedy for resources that it could not operate in a low-

speed, real-world environment. Must also be based on accepted

standards

3 The paperless hospital we are talking about is ‘The New Hospital of Modena’. It belongs to the Local Healthcare Authority of Modena – a province in the region Emilia-Romagna in the north of Italy, which has another eight hospitals in the same territory. The Local Healthcare Authority serves about 650.000 citizens who reside in the province.

Table 1

‘The hospital of Baggiovara will be truely paperless,

offering a highly automated working environment for both

patients and clinicians.’

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Appropriateness and informationsystems

The growing importance of appropriatemedical treatment, particularly in thecontext of EBM4, has been changing thecare process. We’re still taking our firststeps in this new world and the finaldestination is as yet unknown, but onething is certain: EBM and the need tomatch treatment to appropriatenesscriteria are revolutionising the way we design and develop our information systems.

Appropriateness requires an automatedhealthcare environment. Calculating thedegree of appropriateness for a givenintervention would be impossiblyexpensive without an automatedinformation system. It would be madnessto browse the thousands of sheets ofpaper of clinical documentation that atraditional hospital produces every singleday. But legacy information systems weredesigned to deal with billing, monitoringcosts, and storing and retrieving clinicaldata – in the most comprehensiveimplementations – but not aboutdetermining appropriateness.

It’s difficult to map the concept ofappropriateness onto existing systems.These systems are focused on specificareas and tend to lack the ability to ‘stepback’ and give the user a snapshot of thewider context – yet it is precisely thiswider context that is needed to determinewhether, for example, a procedure isappropriate or not.

In general, the quality of today’s clinicalsoftware applications remains unclear, butwe do believe that the applications of

tomorrow will be able to improve thequality of care, help prevent errors andsetbacks and enable a more rapidresponse in the event that accidents do occur.

These new systems will be able to improvecommunication between physicians andassist in care flow by means of forcingfunctions5. The latter make it possible tosuggest treatment guidelines and also,later, to update and expand these as thecase progresses. It should therefore bepossible to see, for example, not onlywhen a particular intervention is indicated, but also when it is due – and itwill be possible to update this rule easily and quickly.

Usability

User feedback was unanimous inidentifying usability as a major issue forthe paperless hospital. This is hardlysurprising, since usability is a major issuein just about everything we do: a moderncar, for example, is an extremely complextool, but you’ll drive it quite happily if youfeel it’s under your control. Whatever thetool, if someone finds it unfriendly ordifficult to use, they’ll give it a wide berth.It could be a PDA or an electric drill – ifyou have too many details to get yourhead round, you’ll soon be irritated and, ifyou’re forced to use it, you’ll end uphating it.

But this usability threshold is highlyvariable: it depends on cultural issues, onindividual characteristics, on age and on

many other factors. A hospital especiallyis a complex beast employing thousandsof different people, each with different

The Paperless Hospital, the user point of view

4 Healthcare procedures are deemed appropriate if they meet established criteria for quality, effectiveness and cost. 5 D. Bates and A. Gawande in ‘Improving Safety with Information Technology’ which appeared in the New England Journal of

medicine 2003;348:2526-34 define the forcing functions as ‘features that restrict the way in which tasks may be performed’

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feelings about technology. If every one ofthose people has their own usabilitythreshold and learning curve, how can we cope?

Part of the answer is to keep the toolssimple at the highest interface levels andthoroughly train staff.

With regard to training, it’s obvious thatwe have to train people before they canuse the system. But for every beginner,there’s also a need to educate moreadvanced users who want to get more outof the system. Because of this, wedeveloped a two-phase approach. Firstly,the system had to have a subset of basic,essential functions, all of which needed todisplay extreme ease of use and a gentlelearning curve. This is the core feature-set that every user needs to befamiliar with. However, we also need a setof more advanced functions for power-users; not often required, but there when you need them.

The core feature-set deals withindispensable data: for example, billinginformation, legal documents, disclaimersand so on. There are very few bells andwhistles at this level; everything is assimple and functional as possible.

The feature-set for power-users, however,is highly configurable and much morepowerful. Of course there’s normally a

steeper learning curve here, but theseadvanced functions can give access tosome very powerful, integrated features.

Everyone must know how to use the corefeature-set. Equally, everyone is free to usethe advanced feature-set if they need andare able to do so.

Few hospital information systems, today,have these characteristics. There is usuallyonly one way of doing things and there islittle space for personal customisation.Because of this, usability is generally poorbecause both beginners and power-usershave to make do with the same set offunctions. Unfortunately, the distinctionbetween basic functions and advancedfunctions is, for the most part, arbitraryand very hard to make. However, theintroduction of innovative devices such asthe tablet PC6 can dramatically change thissituation (see Box 1).

Security

Traditional hospitals have natural back-upsystems but, when you start to introducehighly automated systems you can getinto deep water. Here’s an example.

A doctor is monitoring the progress of apatient who’s in a critical state. Suddenly,the patient goes into crisis and thephysician has to stabilise the patient byadjusting treatment, fluid intake, breathfrequency etc. But suppose that at thiscritical stage he cannot access anyinformation about the patient because thenetwork is down!. He’s now got nothingto go on except his eyes, his hands and –if he’s seen the patient before, which hemay well not have done – whatever he canrecall about this particular case.


For every beginner, there’s also aneed to educate more advancedusers who want to get more outof the system.

6 See the Microsoft documentation for a thorough description of the features of the tablet PC.

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In a traditional hospital it would be almostimpossible for a doctor to find himself insuch a brutal situation. In a highlyautomated hospital, a simple technicalfault could wreak havoc.

The next-generation hospital informationsystem must be single point of failure-free7 or, at least, must guarantee a givenlevel of service in the event of any numberof likely failure scenarios.

Simply different

It’s difficult to imagine what the paperlesshospital would actually be like. And it’sparticularly difficult to imagine theorganisational changes that would needto accompany a high degree ofautomation. At this stage, we can onlyhypothesise: but we can at least base ourtheories on the organisational changesthat are actually taking place in somemodern departments, pathology being agood example. This is one of the mostautomated areas in hospitals today andshould give us some pointers.

New high-volume pathology laboratoriescan work with a high degree of efficiency,working with batches or one-off samples8.There’s no longer any need to maintainthe traditional distinction betweenscheduled tests - the screening panels, andthe unscheduled tests – the urgent ones.

High-volume turnaround, combined withthe ability to manage the process down tothe single-tube level – plus the ability todeliver results electronically – demand adifferent organisational approach, basedon the idea of the ‘on-demand test’,where you simply order a test wheneveryou need it.

But are our management structures reallyready for this? How can we model theorganisation to obtain the maximumadvantage from all this new technology?Do we do the same things that we didbefore, but with fewer staff? Or do we do them with the same staff, but in abetter way?

And when we think about saving staff arewe taking into account all the humanresources one needs for back-up? Forexample, do we base our approach on thebest-case scenario – where everythinggoes according to plan, or on the mostlikely scenario – where everything is NOTgoing to plan? And, if it’s the latter, whichof the many frequently encounteredproblems do you take into account?

Developing a paperless hospital meansfinding the right answers to thesequestions. In the complex environment ofa modern hospital, that is not a trivialtask. Finding the right answers means alsoidentifying a solution that suits everyoneand does not simply cater for a fewprivileged users: for example, experts atone end or novices at the other.

Furthermore, users need a coherent andunderstandable level of automation forthe entire work process with which theyare involved. You can’t take a half-heartedapproach: no organisation could support aschizophrenic information system thatwas, for example, partially automated andpartially paper-based9.

Finding the right answer also meansdeveloping a solution with a high degreeof conformance to de jure or de factostandards10, ensuring that theimplementation will have the longest


7 A system is single point of failure free when it is failure proof.8 Or a small amount of serum collected in one or few different tubes.

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possible shelf-life.

Putting it all together

Security is not just about totting up all thesecurity measures you have in place, nor is usability simply a catalogue of neatinput devices and clever interfaces.Appropriateness in medicine is more thanjust a tally of successful medicaltreatments. In the same way, a paperlesshospital is not just about state-of-the-arttechnology, best practice, or even bestendeavour: it has to take everything intoaccount – all those measures you need toadopt to make it work in the best possibleway, for the patients as well as the staff.

Building the paperless hospital is aboutbrainstorming what is possible from both

a technical and a management point ofview, to see what can be done to satisfythe objectives of both. One thing is forcertain: we’re going to have to put ourmoney where our mouths are. Althoughthe paperless hospital may still be on thedrawing board for most of us, it will soonbe a reality.


9 It’s worth noting, however, that this intolerance of diversity can be an advantage: many radiology departments and path labs are already paperless and their new status is a strong driver for change in other departments.

10 The lack of widely accepted standards is a real problem; many initiatives are now up and running but a great deal remains to be done.

Figure 1

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Bedside examination

In recent years we have seen only partialtechnical solutions that involve bedsideexamination: the automation ofprescriptions, for example, and the abilityto view clinical images and results.However, it’s hard to see physicians ornurses collecting anamnesis or writing theclinical diary directly at the bedside.

Why can’t bedside examinations becarried out in a paperless way?

This is a tall order, for several reasons:

• Doctors and nurses interact with the patient at the bedside: they speak to him; they examine him; they look at previous documentation; they consult each other and then they update medical records and write prescriptions.It’s a highly interactive process and anytechnical device, if present, must not be allowed to get in the way

• Normally, doctors and nurses stand at the bedside and in such a position that it is quite uncomfortable to type something on a keyboard

• Browsing patient information and then taking the necessary action is never going to be a standard procedure. Every member of staff has his or her own way of going about things and they may not even be consistent, depending on which patient they are seeing at the time

Any input/output device for a paperlessbedside examination must therefore have,

at the very least, the following features:

• It mustn’t attempt to turn medical staffinto typists

• It must be portable, connectible to a wireless LAN and ergonomically usable at the bedside

• It must be usable by less-skilled staff and, at the same time, offer appropriate features for power-users

• It needs to handle all the various data types that might be involved during a bedside examination

(Figure 1)

The birth of a new generation of portablePCs – which are wireless-LAN ready andable to handle handwritten text and voice– can ease the design of tomorrow’sinformation systems. These tablet PCs canconvert handwriting and voice input intocoded text, but in fact it’s possible toenhance usability simply by using thetablet PC as a graphical input device.

If the application is implemented using acareful blend of handwritten and codedinputs – operated simply using a stylus –the user will think he is using an electronicpen and an electronic sheet (see figure 2).The usability threshold in this case will bevery low and the learning curve easy todeal with.

Not all applications can be built in thisway, but hospital information looks like agood candidate: clinical documentation,for example.

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The network

In general, a hospital information systemhas stricter constraints than other kinds ofsystems. It’s easy to see why: just thinkabout the characteristics of a typicalhospital LAN:

1. The LAN can be used to carry voice and video. This means a fault could compromise the hospital phone network: a very dangerous situation. In order to avoid this, there are normally two different networks – one for data and one for telephony or, in a few cases, one with very high SLAs

2. Traffic congestion lasting a few seconds, resulting in a short denial of service, is normally not a problem in anoffice environment. In a hospital, where medical devices can be attached to the LAN, it could be extremely

serious. It is mandatory to ensure the separation of different data types, avoiding any media monopolisation and resulting denial of service. This means using Quality of Service techniques

3. The subnets with medical devices actually linked to the patients – for instance, those in the A&E department or in surgery – must meet demanding electrical security standards in order to guarantee patient safety (Figure 2)

The first and second points above may bemore or less familiar, but the third isspecific to the healthcare environment. Ifyou have MDs (medical devices) attachedto a LAN, the network must be properlydesigned in order to support them.Figure 1, for example, shows a specialimplementation for surgery.


Surgery Room

MedicalDevice

MedicalDevice

MedicalDevice

Room LANSwitch

Equipotential Node of the room

Fiber optics connection

The subnet of the surgery room is connected to the back bone by means of fibre optics. In thisway, connecting the switch of the subnet to the equipotential node - the ground node - of theroom it is possible to maintain electrical safety even if the external link is accidentally grounded:the fibre optics cannot conduct electricity, so the switches and attached devices are isolated andcannot be grounded externally.

Backbone LAN

Figure 2

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The Dubai Healthcare City project

Dr. Martin Berlin, Chief Strategy Officer Dubai Development & Investment Authority

ubai Healthcare City (DHCC) is a $1.8 billion project fundedthrough public and privatesector partnerships that aims to

attract a regional annual market of about$2 billion of the US$74 billion spent onhealthcare in the region. Phase one of theproject, the Medical Cluster, which consistsof approximately four million square feetof land in the heart of Dubai City behindthe Grand Hyatt Hotel, is due to open itsfirst facilities during the last quarter of2004 and to be completed by 2006. Thisfirst phase will consist of the AcademicMedical Centre and a Medical Cluster forprivate medical healthcare serviceproviders, and a three-star hotel andfurnished apartments facility. (Figure 1)

A Wellness Cluster will also be addressedin the second phase of the project, whereapproximately another nine million squarefeet of land has been allocated. TheWellness Cluster will be launched early2004 and is expected to be finalised in2008. It will provide opportunities toestablish healthcare businesses in the areaof Wellness/Resort, alternative medicine,check-up facilities, beauty enhancement,cosmetic plastic surgery, sports medicineand other prevention businesses.

Based on a rough market research, theGulf Co-operation Council is estimated to

spend more than $2.5 billion a yeargetting medical treatment abroad, mostlyat healthcare providers in the UK,Germany and the USA. The aim of DHCC isto plug the regional gap for specialisedhealthcare services for patients andprofessional healthcare staff byestablishing a service portfolio, includingan academic teaching/ university hospital,day clinics and outpatient medical centres,a post-graduate medical school and a lifescience research centre. The aim is to offerthe full value chain of healthcare services,from early prevention and healthmaintenance right through torehabilitation and longterm care.

The site for DHCC is already in an areapopulated by three of the city’s majorhospitals. But the aim is not to make thesefacilities compete. The idea is to create acomplementary system to Dubai’s existinghospitals, motivating them to upgradetheir current service level and addingmedical education and applied clinicalresearch to the value proposition of theAcademic Medical Centre

The Academic Medical Centre as the corecomponent of Dubai Healthcare City willprovide the triangle of medical care,education and research. The medical carewill be covered by a tertiary care unit, a250- bed Teaching/University Hospital witha planned expansion to 500 beds. It willspecialise in areas of specific concern to

D

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the region, such as cardiology, oncology,diabetes, urology, orthopedics andpediatrics and provide medical care to aninternational standard brought by a well-known branded hospital.The medicaleducation will initially start with a focusedapproach in postgraduate medicaleducation and continuous medicaleducation, which will both be lead by theJoint Venture established between HarvardMedical International/Harvard MedicalSchool and Dubai Healthcare City. It is alsoplanned to include education of alliedhealthcare professionals, in particular anursing school, and later on,undergraduate medical education. Theresearch component will also be focusedin the area of applied medical research.

Initially, it will support research projectsabroad in disciplines and topics that arerelevant to the region and which could beeasily transferred back into the region.Longterm, the research centre will alsostart basic medical and life scienceresearch supported by a Dubai research Foundation.

