Changes between Initial Version and Version 1 of The Origins of openEHR


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Timestamp:
May 18, 2008, 2:29:01 PM (16 years ago)
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KOBAYASHI, Shinji
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  • The Origins of openEHR

    v1 v1  
     1= The Origins of openEHR = #dsy20-OE
     2 
     3 *  [http://www.openehr.org/about/origins.html#dsy20-OE_intro Introduction]
     4 *  [http://www.openehr.org/about/origins.html#dsy20-OE_gehr The Good European Health Record (GEHR) Project Proposal]
     5 *  [http://www.openehr.org/about/origins.html#dsy20-OE_gehr-participants Participants in the GEHR Project]
     6 *  [http://www.openehr.org/about/origins.html#dsy20-OE_gehr-accomplishments The Accomplishments of the GEHR Project]
     7 *  [http://www.openehr.org/about/origins.html#dsy20-OE_centc251 The Interface between the GEHR Project and Technical
     8Committee TC/251-Medical Informatics of CEN]
     9 *  [http://www.openehr.org/about/origins.html#dsy20-OE_synapses From GEHR to Synapses in Europe]
     10 *  [http://www.openehr.org/about/origins.html#dsy20-OE_australia Australia awakens the world electronic health care
     11records community to the approach of GEHR]
     12 *  [http://www.openehr.org/about/origins.html#dsy20-OE_implementation Implementation, Implementation, implementation! -
     13from GEHR and Synapses to Synex, Medicate and 6-winit in CHIME and UCL]
     14 *  [http://www.openehr.org/about/origins.html#dsy20-OE_openehr openEHR]
     15 *  [http://www.openehr.org/about/origins.html#dsy20-OE_openehr-manifesto First Ideas for the openEHR Foundation]
     16 *  [http://www.openehr.org/about/origins.html#dsy20-OE_whehr Whehr now?]
     17
     18  ''David Ingram October 2002''
     19
     20 Some ten years after the GEHR project was established in 1989, partners in
     21that project have come together again to review experience gained over the
     22intervening years. It is especially encouraging that a forthcoming ISO standard
     23will elevate formally defined clinical requirements to the highest level in the
     24standards process for electronic healthcare records. So many systems describe
     25themselves as electronic healthcare records and yet share little common concept
     26of what such an entity is and what it is for.
     27
     28 The research and development in this field has followed a chaotic and
     29tortuous evolution, influenced inevitably by commercial, political and academic
     30considerations and rivalries and also by severe inertia because of powerful
     31needs to continue to accommodate legacy systems. Confused and confusing
     32arguments have raged about esoteric models of ill-defined clinical terminology,
     33processes and communications. Continuing reinvention of wheels at these levels
     34of abstraction (more precisely concoction of alternative definitions and plans
     35of possibly wheel-like objects!), has inhibited progress. There is still an
     36urgent need for empirical study of the implementation and comparative evaluation
     37of a diverse range of approaches to the provision of high quality electronic
     38healthcare records. This must be informed by international consensus about the
     39requirements to be met.
     40
     41 
     42== Introduction - the AIM Initiative in Europe == #dsy20-OE_intro
     43 In 1988, the European Union established the Advanced Informatics in Medicine
     44(AIM) initiative, within the wide-ranging Framework Programme for Research and
     45Technology Development in Europe.
     46
     47 The rationale for the Framework Programme was:
     48
     49 
     50   * To strengthen the economic and social cohesion of the Community
     51   * To offer obvious benefits through the collaboration of several States
     52   * To apply significant and complementary results across the whole Community
     53   * To contribute to a common market and to scientific and technical unification
     54
     55 It succeeded in catalysing a wave of new partnerships across all sectors of
     56the European economy.
     57
     58 In relation to health, the Framework Programme objectives set out in 1988
     59were:
     60
     61 
     62   * To unify European activities by providing the means for efficient
     63communication of medical records and knowledge so that these may be understood
     64and compatible, thereby permitting the integration of health information systems
     65   * To strengthen competitiveness by advancing the technical basis of products
     66and services and commercialising European inventiveness in all scales of
     67enterprise
     68   * To improve the quality of life through improving diagnosis and treatment,
     69increasing public awareness and knowledge of health care and widening access to
     70improved services
     71
     72 Thus, from the earliest stages of the Programme, the harmonisation of
     73electronic health care records was seen as of the highest strategic importance
     74for health care development in Europe.
