Editorial: NHS England must argue for care.data

The research benefits of a national database of information pulled from GP records are immense.

In the past five months, two GP analysis pieces have looked at care.data. Both are available on our website, GPonline.com ('Making GP data count', 14 October 2013, and 'Should GPs fear sharing NHS data?', 20 January).

In this issue, our analysis piece looks at why NHS England (NHSE) postponed the extraction of data until the autumn and what this means for GPs.

Our blogger Dr Chris Lancelot has brought his insight to the unfolding mess and you can find his latest two blogs ('Care.data dead in water unless NHS England makes major changes' and 'What NHS England and HSCIC need to do for care.data to fulfil its potential') also on GPonline.com

GP doesn't go quite as far as the five action points required by Dr Lancelot. But we do think NHSE and the Health and Social Care Information Centre need to undertake a complete, open public awareness campaign which specifically includes care.data's potential risks, and to pseudonymise or anonymise all data before it leaves GP practices.

What is remarkable about the communication debacle is that NHSE has consistently failed to make the obvious argument for change. Why do we need care.data at all?

Surveys have shown that fewer than a third of householders across the country have seen the leaflet explaining care.data.

A Freedom of Information Act answer from NHSE revealed that it failed to include households that had opted not to receive junk mail in the leaflet drop, excluding some 200,000 addresses.

Appearing to withhold such important information from the public inevitably achieves little but the fuelling of conspiracy theories. Couple this with the coalition government's enthusiasm for privatising what is currently public and there are, understandably, some real fears.

NHSE has made the right decision to postpone the implementation of the care.data programme. The lesson it must learn from this breakdown in communication is that failure to inform or engage patients is unforgivable. It now has six months to make the case for care.data change.

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