The medical cluster will contain healthcareentities such as day clinics, privatehospitals, diagnostic centres, rehabilitationcenters, pharmaceutical companies andmedical device companies. Day clinics willbe offered to GPs on a 100% ownershipbasis, giving them access to the healthcarefacilities on site. The first day clinics areexpected to be operational by the end of2004. The entire infrastructure

Nutrition Centre

Wellness Centre

Check up Facilities

Resort & Spa

Sports Medicine

Health Farm

Day Clinics

Private Hospitals and small Clinics

Transplantation Centre

Diagnostic Centre

Pharmaceuticals/Devices

Rehabilitation Centre

University Hospital

Dubai Medical School

Life Sciences Research Centre

Hotel/Apartments

Healthcare Services

Telemedicine/Telehealth

Wellness Cluster Medical Cluster

University Medical Complex

Figure 1.

‘It is a radical vision that is underpinned by technology –

creating digital, paperless, efficient, speedy transactions for

the patient and physician.’

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development for the location will beinitiated towards the end of 2003 and isexpected to be finished by the end of2004. A healthcare mall with retailfacilities for medical and healthcarerelated products is also included in themedical cluster.

Wellness is a high priority in healthcareservices in the Middle East, especially inbusiness centres such as Dubai. TheWellness Cluster will focus on preventionand general health maintenance, andfeature superior facilities to those found atsome of the city’s best hotels. It will housealternative medicine, check-up facilities,beauty enhancement, cosmetic plasticsurgery, nutrition centers, sports medicineclinics, plus a resort and spa that willaccommodate patients, families and staff.

Supporting and integrated into theAcademic Medical Centre and the twoclusters will be various healthcare servicecompanies, including those involved intelemedicine and e-health that will provideservices that will integrate the AcademicMedical Center with the wellness andmedical clusters and also provide links tospecialist medical institutions both in andoutside the region. The ancillary serviceswill also cover areas such as healthinsurance, healthcare consulting andprovide hotel and furnished apartmentfacilities for relatives of the patientscoming to Dubai Healthcare City fromabroad.

Further, it is important to stress that DubaiHealthcare City has been established as afree zone, which provides all theoperational, administrative and ownership advantages to foreigncompanies and investors.

Dr Martin Berlin, the Chief StrategyOfficer of Dubai Development andInvestment Authority, explainshow the Healthcare City is going to be developed.

Integrating Dubai Healthcare City

The idea and objective of Dubai HealthcareCity is to provide an integrated approachtowards healthcare in one physicallocation, from early prevention and healthmaintenance all the way through torehabilitation and longterm after-care.All these components will be providedwithin Dubai Healthcare City and shouldbe integrated into a real Healthcare Community.

With respect to the integration, the ITtechnology is of particular importance. Weare currently looking for an integratedoffering of IT for the entire DubaiHealthcare City, which will mean thatthere is one integration platform whichwill be mandatory to all players in it. Ourobjective is to create a joint venturepartnership with one key player orconsortium of IT companies who are ableto deliver this IT interest factor. That couldinclude the basic hardware infrastructure,the basic software and even sophisticatedASP offerings or customised solutions forplayers in the city.

But we would like to go a step further. Wewould like to have this integration drivento an extent that is not only thecomponents themselves that are paperlessand integral, but all processes betweenthe components are seamlessly integrated.

For example, let’s imagine I’m enteringDubai Healthcare City as a patient by


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visiting a general physician for a healthmaintenance check-up. The physiciancarries out a full physical examination,including a blood test and imaging/radiology. This will all be done in a digital,paperless manner, so all the patient andspecimen transfers and the respectiveresults will be collected in my patientrecords with the doctor.

When, in this example, the doctordiagnoses some serious heart problemthat needs to be further explored or evenfixed, he decides to transfer me to theteaching/University hospital next-door. Thepatient record with all the patients’histories will be sent not in a paperversion but digitally to the hospital. So thestaff there are not forced to do a basicdiagnosis again, which will materialise in ahuge overall cost saving. In a lot ofhealthcare systems, there is duplication of cost because of doubling of diagnostic services.

With this kind of approach towards IT inhealthcare, you are saving costs becausetime spent in diagnosis creates a huge billon overall healthcare and you are savingtime as well, as the patient history anddata are been transferred with the patient.So, let’s suppose that in my imaginaryscenario surgery is required and that Ineed some kind of rehabilitation withphysical exercise. Again, this will be arehabilitation component within DubaiHealthcare City, and my paperless patientrecord will accompany me so that staffthere know my entire medical anddiagnostic history and they can then carryout a final check-up and diagnosticsbefore they send me home again. So,wherever the patient is, his informationwill stay with him and at the same time

the information is accessible by therespective treating institution. That’s fromthe patient’s perspective.

The industry or research perspective is alsovery important. Let’s assume that youcollect 10,000 of these cases. For the firsttime in the region you have a valid andhigh-value medical database. There is abig need for this in the region.The lack ofmedical and healthcare data has causedthe region to be behind in public health issues.

The case example I have just described isan internal Dubai case. If you have, forexample, an outpatient doctor residing inAmman, Jordan, we would like to doexactly the same. We would like to have areferral network of high-quality medicalinstitutions that meet the quality criteriaand standards of Dubai Healthcare City inthe entire region and finally even on aglobal scale.

Problems with the mail would disappear ina paperless network and referral system.Other opportunities are complicated andsophisticated cases that could have asecond opinion via telemedicine services.Second-opinion diagnostics are certainly ofvalue to the doctor and the patient.Telemedicine, from my perspective indiagnostics, is the most appropriate anddirect application of telemedicine within the Dubai Healthcare City and in my opinion within the entire healthcare industry.


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New challenges

One of the questions that I have beenasked many times is, why is DubaiHealthcare City unique? Actually, all thecomponents from the Academic MedicalCentre, ie teaching/university hospital,medical school and research centre, themedical cluster to the wellness cluster withhealth farm and nutrition centre, are notunique in themselves – what makes itunique is that we have put them into onelocation and attempted to fully integratethem in an holistic healthcare approach.And we have the possibility to do green-field development. This is an absolutelyunique value proposition for the regionalmarket. Developed countries build orrebuilt on existing facilities, whereas wedo it completely green field. We evendecided to separate it from the existingsystem completely, so we can eventuallyimprove the entire healthcare system.

We would like to create a benchmark sothe existing system can improve, and wewould like to help it in doing so. That’swhy we put it into a location in themiddle of Dubai, where we have directconnections to the other hospitals.

The new project requires an IT integrationplatform to be built. Certain big hospitalpartners are going to have their hospitalmanagement and information systemsalready. Our requirement will be tointegrate these systems into the overall IT infrastructure.

We would like to focus this particular jointventure first on health IT aspects. Thatmeans patient records, healthcareprocesses, integration on the healthservice level and suchlike, taking

ownership to make sure that theintegration in health service and ITintegration takes place.

In terms of IT technology I would sayeverything is possible, but we need tocome to a solution that is also a realisticone that can be implemented from thepatient and provider point of view. Someof the initiatives we are looking at includea PDA that is placed at every bed, whichgives patient information updates ofinformation about a certain patient.Another proposal is that each patient isgiven a personalised PDA when they enterthe Dubai Healthcare City. We are alsoplanning to have an IT leverage patientinformation centre that is physically onsiteand approachable from anywhere throughWAP services. Clearly, in terms of thetechnology there is no limit as long as weare realistic in our budget and needs.

Building an education andresearch platform for the future

With respect to Medical Education,Continuous Medical Education is what wewould like to develop first here in Dubaitogether with our partners from HarvardMedical International. We would like toestablish a system where doctors have toqualify in certain continuing medicaleducation courses to earn credits in orderto get a renewal of their medical licence.IT infrastructure is definitely going to behelpful in this scenario, because some ofthe courses might be taken through e-education, while some might be physicalcourses, and conferences using theconference centre on site.


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Postgraduate education is anotherbuilding block in medical education. Wewant to attract doctors that are comingout of medical school looking for anopportunity to specialise in a certainmedical discipline to our specialist andresidency training. And as we are linkingthis into the global education network, e-education will certainly play a role, suchas video-conferencing certain courses fromelsewhere in the world into Dubai. And wecan use our network to create a doctors’community that links together doctorsworking within the city. This would linkdoctors to others in different disciplines,creating second opinion links of doctorswithin Dubai Healthcare City and Dubai,regionally and even globally, thusestablishing a knowledge exchangenetwork for doctors. The postgraduateresidency training will be kick-started bysending doctors from the region to theHarvard Medical School-affiliated hospitalnetwork where we have secured a numberof residency training slots. These doctorswill be instrumental in starting thehospital services in Dubai Healthcare Cityonce they return from their clinicaltraining in Boston.

Research is an equally important priority.The triangle of practice, education andresearch is an essential combination toboth a sustainable and world-class placein healthcare. We’ll give doctors the

opportunity to participate in researchprojects or to do their own research. Aconcrete example is clinical trials done bythe pharmaceutical companies themselvesor by clinical research organisations here.The idea is to create a Dubai ResearchFoundation that will support and fundresearch projects of partner healthcareproviders abroad and within qualifiedinstitutions within Dubai Healthcare City.The first of these projects has beeninitiated with Mayo Clinic Rochester in the area of cardiovascular proteomics research.

The physical presence of research withinDubai Healthcare City will start withsmaller labs for applied clinical research,so research will then be conducted inhospital facilities or clinic facilities. Theapplied clinical or applied patient researchis the one we would like to start with,because that brings direct value topatients and doctors. After this we wouldlike to get into basic lab medical and lifescience research, because to build this weeither need to have a good infrastructurelike Cambridge, Boston, Munich – whichwe don’t have at the moment – or a lot ofmoney like Singapore with its BiotechValley, which we don’t have either.Therefore we need to take a differentapproach. We will go through appliedresearch, which is actually an advantagefor doctors because it directly leveragesthe doctors’ services, and gives anopportunity for pharmaceutical companiesin terms of funding to participate in Dubai Health Care City.

The healthcare business is very much alocal or regional business. Therefore toachieve success we need to drive theabove-mentioned projects and we would


Research is a priority. The triangleof practice, education andresearch is an essentialcombination to both a sustainableand world-class place in healthcare

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like to do it essentially from DubaiHealthcare City in conjunction with ourhealthcare provider, education andresearch partners, where Harvard MedicalInternational and Mayo Clinic are currentlythe most prominent – but we are stillopen to build further key relationships andwe are keen to do so also with someEuropean institutions, eg in the area ofthe creation of a Diabetes Centre. Withrespect to IT, I think the next generation ofphysicians will be much more in favour ofIT services than the current generation,and therefore they are going to go for thiskind of services of IT integration intohealthcare. Current doctors are far lesslikely to use IT to get a second opinion ofa doctor in London because most are notthat familiar with technology. The nextgeneration, however, will be different,having been brought up with it.

Conclusion

Dubai Healthcare City is an ambitioushealthcare project to integrate into asingle, networked physical and ‘virtual’healthcare community, many differentservices supporting the medical treatmentof illness, the promotion of wellbeing,health education and research. It is aradical vision that is underpinned bytechnology – creating digital, paperless,efficient, speedy transactions for thepatient and physician throughout theirjoint journey of care and for otherhealthcare professionals through theirwork, end to end. Realistic objectives havebeen set for this grand project however,especially regarding the complex fundingrelationships between research, educationand treatment to deliver high levels ofcapital investment in facilities, people and infrastructure.


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National policy and strategy for ICT in healthcare: GermanyReinhold A. MainzCommissioner for TelematicsNational Association of Statutory Health Insurance PhysiciansCologne, Germany

nformation and communicationtechnology (ICT) and theestablishment of a legal andeconomic framework form the two

mainstays of Germany’s medium-termstrategy for healthcare telematics. The situation is best understood bycomparing the position of the FederalMinistry for Health and Social Security(“Bundesministerium für Gesundheit undSoziale Sicherung – BMGS”) – principally apolicy-making body – with that of theindependent sector, which actuallyprovides the services on a contract basis and is therefore at the sharp end of the industry.

This comparison throws up a cleardistinction between the short termobjectives and targets of the federalministry and those of the serviceproviders, who operate under theumbrella of federal or state law. Thedifferences between the two parties areoutlined in this essay.

In the field of health telematics,independent contractors at the federallevel work together within the‘Aktionsforum Telematik imGesundheitswesen – ATG’ (Action Forumon Telematics in the Health System;atg.gvg-koeln.de). This body was foundedin 1999 to get the various parties aroundthe same table, introduce sometransparency to the proceedings, assist in

arriving at a consensus and – finally –prepare recommendations for action. Thelatter now constitutes an important pointof reference for all service providers in theGerman healthcare system as well as therelevant government departments.

The ATG’s objective is to improve thequality of medical care and to createopportunities for increased efficiency,largely by promoting the exchange ofinformation through the use of ICT inspecific areas. Particular attention is paidto those areas where operational efficiency is compromised by existingpractice, or where there are manydifferent parties involved.

While the federal ministry is responsiblefor legal matters and for building aframework for statutory health insuranceand healthcare delivery, the regionalauthorities (German states or ‘Länder’) are mainly involved with setting guidelinesfor physicians and other healthcareworkers. They are also responsible at the same strategic level for hospitalhealthcare provision.

At the sharp end, however, the minutiaeof day-to-day operations are laid downcontractually between the various parties,which include insurance funds andstatutory healthcare associations.

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Different perspectives

The BMGS favours the immediateintroduction of an electronic healthpassport, in the form of a smartcard, as atool for managing all healthcare datarelated to each individual patient. There’sa political motive here: to empower theindividual by putting him in charge of hisown health records and, in the process,subordinating all healthcare services tothis principle. The BMGS sees theelectronic health passport as the driverbehind any implementation of a telematics infrastructure.

The ATG, on the other hand, feels that thisis putting the cart before the horse. Inorder to build a national telematicsinfrastructure, you need first to provide allthe different parties in the healthcareindustry with an efficient means ofcommunicating electronically, securely andin a manner that is legally acceptable.Only then can the patient be given aviable role in this process, perhaps byusing a smartcard.

Furthermore, the independent sector seesthe driver for change and improvement aslying in new methods of cooperationwithin the healthcare delivery process, forexample by disease managementprogrammes or integrated care, where thecooperation between different healthcare

sectors is defined by specific contracts. ICTwould play a dominant role in these newpartnerships and specific applicationswould be selected on the basis of howmuch money they would be likely to save.For example, electronic prescription(including the whole medicationmanagement process and a personal drughistory as a basis for decision supportsystems) and structured electroniccommunication among all healthcareparties are currently prime candidates forfurther action.

Another example of this difference inapproach between the two parties can beseen in the idea of an electronic patientrecord or electronic health record (EPR).Although both approaches take as astarting point the original medicaldocuments, what happens after that –when the information is processed, storedand later distributed – is quite different ineach case. (Table 1)

The federal ministry – always keen tochampion the rights of the individual –prefers a concept of patient-centred datastorage and management. The actualservice of maintaining and providing theEPR would be the job of privatecontractors. The patient himself wouldhave the right to decide whetherinformation was included or not. Thismeans, however, that in the final analysis

‘Patient-centred care implies seamless healthcare delivery

between different healthcare industry sectors. To ensure this,

any patient-related data has to be available “just in time”.’

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the patient record is likely to beincomplete, in which case the physicianscannot rely on it. The EPR could thereforein fact be dangerous to the patient andcould hardly be considered suitable forimproving the quality of healthcaredelivery or the efficiency of the health service.

