Careless.data

Nature has published an editorial on care.data, including some reflections on public confidence in the project:

On 19 February, the NHS, which had stubbornly dismissed such criticisms, reluctantly admitted that its critics might have a point, and postponed the launch until the autumn. But the agency still seems to be in denial, arguing that opposition is merely down to problems of communication and public perception. That response is wrong. Care.data is far from ready for launch.

Incredibly, with just a few weeks to go to the scheduled launch, the NHS had not even laid out in detail which groups would be able to access the data, and on what terms. Thus, the public could not fully know what they were signing up to, raising fears that personal data might end up, for example, in the hands of insurance and other commercial companies. Economic growth is a core goal of any UK government, but there has to be confidence that this won’t trample on the rights of individuals.

Adding to the mess, over the past week it has emerged that the Leeds centre has handed over records from its existing massive database of personal hospital data to outside groups in ways that might have contravened its own rules. At the very least, these episodes raise questions about the functioning of the HSCIC, but they also risk diminishing what little public confidence is left in care.data.

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