Update from the openEHR Board Chairman - D.Ingram

It’s a year since I wrote about the intergovernmental workshop in Copenhagen, called to consider problems being experienced, internationally, with implementation of health care information standards. As you know, the core team of openEHR was invited to attend this event, and to present there.

Over the year, the Foundation has made steady progress on a number of fronts: building a partnership with the IHTSDO; exploring the most appropriate license and copyright for archetypes and templates; beginning to scope the future commercial interface of openEHR; progress in open-source implementations. It is timely to provide a further update on these issues, and also to comment on difficulties we have faced which have been reflected in some expressions of dissatisfaction within the wider community. It is clearly important that we proceed, as quickly as possible, to clarify and complete some important aspects of the specifications (notably concerning templates and archetype specialisations). We must also accelerate progress towards new governance, to reflect the growing interest from a number of different sectors and regions of the world. In the coming months it will be of the highest priority to work out how best the Foundation can hand on the work and IP it has nurtured, into a new, suitable and sustainable form of governance, faithful to its founding mission and reflecting all contributions and interests.

There is quite a lot that needs saying at this point, I feel. Inevitably, my comments provide personal perspective, as well as official perspective on behalf of the Foundation Board. One or another openEHR-related issue is coming to me, almost every day and evening. That in itself is an indication of the need for change in the organisation, now that it has shown that it has valuable and worthwhile things to offer - widely tracked and emulated, as we can see from web analytics. Since I contribute to the openEHR lists infrequently, I hope I can be forgiven by those who may be outraged by the four page length of this piece! In my defence, I observe that the Internet generation’s cumulative blogs and dialogues can also tend to be somewhat lengthy – and repetitive, even!

When I write ‘we’ or ‘our’, below, I am writing for the Foundation Board and the chairs of both the ARB and the CRB. Our current agenda deals with a wide and complex range of interlinked issues:

• Maintaining and improving the openEHR specifications and associated web sites and source repositories
• Providing a forum for technical, clinical and implementation communities and for others interested in following their progress
• Clinical content development based on openEHR archetypes
• Partnership with professional and governmental organisations
• License, copyright and trademark approaches
• New governance arrangements, inclusive of individual, professional, organisational and company stakeholders and interests
• Funds to enable openEHR to developed in its next phase of evolution

By way of introduction to this commentary, I would first like to say that we share the frustrations and concerns that people are expressing, both privately and in some of the comments on the web lists we maintain, about openEHR’s governance and resourcing. In reality, these come down, overwhelmingly, to time and money. There is little else constraining the Foundation’s wish and ability to develop and change, in ways it can and should, to support efforts towards better EHRs, in many countries and in many organisations, large and small.

openEHR has cost a considerable amount of effort and money over the seven years since UCL and Ocean Informatics created the Foundation in 2002. Work in the preceding decade, devoted to underpinning R&D work, was funded by substantial grants and other personal contributions. Costs have been, and are increasingly being incurred in the openEHR-related activities of many others around the world, as the specifications are adopted and improved upon in a growing and active community of innovative implementers - probably approaching some 100 strong. The growth in professionally-led archetype development activities, under the auspices of the openEHR CRB and Ocean, is also very impressive, but costly nonetheless. Of course, we fully understand that commercial and other human realities mean that not everyone wants or is able to share what they are doing in the way that Ocean, UCL, Cambio Healthcare Systems, Linköping University, the oSHIP project (Tim Cook), and others, have shared their work on the openEHR specifications, related tooling and software, and on archetype development.

It’s widely known but probably needs to be said again, at this point, that I have been backed in providing an institutional umbrella for these early stages of openEHR, not because of any perceived commercial advantage to UCL (that suggestion would draw a somewhat wry smile from the CEO of UCL Business), but, rather, on the basis of an academic commitment and contribution to a crucial field, approved at the highest level in UCL. Such support has to be earned and sustained, of course, as in any large institution.  It has been an essential support for me in helping openEHR to this point in its development, including Dipak’s long-term international contributions to CEN and ISO EHR standards, supported in large part by grants secured by us, within CHIME at UCL.