The ATG, on the other hand, would ratherpursue the idea of an EPR that is, at thevery least, complete and accurate.Patients’ rights can still be protected:information would only be available via a

secure network and by secureauthorisation to those healthcareproviders authorised by the patient.Furthermore, if the patient ‘locks’ an item,all related data can also be locked.However, the healthcare providers can atleast rely on the data view they haveaccess to.

On a more technical note, the EPR wouldinvolve the integration of distributedstored data. This would be done bymiddleware with record look-up services,doing away with the requirement for a

National policy and strategy for ICT in healthcare: Germany

Main differences between strategies in Germany

Strategy of the German Federal

Ministry for Health and Social Security

Strategy of the independent health

system providers in Germany

Smartcard as a tool for patient-

managed data.

Implement a telematics infrastructure

using appropriate (communication)

applications. Integrated electronic

healthcare record should be a second

phase objective.

Political motivation: championing the

rights of the individual to manage their

own health resources and data.

Cost-benefit orientation: applications

should improve the quality and efficiency

of healthcare processes.

Patient-centred data storage. Purpose-oriented data with access to

original documents.

Free decision by the patient on storage

or deletion of data.

Complete data available via secure

networks and usable by authorised

healthcare workers; the patient can

authorise or lock access to “views”.

(Personal) electronic health record as a

service offered by private companies

based on copies of the original

documentation.

(Integrated) electronic health record as a

common service of the health system

based on the original documentation.

Table 1

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master patient index. Even a single uniquepatient identifier would be unnecessary; aspecial middleware service could serve alldocuments belonging to the same patientand required for a specified purpose – thepatient could be referenced by any one ofa number of unique identifiers.

These differences of approach can befurther complicated: the independentsector is responsible for theimplementation of telematics applicationsand infrastructure within the frameworkof federal or state law. This means that –quite apart from any difference inapproach for political or profit motives –any discussion has to operate at twolevels: the umbrella of statutorycompliance and the nitty-gritty ofcontractual definitions and operational procedures.

Looking to the future

Despite these differences of approach, thefederal ministry and the organisations ofthe ATG have agreed to work together inimplementing selected applications on anationwide basis and building whatevertelematics infrastructure those applications(or others) might require. It’s theministry’s job to define the frameworkarchitecture and any associated standards;the actual development, implementationand operation of the services are the

responsibility of the independentcontractors.

Planning for both programmescommenced in July 2003 and wasscheduled for completion in November2003. The e-prescription and ‘doctor’sletter’ applications will be availablenationally in 2006. Each patient will begiven a smartcard, which will allow accessto prescriptions, letters, a personal dataprofile for emergencies and a personaldrug history.

Summary

The health telematics strategies of theFederal Ministry for Health and SocialSecurity and the ATG appear at first glanceto be in conflict. However, the division ofresponsibility between the two bodiesallows them to coordinate differentapproaches.

The time schedules are very optimistic,especially since the contractors will haveto fill in a great deal of detail at theoperational requirement level. In the firststage, Germany will focus on electroniccommunication between the healthcarepartners and on introducing a healthpassport in the form of a smartcard,enabling patient access to personalhealthcare information. The full EPRprogramme is unlikely to be implementedbefore 2010, always provided the basic concept is cleared by all parties beforehand.

Benefits

Patient-centred care implies seamlesshealthcare delivery between differenthealthcare sectors. To ensure this, any


Each patient will be given asmartcard, which will allow accessto prescriptions, letters, a personalprofile for emergencies and apersonal drug history

70

patient-related data has to be available‘just in time’. Furthermore, anonymousdata derived from the aggregation ofindividual records must be available forsystem-oriented analysis in order toimprove the overall quality and efficiencyof the system and to improve patient-oriented services.

This means that application specificationshave to be worked out from a globalperspective, taking the whole of thehealthcare system into account. This is apolitical task! However, this top-downframework architecture enables thevarious solutions, components, servicesand tools to work from the bottom up,providing improved patient care. And oncethe legal and political framework is inplace, it should be possible to fostercompetition and cost-saving at thecontractual level without compromisingthe rights of the individual.

Well-defined statutory and technicalframeworks, together with the assessmentof their impact on the physical health ofthe individual and the financial health ofthe state, are the prerequisites forinformed political discussion. Germany istaking the first steps into a nationwidetelematics infrastructure for the healthsystem: the major benefits are yet to comeand will spring mostly from theintegration of the EPR and thedevelopment of integrated data flow thatsupports patient-centred care. A nationaldata infrastructure is required to enablethis and, at the time of writing, there isnot long to wait.


t's all change in Italy as the SSN(Servizio Sanitario Nazionale –National Healthcare Service) races to keep up with the latest political

and social developments. Current criticalissues include:

• Significant devolution of power from the state to the regions (deriving from the amendments to the V Article of theItalian Constitution, LD 347/2001 and L.405/2001)

• The ‘Fundamental Levels of Healthcare Services’ (FLHS) protocol, which establishes strict relationships between ‘essential’ and ‘appropriate’ medical care

• A burgeoning elderly population, highlighting the need to redefine SSN funding policies, in particular those which deal with the allocation of resources to treatments for acute and/or chronic illness

These issues, amongst others, underlinethe need for a nationwide databasecovering – and accessible by – all theregions. This database would hold all theinformation required to establish anappropriate balance between the qualityand the cost of healthcare services.

In order to get the ball rolling, thecommittee, which mediates between theaffairs of the state, the regions and theindependent provinces of Trento and

Bolzano, signed a framework agreementfor the development of a new nationalhealthcare information system, the NSIS.The framework agreement clearly sets the agenda:

• That the NSIS should encourage local autonomy, while providing appropriate support to all parties – whatever their position in the hierarchy – within the SSN

• That it should help to bring the SSN players closer together, through the open exchange of information, whetherthat information be the province of theentral administration departments, the regions, or independent provinces and healthcare agencies

• That it should promote collaboration and integration between diverse IT systems, previously managed independently by each region and local agency

• That it should be able to focus on detail as well as the big picture, in particular devoting increased attention to issues of acuteness and chronicity

• That it be citizen/user-centric, providingan integrated healthcare information system that targets the individual

As a result, the ‘high concept’ of the NSISis open information access, filling in gapsin the healthcare record by providingseamless access via a framework that’scompatible with the computing

I

72

Basic concept model of the new nationalhealthcare information system (NSIS)Walter Bergamaschi, Director, Ministry of Health Information Systems, Italy

73

requirements of every level of the SSN:local, regional and central.

Another fundamental principle guiding the development of the system is focus:breaking down the concept ofhospitalisation into a much broader rangeof services (outpatient specialist visits,accident and emergency, pharmaceutical

assistance, post-acuteness and chronicityservices, services for the elderly).

A comprehensive strategy like thisnecessarily encompasses a large numberof internal dependencies, but the overallconcern remains the balance between thecost and the quality of national healthcareservices. Quality and cost in healthcare are

• Health Spending (Public +Private) = 90 bn Euros (8.1% of GDP)

• Healthcare delivered through public and private accredited in 21 regions that define healthcare services, controlling expenditures and using FSN (Fondo Sanitario Nazionale – National Grant)

• GP = 47261; hospital doctors =109684

• 1606 hospitals (59% public vs. 41% private)

• Total staff 1,000,000

• Ministero della Salute must guarantee to all citizens that their constitutional rights related to health will be respected and promote healthcare main objectives through PSN (Piano Sanitario Nazionale – National Healthcare Plan). This role is oriented to coordination and creation of general framework

Editor’s Note: Italy’s Health System

‘Any new healthcare IT system must be capable of

capturing this critical, real-time process: the point at which

the patient’s needs are translated by the physician into

services, quality and costs.’

74

determined by doctor-patient interaction.Only at this level is it really possible tomonitor the economic and qualitativeperformances of the system as a whole.

Any new healthcare IT system must becapable of capturing this critical, real-timeprocess: the point at which the patient’sneeds are translated by the physician intoservices, quality and costs.

The foundation stone of the NSIS istherefore the individual medicalinformation system. This database holdsinformation related to healthcare serviceson an individual patient basis. It providesthe raw data required to evaluate theappropriateness of any requestedtreatment, its medical consistency, theaverage time spent by the patient on thewaiting list, the expense incurred by thelevel of service delivered, as well as theinitial conditions against which the finaloutcome can be assessed.

Gathering and processing all the datarequired by NSIS for the development ofan individual medical information systemrequires:

• Collecting homogenous information related to specific events (hospitalisations, outpatient specialist visits, home care and treatment, etc)

• Tracing all events to individual citizens interacting with the SSN

• Accessing additional care-flow information, enabling the identificationof diagnostic and treatment routines followed by patients

Initially, this information will be used bythe SSN for management purposes. As the system matures, it should be able

to provide diagnostic, treatment andrehabilitation features for individual patients.

It’s worth noting that the implementationof a nationwide individual medicalinformation system also requires:

• Tools enabling citizens throughout the entire territory to be uniquely and 100% reliably identified;

• The gradual development of regional information systems to power the NSIS and in particular the integration of local healthcare and administrative processes, enabling the collection of electronic health records for all welfare beneficiaries

The NSIS would therefore become a‘connectivity backbone’ between regionalIT systems, making SSN managementmore efficient and also delivering betterservices to the individual, in particular byenabling rapid access to medical historiesfor patients, even when they arehospitalised far from home and in adifferent administrative region.

Comprehensive integration of individualmedical information is going to take placein several distinct stages, each morechallenging than the last. In the firststage; information will be leveragedmainly for the achievement of SSNmanagement objectives. The followingstages will be aimed at graduallyproviding access to information toimprove the level of treatment andservices delivered to individuals. In its finalstage, the system will allow the creation of comprehensive files for each patient,containing their entire medical history andincluding the results of treatments – actual

Basic concept model of the new national healthcare information system (NSIS)

75

and even suspected diagnoses. (Figure 1)

The NSIS isn’t just going to be lookingafter the patients, however. It’s alsointended to provide a valuable tool formonitoring the healthcare infrastructure. It will facilitate the assessment of hospitalsand other centres charged with deliveringhealthcare and welfare services. Currentinfrastructure monitoring is mainly basedon a hospital-centric model; it has becomeapparent, however, that decentralisationand the increased emphasis placed on thetreatment of chronic disease (due toincreased life expectancy) has changed thehealthcare landscape. In particular:

• Regional authorities have manoeuvred hospitals into modifying the range of services they offer, as well as changing their organisational structure

• New and existing local healthcare centres delivering welfare services are becoming increasingly important withinthe SSN

As a result, people need to accessinformation that gives a clear picture of allthe resources available, at every level ofthe healthcare system and regardless ofwhere they are. What’s more, thisinformation has to be expressed in astandardised format so that regionaldiversity can be fairly monitored.


4

Health system

Delivered treatment (result)

Diagnose/Diagnostic suspicion andpersonal information

Social integration

Focusstudio dfeasibility

INFORMATION

234

STAGE

Health system1 Focus of feasibility

study

Figure 1

All this is central to the NSISimplementation: a clear understanding ofthe SSN healthcare providers – the supply– and an equally clear understanding ofthe patients – the demand. In the NSISconcept model the patient, the treatmentand the service provider are all buildingblocks for the entire system and thesource of all information. Linking thesethree elements makes it possible tomonitor and manage both individualmedical information at one end of thescale and the entire healthcareinfrastructure at the other. (Figure 2)

This degree of scope makes it possible forthe NSIS to underpin all other strategicobjectives – monitoring the fundamentallevels of healthcare service,appropriateness, costs, waiting lists, drug life cycles, public investments andmental health.

Monitoring Fundamental Levels ofHealthcare Service (Livelli EssenzialiAssistenza) and appropriateness meanskeeping track of services delivered at

different healthcare levels and evaluatingthe balance between how desirable and effective they are, and how much they cost.

This doesn’t require the implementation ofan independent IT system; what it needs isa means of interpreting the data madeavailable to the NSIS – and the individualpatient data in particular.

In the normal hospital environment,evaluating appropriateness tends to mean:

• Being limited to the assessment of specific operations or other events, since anonymous global data (such as area of residence, age, service delivered, service provider etc) is not available to help determine appropriateness criteria

• Being frustrated in any attempt to determine appropriateness criteria for care-flow as a whole, as opposed to specific procedure or treatment categories, because such an attempt would require a system which


76

Monitoring and preservation of mental health

LEA and appropriateness

Drug life cycle

Monitoring costs

Waiting lists

Public investments in

healthcare

Individual medical info integration

Monitoring healthcare

infrastructure

Figure 2

collates all medical events for each patient and links them with diagnoses (actual or suspect)

It’s clear, therefore, that the developmentof best practice in monitoringappropriateness is inextricably bound upwith the development of an individualmedical information integration system. Toanswer this problem, the monitoring andFLHS (LEA) systems will be completedgradually in two main stages: the first willaddress a generic appropriateness level forhealthcare services, while the second willfocus specifically on the appropriatenessof care-flow.

Monitoring costs means identifying costsat both ends of the healthcare market: theservice-provision end and the consumerend. In strategic terms, the manner inwhich healthcare costs are monitored hasbeen redesigned by integrating:

• Agency accounts• Cost aggregates by service provider• Cost aggregates by levels of service

Monitoring costs will enable cost analysesby category, making it clear how andwhere costs arise and where the money isgoing. Either a supplier or a service can betreated as a cost-centre and analysedaccordingly, enabling the user to assign anaccurate cost to a single treatment.

Monitoring waiting lists can be doneeither globally to highlight trends withreference to particular services or suppliers(average wait time for a hip operation, forexample), but can also be focused downto the actual time individual patients have to wait.

Waiting lists are a very complex issue –and they’re also top priority. Thecomplexity arises because there are somany issues to consider on both sides: theservice provider (supplier) side and theconsumer (demand) side.

The demand side delays are influenced by:

• Increasing demand for healthcare services due to population aging

• Lack of demand management causing inappropriate delivery of services

The supplier is influenced by:

• Availability or lack of human, technical and physical resources

• Organisation and efficiency of delivery methods

• Competitive pressure

Monitoring the average wait-time inrelation to patients, services and supplierswill allow us to see both sides of theequation. From a demand perspective thiswill mean monitoring the average waittime for each individual and/or relatedcategory (eg area of residence), while onthe supply side it will imply monitoringindividual service providers and/or relatedcategories (eg location).

Monitoring and protecting mental healthinvolves integrating information related tosuppliers, services and patients.


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NSIS is a success story that showshow quality planning accompaniedby intelligent strategic thinking cancreate a new national healthcareinformation system

Following the approval by the State-Region Conference of new policiesregarding the National Mental Health ITSystem (October 2001), the developmentof the NSIS will be developed in line withall other related developmentenvironments, particularly the individualmedical information integration systemand the healthcare monitoring system.

Monitoring drug life cycle and use ofmedication involves linking patient data toinformation about drug life-cycles andmonitoring the use of medication.Monitoring drug life-cycles and the use ofmedication implies, on the one hand,keeping track of all stages of the drug lifecycle – from the very early stages ofresearch and discovery to clinical trialsleading finally to marketing approval,release to the general public and finallyelimination due to lack of efficacy or side-effects. On the other hand, you need tolink drug usage information to individualpatients and also to the various

distribution channels.

Observatory for public healthcareinvestments: the information systemenables the planning, assessment andmonitoring of investment projects.

Where government funding is earmarkedfor healthcare, very close attention has tobe paid to planning and monitoring howthat money is invested. A detailed policysetting out how public healthcare fundscan be used, in line with SSN objectivesand requirements, has been drawn up.

