I have been working in Health Informatics my entire career as a doctor and I plan to see interoperable health records somewhere in the world before I retire (don't worry I have more than 10 years to go). Where to concentrate my time? Australia? It may well take some time to recover from the past 5 years. The UK are trying much harder, but the environment is hostile and legalistic and only those companies with massive purses or undue cunning are surviving (actually these features are necessary but not sufficient). Denmark and Sweden are taking up the archetype approach of the new ISO standard much championed by my close colleague Dipak Kalra, who like me, has been very involved in developing the openEHR specifications. Other countries are, like Australia, betting on HL7 CDA and IHE for access. Actually, we need messages, stand-alone documents and service protocols. And, it is now being realised, standard expression of clinical content. This is something that openEHR is good at but it is not clear that it is necessary until people really start to share information. It is interesting that openEHR, with its development largely in Australia, began to be taken seriously in countries like the UK and the Netherlands who had already embraced HL7 version 3 and CDA.
There are two broad visions of the e-health future which people now embrace.
1. A world where every vendor goes out and builds a system just how they want and makes it do everything that their users want. "Nothing should get in the way of that". Other users and patients can then get access to this information and share it via messages. "Just tell us what you want and we will give it to you". Vendors and clinicians spend years configuring these systems: all unique and each working with a variety of messages that are sent in the local environment.
2. A world where there is a standard format for personal health information and a standard service interface for reading and writing that information. How personal health information is actually stored behind the service is up to the vendor of that EHR service. There will be bells and whistles to go with each flavour. Application vendors will write their applications based on the standard EHR and configuration will be done in a collaborative and cooperative space. Hospitals and even general practices (if they wish) will be able to have their records independent of any clinical application.
Patients will too! Clinicians take a key role in determining what content is required and how it may be structured effectively and efficiently to 'boost' their performance. At times data to be collected will be for the person's long term benefit, such as determination of risk of stroke or other preventable catastrophe. At other times it will be structured to ensure the best possible outcome for the patient, such as an emergency presentation of chest pain.
I have chosen to work on the second approach since 1986. Why am I working on this when the first is the massively dominant approach at the moment? The answer is: because I believe it will get their first. "How?" you might ask. Simply because the first approach cannot deliver. Imagine if we worked in a world with 1000s of word processor applications - actually 100,000s - which did whatever you needed to allow you to write things that were important to you in just the way you wanted. And then each vendor could get together and agree how to use XML or other standards to get the paragraphs about your family, those about your medication, or those with pictures so you could share them with colleagues doing the same sort of work. Each of these messages would be specific to that type of information and ideal for exchanging these. We could even have special messages for sending information about more complex grouping of these - which could be slightly different if required in different jurisdictions. Does it sound plausible? Well, if you consider the complexity of health information compared to word processing documents, then you begin to realise why it is not attractive to me.
So where to start? The first problem is to agree what is needed clinically, how to allow structure and narrative to coexist in a manner that helps clinicians find relevant information. To do this we must be sure that the critical things that computers need to provide the functionality we seek are done in the same manner throughout. The rest, in openEHR, is in the Archetypes: the clinical statements of what is to be recorded and how it may be structured. These statements are formal and can be used, in the first instance, to provide Vendors in our current setting with a very helpful indication of what is required and what will be shared. Ian McNicoll has discovered in his work with clinicians in the UK NHS that they are very good at saying what they don't want but find it much more difficult to say what they do want. The 'maximal dataset' archetypes provide the starting point. The sponsors for specifying content are jurisdictions and the international clinical community.
What is next? Well, hospitals and jurisdictions can now choose to hold their records in a standard format; not just an exchange but at the heart of their system. Their purchasing then requires applications to read and write to their records, just like a locum clinician will be expected to use the clinic record system. But now they can bring in an intensive care application that suits, the ophthalmologists can use their own application with all the features they require and the gastroenterological researcher can even collect their research data in the clinical environment (after all 95% of it is straightforward clinical data). So far this has only happened twice, but this year it looks like a more will take the step. After all, if we are to have any progress in any field we need early adopters. If the collective 'configuration' is available through shared sets of clinical archetypes then vendors can choose to build their product on a standardised EHR. The benefit is that all the transformations required can be cooperatively determined with shared tools and the evolution of the information is not their responsibility. There are now 3 clinical application vendors doing this in Australia and 2 in the Netherlands. These applications then become the choices for the hospitals and others with standardised health records.
It will take a while before the real benefits are obvious. It will, after all, be like having Microsoft Word files - even if you use Open Office or whatever. Australia was on the brink of taking this route - 'common sense' pulled us back. With Denmark and Sweden now joining the UK and pursuing this path and changes at the helm at many levels in Australia, it might be time to look over the precipice again. It feels safer when you jump with others.
Declared interest:
Director of the openEHR Foundation
CEO of Ocean Informatics who make a living supporting the uptake of openEHR.
----- End Commentary.
All I can say is Sam is a very patient man – as I must be - given I started at this in 1984. I see this as a bit of a ‘cri de coeur’ (sic).
Enjoy and please comment.
David.