The mission of the Foundation remains as it always has been. It has only ever existed as a convenient vehicle, created by UCL and Ocean Informatics, to hold openEHR IP and Trademark and as a symbol of joint practical work towards making electronic health care records a clinical and health care reality. We prioritise implementation, over all else, as the way, gradually, to help make things better in the EHR domain. Because we have had few resources, we have had to keep things very simple organisationally, placing the Foundation as a not-for-profit company under the umbrella of UCL. All the core team have UCL contracts, and thereby I have been able, as a Head of a UCL Department (CHIME), to include it within my academic mission and receive support in terms of legal and contractual advice, as well as provide administrative and IT support and use personal discretionary funds, in keeping things moving forward.

All that said, we are very aware and sensitive to the fact that, given the lack of any dedicated Foundation resource, thus far, people closely identified with the Foundation have roles and responsibilities in a number of different organisations and must act accountably, in these. This is both a good thing and a bad thing for openEHR’s mission; good because it provides a balance of stakeholder issues and concerns within the core group of the Foundation, bad because we all tend to be over-stretched and sometimes fall down in not having clear enough demarcation lines between our different roles.

We are the first to admit that this is not good enough for the future. Our problems lie in not yet having succeeded, in multiple efforts, to gain resources to make the needed changes, while staying true to the Foundation’s clinically focused mission. I have undertaken a large part of the lobbying for governmental and other backing and, for one reason and another, have only achieved expressions of support but no cash, whatsoever – in that I have failed. Some would have put their money into protected IP but no-one into what has been, essentially, a formative, disruptive and risky adventure, with acknowledged costs and benefits but just seen as too hard to engage with at a high level until it has already succeeded! ‘Twas ever thus, with wicked problems. I accept full responsibility for that failure, but believe we have been proved right, many times over, in holding to our mission and ways of working.

In view of this funding problem, we have resolved to keep the Foundation moving forward, in one way or another, until such time as actual use of openEHR IP begins to bring external pressure and make the case, successfully, for its future sustainability. It seems that the pressure, at least, is now arriving. It is very important that we are successful in using this to position the Foundation to ensure there are adequate resources to support the uptake of openEHR, around the world.

In the task of sustaining and improving openEHR, just as with the core mission of the Foundation itself, implementation is the key – talking, travelling and writing, though clarifying and even soothing (for some) at times, does not get us there, and can actually hold the field back. First, we believe that the most important way to help towards the goal of better EHRs is to have a policy of making it as easy and productive as we can for anyone, anywhere, to use the methods and IP deposited within the Foundation. Second, we also believe that the best way to work towards satisfactory governance is to have, as a policy, the alignment of the Foundation’s mission with wider professional and regulatory initiatives, through inclusive partnerships with cognate organisations, such as IHTSDO and EuroRec.

Regarding the first of the above policies, the openEHR specifications are made freely available without incumbency and are always, without exception, contributed to on that basis. Speaking for UCL and its wider strategy in eHealth, in which I am deeply involved, just now, we are likely to extend our open source software activities in health IT platforms and clinical science applications. This policy is in large part because we need them, as a very high priority, to be transparent and shareable, at the heart of our local academic and health care missions, comprising organisations with total turnover approaching £2 billions per annum. It is also because we have much wider clinical, scientific and engineering expertise, within the University and our associated health provider institutions that we wish to disseminate, as part of our wider academic mission, including through many institutional partnerships we have with government and industry around the world.