Where particular objectives have beenpublicly set, it is essential to ensure a linkwith the ‘Monitoring the HealthcareInfrastructure’ programme in order to:

• Enable tracking through to completion of specific projects and identification ofthe funding sources used

• Enable prior and post evaluation of project investment opportunities based on a comprehensive break-down of all


78

ACTIVATION PRIORITY

4. Social integration

2. Results

2. Complementaryinformation

MonitoringLEA and

appropriateness

Individualmedical infointegration

system

3. Diagnose/Diagnosticsuspicion

3. Waiting time of diagnose/therapy path.

2. Specific appropriateness

1. Quick & Dirty

1. Current systemsupgrading

3. Drug use bycitizen

Monitoringhealthcare

infrastructure

Monitoring druglife cycle and use

Monitoringmental health

Monitoringcosts

Monitoringwaiting lists

2. Consolidated

balance sheet

2. AIC and life cycleintegration

ACTIVATION PRIORITY

1. Waiting time ex post

1. Genericappropriateness

4. Costs bytarget

3. Performanceevaluation

1. Monitoringperformance and structure

2. Waiting timeex ante

1. Health system

Monitoringinfrastructure

3. Drug useby citizen

Figure 3

information relating to the project• Enable benchmarking analyses in order

to assess the potential of single investment opportunities

(Figure 3)

NSIS is a success story that shows howquality planning accompanied byintelligent strategic thinking can create anew national healthcare informationsystem in Italy. It should be clear from theabove that the next steps of the NSIS aregoing to be wholly dependent on the twofoundation stones of the project:monitoring the healthcare infrastructurefrom a global perspective, and building anintegrated medical database based aroundthe individual.

Healthcare systems cannot changeovernight. The development of the NSIShas to take place within the context ofgradual change, but a phased approachensures that at least some tangibleobjectives can be achieved as soon aspossible. The hard work and thoughtfulcollaboration of services, andunderstanding of the importanceintegrating citizen centric services, havebeen crucial. To make sure we get there inthe end, there's also a longer-term visionfor each of the strategic objectivesinvolved, with intermediate milestonesalong the way. With everyone workingtowards the same goal, we can all haveconfidence in Italy’s new andcomprehensive health information system.


79

80

Developments in direction and delivery of IM&T for the NationalHealth Service in EnglandSir John Pattison, Director of R&D, and Dr. Peter Drury, Head ofInformation Policy, Department of Health, England

he early strategies for InformationManagement and Technology(IM&T) in the NHS were focusedon the requirements of

management and the internal market. Butsince 1992 the direction of travel for IM&Thas been guided by the principle ofperson-based systems that enable theintegration of care around the patient,with good-quality information formanagement (primarily) as a byproduct.This way forward has been reaffirmed byGovernment and NHS-wide developmentsin citizen and patient-centred policies.Until 2001/2 progress in the NHS wasbased on local IM&T implementationsguided by national strategy, standards andinfrastructure. But this approach was notdelivering what the NHS needed. Sincethen a national programme to deliver ITservices has begun to accelerate progressin integrated care.

Evolution of IM&T policy in theNHS 1979-1990

In the years since The Royal Commissionon the NHS of 1979 reported that ‘Themicro-electronics revolution is certain tohave a major impact in medicine, to adegree which it is likely very few of thoseworking in the NHS at present envisage.Improved data collection would assistbetter planning of services’, the impact ofinformation and IT on the direction anddelivery of services by the NHS has been

great – but not great enough. Theemphasis in the 1980s was on improvingdata collection to support bettermanagement and planning. The Griffithsreport (1983) had a major influence onthe requirements of hospital financesystems, and the Korner reports (1982-4)focused on the data that they believedwere needed by management teams tofunction effectively. These earlydevelopment of NHS information and ITpolicies have been summarised elsewhere(1). The idea that the NHS should have aformal, national information policydeveloped in the early 1980s and resultedin the publication of a ‘National StrategicFramework for Information Managementin the Hospital and Community HealthServices’ (2). The strategy was focused ondata management and systems; little wassaid about implementation issues, or of integration between differentsystems and benefits to those delivering(or receiving) services.

The NHS Review of 1989 introduced an‘internal market’ for health services. Inresponse to this, the ‘Framework forInformation Systems: The Next Steps’ (3)set out the information implications of theNHS Review. While information on activitywas needed to support the needs of theinternal market (eg concerning inpatients,outpatients, waiting times etc) for the first(and still the only) time, the implicationsof manpower, finance and estates

T

81

information were considered as part ofthe whole. But there was no explicit focuson clinical information priorities, otherthan a commitment to improve thedevelopment of coding and classificationsystems. There was little explicitconnection to broader NHS policies forservice development. Information and ITremained as something for the ‘techies’.


The evolution of NHS information and ITpolicy continued with the publication in1992 (4) of ‘Getting Better withInformation’. This introduced for the firsttime the principle that: ‘Information willbe person-based’.

In practice, however, the pressures todevelop the internal market meant thatthis principle was not part of mainstreamNHS culture – rather, the focus was onmeeting the information requirements ofmanagement. Nevertheless, this principleset a direction of travel that has beenfollowed ever since.

In the early 1990s, the integrated HospitalInformation Support Systems (HISS)project explored means of integratingsystems in hospitals so that healthcareprofessionals could work in amultidisciplinary manner, and sharing

elements of a common plan of care foreach patient. In community systems too itwas recognised that, ‘subject to securityand confidentiality safeguards,information will need to be shared withGPs, hospitals and other agencies toprovide a seamless service for patients’ (4, Handbook para 212). The benefits toGPs of good decision support, fast accessto waiting times and quality of serviceinformation, and notification of healthcarereceived by their patients in other parts of the NHS, were recognised. It was alsoclear that to enable integration ofinformation around the patient, asopposed to the department or aprofession, required standards and aninfrastructure that would enable fast and efficient sharing of information acrossthe NHS.

However, by 1997 it was clear that themanagement arrangements to supportimplementation of the InformationStrategy needed review. The incomingLabour Government produced its whitepaper on ‘The new NHS: Modern;Dependable’ (5). In the foreword to this,the Prime Minister, the Rt. Hon Tony Blair,noted that ‘This white paper marks aturning point for the NHS. It replaces theinternal market with integrated care’.Following a review led by Frank Burns,Chief Executive of an NHS acute hospital,the publication of a new information

‘In February 2002 a meeting with the Prime Minister

secured that most vital ingredient in any corporate IT

development namely support from the very top.’

82

strategy for the NHS, Information forHealth (6), in 1998 stressed the need forinformation and IT to support the corepurpose of the NHS: the delivery of care to patients.

The strategy re-emphasised theimportance of developing ElectronicPatient Records (EPR) within NHSorganisations about the services itprovides to a patient. But to offset the riskof fragmentation of a patient’s healthinformation, Information for Healthintroduced the concept of the ElectronicHealth Record (EHR). The EHR was to be asingle record for each patient, containingat least a summary subset of informationfrom every health organisation used bythe patient.

The scope of the strategy was now muchmore comprehensive. In addition to accessto records, the needs of patients as well asclinicians for knowledge about health andhealthcare was explicitly realised, eg in theintroduction of a National electronicLibrary for Health (7), the establishment ofNHS Direct (8) as the nurse-led call centre,and nhs.uk (9) for information aboutservices available. Again, the need tounderpin these developments with arobust national infrastructure thatconnected up the NHS and providednational standards and services wasreinforced.


Until 2000 there was no framework forinformation management across thepublic services. However, a strategicdirection for the modernisation of publicservices in England was given in ‘e-Government: A strategic framework forpublic services in the Information Age’(10). It proposed that the public sectormust embrace new ways of citizen-centricthinking, and new ways of deliveringservices (eg using intermediaries). Theissue was to give people the services theywant, when they wanted them and withthe minimum cost and bureaucracy. Andto do this the e-governmentinteroperability framework of standards(such as e-gif) was established (11).

The strategic direction for themodernisation of the NHS, as set out inthe NHS Plan published in 2000, reflectsthe e-government strategy. ‘Step by stepover the next ten years the NHS must beredesigned to be patient-centred – to offera personalised service’ (12). While thestructure of the NHS evolves (13) shiftingpower closer to the ‘frontline’, andnational standards for care are established(14), citizens need to have more choiceand knowledge about services available,performance criteria, health conditionsand treatment options.

To support the delivery of the NHS Plan,reflect the e-government strategy and toupdate ‘Information for Health’, in 2001 adocument was published entitled ‘Buildingthe Information Core: Implementing theNHS Plan’ (15). This described how theintegration of health services, bothinternally and externally in the context of

Developments in Direction and Delivery of IM&T for the National Health Service in England

83

e-government, would be supported by thedevelopment of a modern information andIT infrastructure capable of supporting awide range of applications, knowledgemanagement and electronic records.

At the end of 2001, an importantconference was held at which theSecretary of State, the Rt. Hon AlanMilburn, and the NHS Chief Executive, Sir Nigel Crisp, affirmed the need for all to understand that information and IT had to be part of the ‘mainstream’ ofmodernisation. It was vital to invest in IT if the NHS is to become more patient-focused and patients receive integratedcare (16).

In February 2002 a meeting with the PrimeMinister secured that most vital ingredientin any corporate IT development, namelysupport from the very top. The meetingendorsed the need for a dramatic increasein funding, a shift towards a centrallydriven, standardised, performance-managed implementation and an initialfocus on four elements. These were a highcapacity infrastructure to support the firstthree applications, namely electronicprescribing, electronic booking and, mostchallenging, a longitudinal electronichealth record.

In April 2002, a report by Derek Wanless

for HM Treasury entitled ‘Securing ourFuture Health’ was published. It confirmedthat ‘National, integrated ICT systemsacross the health service can lay the basisfor the delivery of significant qualityimprovements and cost savings over thenext 20 years. Without a major advance inthe effective use of ICT the health servicewill find it increasingly difficult to deliverthe efficient, high quality service whichthe public demand. This is a major prioritywhich will have a crucial impact on thehealth service over future years’ para6.22(17). Wanless too argued forsignificantly greater investment ofresources in IT.

In May 2002, the policy documentpromised at the February meeting withthe Prime Minister and entitled ‘Delivering21st-Century IT’ was announced (18). Atthe heart of it was the Integrated CareRecords Service (ICRS). While the EPR andEHR approaches couched policy in termsof systems, the concept of an ICRSrecognised that patients and clinicianswant a service, not a system. Modernhealth and social care involves patientsand professionals taking joint decisionsabout the management of illness. Theyneed to make these decisions supportedby records containing both enduring andcontemporary personal medicalinformation. Enduring information willinclude personal details, summary healthinformation (allergies, family history etc),reports of events (discharge summaries,clinical correspondence, etc).Contemporary information will include theinformation that is directly relevant to thecare being provided at that time, eg fromOrder Communications, Picture Archivingand Communication Systems, GP systems,NHS Direct systems etc. While the ways in


Without a major advance in theeffective use of ICT the healthservice will find it increasinglydifficult to deliver the efficient,high quality service which thepublic demand

84

which these services are going to bedelivered will change as Delivering 21stCentury IT is rolled out, the lodestone ofsupporting integrated care from thepatients’ perspective along their own carepathway remains.

In July 2003 a National Specification forICRS was published and delivery couldnow be initiated.

Delivery

1992 - 2001

If the direction of travel for informationand IT in the NHS since 1992 has beenconsistently guided by the need tosupport person-based systems, why hasprogress not been faster in delivering thebenefits of integrated care?

The early 1990s were a period in whichthe zeitgeist of the market economyencouraged ‘a thousand flowers tobloom’. There were many suppliers of GPsystems and of hospital systems. Manywere ‘home-grown’ by enthusiasts. The1992 strategy gave a national lead interms of policy, standards, guidelines, anddisseminating good practice. But it wasfor managers, clinicians and IM&T stafflocally to interpret and incorporatenational policies into local strategies tomaximise the opportunities from thecentral lead, and to make sound localprocurement decisions that supported thestrategy and complied with nationalstandards. But the only funding explicitlyavailable was for a number of nationalfacilitating projects and theimplementation of the infrastructure (egNHS-wide networking, and a uniqueidentifier – the NHS number). There was

little buy-in from the clinical ormanagement communities. One verdict onthis strategy was that ‘while it did deliversome important national infrastructure, itwas over-concerned with managementinformation, and failed to address the realneeds of the NHS for information to helpclinicians and managers deliver moreeffective healthcare and improvedpopulation health’ (Information forHealth, 1998).

The Information for Health strategy wasalso a ‘National strategy for localimplementation’. But it was accompaniedby the announcement of a £1billioninvestment programme. It also hadwidespread support from the clinical andmanagement communities in the NHS.Delivery was predicated on the ability ofHealth Authorities to develop ‘LocalImplementation Strategies’ that reflectedlocal priorities so that they could achievein their local information systems thevision set out in Information for Health.

Although the strategy was funded withmoney to support local implementation,the funding went into local baselinebudgets allocated to NHS organisations –albeit that it was ‘hypothecated’ and then‘ringfenced’ for use on IT. In practice,however, the pressures of balancing thebudgets and hitting other targets meantthat in many NHS organisations the fundswere spent on other priorities. During2001 it was becoming clear that relyingon ‘local implementation’ to deliver thenational strategy was not working. Manyin the NHS were asking the centre to takea stronger lead in delivery and arguingthat while local ownership of solutionsremained important, it was moreimportant to have some robust national


85

solutions in place that could be tailoredlocally. Particularly from a localperspective, the complexities of the ITprocurement process were daunting,although the benefits of frameworkagreements in a national procurementstrategy were acknowledged.Nevertheless, the NHS was clearly‘punching below its weight’ in gettingvalue for money from IT procurements.

At the same time, however, theGovernment was in the process of shiftingthe balance of power and decentralisingcontrol. So a shift towards more centralcontrol of IT was counter-culture.Nevertheless, the inability of the NHS totake a long-term view of the need toinvest in IT – difficult when there isfrequent structural change inorganisations and a high turnover ofmanagers – was clearly threateningdelivery of IT, and thereby themodernisation of the NHS. This allchanged with the support of the PrimeMinister in early 2002. An indication ofthe seriousness and determination behinddelivering this national agenda for NHS ITwas the decision to appoint a DirectorGeneral of IT. An individual with thenecessary expertise, experience and drivecould only be found in the private sectorand the UK Government had to beprepared to extend its salary structure tosecure the best person.

Delivery 2002 onwards

Delivering 21st-Century IT was launchedby Lord Hunt, Minister of Healthresponsible for IT, in May 2002. It waspresented as being essential to:

• Improve the patient experience and thequality of care

• Support service reconfiguration and frontline clinicians in delivering patient centred care

• Improve the capacity of the NHS to deliver change and reform

• Reform working and clinical practices

Additional central funding for IT wasannounced in late 2002 – £400 million for2003/04, £700 million in 2004/05 and£1.2 billion in 2005/06. This funding wasadditional to local investment, currentlyrunning at about £850 million a year frombaseline allocations. In order to protectthe central funding, stronger controls willbe introduced for its allocation.

The Director General (Richard Granger)arrived in October 2002 and establishedthe National Programme for IT (NPfIT).This is focused, in its first phase, on thefour key deliverables: appointmentbooking, an integrated care recordsservice, prescribing and an underpinningIT infrastructure with sufficientconnectivity and broadband capacity tosupport the critical national applicationsand local systems that will be richer andricher in subsequent phases.