     75
     76 Under the outstanding leadership of Dr Niels Rossing, the AIM Programme was
     77developed in key phases, as follows:
     78
     79 
     80   *  '''1988 - 90''' Exploratory phase, 20 million ECU, 43 projects
     81   *  '''1990 - 94''' 110 million ECU, 38 projects; 12 concerted
     82actions (eg. Medirec)
     83   *  '''1994 - 98''' 135 million ECU, ~60 projects
     84
     85 The first major Call for Proposals under the AIM Workplan was issued in 1989.
     86A Key Action was to be research and development for an electronic health care
     87record architecture. There was intense competition among rival consortia seeking
     88funding to work on this challenge. Other Key Actions addressed clinical
     89terminology and clinical care protocols and important work in these areas
     90evolved in the early AIM Programme Projects (e.g. Galen, Games, Dilemma), and
     91colleagues from these days work alongside us to this day.
     92
     93 
     94== The Good European Health Record (GEHR) Project Proposal == #dsy20-OE_gehr
     95 A Consortium was drawn together by Dr Alain Maskens and Dr Sam Heard to bid
     96to work within AIM on electronic health record architecture. Alain, a Belgian
     97oncologist, was running HDMP, a small software company specialising in
     98electronic healthcare records for GPs. Sam, an Australian General Practitioner,
     99was lecturer at the Medical College of St Bartholomew’s Hospital in London and
     100ran a practice in East London and had developed a general practice system
     101supported by a cooperative of general practices. The two had met through
     102Professor Mal Salkind, head of General Practice at St Bartholomew’s, during the
     103AIM exploratory phase and had begun to collaborate on the development of a
     104generic EHR system.
     105
     106 The Consortium comprised seven professional, industrial and academic
     107partners: St Bartholomew’s Medical College (co-ordinating partner); HDMP; The
     108French Red Cross Hospitals; The Association of Doctors and Dentists of
     109Luxembourg; The General Practice Institute of Oporto, Portugal; France Telecom;
     110Smithkline Beecham.
     111
     112 Professor David Ingram, Professor of Medical Informatics at St Bartholomew’s
     113Medical College, was invited to lead the Consortium, to prepare the proposal
     114and, subsequently, as Project Director, to run the project. In this, he worked
     115closely with Lesley Southgate, who had succeeded Mal Salkind as Head of Primary
     116Care at St. Bartholomew’s.
     117
     118 The project proposal was put together in three months in early 1991 and was
     119given the title ''The Good European Health Record'' (GEHR); the name was
     120proposed by Alain Maskens. After a final 72 hour, round the clock, weekend
     121flurry of preparation, it was submitted just in time. It emerged as an
     122unexpected but warmly endorsed winning proposal, in the adjudication that
     123followed. Some rival consortia had worked for several years to position
     124themselves for the work, so the result was controversial. Negotiations, led for
     125GEHR by David Ingram, were completed with the Commission who were represented by
     126the Project Officer, Jacques Lacombe, and Michael Wilson. The project commenced
     127in January 1992.
     128
     129 
     130== Participants in the GEHR Project == #dsy20-OE_gehr-participants
     131 In addition, to David and Sam, of those still closely involved in the
     132continuing story of GEHR, Dr Dipak Kalra, who led the GEHR Clinical Task Group,
     133and David Lloyd, a key contributor to the technical Task Group, joined the St.
     134Bartholomew's team at the outset. Dr Jo Milan, Director of Information at the
     135Royal Marsden Hospital, London, and Dr Stanley Sheppard, Chief Executive of
     136Update, a UK general practice software company, joined as sub-contractors to St.
     137Bartholomew's. Update had to withdraw from the Consortium in the early days of
     138the project, but Stan maintained contact on a personal basis. Tom Beale was
     139employed as a consultant to the Royal Marsden in 1993 and subsequently joined
     140the St Bartholomew's GEHR team, as a consultant, to assist in the key modelling
     141phase, leading to the first GEHR object model for the health care record. David
     142Ingram was appointed Professor of Health informatics at UCL in London in 1995
     143and the team, moved there to establish the Centre for Health Informatics
     144(CHIME). Marcia Jacks was the GEHR Project Administrator and is now co-ordinator
     145of CHIME at UCL, where the St. Bartholomew's team moved.
