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Cross talk - Pioneers


Originally published on the Microsoft NHS Resource Centre on 16 February 2011

The best bit of my job? Easy. It's the time I spend in consulting rooms, at nursing stations or trudging down endless NHS corridors with clinicians who are making a difference with IT. Against all the odds - the workload, the bureaucracy, the cynicism of colleagues - they do exist, and do transform things for the better.

This uplifting experience often comes with two nagging doubts, however. First, that the innovation I'm being shown has become an end in itself, and the patient (sometimes actually present, groaning on a trolley as the doc enthuses about the new gizmo) is being forgotten. Secondly, that the innovation will be piloted, prove successful, but then fizzle out when funding dries up, key people move on or an administrative reorganisation puts everything back to square one.

No such doubts surfaced three years back, when I visited Dr Amir Hannan, the greater Manchester GP who was one of the pioneers of encouraging patients to access their electronic medical records. It was fairly obvious that this was an innovation that was being implemented for the patient, not despite them, and that Dr Hannan and his colleagues were in for the long haul.

I was delighted, then, when the practice, Haughton Thornley Medical Centres, recently announced that its thousandth patient had signed up to access their records on the web after completing the required training process. That's 8% of the total, a figure that seems to demolish sceptics who maintain that patients who are interested in their records represent only a tiny, affluent, IT-literate section of the population.

I was also delighted to see the NHS Information Revolution consultation citing patient access to records as the way of the future.

There's still an extraordinary amount of scepticism around, however. We saw some of it in the BMA's response to the information revolution document, which came perilously close to arguing that lay people would not be able to cope with the subtleties of medical communication. Now the BCS, the professional institute for IT, has chipped in with a battery of concerns. Its hefty 50-page contribution to the debate says that "Patients need to be aware of the potential dangers of sharing an out-of-date copy of their record with other clinicians caring for them... Guidance is required for patients and care professionals on the safe handling of their data." It also warns of concerns about "coercive access by partners, parents, employers and so on".

All these and more will be seized upon by those who, for whatever reason, don't want NHS patients to have free access to data that relates to them in the most personal way possible.

So it's important to point out that the BCS does come out in favour of record access, albeit after "further work is carried out to understand what patients want and expect" and after "guidance is put in place".

With all respect to the BCS, I think we know what patients want and expect. When inspired by a passionate advocate like Dr Hannan, nearly 10% want access to their records and are prepared to invest in a significant training commitment to benefit from the experience. My guess is that, in a couple of years time, a significant number of practices will be replicating the experience.

With this in mind, it's time for the debate to move on. We need to stop talking about whether patients should have electronic access to their records, but what will happen when they do. Of course there are potential problems of comprehension, confidentiality and consent, but it's arrogant to imagine that these aren't already being tackled to the satisfaction of patients and the professional standards of clinicians. We need to spend less time producing 50-page responses to consultations and more talking to and learning from our existing pioneers. As someone once said, the future is already here - it's just not evenly distributed yet.