The outcomes from this investment in thefour key elements of NPfIT will be asfollows. A summary patient record toassist out of hours and emergency care;improved patient-centred care through


An indication of the seriousnessand determination behinddelivering this national agenda forNHS IT was the decision toappoint a Director General of IT

86

high-quality integrated clinical systems forhealthcare professionals. This will beavailable at the point of care and supplypatient summaries, prescribing summaries,test and specialist referrals and results,digital images and assessment and careplanning when and where required. Othersystems will monitor admissions, lengthsof stay and discharges to transformhospital bed management. Next, there willbe improved choice and convenience forpatients through electronic appointmentbooking and the electronic transfer ofprescriptions. Electronic booking willreduce the waiting times for hospitalappointments, the number of Did NotAttends and provide reassurance that careis progressing. The electronic transfer ofprescriptions in the community willprovide better value for money, improvepatient safety and deliver the modernservice that patients and the public expect.

An infrastructure will be established withkey national applications to supportautomated, technology-assisted care thatwill in turn support more local services forinstant access, day surgery or intermediatecare. Additionally, there will be investmentin a modern high-capacity broadbandnetwork that will support all of the NHS’smessaging and electronic transferrequirements. And finally, the largestcorporate email and directory service inthe world will provide NHS staff with rapidelectronic communications and access toonline information and services. This willaccelerate the flow of information aroundthe NHS and thereby assist in theimprovement of patient care.

Richard Granger has transformed theprocurement process for NHS IT. Thecurrent National Programme is one of the

world’s largest IT procurementprogrammes and has a challengingtimetable for all parties to meet. Rapidprocurement enables the speedyproduction of benefits to patients andshould have the added advantage oflimiting the cost of bidding for suppliers.The required process involving anadvertisement in the Official Journal of theEuropean Community, the issuing of anOutput Based Specification, evaluation ofsuppliers’ responses and negotiatingcontractual arrangements is being used.

The National Programme will deliver anintegrated service to the NHS through theappointment of local and national serviceproviders. National applications includethe data spine for the Integrated CareRecords Service and the national electronicbooking service, and these will bedelivered by National Application ServiceProviders (NASPs). There will be a singleNational Infrastructure Service Provider(NISP), which will be responsible for theprovision of networking and supportingservices for the NHS that will underpin theNational Programme for IT.

For the local provision of IT systems andservices, England has been divided intofive geographic clusters, London, theSouth and the South East, the WestMidlands and North West, the EastMidlands and East of England and finallythe North East, Yorkshire and Humber. ALocal Service Provider (LSP) will haveresponsibility for delivering a full range ofIT services in each of the clusters. They willensure that national applications can bedelivered locally to meet both nationalstandards and local business needs.


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A Design Authority has been establishedto define the business and technicalarchitecture for IT applications andsystems and also the standards needed toensure that suppliers develop softwareand systems that are compatible andcapable of sharing information. It willdraw on NHS, UK e-government, European and International IM&Tstandards as appropriate.

The Design Authority offers an assuranceservice that includes testing the solutionsproposed by suppliers, to ensure thatproducts and services of one supplierfunction, interoperate and perform asexpected with those of other suppliers. As part of the assurance service a testingenvironment has been created that willallow suppliers to prove that their systemswork and meet the standards andspecifications published by the DesignAuthority. The testing environmentcomprises a three-stage process involvingproof of solution, system and servicereadiness and regression testing. After thesolutions have been tested individually,integrated proof of solution testingbegins, which ensures that the solutionsare compatible for use together in theNHS environment.

The Way Ahead

The scale of operation of the NHS as asingle organisation, or even as one of theLSP clusters, is considerably greater thanelsewhere, though the progress made indelivering high-quality integrated care, egin Kaiser Permanente in the USA (20), or inAndalucia in Spain (21), is being watchedwith interest. The delivery in the UK ofbroadband, digital TV and increasing useof mobile computing is likely to reinforcethe existing direction of travel. This use ofnew media is focused on delivering aninfrastructure that will allow citizens,patients and those caring for them tomake progressively better informeddecisions at all stages of any care pathway(whether it is formalised as one or not),anywhere and at any time. Building on thelessons learned from localimplementations from 1992 - 2001, themeans of delivery is now shifting towardsthe ‘industrial-strength’ solutions neededto deliver integrated care to the qualityneeded. But national installation of ITsolutions needs NHS staff who are ready,willing and able to use them if thebenefits are to be realised. Improving themanagement of information remains atleast as great a challenge as delivering thenecessary IT. And a way must be found ofaccelerating this agenda if the 21st-Century IT is to underpin themodernisation of the NHS as effectively as it could.


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References

1. Keen J. Information Policy in the NHS. Cp 1 in Information Management in Health Services ed. Justin Keen. OxfordUniversity Press. 1994.

2. A National Strategic Framework for Information Management in the Hospital and Community Health Services. DHSS. 1986.

3. Framework for Information Systems: The Next Steps. DHSS. 1990. London HMSO.

4. Getting Better with Information. DHSS 1992. Strategy; Facilitating Person-based Systems; and Handbook for IM&T Specialists (www.doh.gov.uk/ipu/strategy/archive/1992/index.htm)

5. The new NHS: Modern, Dependable. Department of Health. December 1997(www.doh.gov.uk/newnhs.htm )

6. Information for Health. An InformationStrategy for the Modern NHS. Department of Health. September 1998. (www.doh.gov.uk/ipu/strategy/index.htm )

7. National electronic Library for Health NeLH (www.nelh.nhs.uk )

8. NHS Direct (www.nhsdirect.nhs.uk )

9. Nhs.uk (www.nhs.uk )

10. e-Government: A Strategic Framework for public services in the Information

Age. Cabinet Office. London 2000 (www.e-envoy.gov.uk/ukonline/strategy.htm)

11. The most up to date, interoperability-related, listings are held on www.govtalk.gov.uk - current subsections include: Gateway,e-GIF, XML Schema, Metadata, GCL, and e-Services Framework.

12. The NHS Plan. Department of Health, 2000. (www.nhs.uk/nationalplan/)

13. Shifting the Balance of Power. Department of Health,2001(www.doh.gov.uk/shiftingthebalance/)

14. National Service Frameworks. Department of Health (www.doh.gov.uk/nsf/nsfhome.htm )

15. Building the Information Core: Implementing the NHS Plan. Department of Health, 2001 (www.doh.gov.uk/ipu/strategy/overview/index.htm)

16. Chief Executive Bulletin. 21 December 2001 - 3 January 2002Issue 98 (www.doh.gov.uk/cebulletin3january.htm)

17. Wanless D. Securing our Future Health:Taking a long-term View HM Treasury April 2002. (www.hm-treasury.gov.uk/Consultations_and_Legislation/wanless/consult_wanless_final.cfm)

18. Delivering 21st-Century IT (www.doh.gov.uk/ipu/whatnew/deliveringit/ nhsitimpplan.pdf )


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19. GP Clinical System Supplier Market Review November 2001. DH.

20. Getting more for their dollar: a comparison of the NHS with California’s Kaiser Permanente. RichardG A Feachem, Neelam K Sekhri, Karen L White, Jennifer Dixon, Donald M Berwick, and Alain C EnthovenBMJ 2002; 324: 135-143. (bmj.com/)

21. Building the Regional e-health Network – the Andalucian experience. F. Vallejo, Regional Minister of Health, Andalucia, Spain (europa.eu.int/informationsociety/eeurope/e-health/conference/2003/ programme/text_en.htm)


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Cooperative development of thehealthcare infostructure for EuropeBy Angelo Rossi Mori, Istituto Tecnologie Biomediche, CNR, President,Centre ‘PROREC Italia’ for the promotion of the Electronic Health Record

hen it comes to handlingand processing information,the healthcare industry isfacing a period of enormous

change. Community-wide networks ofever-increasing size and scope are focusingon the individual and the ultimate goal isa secure Electronic Health Record (EHR),which will be available anywhere and anytime to the record owner (the individual)and to any authorised health professional.

At the moment, healthcare data isprocessed by a whole phalanx ofsubsystems, under the responsibility of anequally large group of professionals. Thesituation isn’t helped by the fact that mostclinical processes are not yet adequatelysupported. Current applications are biasedtowards administrative processes. Thosesolutions that are in place tend to betargeted at support for healthcareorganisations and suppliers rather thanthe patient and, for the most part, their scope remains confined to individual facilities.

A recent survey (1) has shown that theadoption of modern clinical informationsystems can deliver significant benefits byproviding valuable additional support tocare-flow management. Patients andhealthcare professionals alike areunderstandably in favour of eliminatingred tape, while getting the informationthere ‘just in time’ streamlines care-flow

and helps to avoid duplicated tests andconsultations. What’s more, when you addto the mix access (where appropriate) tomedical knowledge databases, you’relooking at a real improvement in thequality of decision-making and aconsequent reduction in medical errors (2).

Large anonymous clinical data warehousesare going to make it easier to accessclinical data on a broader scale, enablingimproved monitoring of developments inpublic health, from flu epidemics to bio-terrorist attacks. It's vital that healthcaremanagement takes all this technicalinnovation on board and respondsappropriately – by evolving andrestructuring where needed – so that weget the most possible benefit, and new ICTopportunities can be prioritised for yetfurther advantage.

It’s possible that the health ICT marketmay evolve more organically and reliablythan other ICT sectors have done in thepast. This would allow industries to investwith greater security and to find theirniche in the new market with greater ease.The new generation of standards forhealth informatics (3, 4, 5, 6) and a newapproach to their deployment (7) is going to make the modularisationof applications and services in acomprehensive framework a lot easier,allowing Small and Medium Enterprises

W

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(SME) to profit from appropriate niche products.

This revolution involves the uniform andsimultaneous deployment of ICT across theentire healthcare arena, which means thatit needs political support and theinvolvement of regional and nationalauthorities. They need to encourageleading facilities to innovate further, whileat the same time ensuring that stragglersdon't fall behind – a task that requires theregulatory environment to be developedjust as organically as the technology itself.

The same need for careful phaseddevelopment applies to both technologicalinfrastructures and the ‘infostructure’.The latter includes those data formats andprotocols that are essential for effectiveinteroperability and the integration ofdifferent applications and services: forexample, standard formats for healthcaremessages and documents, datadictionaries/metadata repositories,structured care profiles/clinical pathways.

In this essay, I’m going to argue the casefor carrying on this strategic developmentat a European level, helping countries and regions work through this criticalperiod together.

Technical and political awareness

In Italy, awareness of technical issuesamong healthcare professionals increaseddramatically during 2002/03. We creatednational branches for various internationalorganisations: Integrating the HealthcareEnterprise (IHE) (7, 8), Health Level Seven(HL7) (5, 9), the PROREC network ofcentres for the promotion of the ElectronicHealth Record (EHR) (10, 11).

In addition, the Chief Information Officers(CIO) of hospitals and local trusts formeda new professional association and anannual award (for modernisation in thehealth sector, in the context of ‘FORUMPA’, a major public administration event)involved pinpointing best practice amongmore than 140 case studies (12). Inaddition, the National Research Council,together with the Federation of Hospitaland Local Trust (FIASO), is establishing ane-community to bring together, digest anddisseminate know-how on health ICT. Anational project (OSIRIS) on this topic isalso being co-financed by the Ministry ofHealth and will involve several regionalauthorities (13).

This bottom-up movement, however, isnot new. As other countries have alreadyexperienced, a low level of technicalawareness is obviously not up to thechallenge of re-engineering an entire

‘The roles of the stakeholders are changing. We need a

common vision and a comprehensive model for change

management. It is crucial to establish and support

dedicated task forces that can interact efficiently at

regional, national and international level.’

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system – but it still serves as the triggerfor political awareness. The latter isessential to get the political interventionrequired if all the possible stakeholders aregoing to start working together. Thesestakeholders include national and regionalauthorities, standard-developingorganisations, hospitals and health trusts,health maintenance organisations, healthinsurers and third party payers, softwaredevelopers, service providers, telecom,security and hardware, not to mentionhealth professionals, health informaticsprofessionals and – of course – the citizensthemselves.

This political awareness gradually bearsfruit in the form of strategic frameworks,appropriate legislation and the creation ofpermanent cooperative agencies atregional and national levels (eg: 14, 15,16, 17, 18, and 19). This is big business:the budget of these organisations in largefederal countries reaches tens of millionsof euros per year. They operate accordingto an explicit roadmap to promote clinicalinformation systems and the integration ofclinical and administrative applications.They manage task forces that publishstrategic and technical material; theyorganise meetings and portals to buildconsensus and disseminate know-how;and they publish surveys and monitor theimplementation of strategies in regionsand pilot sites.

The acceleration programmes

Recently, some countries have gone evenfurther, introducing ‘accelerationprogrammes’ (eg 20, 21, and 22).Successfully coordinating disparateprojects shows just how much advantageaccrues from more efficient nationwide

infrastructures and from close synergybetween different jurisdictions. All thishelps bring about a balanced andaccelerated process of changemanagement. The final goal is thedeployment of nationwide coherentsolutions for clinical information systemsand electronic health records. Threeexamples are summarised in table 1.

The National Health Service (NHS) inEngland is running many structuralinitiatives, inspired by the White Book of1998 (23). It launched a very ambitiousprogramme to provide an ‘EHR for all’; atthe end of 2003 it signed six contracts fora total of 3.4 billion euros over three years(an average of about 1% per year of theirhealth budget, in addition to the currentexpenditure of 2%) (24).

In Canada, after the production of aroadmap for infostructure construction in1999, a five-year acceleration programmewas launched in November 2001, with anadditional budget of 0.8 billion euros(0.2% of their health budget) (25).

Another example is that of KaiserPermanente – the largest non-profit healthmaintenance organisation in the USA,with 8.4 million members nationwide –which signed a 1.6 billion euro contract inearly 2003 for a highly pervasive EHRprogram (26).

Typical expenditure on health ICT rangestoday between 1% and 3% of a country’shealth budget. Budgets for mid-termacceleration programmes in advancedjurisdictions are running to billions ofeuros, nearly doubling their existing ICT budgets (which were already very generous).

Cooperative development of the healthcare infostructure for Europe

93

All this has to be accompanied by an ICTeducational and training programme forthe health sector and clear initiatives forknowledge-transfer from other areas. It’simportant that lessons learned and bestpractice be properly disseminated,alongside the R&D achievements ofnational projects and European Union (EU)programmes (eg GALEN (27), PICNIC (28);C-CARE (29), WIDENET-PROREC (30)).

The evolution of ICT andhealthcare

The epochal change I’m talking about hereis not the first large transformation of oursector, but it is going to be the first thatsimultaneously puts all stakeholders onthe same playing field, aiming at the same goal, on an international andregional basis.

I'd like to suggest that when healthcareservices and ICT solutions evolve, they doso in a distinct pattern, which you canalmost think of in traditional evolutionaryterms: you can split it into three main‘eras’ and each era dictates the ways inwhich standards develop, R&D is focused,and innovation spreads (see table 2).

The first one I like to call the ‘prototassicera’ – the era of the preliminary (proto-)organisation (-taxon) of ICT solutions. Inthis era, information systems are mostly

provider-centred. You can further divide itinto three periods:

The ancient period of Health InformationTechnology, the ‘paleoHITic period’: in thisperiod, hospital wards and service centresautonomously and individually decide toimplement single applications.