     146
     147 Notable contributions in GEHR were also made by:
     148
     149 Jeff Geboers, HDMP; Christian Aligne, French Red Cross; Olivier Baille,
     150France Telecom; Daniel Mart, Association of Doctors and Dentists of Luxembourg;
     151Jose Calado and Helder Machado, Institute of General Practice, Oporto; Mario
     152Cortelezzi, Luxembourg; Penny Grub, Richard Dixon, University of Hull; Lesley
     153Southgate, Jeanette Murphy and Sian Griffiths, St Bartholomew's Medical College;
     154Ian Grey and John Shorter, !SmithKline Beecham; Benoit Hap, C2V Paris;Gerhard
     155Brenner, Carlos Salvador.
     156
     157 Lesley Southgate, is now President of the Royal College of General
     158Practitioners of the UK and Daniel Mart is General Secretary of the Association
     159of Doctors and Dentists of Luxembourg.
     160
     161 
     162== The Accomplishments of the GEHR Project == #dsy20-OE_gehr-accomplishments
     163 The work of the GEHR project is well documented in its many widely
     164communicated project reports, publications and software, and described on the
     165CHIME.ucl.ac.uk web site. The final AIM Conference Paper concluded the first
     166stage of the story of GEHR. All public deliverables of the Project may be
     167downloaded from the UCL, CHIME web site.
     168
     169 Working on the GEHR Project was an absorbing and unforgettable experience. It
     170tackled an intrinsically difficult and contentious domain. Its results, which
     171have continued to evolve in many projects and standards developments, have
     172proved to be enduring accomplishments, from clinical, technical and
     173organisational perspectives.
     174
     175 Key attributes of the project approach and accomplishment were:
     176
     177 
     178 1. Experienced, competent, committed and passionate multi-professional
     179teamwork. The team worked very hard, disagreed and fought at times, but also
     180evolved a culture of friendship, mutual support and loyalty, through some
     181difficult challenges.
     182 1. Development of an original, formal approach to electronic health record
     183architecture, based on object modelling methods and founded on a comprehensive
     184and systematic review of patient and clinical professional roles and
     185requirements, across Europe, in relation to records.
     186 1. An empirical and iterative prototyping approach to the evolution of the
     187architecture, emphasising implementation and testing of concepts, practically,
     188at each stage.
     189 1. The decision of the partners, in the interests of effective dissemination of
     190the work, to publish the project results openly, within the public domain. The
     191EU Contract in principle vested IPR for the work with the Consortium.
     192
     193 Warmly supported as it was by Niels Rossing and the Commission and by its
     194Project Officer, Jacques Lacombe, the Project proved from its very earliest
     195stages and over time not to be short of powerful opponents, as well. Its results
     196were provided, step by step as they were available and often before official
     197publication, into all the stages of the formulation of EU pre-standards of CEN
     198and further afield.
     199
     200 
     201== The Interface between the GEHR Project and Technical Committee
     202TC/251-Medical Informatics of CEN == #dsy20-OE_centc251
     203 At about the same time that the AIM Programme was initiated, CEN established
     204a standards initiative for medical informatics through its Technical Committee
     205TC/251, led by Prof. Georges de Moor. The strategic co-ordination achieved
     206between the AIM and CEN activities was sometimes disappointing and their goals
     207and methods were very different. AIM was tackling the domain through extensive
     208and well funded applied research and development in wide-ranging consortia such
     209as GEHR. CEN, with much less resource, was tackling its role as a consensus
     210building process, using task forces of experts to propose standards which were
     211then voted on by national delegates. Of course, both empirical research and
     212standards setting activities are needed to advance the field.
     213
     214 During the course of the GEHR Project, a Project Team was established under
     215TC/251 of CEN, to propose a pre-standard health record architecture. Some early
     216deliverables of GEHR, in formulating clinical requirements and proposing early
     217formal models for the EHCR, were requested by and provided to the CEN project
     218team, led by Petter Hurlen. This team, in which some members of GEHR
     219participated, published the first CEN pre standard, ENV 12265. The extensive use
     220and influence of GEHR project results and concepts available at that time are
     221clear in the CEN publication. The GEHR project continued to develop and refine
     222its approach after the pre-standard was published.
