Disintegrating records but aggregating data

Peter Knight and Prof. Dennis Protti spoke last night at City University, the event being the annual Open Evening of City’s Centre for Health Informatics. Dennis Protti, who lives and works in Canada, is a big name internationally in health informatics, and especially known for international comparisons of national strategies (see this for example).

Protti’s talk focussed on the idea of the single patient record. One patient, one record. So when you go to your GP, he or she has access to information about any stay in hospital, A&E visit or outpatient consultation, and when you go to hospital, the doctor there can see everything previously recorded about you by your GP.

This kind of integration has been focus of a lot of work health informatics for a long, long time. Decades. And there has been an awful lot of talk about how to achieve it: is the data to be pushed or pulled, collected together instantly or available if required, what kind of architecture would support this, what standards are required, can we make some magic Babelfish middleware to allow all the systems to understand each other?

In the NHS we’ve had at least two iterations through national strategies incorporating this idea. The first (circa 1998) had limited ambitions in this direction, with the focus being on integration within local communities. The final verdict on that strategy as a whole was that it didn’t offer much to help chief executives meet their more pressing priorities. So the money the centre had intended would be spent on IT somehow seemed to get spent on reducing waiting times, meeting quality targets, improving star ratings etc. The next national strategy (NPfIT) did have major ambitions in this direction: an explicit commitment to create a Summary Care Record for everyone. And that hasn’t happened either, but that’s a much longer story than we have time for here, and wasn’t really part of last night’s talk.

What was in the lecture was a review of six or so jurisdictions where this integration has been achieved: Hong Kong, Jordan, a Swedish county, a Spanish region, the U.S. Veteran’s Administration and, again in the U.S., Kaiser Permanente. They are all pretty small scale (max. 8 million patients). They all seem to have been achieved on the back of political ambition and organisational support, often as part of a wider drive to improve healthcare rather than through an initiative focused on IT. Technology doesn’t seem to be the problem.

Some in the audience wondered whether achieving this integration is really what we should be worrying about. I wonder that too. Interesting, then, that Peter Knight’s talk on the Research Capability Programme was all about record linkage. Record linkage? That’s connecting data items, and it is being done here to allow routinely collected patient data to be used e.g. by pharmaceutical companies in drug trials. I think that this is a great project. But I’m conscious that my sense of the risks and benefits is conditioned by a professional self-interest not my views as a citizen or a patient. I was intrigued though, by the juxtaposition of the two talks. We’re pushing ahead with ‘Record Linkage’ but stalling on the ‘Integrated Care Record’. As though, as a society, we’re happy to allow government agencies to associate data about treatment we receive from X with data about outcomes measured later by Y, but we don’t want the A&E doctor to know that our GP thinks we’re allergic to penicillin.