In the intermediate period, the ‘mesoHITicperiod’, applications begin to talk to eachother, aided by the first generation ofinternational standards (HL7, CEN).Decision-making now involves several unitswithin a hospital, and the contract valuesare reaching several hundreds of euros.

In the new period, the ‘neoHITic period’,platforms and common services aredeveloped to integrate subsystems withinthe hospital or to coordinate data viewsfor continuity of care within pathologynetworks. By now, the deployment of ICT is being managed at the level of awhole hospital or a local community.Contract values have now reachedthousands of euros.

During the prototassic era, evolution isdriven by spontaneous local initiatives,with a myriad of decision-makersfollowing different priorities according towhere they are and what they’re doing.As a result, there are projects going on allover the country, all coexisting at differentevolutionary stages (or even in the ‘pre-HITic period’ of paper and pencil).

Several countries and regional authoritiesare now realising that this evolutionaryprocess needs to be brought undercontrol. This takes them into the ‘modernera’ of regional integration and strategicfederal initiatives, when local projects are


When healthcare services and ICT solutions evolve, they do so in a distinct pattern, which youcan almost think of in traditionalevolutionary terms

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Table 1 – Size of some ICT medium-term investments approved in 2003

Table 2 – The evolution of healthinformation systems


organisation ICT acceleration

programme

(billion euros / duration)

% ICT acceleration

wrt health budget per

year

NHS – England [24] 3.0 billion euros / 3 years 1-2%

Infoway – Canada [25] 0.4 billion euros / 2-3 years 0.2-0.4 %

Kaiser Permanente [26] 1.5 billion euros / 3-5 years 2-3 %

scope main features infrastructures and standards focus for innovation

1. prototassic age: unrelated local construction of ICT solutions, provider-centered

1a. paleohitic period, isolated applications

point of

service,

administrative

unit

- ad hoc interfaces

- one vendor, one

application

none – bilateral communication

with ad hoc interfaces

individual products

1b. mesohitic period (1990-2000), communication between applications

diagnostic

services (LIS -

RIS) open to

the rest of

their

organisation

administrative

sector

- single vendor, multiple

applications

- bilateral communication,

also with devices (signals,

images)

- Electronic Patient Record

systems for GPs

- international cooperation

to develop standards

messaging standards with

profiles – mainly within an

organisation

DICOM, EDI, HL7 (vers 2.x , CDA

level 1) and CEN ENVs

lower levels of ISO-OSI

integration of products,

middleware to connect

legacy systems

95


scope main features infrastructures and standards focus for innovation

well-defined

sub-

communities

from

multiple

organisation,

deep

integration

among

applications

- workflow-based profiles for

multilateral communication

- coordinated processes across

organisations (continuity of

care)

- sub-regional pilot projects

- data warehouses based on

resources (goods,

prescriptions) –

- efficiency

- cooperation between HL7 and

CEN for a new generation of

RIM-based standards (eg: HL7

version 3)

- IHE approach and tested

interoperability

- aspecific infrastructures and

platforms, XML, SOAP, (e-

government)

integration of services,

aspecific integration,

security and signatures

across the networks

2. modern age (2001-2010): systemic integration for very large communities, patient-centred

political

decisions at

regional level

(millions of

citizens) –

activated as

consequence

of diffuse

technical

awareness

and

cooperative

agencies

- intrinsic multi-vendor

environment

- multilateral communication

and inter-organisational

integration

- sharing of clinical

information

- public infostructure

- nationwide Electronic Health

Record, from birth to death

- EUROREC Institute for EHR

promotion

- networks for continuity of

care

- DWH based on care profiles

– effectiveness

- regulations, observatories,

open source, open content,

pilot sites, education

- regional / national agencies

for consensus, promotion and

infrastructures

- national acceleration

programmes

- HC-specific platforms, web

services, UDDI, ebXML

- regional health networks with

integration services, master

files for citizens (MPI) and

professionals, registry for

HC events

- metadata registries

effective methods and

tools to support a

process of change

management;

investigation on the

whole framework to

protect and stimulate

investments by

producers and buyers;

investigation on new

organisational models

with ICT support

3. utopian era (2005-2015 ?): ‘perfect’ Information Society, a global impact, citizen-centred

EU market,

global

market;

decisions

within

national and

international

scenarios

- deep integration of

administrative,

organisational and clinical

information

- DHW for quality,

appropriateness

- integration of healthcare

and other sectors (e-

government)

- worldwide harmonisation of

infrastructures

- international cooperation on

the infostructure

global change

management;

optimal ICT support to

the new organisational

models;

effective international

cooperation

1c. neohitic period (1998-2005), ad hoc integration

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synchronised and accelerated. By thisstage, you start to need resources andinfrastructures at regional and nationallevels. Information systems have to startbecoming patient-centred. Contract valuesnow can reach the billions of euros andthe decision-makers have to shoulderenormous responsibilities. Failure wouldnot just be financially disastrous; it wouldimpact on the whole market.

Finally, we can expect to see a ‘utopianera’, with a global systemic vision of ICTacross all economic sectors, including inparticular social and health sectors and e-government initiatives. Informationsystems will be citizen-centred.

Resources devoted to health ICT arealways increasing (see Figure 1). In mostcountries, however, the current budget forhealth ICT is still low (1-3% of the wholebudget for healthcare) when you compareit to other mature sectors (where ICT mayaccount for up to 7-10% of the wholebudget). The focus to date has been onadministrative and organisational systems;clinical solutions are underdeveloped. Thefact is that current information systemsare not yet giving much support to themost important area of all in our industry:the care-flow for individual patients.

Figure 1

A graphical representation of Table 2 is

provided in Figure 2, showing thepercentage of the whole healthcarebudget that would be roughly appropriatefor ICT in each era or period.

A chance for Europeancooperation

There’s no doubt that every country isnow facing an enormous challenge. Theroles of the stakeholders are changing.We need a common vision and acomprehensive model for changemanagement. It is crucial to establish andsupport dedicated task forces that caninteract efficiently at regional, nationaland international level.

I strongly suggest that enormous benefitcould be derived from Europeancooperation, comparing and uniting ourrespective endeavours, systemarchitectures and data, as well as actuallyproducing the components of nationalinfostructures.

What’s more, regional and nationalauthorities could develop standards bywhich their change management effortscould be properly benchmarked. Finally, within each country, the basic


0,0

10,0

20,0

30,0

40,0

50,0

2000 2005 2010

billion euro

ICT/health budget

1 % -

2 % -

3 % -

4 % -

5 % -

0 % -1990 2000 2010

6 % -global impactregional

integrationad hoc integrationcommunication

between applicationsisolated

applicationstime

Figure 2

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technological issues need to be dealt withat the statutory level. Local decisions canbe supported by national andinternational cooperation, by exchange ofknow-how, by analysis of best practice(and failure) and the testing andcomparison of advanced solutions.

Although individual citizens and healthprofessionals moving across Europe maywell perceive direct benefits from morecoherent clinical information systems inthe different European countries, the realimpact will come from large scalecooperative ventures. I envisage Europe-wide data collection providing invaluablesupport for evidence based medicine, thesystematisation of clinical and practicalknow-how and the development of newmanagement structures based on theadvanced deployment of ICT. Moreover,common projects could sharemethodologies and spread the costsincurred in the development and provingof new standards, as well as creating localprofiles and certifying conformance.

A shared European vision andinfrastructure are essential for the creationof an effective European market, creatingnew and better opportunities for industry.At one end of the scale, the scope ofstrategic decisions and the size of thecontracts are increasing; at the other end,increased standardisation supports thedevelopment of more modularapplications and web-based services – and consequently for niche products and services.

Potential topics for Europeancooperation

It’s evident that pursuing this new visionover the next few years is going to be acolossal challenge; a challenge we mustface with as much cooperation as possible between the various statutorybodies involved. Ms Lizotte MacPherson,president and chief executive officer of the Canadian Infoway (31), hits the nail onthe head: ‘We are playing catch-up.Whereas in the USA, health-care spendingon information technology (IT) is about5.5% of operating budgets, in Canada weinvest only 1.8% of healthcare operatingbudgets for IT. The gap is even widerwhen we compare the healthcare industrywith other information-intensive sectors,such as banking and government, whereIT spending ranges from 9-13% ofoperating budgets.’

‘Infoway's value-added is our collaborativeapproach. By working in partnership withhealthcare providers and by developinginteroperable solutions – usable andreusable by all health jurisdictions inCanada – Infoway ensures that each dollarinvested provides maximum return andimpact. Our analysis shows that ifjurisdictions were to implement EHR inisolation, the estimated one-time costsclimb to $3.8 billion. However, withInfoway’s collaborative approach, the costis estimated at $2.2 billion – a potentialsaving of $1.6 billion.’

How are we going to drag a wholecountry out of the prototassic era, with allits diverse local initiatives, into the modernage? How are managements going tochange healthcare provision, under theinfluence of new ICT opportunities?


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Collaborative projects that could be established on a European basis

Develop and support local and regional strategies

• develop common methodologies and criteria to produce and assess regional strategies for ICT, to build an infostructure, to gradually introduce electronic transactions and new ICT technologies with high organisational impact

• develop criteria to set up a regional network with a virtual record system (includingmanagement of structured documents, extracts of clinical data, pointers, patient indexes, security issues, etc)

• assist hospitals and local trusts in developing their strategies, by discussing and learning from others

• gradually introduce electronic transactions for all clinical documents• gradually implement basic infrastructures (eg health telematics networks, basic

training, certification processes)• team up to produce knowledge repositories (eg for web learning, evidence-based

clinical guidelines, care profiles)• implement data warehouses for governance and clinical support and methodology

for the development of indicators

Induce cultural and organisational change

• explore new organisational models for continuity of care and ‘virtual healthcare facilities’

• describe requirements and specifications for distributed health records • train healthcare professionals about information processing and telematics (web

learning, universities)• train health information specialists, ie with specialised skills for health domain• assist healthcare ICT managers and healthcare professionals to organise the client

side, to cooperate with Health Authorities, to produce standards and repositories about expected ‘content’

• empower citizens’ organisations to cooperate with Health Authorities, to control the role of ICT on the quality of healthcare provision, to integrate social and clinicalaspects to improve quality of life

Encourage more involvement on Health ICT standards

• develop and promote standards (on virtual health records, distribution of clinical guidelines, structured messages, semantic integration)

• design and maintain a reference information model, to coordinate data elements inmessages, clinical databases and information collection for governance data warehouses

• design metadata repositories for collection, systematisation and comparison of (local) data dictionaries, based on a suitable ontological background. The repositoryshould include terminologies and enumerated lists

• develop and maintain a new generation of terminologies and coding systems,


99

suitable for semantic interoperability among applications, and distribute them in a suitable electronic format

• consolidate the know-how from publicly funded EU projects as publicly available provisions

• prepare the market for deployment of products from EU projects• stimulate feedback on existing standards

Involve professional societies

• assist clinicians in defining and recommending data sets for EHR and support their dissemination and compatibility across different contexts

• promote virtual Electronic Health Records and support sharing of structured documents

• promote problem-oriented networks (eg cancer, dialysis, Alzheimer’s, diabetes, transplants, cardiology, etc)

• facilitate production and analysis of clinical databases• produce and distribute systematised clinical guidelines, integrated in EHR solutions

Support a forum of regional experts in Health ICT

• set up a permanent, virtual body to facilitate cooperation among regional experts in health ICT

• produce comparative material and implementation guidelines eg on strategies, valid solutions

• provide ongoing support to (local) (public) political decision-makers• expand eEurope targets into detailed national and regional plans on health ICT• promote culture and implementation of standards

Acknowledge that innovation faces real problems

• assure that solutions are implementable• implement and control local pilot projects• translate real-life experience into strategy

Certify quality of web resources

• survey and promote web resources for patients and professionals, on advice to patients, selected addresses, clinical guidelines, evidence-based reviews, consensus recommendations

• define quality criteria for web sites (eg: HON) and develop metadata to describe web resources

• manage self-certification as well as independent ratings, regulate external certification of authoring processes and assign trust marks


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And what information infrastructure andlogistical support should be provided byregional and national authorities?

This is a significant challenge and requiresbillions of euros per year. Europeancountries can only benefit from mutualsupport, sharing cost-benefit analysis andstrategy, learning from best practice, anddeveloping and maintaining theirrespective domains within a Europeaninfostructure. European cooperation isalso needed to develop advancedinteroperability services and ‘systemic’regional applications (such as themanagement of regional master indexesof citizens and professionals, for secureaccess to health networks and theintegration of patient data from differentlocal systems). And then we need serversfor clinical data (offering the extraction,storage, retrieval, transmission andpresentation of clinical summaries), datacollection and analysis for datawarehouses (for governance and clinicalsupport), not to mention tool kits to buildand maintain metadata registries. Opensource software could be critical tosupport regional networks (see forexample the PICNIC project (28) or theOpenEHR initiative (32)).

It is also imperative that we involve fieldworkers and canvass their opinions andsolutions. Their input will help answercritical questions, such as: ‘What are thenew job profiles for health ICT?’; ‘How dowe educate thousands of decision makersin health ICT?’; ‘How do we increaseawareness in health professionals andcitizens?’ and, last but not least, "How dowe train millions of health professionals in ICT?"

The creation of a European healthcareinfostructure involves coordinatingnational initiatives throughout Europe andcalling on professional associations andlocal resources for further assistance. Anenormous amount of R&D effort is alsorequired (33). It needs careful control andappropriate methodologies and tools,ranging from regulations (national andregional laws, directives, and guidelines),regional, national and internationalobservatories, open source and opencontent initiatives, pilot implementations,showrooms, and education about healthinformation systems (34).

A cooperative EU effort would bringtogether policy-makers and stakeholdersto produce a feasible strategy to developthe infostructure within each country,according to change managementprocesses running in that country. Wehave to understand which parts of theinfostructure could be common across the EU and which need to be customised –always in accordance with clear guidelinesand standards – to incorporatemethodologies developed independentlywithin each country.

A summary of the integration activitiesthat could be performed is describedbelow in Box A. I would suggest that the most crucial issues in the near future are knowledge transfer and thedevelopment of support structures and systemic services.

Scale of ambition and critical mass

It’s useful to have a rough idea of the sizeof potential European initiatives, based onthe experience of countries withacceleration programmes and


101

corresponding infostructure programmes.The most I can do here is show howimportant it is for a proper study to be made in order to establish precisefigures and clearly identify anyopportunities arising.

The EU health budget is rising up to onetrillion euros per year. The ongoing totalexpenditure in health ICT (in theprototassic era) is of the order of severalbillion euros per year If every memberstate started its own accelerationprogramme to enter the modern era ofhealth ICT, according to the parameterspresented in Table 1, this total expenditurecould double in a few years.

While the actual deployment of hardwareand networks are intrinsically a localmatter, the architectures, standards andcontent would benefit from jointinitiatives and shared experience. Whatbenefits could arise from EU cooperation?How much could be devoted to commonprogrammes?

First, a set of national (federal) andregional agencies should provide logisticand organisational support to expertworking groups tasked with developingthe infostructure. They could coordinatethe distribution and promotion of theworking group conclusions. In largecountries, this kind of agency seems torequire several million euros per year, so todo this on a fragmented national basisacross Europe would cost upwards of one

hundred million euros a year. Most of thismoney would go on reinventing the wheelin each country.