     223
     224 GEHR sought to work in a spirit of co-operation. Recognising its deficiencies
     225and successively refining its results, in the public domain, was a key feature
     226of its working method. Opposition and contrary perspectives provide an important
     227and useful crucible for innovation. GEHR was quite radical in its approach and
     228no doubt uncomfortable to have as a partner, as a result.
     229
     230 
     231== From GEHR to Synapses in Europe == #dsy20-OE_synapses
     232 The GEHR Project came to an end at the end of 1994 and two proposals to
     233extend its work plan were not immediately successful. One of these was for a
     234Support Action to maintain co-ordination in health record architecture work and
     235the other for more extensive field trials of the architecture. GEHR had
     236delivered a significant, but by no means completed, advance in the application
     237of object modelling approaches to the electronic health care record (EHCR) and
     238its evaluation against comprehensive clinical and ethical requirements as well
     239as implementation experience. It was clear to the team that this first stage
     240GEHR architecture, the first GEHR Object Model, would require continuing
     241refinement in the light of implementation experience.
     242
     243 The project had, throughout, grappled with the issues of relational versus
     244object database representations of clinical data. At the stage of evolution of
     245database technology then pertaining, these concepts were in a state of
     246considerable flux. Aspects of functionality were highly desirable, but they were
     247hard to combine. Both camps argued their case, responding to the emerging needs
     248of complex applications domains, of which the medical record was an obviously
     249challenging example.
     250
     251 At the close of the project, the GEHR partners could see the potential
     252requirement for a public domain foundation to take forward their work. It was
     253resolved to leave this issue open until some future stage, when the rationale
     254for how this might operate had become more apparent.
     255
     256 In summer 1995, the St Bartholomew's team moved with David Ingram, across
     257London to UCL, when he was recruited to establish the new UCL Centre for Health
     258Informatics and Multi-Professional Education (CHIME). Sam Heard and Tom Beale,
     259now both based in Australia, have remained in close touch with the UCL team have
     260continued regular visits to and fro. David Ingram has made academic visits to
     261Australian Universities and as participant and keynote lecturer at two national
     262Health Informatics Conferences, in Melbourne and Hobart.
     263
     264 The GEHR approach remained alive in CHIME and its collaborating centres.
     265Successive research results and implementations of record servers based on this
     266are now making key contributions within the newly launched UK ''Information
     267for Health'' Strategy. The GEHR approach was taken forward on a broader
     268front, beyond the UK and Europe, especially by Sam Heard, Tom Beale and Peter
     269Schloeffel and their colleagues in Australia.
     270
     271 Reactions against GEHR: When the GEHR project came to an end, a reaction set
     272in against it. The first GEHR Object Model became a focus of concerted
     273opposition within some groups working in the domain in the UK and within CEN
     274standards bodies. The questioning of the assumptions and approaches of existing
     275products and approaches had been inevitable, but did not make GEHR popular,
     276although its approach always sought to be constructive. It was unfortunate that
     277the work of GEHR came, apparently, to be perceived as a threat to other
     278interests and ambitions, evidenced by the manner in which it was opposed, early,
     279tentative and incomplete as its results were.
     280
     281 One important area of controversy arose in the confrontation between the
     282record architecture paradigm and the paradigm of healthcare messages between
     283systems, as typified by the EDIFACT initiatives and the HL7 consortium of
     284suppliers, for interoperability between their products. The advocacy by GEHR and
     285its successors of a record architecture to anchor information standards and
     286services and their contexts within records was controversial and was, and still
     287is, opposed. It did not help that most available clinical systems claiming to be
     288clinical records systems did not meet the commonly agreed clinical understanding
     289of what a clinical record is and the requirements it must meet.
     290
     291 It is interesting that, in facing the technical and clinical challenges of
     292implementing real clinical record systems within real health care contexts,
     293health care and international standards bodies have only recently begun to
     294explore rigorously what the requirements for such systems are and how their
     295performance may be assessed against these. This is inexorably drawing the issues
     296raised by the GEHR project, over ten years ago, back into play. The need to
     297focus efforts in this way, as we enter the post Human Genome Project era, is, if
     298anything, more crucial today.
