It then chooses and sticks firmly (over 80 times) with a term like the ‘national opt-out’. The government response acknowledges (in a footnote) how important it is to be using the right words and making things absolutely clear to the public. If we try to ‘phase’ the two, we will only be priming decisions about the second type of sharing, whichever it happens to be, through discussions and decisions about the first type of sharing. using data for ‘individual care’ (terminology recommended by the Wellcome Trust’s Understanding Patient Data initiative) 4 we will only be compounding the confusion. If we do not specifically address the similarities and differences between using data for ‘improving health, care and services through research and planning’ vs. This is partly due to the (unfortunate) use of identical terms, and partly because there are many grey zones between the two. It also needs to be there because the two debates are inextricably linked. It happens far less frequently than most of the public believe and expect.ĭata sharing for individual care needs to return to the centre stage of the data-sharing debate so that appropriate action can follow. Yet it is extraordinarily difficult practically, as any GP would testify. Why, then, has data sharing for individual care almost disappeared from recent reports? Most likely it is because there is broad agreement that it is a good thing, thus appearing less ethically and legally problematic. They do not need to repeat information ‘like a parrot all the time’ (a patient’s words) and they can trust that their doctor will have the information they need to make the best decision possible. In contrast, the relief of a patient is far more certain, present, and personal if they feel known to services. Service improvements and research breakthroughs are an uncertain possibility for the future, and it is often somebody else’s future (and we acknowledge this as researchers). Yet it is a far greater priority for most patients and health professionals. The latter is practically omitted from the government’s action plan, with the exception of commissioning a review on it. The response, and to a large extent the NDG’s review, have become about data sharing for service improvement and research as opposed to data sharing for direct patient care. It goes back to front relative to patient priorities
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