On the other hand, a joint Europeaninitiative for the set-up and coordinationof regional and national supportingagencies – of limited size, eg between 10and 20 million euros per year – couldreduce the total cost, speed the process,and increase the quality. This initiativecould build on the work already done bythe EHTEL (35) and WIDENET (30) EUprojects, in particular the EHTEL-likeorganisations, the PROREC NationalCentres (36) and the EUROREC Institute(37) for the promotion of the ElectronicHealth Record. In the context of the OSIRISproject (13), the CNR has already startedcollecting documents on national andregional strategies (38) and has madeavailable a web-based registry for clinicaldata dictionaries and data sets (39).

Conclusions

Information and CommunicationTechnology (ICT) is ready to support theintegrated management of clinical,organisational and economic data, with adramatic improvement in the quality andappropriateness of care provision, as wellas in the effectiveness of clinicalgovernance and management. All this willeventually be based on accurate andtimely data generated by the actual careprocesses themselves. Benefits frommonitoring and management willpropagate upwards to regional andnational authorities.

Pooling energy, commitment andresources – as well as operating within aclearly understood framework (with


What benefits could arise from EUcooperation? How much could bedevoted to common programmes?

102

national and regional variance managedby well-established criteria and/or thepreparation of standards) – will facilitatethe development of new commercialservices (indexes, registries, datawarehouses, servers) and the distributionof innovative commercial applications.Indirectly, this infostructure will providesignificant benefits to industry as well,acting as a firm foundation for Europeanmarket growth.

National and regional authorities – eachwithin their own sphere of influence – cansupport the coordination of localsubsystems and their integration bypromoting the implementation of atechnological infrastructure, of aninformative infrastructure (infostructure),and of basic common services. There is anopportunity for cooperation at a European level.

Different stakeholders need to define theirvarious roles in the development of aEuropean infostructure. Europeanconsortia, operating under new andappropriate constitutions, can support theefficient (and ethical) development ofcomprehensive health information systemsby developing specific components of theinfostructure. Moreover, infrastructuraldevelopment, services and regulation willtogether set the agenda for standard-defining bodies, providing preciserequirements, know-how and skills toreach robust concrete solutions.

We need to create a common vision and arobust context for healthcareorganisations on one side and for theindustry on the other, all over Europe.

Summary

In this paper we outlined the need – andthe opportunity – for a major cooperativeeffort among European countries aimed atthe development of an ‘infostructure’ forhealthcare.

The lack of common models andstandards for healthcare ‘content’ willbecome apparent as soon as eachindividual country has solved the majortechnological obstacles (eg broadbandnetworks, security, XML / SOAP tools).

Coordinated support for care provision,care-flow and facilities management canonly be achieved if we are able to store,exchange and integrate structuredadministrative, organisational and clinicalinformation.

Health professionals must work togetheracross the board to instigate the changemanagement required for introducing ICTinto the health sector.

When it comes to the reorganisation ofhealth services to maximise theopportunities provided by moderninformation systems, it’s no longer aquestion of local decision-making: itrequires political decisions to be taken atregional level, with the widespreadsupport of the whole health systeminvolved.

Research and development should notmerely be focused on individual productsand services, but must also face up toorganisational issues, tools for thedevelopment of standards, technologytransfer and the process of changemanagement itself.


103

Without international cooperation, thishuge challenge cannot be successfullyconfronted. Most countries are alreadycoping with at least some of the issuesinvolved, but no one country can sourceall the skills and know-how required fromwithin its own borders.

Other topics to be considered include:

• Tools to populate, organise and access a large metadata registry, including terminologies, coding systems and purposive data sets

• Tools for the cooperative development of a large collection of clinical protocols, guidelines, care profiles – as well as their effective inclusion in actualapplications

• Developing and promoting standards for architectures and transactions (messages and documents)

• Planning the allocation of web services for administrative information, clinical knowledge, organisational processes toappropriate organisations, to feed national, regional and local health portals for citizens and professionals

• Working out new organisationalmodels – supported by advanced ICT solutions – for regional pathology networks and integration of primary, secondary and tertiary care (‘virtual hospital’), including support centres for telemedicine

• The development of standard-based integration platforms, to integrate legacy systems and to mediate among independent applications

• The design of measures with various levels of complexity and performance to share safely and effectively personal clinical information from birth to death(Electronic Health Record)

• The criteria to adapt best practices to local requirements, to design effective strategies and to handle change management initiatives, including resources (eg: electronic libraries with technical documentation, virtual communities) to support the community of health ICT professionals (working in the healthcare facilities, in the regional and national authorities, inthe industries)

We need a cooperative initiative atEuropean level, funded to a level ofbetween ten and 120 million euros a year,complementary to the deployment of the technological infrastructure withineach jurisdiction, and specific forhealthcare, ie: an AD-HOC (AdvancedDevelopment of Healthcare Open Content) Programme.

Acknowledgements: The ideas presentedin this contribution were developedthrough discussions and meetings withmany colleagues. Of particular relevancewere the activities linked to the followingprojects and organisations: CEN, Ehtel,HL7, Mobidis, Osiris, Prorec, and Widenet.The collection and the analysis of thedocuments on e-health strategies areperformed in the context of the OSIRISProject, co-financed by the Italian Ministryof Health.

References:

1. Brian Raymond and Cynthia Dold, Kaiser Permanente Institute for Health Policy, ‘Clinical Information Systems: Achieving the Vision’, 2002. Available at www.kaiserpermanente.org/medicine/ihp/pdfs/raymond_feb_2002.pdf


104

2. ‘Johnson Introduces the National Health Information Infrastructure Act of 2003’, press release, 2003. Available at the US Congress web site, see www.house.gov/nancyjohnson/pr_nhii.htm

3. International Standard Organization, Technical Committee on Health Informatics ISO/TC215, see www.secure.cihi.ca/en/infostand_ihisd_isowg1_e.html

4. European Standard Committee, Technical Committee on Health Informatics CEN/TC251, see www.centc251.org

5. Health Level Seven, ANSI-HL7, see www.hl7.org

6. NEMA (National Electrical Manufacturers Association) and ACR (American College of Radiology), ‘Digital Imaging and Communications in Medicine’ (DICOM). Available at www.medical.nema.org

7. Integrating the Healthcare Enterprise (IHE), see www.rsna.org/IHE (International Committee) or www.ihe-europe.org (European Committee)

8. Italian Committee of Integrating the Healthcare Enterprise (IHE Italy), see www.rad.unipd.it/ihe/

9. HL7 Italia, the National Affiliate of Health Level Seven, see www.hl7italia.it

10. PROREC Centres for the promotion of Electronic Health Record, see

www.sadiel.es/europa/prorec/ or www.sadiel.es/europa/prorec/Contenido_prorec_network.htm

11. Centre PROREC Italia for the promotion of Electronic Health Record,see www.prorec.it/prorec-en.htm

12. Forum Pubblica Amministrazione (ForumPA). Prize 2003 for the innovation on health services – collection of 140 best practices. See www.forumpa.it/forumpa2003/sanita/home.php

13. OSIRIS Project, to build an e- community on health ICT in Italy. See www.e-osiris.it

14. Canadian Advisory Committee on Health Infostructure (ACHI), ‘Tactical plan for a pan-Canadian Health Infostructure’. 2001 Update. Available at www.hc-sc.gc.ca/ohih-bsi/pubs/2001_plan/plan_e.html

15. Canadian Institute for Health Informatics (CIHI), ‘Roadmap Initiative: launching the process, year 3 in review’, 2002. Available at www.secure.cihi.ca/cihiweb/en/downloads/profile_roadmap_e_year3_review.pdf

16. Marius Fieschi, ‘Les données du patientpartagées: la culture du partage et de la qualité des informations pour améliorer la qualité des soins’, 2003. Rapport au ministre de la santé de la famille et des personnes handicapées.

17. UK NHS Information Authority, ‘Strategic Plan for 2002-2005’, 2002. Available at


105

www.nhsia.nhs.uk/pdocs/board/ Strategic_Plan_Summary_Final_Version.pdf

18. Australian National Health InformationManagement Advisory Council ‘Health on Line – a Health Information Action Plan for Australia’, Second edition, 2001. Available at www.health.gov.au/healthonline/docs/actplan2.pdf

19. ‘La Junta ha invertido ya 160 millones de euros para aplicar las nuevas tecnologías a la sanidad’, press release, 2003. Available at www.andaluciajunta.es/SP/AJ/CDA/ModulosComunes/MaquetasDePaginas/AJ-vMaqCanalNot-00/0,17657,214288_214389_39558,00.html

20. Canada Health Infoway Inc, ‘Presentation of Business Plan’, 2002. Available at www.canadahealthinfoway.ca/pdf/CHI-Presentation-BussPlan.pdf

21. US National Committee on Vital HealthStatistics, ‘Information for Health’, National Health Information Infrastructure (NHII), 2001. Available atwww.ncvhs.hhs.gov/nhiilayo.pdf

22. National Programme for IT in the NHS (NpfIT), see www.doh.gov.uk/ipu/programme/index.htm

23. NHS Information Authority, ‘Information for Health – An information strategy for the modern NHS’, 1998. Available at www.nhsia.nhs.uk/def/pages/info4health/contents.asp

24. ‘National Programme For IT AnnouncesSuppliers Short-List", press release 2003. Available at www.doh.gov.uk/ipu/programme/ICRS_short-list_release_approved_final_12-08-03.pdf

25. ‘Health Infostructure in Canada – Government Financial Investment’,see www.hc-sc.gc.ca/ohih-bsi/chics/finance_e.html

26. Rhonda l. Rundle, The Wall Street Journal. ‘HMO Kaiser Plans to Put Its Medical Records Online’, 2003. Available at www.stdsys.com/kaiser_permanente.htm

27. ‘Generalized Architecture for Healthcare Nomenclatures’ (GALEN), a European healthcare research project, see www.opengalen.org/technology/technology.html

28. ‘Professionals and Citizens Network forIntegrated Care’ (PICNIC), a European healthcare research project, see www.medcom.dk/picnic/

29. ‘Continuous Care’ (C-CARE), a European healthcare research project, see www.telepolis.be/c-care/

30. ‘PROmotion strategy for European electronic health RECords’ (PROREC, then WIDENET), a European healthcareresearch project, see www.sadiel.es/Europa/widenet/acceso.htm and www.pi.ijs.si/ProjectIntelligence.Exe?Cm=Project&Project=WIDENET


106

31. ‘Senate Committee Endorses Infoway Strategy’, press release 2002. Available at www.infowayinforoute.ca/news-events/index.php?loc=20021028&lang=en

32. openEHR Foundation, a non-profit organisation on clinically comprehensive, ethico-legally sound and interoperable electronic health records, see www.openehr.org/

33. US President’s Information Technology Advisory Committee, ‘Transforming Health Care Through Information Technology’, 2001. Available at: www.hpcc.gov/pubs/pitac/pitac-hc-9feb01.pdf

34. Angelo Rossi Mori, Fabrizio Consorti, ‘A reference framework for the development of e-health – Bringing the Information Systems into the Health Systems, Bringing the Health System into the Information Society’, 2002. Available at www.e-osiris.it/data/docs/it252reference-framework-16.doc

35. European Health Telematics Association (EHTEL) for the promotion of ICT solutions in healthcare across Europe. See www.ehtel.org

36. For a list of PROREC centres, see, for example, www.prorec.ro/

37. EUROREC, European Institute for the Promotion of the Electronic Health Record, see www.eurorec.net/main.htm

38. Italian National Research Council, Institute of Biomedical Technology. ‘A collection of documents on National and Regional strategies on e-health from several countries’, interim release, May 2003.Available at www.e-osiris.it/e-library/databaseOnStrategies.htm

39. Angelo Rossi Mori, Fabrizio Consorti, ‘The prototype for an inventory of clinical data sets’, 2003. The description of the activity and the inventory are available at www.prorec.it/registry.htm

Acronyms:

EHR Electronic Health Record

EU European Union

GMSIH Groupement pour la Modernisation du Système d'Information Hospitalier, http://www.gmsih.fr/

HL7 Health Level Seven, an ANSI-Accredited Standard Developing Organization (5, 9)

IHE Integrating the Healthcare Enterprise (7, 8)

ITC Information and CommunicationTechnologies

NHII National Health Information Infrastructure (2)

NHS National Health Service


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Author biographies

Dr. Kazem Behbehani Assistant Director-General – External

Relations and Governing Bodies ,

World Health Organisation

Kazem Behbehani, of

Kuwait, joined the WHO in

January 1991. Prior to

joining the organisation, he

was a Professor of

Immunology at Kuwait Medical Faculty,

the Dean of the Faculty of Medicine,

Vice President of Kuwait University and

a visiting professor/scholar at Harvard

medical school. At the WHO, he has

worked in the AIDS programme, was a

programme manager in Tropical Disease

Research, and director of both the

Division of the Control of Tropical

Diseases and of the Eastern

Mediterranean Liaison Office.

He has more than 100 scientific

publications and one book on science

and technology to his credit.

Walter BergamschiDirector, Ministry of Health Information

Systems, Italy

Walter Bergamschi

graduated in Physics at the

State University of Milan in

1991. Formerly an Editor

introducing desktop

publishing systems at Utet-Periodici

Scientifici and after at Edifarm, he was

IT Project Manager at Istituti Clinici di

Perfezionamento. At Ospedale Maggiore

in Milan he was the Information Service

Responsible Analyst.

He has participated as Project Manager

on many different, such as the North

Italy Transplant Information System,

Multimedia Network of Ospedale

Maggiore di Milano, New Ministry of

Health Information System, and the

introduction of telemedicine in SSN (the

last two projects are still in progress). He

is the Health Ministry representative for

the New Information System monitoring

the Government Programme.

He received the Journalist Saint-Vincent

Award in 1983. He is co-author of one

book and ten publications on health

information systems, organisational

process re-engineering and he attends

many national and international

congresses as a speaker.

Dr. Martin BerlinChief Strategy Officer Dubai

Development and Investment Authority

Dr. Berlin is employed by the

Dubai Development and

Investment Authority as

Chief Strategy Officer. His

responsibilities include the

development and implementation of a

corporate strategy for the Dubai

Development and Investment Authority,

creative idea and project generation for

the Dubai economy, and the strategy

oversight for projects such as Dubai

Healthcare City, Dubai Land, and Sheikh

Mohammed bin Rashid Establishment.

109

Before assuming this responsibility

Dr. Berlin was working exclusively on

Dubai Healthcare City as Chief Business

Development and Marketing Officer.

Within this position, he did the strategic

business development and was

instrumental in negotiating and closing

key partnerships for Dubai Healthcare

City like the Joint Venture with Harvard

Medical International/School, Mayo

Clinic Rochester, and Amcare/Johns

Hopkins Laboratories. He is still involved

in the final negotiation stages with

several other key partnerships, eg to

build a premium teaching/university

medical hospital or to partner with

different healthcare institutions to

deliver high quality medical care and

healthcare services in Dubai. He was

also responsible for the launch of Dubai

Healthcare City in November 2002

and the development of the first

marketing strategy.

Dr. Berlin joined the portfolio of

companies of His Highness General

Sheikh Mohammed bin Rashid Al

Maktoum, Crown Prince, Ruler of Dubai

and Minister of Defence at The Executive

Office in September 2001. Dr. Berlin

started as Head of Strategy with The

Executive Office and has driven among

other strategic projects the concept

development, business plan, and

strategy and implementation policies for

Dubai Healthcare City in a leadership

role. The intention for Dubai Healthcare

City is establish Dubai in the long term

as the regional hub for health, medical

and wellness services.