     299
     300 The objective of reverse engineering a health record information model from
     301the legacy of an evolving messaging semantics, as typified by successive HL7
     302versions, is difficult! In GEHR, such messages were seen as being derivable
     303straightforwardly from the GEHR object model underlying the record formalism, in
     304a clinically comprehensive and ethically acceptable manner. However, without an
     305accessible public domain implementation of such a record architecture, it is
     306quite understandable that existing suppliers of systems, struggling to evolve
     307their products to meet the requirements of patient centred and clinically more
     308accountable care, view such an initiative with some concern.
     309
     310 Synapses: In 1995, David Ingram and the UCL team joined forces with Professor
     311Jane Grimson of Trinity College Dublin in a new consortium aiming to propose a
     312project to explore the legacy systems integration issues in progressing towards
     313a federated electronic healthcare record. From the other GEHR participants,
     314Daniel Mart of The Association of Doctors and Dentists of Luxembourg and Jo
     315Milan of the Royal Marsden also joined this larger consortium of EU teams and
     316industries, which included Siemens and Hiscom as major suppliers.
     317
     318 Reflecting on the results of the GEHR Project, and looking at the new
     319challenges of implementation of a federated approach, Jo Milan and David Ingram
     320developed and wrote the methodological section of the Synapses Project Proposal
     321that proposed a new paradigm for implementation of the record, which divided the
     322formal description of the architecture into a high level structural model
     323(Synom) and a model of clinical content (Synod), implemented through a clinical
     324object dictionary.
     325
     326 The Synapses project from 1995-98 succeeded in implementing several pilot
     327record servers, built according to the Synom/Synod principle, across Europe (see
     328CHIME and TCD web sites). The user requirements and information modelling
     329workpackage was led by Dipak Kalra, and the implementation workpackage by David
     330Ingram.
     331
     332 Controversy still dogged the formal methods to be adopted and the principles
     333and detail of the Synom and Synod were difficult and contentious matters within
     334the Synapses consortium. Legacy environments in the demonstrator sites inhibited
     335freedom to design ''de novo'' and reconciling those who wished to restrict
     336implementation to the concepts of the earlier CEN pre-standard model and those
     337who favoured further evolution, utilising the later results of GEHR and moving
     338forward from there was also difficult. Synapses proved another burning crucible
     339of endeavour, where staying power was challenged to the full!
     340
     341 Synapses reached a compromise to extend the fundamental concepts of Env
     34212265, with new aggregation structures to accommodate the requirements analysed
     343and provided for within the GEHR Object Model (GOM) in the later stages of the
     344GEHR project. The low-level Synom/Synod approach, as further developed by the
     345UCL team, proved a robust foundation of implementation, avoiding some of the
     346implementation difficulties associated with the fine granularity of the single
     347level architecture of the original GOM. Progress at UCL with the concept of the
     348object dictionary and tools to support it was encouraging.
     349
     350 
     351== Australia awakens the world electronic health care records
     352community to the approach of GEHR == #dsy20-OE_australia
     353 Aware of the anti-GEHR sentiments in the UK and in CEN in Europe, Sam Heard
     354and Tom Beale joined forces again in Australia, in 1996, to work together to
     355refine the GEHR Object Model through implementation. This also led to a two
     356level modelling approach - the health record architecture itself and the
     357clinical models or standards required for automatic processing of information.
     358The latter has become known as the GEHR archetype system.
     359
     360 The SynOD and Archetype approachesweresubsequently discovered to be largely
     361the same and have been progressively haremonised within a common ''open''EHR architecture. Peter Schloeffel had met David Ingram with
     362Michael Britton, at UCL, in 1996 Michael and David Newble obtained British
     363Council support to invite him to contribute key lectures at a symposium in
     364Adelaide in August 1998, with Sam Heard, and there he met Peter again, as a
     365local systems supplier.
     366
     367 Following this event, Peter subsequently met Stan Sheppard and started to
     368develop a business partnership. In these partnerships began the renewed
     369Australian focus on developing the results of the original GEHR project which
     370has had a considerable influence, internationally in the ISO, HL7, CEN and, more
     371importantly in many Net discussion groups and in meetings about the EHCR in the
     372USA. In Australia, the team achieved considerable success in moving to the
     373centre of the national development programme for the EHCR. They worked with
     374systems R&D teams at DSTC on implementation of a GEHR server or kernel,
     375based on the archetype model for content within a higher level information model
     376close to the higher levels of the original GEHR object model.