Regarding future governance policy for openEHR, again, we are listening to all suggestions and opportunities arising, in seeking the best way forward, and we welcome the excellent and constructive suggestions for change that are being made. We have continued to work on developing an understanding with IHTSDO (led by me) and EuroRec (led by Dipak Kalra), towards a shared agenda in managing clinical content for the EHR. A joint statement with IHTSDO was published in September. To inform the discussion with IHTSDO, Thomas Beale took the lead in generating a set of documents cataloguing the resources deposited within the Foundation by its founding members, UCL and Ocean Informatics, as well as many others.  These estimates did not include work conducted in preceding research grants. We also set out a programme of joint work with IHTSDO on archetypes and terminology, for which external funding is now needed. I have started work, with the Chairman of IHTSDO, on a bid to the European Commission, whereby we hope to be able to get support for this clinically focussed work in Europe, working in partnership with EuroRec.

There is now a great deal of interest in openEHR, including ever increasing commercial interest, some obvious and other interest only visible through web site analytics! The interest being shown is important, in our view, as wide-scale commercial uptake is an absolutely crucial vector of the wider adoption and dissemination of openEHR. Commercial, or should I say monetised collaboration, will be essential if we are to raise the money that we estimate a scaled up openEHR organisation will need to keep itself moving forward over the next five years.

An issue we have thus started to explore is the right relationship with future potential commercial funding streams, to make the essentially clinically-driven mission of the Foundation sustainable and scalable, over time. In my experience, this has been a quite well-understood, natural and common process, in building those charitable and not-for-profit organisations, like openEHR, with which I have been closely involved.

Last month, we held a meeting seeking wide-ranging advice from companies already working with the openEHR specifications and from government, professional and academic stakeholders, here in London. We decided to begin this process face-to-face with key stakeholders to help us formulate a plan for the future and we posed a key question to this group, about our future commercial interface.

How should openEHR’s twin goals be reconciled?

• Support governance and quality assurance of record content.
• Promote commercially sustainable uptake of openEHR, in healthcare products and services.

To introduce the discussion, the core team of openEHR and people representing  companies with emerging commercial products based on openEHR IP gave short briefing presentations and there was then a focused discussion of the question posed. We will be posting the collated slide presentations and a short account of the meeting on the web site, shortly.

In closing, I want to reaffirm my personal and institutional commitment to openEHR, hoping thereby to reassure those expressing, and any experiencing concerns. They are right to express them and we need everyone’s help, as always, to get the next stages right. The initial configuration of the Foundation was clearly only ever viable as a transitional arrangement, as we explored whether the openEHR specifications could grow legs. They now clearly have done so. I am the first, therefore, to welcome and seek ways for these legs to walk away from me, now, with a better, newer head in command. It seems to me that we have probably got about as far as we can with the Foundation as a vehicle to accelerate progress and maintain agility through the several early releases of the specifications and to create engaged clinical communities in archetype development.

Also, I reaffirm my view that new governance is needed for the stage of development now reached, where a number of individuals and companies are beginning to trade successfully in providing, consulting on or otherwise supporting applications built on top of the openEHR specifications. The Foundation has a duty to work with them all, as well as with many others, to clarify ambiguities that are perceived in the way openEHR presents itself to the world and to implement and prioritise change. Many are studying and assessing openEHR, assiduously - up to 60,000 visits to the web site per month, over the past year.

Finally, to those interested and stoic enough to have read thus far (Sam maintains that most will have stopped reading at the end of the second paragraph, and he may well be right!), I should say, for the record, that it is my intention to relinquish my current position as Chairman of openEHR not later than September 30th 2011, when I officially retire from UCL. In the period until then, my priority and that of UCL will be to work with IHTSDO, EuroRec, and many new partners, to hand on what the Foundation has helped to nurture, into a suitable new and sustainable form of governance, properly reflecting all contributions and interests.

I shall look forward to an event within the next year when the now world-wide community of openEHR innovators and implementers can come together to debate and deliberate its shape and form for the future. Reading the discussion about location, I suggest a world cruise, by the way!

Happy Christmas. My determined resolution for the New Year is to do all I can towards key decisions needed on the future form, direction, alliances, funding and governance of the Foundation, during 2010 - and practical steps in their implementation of course.

David Ingram
December 12 2009