From 1996 to 2001 Dr. Berlin was a

Consultant with McKinsey and

Company, Munich, Germany, working on

strategic and operational projects in the

pharmaceutical, chemical and

telecommunication industries.

Dr. Berlin holds a doctorate from the

University of Heidelberg in Molecular

Biology and a degree in Economics from

the Universities of Hagen and

Heidelberg, Germany.

Kevin Dean Director of European Public Sector

Healthcare Team, Cisco Internet Business

Solutions Group

Kevin Dean is a senior

Director of Cisco’s Internet

Business Solutions Group,

IBSG, transferring

experience in operating

businesses using web-technology, and

supporting organisations’ progress to

evolve their culture, operations, IT and

management skills to take advantage of

becoming a networked virtual

organisation. Kevin and his team are

now working with many national and

regional Government public healthcare

funders and providers in Europe, and

around the world.

Kevin’s background is originally in

production in the automotive industry,

where his experience included

introducing new manufacturing

technologies and networked

Author biographies

110

Author biographies

automation. From there he moved into

consulting, working primarily in the oil,

chemicals and pharmaceutical sectors,

concentrating on Supply Chain

Management and purchasing, but

including such activities as large-scale,

global Enterprise Management System

implementation; Assessment of

investment priorities for EU funding;

Guidance and assessment of investment

success for Government Programmes

including for Advanced Robotics.

Dr Peter DruryHead of Information Policy,

Department of Health, England

Dr Peter Drury was

educated at Liverpool

College and Cambridge

University before joining the

NHS Administrative Training

Scheme. While working at St. Thomas’

Hospital he gained an MSc in Social

Research and then worked as District

Information Manager at Ealing Health

Authority. After completing a PhD in

Sociology concerning health information

systems, he began to provide specialist

consultancy support on strategic

information issues. He provided support

to the NHS Executive for the 1992

Information Strategy, and worked with

Frank Burns to help produce

‘Information for Health’. Since January

1999 he has been Head of the

Information Policy Unit at the

Department of Health.

Dr. Håkan ErikssonCoordinator of a national R&D-program

related to Information Technology in

Healthcare, Karolinska Hospital,

Stockholm, Sweden

Hakan Eriksson, MD, PhD,

was born 1945, became

doctor of medicine at the

Karolinska institute in 1971

and professor of

reproductive endocrinology at the

Karolinska institute in 1987. He was the

scientific secretary of the Swedish

Medical Research Council during 1978 -

1995 and the secretary of the Swedish

Government Scientific Advisory Board

during 1991 - 1994. He was the

chairman of the department of Medical

Chemistry during 1983 - 1987 and the

department of Woman and Child Health

at KI during 1993 - 2000. He is presently

coordinator of a national R&D

programme related to Information

technology in healthcare. He has

published approximately 130 scientific

articles and reviews involving primarily

studies on steroid hormone metabolism

and action, hormone receptors, calcium

regulation and development of

biomedical methods. He has written

articles and given talks regarding

medical research and its impact on

future healthcare systems. One of his

big interests is the process of transfer of

results of experimental research into

clinical usefulness and how IT can be

used in this process.

111

Bob Gann Director of NHS Direct Online, England

Bob Gann is Director of NHS

Direct Online, the National

Health Service website for

patients and the public.

After a degree in English

Bob trained as a librarian and managed

healthcare library services. He has also

worked as a medical writer and editor,

and as chief executive of a charitable

trust. Bob has served on a number of

national committees and advisory

groups and was one of the 25

healthcare leaders to sign the NHS Plan.

He has published and lectured

extensively on health information topics

and has a visiting professorship at

Plymouth University plus visiting

academic appointments at the

Universities of Southampton and

Brighton in the UK. Bob is a Fellow of

the Library Association and in 2002 was

awarded the Barnard Prize for

distinguished services to medical

librarianship.

Pierfrancesco GhediniICT and Information Manager at

Modena Healthcare Authority, Italy

Pierfranesco Ghedini

graduated in electronic

engineering at the

University of Bologna with a

dissertation about

‘Advanced Data Base Systems and

Knowledge Representation’, the

dissertation was a contribution to the

European project “LOGIDATA+”

(ESPRIT). In 1999, he was involved in the

‘Millenium Bug Task Force’ of the Italian

Ministry of Health and contributed to

the National Guide Lines on business

continuity of the healthcare services.

He is co-founder and president of the

Italian affiliation of HL7 – Health Level 7.

He is co-founder and a member of the

Board of Directors of AISIS – the Italian

Association of the ICT Managers who

work in Healthcare Trusts. He also

coordinates the working group on

‘Security and Confidentiality’ of AISIS.

He was ICT Manager of the Local

Healthcare Authority of Bologna City

and, since 1997, he has been holding

the ICT and Information System

Manager role at the local Healthcare

Authority of Modena. He takes part, as a

consultant, at several regional and

European projects about medical

informatics and Business Process

Reengineering of production processes

in Healthcare Local Authorities.

Author biographies

112

Author biographies

Dr Henri-Arnaud HansskeChief information officer of Centre

Hospitalier d’Arras. France

Dr Henri-Arnaud Hansske

has a PhD, public health,

epidemiology, biostatistics,

medical informatics. As well

as expertise in Emergency

medicine, Biostatistics and clinical

research, Biological sciences, Medical

information treatment in hospital and

networks, he holds an NLP masters in

Communication.

His career has encompassed the

Emergency Unit, Montreuil Sur Mer,

1991 - 1992 The Medical Information

Unit, Montreuil Sur Mer, 1992 - 2001

and he headed up the Town-Hospital

Network, Montreuil Sur Mer, 1998 -

2001 and has been responsible for

Information Systems, Arras, since 2001.

He is an ex-President of the North

Medical Information College and a

Member of the National Medical

Information College. He teaches in

the Medical University Lariboisière

(Paris) and the Medical University

Mondor (Paris)

Reinhold A. MainzCommissioner for Telematics on the

Implementation of a National Telematics

Infrastructure for Healthcare in Germany

Reinhold Mainz began his

career as a Public Servant

and studied computer

science. From 1978 to 1980

he was a Scientific

Assistant, Setup of a Clinical and

Epidemiological Cancer Register and a

Hospital Information System. During the

1980s he worked in the Governmental

Data Processing Centre, as Director of

the Department of Technique,

Consultant for State Authorities, and

Instructor in Computer Science. In 1988

he was promoted to Manager at a

Municipal Data Processing Centre and

besides this as a Lecturer in Computer

Science at a Technical University. From

1992 - 1996 he was at the Data

Processing Centre of ‘Kassenärztliche

Bundesvereinigung’ (KBV) (National

Association of Statutory – ‘Office Based’

- Health Insurance Physicians, Statutory

Body under Public Law), as a Leader of

the Department for Information

Technology and Systems.

Since 1997 in behalf of ‘Kassenärztliche

Bundesvereinigung’ (KBV) as part of the

‘Aktionsforum Telematik im

Gesundheitswesen’ (ATG) (Action Forum

Telematics in the Health Service).

Reinhold Mainz is a member of

‘Gesellschaft für Informatik’ (GI),

Working Group Member of ‘Deutsches

Institut für Normung’ (DIN), European

Board for Electronic Data Interchange

113

Standardization (EBES), ‘TeleTrusT

Deutschland’ (TTT), ‘Arbeitsgemeinschaft

Karten und Netze im Gesundheitswesen’

(AG Karten), ‘Aktionsforum Telematik im

Gesundheitswesen’ (ATG) and European

Health Telematics Association (EHTEL).

Commissioner for Telematics,

Implementation of a National Telematics

Infrastructure for Healthcare in Germany

in behalf of KBV as part of the

‘Aktionsforum Telematik im

Gesundheitswesen’ (ATG) (Action Forum

Telematics in the Health Service)

Dr. Angelo Rossi-MoriIstituto Tecnologie Biomediche, CNR,

President, Centre PROREC Italia for

the promotion of the Electronic

Health Record

Dr Rossi-Mori has a degree

in physics (University of

Rome-La Sapienza, magna

cum laude, 1973). His

research on health records

deals with the structures of clinical

information and terminology systems.

Dr. Rossi Mori was involved in the

preparation of many standards, and in

particular he was the project leader of

ENV 12264 ‘Model of semantics’ and

ENV 13606-2 ‘Communication of EHCR –

Domain Termlist’. He is currently

co-chair of the Templates SIG and a

member of the Technical Steering

Committee in HL7, as well a member of

the Chairman Advisory Group of

CEN/TC251.

Dr Rossi Mori’s international activities

include being the Italian representative

within the Working Party ‘Health’ of

ISTC (Information Society Technical

Committee) of EU, to define the

European research strategy for health

ICT; co-chairing the ‘Templates’ SIG in

HL7; and being a member of the

Technical Steering Committee of HL7.

He is at present a member of the Task

Force for the revision of the CEN

standard Communication of the

Electronic Health Record. Dr Rossi Mori’s

research and standardisation activities

are documented in many papers in

international journals and books.

Dr Anthony Nowlan Executive Director of the National

Health Service Information Authority

(NHSIA), England

Dr Anthony Nowlan joined

in December 1999 to help

build the NHSIA from its

precursor organisations and

in particular to establish the

Directorate responsible for strategic

relations with stakeholders, including

clinical professionals, patients and

citizens, health services management,

academia, and industry. He works closely

with the UK Department of Health.

Until recently Dr Nowlan worked on

secondment within the newly formed

National Programme for IT in the NHS.

This programme marks a stronger,

Author biographies

114

Author biographies

common approach to implementing

information services within the

local NHS and the wider national

health system

Following a first degree in physics from

Oxford, Dr Nowlan qualified in medicine

from University College London. He has

a PhD in health informatics from the

University of Manchester. As well as

clinical practice he has worked in

epidemiology and health services

research, been an NHS consultant in

public health, spent six years in

academic informatics research and

development laterally as a senior

lecturer, and has worked for the

Hewlett-Packard Corporation based

in the USA.

Sir John Pattison Director of R&D, Department of Health,

England

Sir John Pattison qualified in

Medicine at the University

of Oxford, England in 1968.

Shortly after that he entered

a training programme in

Pathology and specialised in Medical

Virology. He became a full Professor in

the University of London in 1977,

initially at King’s College Hospital

Medical School and from 1984 at

University College London. During this

time his research programme was

concerned with work initially on the

Rubella Virus and subsequently on the

Human Parvoviruses, B19. In relation to

the latter he published extensively on

the diseases associated with this virus.

Between 1977 and 1999 John Pattison

served at officer level in the following

UK organisations: Society of General

Microbiology; Royal College of

Pathologists; Royal Society of Medicine;

Medical Research Council; Public Health

Laboratory Service. In 1998 he became a

founder fellow and member of council

of the newly formed Academy of

Medical Sciences. In 1990 he became

Dean of the Medical School, and

subsequently Head of all Biomedicine at

University College.

In 1995 he became Chairman of the UK

Spongiform Encephalopathy Advisory

Committee (SEAC), the scientific

advisory committee advising the UK

Government on Bovine Spongiform

Encephalopathy. In early 1996 he was

responsible for bringing to the UK

Government and the general public the

news that BSE was associated with a

new human disease that has come to be

known as Variant CJD. In 1999 Sir John

was appointed Director of R&D at the

Department of Health, England.

Subsequently he became director of

Analytical Services and then Director of

Research, Analysis and Information

which involved a major role in NHS IT.

He is now Director of R&D again but

retains a senior role in IT.

John Pattison received a Knighthood

from the Queen in 1998 for his services

to medicine.

115

Professor Lars Y. TereniusDepartment of Clinical Neuroscience,

Karolinska Hospital, Stockholm, Sweden

Lars Terenius has a BSc. in

chemistry, microbiology,

biochemistry from the

University of Uppsala,

Sweden, 1962. and a PhD.

in medical pharmacology, University of

Uppsala, 1969.

His career began in the Department of

Pharmacology at the University of

Uppsala, where he became an Assistant

Professor. After two years as Associate

Research Professor for the Swedish

Medical Research Council, he was

appointed Professor and Chairman,

Department of Pharmacology, University

of Uppsala, and following that, moved

to become Professor and Head, Exp.

Alcohol and Drug Addiction Research at

the Karolinska Institutet. His

considerable international experience

includes Fogarty Scholar-in-Residence, at

the National Inst. of Health,

Washington, D.C.; Visiting Professor,

Rockefeller University, New York; Vallee

Visiting Professor, Harvard University,

Boston; Visiting Scientist at the Antoni

van Leuwenhoek-huis, Amsterdam, and

at the National Institute for Medical

Research, London, University of

Aberdeen; Hebrew University in

Jerusalem, Scripps Research Institute, La

Jolla; and The Neurosciences Institute,

San Diego.

Lars has been a Director, Center for

Molecular Medicine (CMM) Karolinska

Hospital, since 1994; Chairman,

Committee on Research Integrity and

Policy, Karolinska Institutet since 1996;

Director, Wallenberg Consortium North

for Functional Genomics, since 2000;

and is acting referee for several scientific

journals. He is presently on the Editorial

Board for Brain Research, and Chemistry

and Biology.

He two honorary degrees, seven

prestigious awards, 502 scientific

publications and is a member of the

following societies:

Royal Society of Sciences

(Uppsala), 1985.

Royal Academy of Sciences

(Stockholm), 1987.

Academia Europaea (Cambridge), 1989.

Nobel Assembly on Physiology or

Medicine, 1990.

American Academy of Arts and Sciences

(Washington), 1999.

Author biographies

As a long-term trusted business and technology advisor, Cisco InternetBusiness Solutions Group (IBSG) helps customers maximize their returnfrom technology investment. IBSG business and industry experts bringcustomers the latest industry trends and technology innovations,sharing Cisco and industry best practices. The group engages globallywith Cisco’s largest customers to help refine their business processes toincrease productivity, reduce costs, and create new revenue streams.IBSG offers business and Internet expertise across seven verticalindustries, including the public sector. It works with over half of thelargest organisations across each vertical industry and all of the top tenglobal telecoms providers.

The international public sector healthcare team, led by Kevin Dean,helps customers develop their strategies and implementation plans fornetworked health information management and technology. The teamworks with many national and regional Government public healthcarefunders and providers in Europe and around the world. Relationshipsare generally at the most senior levels in government or regionalorganizations, sharing experience and helping to accelerate customerinitiatives. The team also works with leading hospitals and healthcarecommunities to explore the advanced use of information managementin the management and delivery of care.

Cisco Internet Business Solutions Group

116

Thought LeadersEssays from health innovatorsEdited by Kevin Dean

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Occasionally in our working lives there is an alignment of

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The one topic that is consistently debated and the highest

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in the preface by Dr Kazem Behbehani, Assistant Director

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Kevin Dean, Director of European public sector Healthcare team

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and challenges for e-health in the 21st Century.

Kazem Behbehani

Walter Bergamaschi

Martin Berlin

Kevin Dean

Peter Drury

Håkan Eriksson

Bob Gann

Pierfrancesco Ghedini

Henri-Arnauld Hansske

Reinhold Mainz

Anthony Nowlan

Sir John Pattison

Angelo Rossi-Mori

Lars Terenius

thought leaders - cisco · advanced hospital management systems in a new location by henri-arnauld...

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