     377
     378 
     379== Implementation, Implementation, implementation! == #dsy20-OE_implementation
     380  '''- from GEHR and Synapses to Synex, Medicate and 6-winit in CHIME and
     381UCL '''
     382
     383 The behaviour of standards communities in these times, spending much time,
     384money and energy disputing and seemingly seeking above all else to dominate one
     385another’s agendas, was scientifically extremely questionable, yet seemed to
     386brook no questioning. It is not sufficient justification that standards for
     387health information management are deemed crucially needed, that a crude
     388consensus and legislative process be adopted for their definition, when the
     389underpinning empirical foundations for organising and modelling information in
     390the domain are still in process of evolution through empirical research.
     391Monolithic modelling of healthcare information domains is clearly a fascinating
     392exercise but, if devoid of empirical and practical context, clear domain
     393definitions and verifiable objectives, has little if any meaning. Such models
     394are in any case inevitably non-identifiable or non-unique formulations,
     395incapable of purposive application within implementable and clinically viable
     396systems.
     397
     398 This may all sound rather obvious but a review of much work from many bodies,
     399especially governmental and inter-governmental bodies over recent decades, will
     400show that information standardisation has frequently proceeded devoid of
     401empirical testing and validation and that many costly failures have resulted
     402therefrom. This matters to patients and has been disastrous in the quest to use
     403information technology to support cost-effective health care services!
     404
     405 Given this flow of events, the UCL team concluded that three immediate things
     406now mattered more than any other. These were implementation, implementation and
     407implementation!
     408
     409 The team thus put its head down to get on with developing its new research,
     410alongside new graduate and educational programmes. In developing its ideas, post
     411GEHR, it started a prolonged period of intensive software implementation and
     412evaluation of the record architecture and object dictionary, led by Dipak Kalra
     413with Tony Austin, David Lloyd and Alexis O’Connor, and Vivienne Griffith. This
     414work was conducted throughout the EU Synapses project, then in the EU Synex,
     415Medicate and now the 6-WINIT and CLEF projects, and with David Patterson as an
     416invaluable clinical sponsor as head of the Whittington Hospial Cardiology
     417services. In these projects, the underlying concepts evolved beyond GEHR were
     418widely tested for implementation in cardiology, cancer and respiratory medicine
     419domains, in hospital, telecare and now in mobile systems contexts. In the Synex
     420Project a wider grouping of record architecture, terminology (GALEN) and
     421protocols (Proforma) formalisms were drawn into the Consortium. This six-year
     422trial by implementation rather than trial by standardisation committee has borne
     423much fruit in implemented practical clinical exemplars of the record
     424architecture and object dictionary at work.
     425
     426 David Lloyd, co-ordinating the EHCR-SupA project, put a great deal of effort
     427into continuing inputs to the next CEN team established to take record
     428architecture forward and also into a concerted action within the Framework
     429Programme, to look at synthesis among the different modelling approaches to the
     430EHCR.
     431
     432 
     433==  ''open''EHR == #dsy20-OE_openehr
     434 In 1998, at the conclusion of the Synapses Project, David Ingram circulated a
     435paper about the need for a clinically focused Foundation to own the content
     436domain around standards for clinical information management. It attracted
     437interested comment and it was left with UCL to take it forward. In late 1999, a
     438joint meeting of the Australian and UCL teams, in London, considered the forward
     439pathway for the work of their two teams, in this context. They feared that some
     440divergencies in their respective implementation pathway, architecture and
     441content models were emerging and wished to work towards convergence again, if
     442possible. The meeting decided to work to establish an open source foundation to
     443take forward harmonisation in the field, from patient and clinical perspectives.
     444The name ''open''EHR, proposed by David Ingram, was adopted. Membership, it
     445was felt, should be open to all signing up to a set of principles guiding the
     446Foundation’s activities, which emphasised constructive, inclusive and
     447empirically based evolution of rigorously defined software and systems,
     448organised around the two level strategy of the UCL object dictionary and the
     449Australian archetype methodology. It was agreed to allow implementation to
     450proceed in parallel over a further period of about a year before meeting to seek
     451to reconcile a common achievable way forward.
     452
     453 David Lloyd undertook the task of drawing together the threads from the
     454meeting and developing an ''open''EHR web site. David Ingram was given a
     455brief as chairman of the initiative to seek early funding of an umbrella to hold
     456together the concept of a three-time zone foundation with component groups in
     457Europe, Australia and the USA. Peter Schloeffel was asked to pursue a role as
     458ambassador for ''open''EHR, to press ahead with Sam and Tom to establish
     459the Australian chapter as the first step and to seek to find a USA partner.
     460
     461 
     462== First Ideas for the ''open''EHR Foundation == #dsy20-OE_openehr-manifesto
     463 A draft "manifesto" was prepared for discussion with interested parties, as
     464follows.
     465
     466 The ''open''EHR Foundation is an international, on-line community whose
     467aim is to promote and facilitate progress towards electronic healthcare records
     468of high quality, to support the needs of patients and clinicians everywhere. It
     469will publish the theoretical foundations and evaluations of its work in the
     470public domain and make available relevant EHCR source programs and datasets
     471under an !OpenSource license. This continues the tradition of the GEHR project,
     472from which ''open''EHR has emerged, of placing results in the public
     473domain. We recognise that there is a certain initiative fatigue in the field and
     474we would not propose a new initiative were we not sure that something radically
     475different is now essential. So many systems describe themselves as electronic
     476healthcare records and yet share little common concept of what such an entity is
     477and what it is for.
     478
     479 The research and development in this field has followed a chaotic and
     480tortuous evolution, influenced inevitably by commercial, political and academic
     481pressures and rivalries and also by severe inertia because of the need to
     482continue to accommodate legacy systems. Confused and confusing arguments have
     483persisted about esoteric models of ill-defined clinical terminology, processes
     484and communications. Continuing reinvention of wheels at these levels of
     485abstraction has inhibited progress. There is an urgent need for more empirical
     486study of the implementation and comparative evaluation of a diverse range of
     487approaches to the provision of high quality electronic healthcare records,
     488informed by and informing international consensus about the requirements to be
     489met. It is especially encouraging that the ISO has now adopted work which will
     490elevate formally defined clinical requirements to the highest level in the
     491standards process for electronic healthcare records.
     492
     493  ''open''EHR directs its efforts towards:
     494
     495 
     496 * well-formulated clinical requirements, offered as a contribution towards
     497international consensus
     498 * rigorous development, implemention and evaluation methodology for systems
     499 * common information model for the record, where clinical requirements dictate
     500that this is necessary and where the relationship between model and requirements
     501is made explicit
     502 * diversity of information models and implementations, where these will enrich
     503experience of a variety of approaches and systems and thereby promote the
     504evolution towards high quality and cost-effective EHR solutions offered
     505 * empirical evaluation of systems performance against clinical requirements
     506
     507  ''open''EHR recognises that achieving its aims is extremely complex on
     508many levels and certainly beyond the co-ordination powers of any one group. It
     509believes that progress can be enhanced by interested groups coming together to
     510promote and facilitate implementation and evaluation of systems using a
     511co-ordinated methodology, and working openly within the public domain. It has
     512not proved possible for the power of commercial and political organisations to
     513devise and mandate solutions which demonstrate that they provide good quality
     514EHCRs. An open developmental process is proposed in an effort to break this
     515damaging impasse. ''open''EHR has started a process of bringing together
     516like-minded conceptual thinkers and systems implementers, prepared to offer
     517their work to the EHR community in this way.
     518
     519 In pursuing its aims, ''open''EHR will:
     520
     521 
     522 * be open to all who sign up to its objectives and methods of work
     523 * have free individual membership
     524 * charge membership fees for official bodies, on a not-for-profit basis
     525 * help to define and support a common process of specification of clinical
     526requirements, specification and implementation of systems and evaluation of the
     527electronic healthcare records provided (Note: this will be termed the GEHR (Good
     528Electronic Healthcare Record) methodology, since it will rest initially very
     529heavily on the methods set out and followed for the first time in the GEHR
     530project from 1989. This 7-country R&D project developed concepts, object
     531model and early prototypes and tools for a common European Health Record
     532Architecture and has been drawn on in subsequent partnerships and projects
     533across the world. The work was placed by the partners in the public domain and
     534fed into and adopted by standards bodies)
     535 * publish the work of projects and systems conducted within the ''open''EHR community and adopting the GEHR methodology.
     536 * offer the sources of such GEHR-based systems, in which IPR will be assigned
     537to ''open''EHR, under an open-source license within the community.
     538Individuals or companies assigning IPR to the Foundation may where necessary and
     539appropriate be remunerated under contract or through license fees.
     540 * offer all its work openly in a spirit of a public enterprise, believing that
     541this is the best and perhaps only way that appropriate high quality and
     542interoperable systems are likely to emerge, worldwide.
     543 * seek constructive relationships with groups and communities focusing on
     544other aspects of clinical information management such as messages, terminology,
     545knowledge-management and decision-support.
     546
     547  '''''open''EHR will not:'''
     548
     549 
     550 * campaign against or obstruct others working on electronic healthcare
     551records. On the contrary, it will welcome and endorse their success in meeting
     552the aims and objectives of ''open''EHR.
     553
     554 
     555== Whehr now? == #dsy20-OE_whehr
     556 Until implementations have been conclusively demonstrated and a pathway of
     557development of the Foundation is clear, no-one will listen very much or take
     558risks in what ''open''EHR is advocating - that is to start basing national
     559strategies on the approach we are advocating. Governments in every country are
     560receiving such contradictory advice from people who say either that HL7 already
     561solves everything or that EHCRs are easy/too difficult and don’t need/cannot
     562have a common approach to the record architecture!
     563
     564 A presentation was made to The Provost of UCL and he enthusiastically gave
     565his support to UCL providing co-ordination of ''open''EHR, through its team
     566in CHIME.
     567
     568 This presentation was also introduced to The Wellcome Trust, NHS Executive
     569and to the UK NHS Information Authority and Policy Unit.
     570
     571 Following the UK CSR2000 public spending review, in which David Ingram
     572participated on the national research councils’ informatics committee,
     573substantial investment is planned in the UK and Europe into GRID demonstrator
     574projects. An opportunity arises to link bio-informatics and health informatics
     575research and development here. The UCL team linked with Alan Rector in
     576Manchester, with Don Detmar in Cambridge , and with other colleagues in
     577Sheffield and Brighton to bid successfully for the CLEF project.
     578
     579 Through the NHS National Plan, the opportunity arises to take forward
     580demonstrators for the EHR in e-health incubator projects. Dipak Kalra has
     581established excellent links with Oracle and the NHS project delivering an EHR
     582for the national Cardiovascular disease service framework, building on the now
     583very strong collaborative work at the Whittington Hospital.
     584
     585 A week long meeting of the embryonic ''open''EHR international
     586co-ordination group was held in London in February 2001, to review progress. It
     587was attended by Sam, Tom, Peter, Mary, Dipak, David L and chaired by David I.
     588
     589 The clinical and technical motivations for the Australian work on GEHR since
     5901997 and its focus on splitting the original GEHR approach into a two level
     591architecture, centred on user defined clinical archetypes, was closely studied,
     592alongside the implementations of the UCL ''open''EHR server incorporating
     593the two level object model and object dictionary concept, evolved by UCL through
     594its post GEHR projects. These systems are now seen, in the light of
     595implementation experience of both teams over the year, to have been largely
     596identical. UCL, now freed from the constraints of working within the compromises
     597of Synapses and Synex in Europe, has reverted to its earlier GEHR approaches, to
     598deliver clinical prototypes of its own EHCR record server, which is now termed
     599an ''open''EHR server. This has been adopted, with Oracle Corporation as
     600the basis of middleware for the South West Region of the NHS ERDIP project on
     601electronic records for cardiovascualr disease.
     602
     603 Now that the outcomes of the two streams of work are drawing together again
     604in renewed collaboration, the differences appear small and the benefits of
     605aligning them completely are compelling. At the meeting, the Australian and UCL
     606teams worked intensively to define a convergence pathway for their work, within
     607the emerging ''open''EHR Foundation.
     608
     609 In the mean time, the Australian team has succeeded wonderfully well in
     610creating the Australia and Far East ''open''EHR Foundation as a pilot
     611initiative towards the vision of three such Foundations in Australia, Europe and
     612the USA.
     613
     614 We need to focus on these opportunities for cross-governmental funding for ''open''EHR, perhaps splitting the main open source and content
     615standardisation roles of the foundation from a trading arm, owned by the
     616Foundation, to develop revenue streams to support the goals of the Foundation.
     617
     618 At the same time, we have to remain firmly focused on our continuing pathway
     619of keeping our teams together, expanding our partnerships and delivering the
     620results needed to win the day!