Concerns raised over privacy and security aspects of Care.data have been dismissed as “scare stories” by NHS chief data officer Geraint Lewis.
“A lot of it [media coverage] unfortunately was not based on truth. There were lots of scare stories being run that the data would be used for insurance purposes,” he said at a techUK event this week.
The scheme, which will extract individuals’ medical records from GP practices, was recently relaunched with 104 surgeries expected to have implemented it by the end of this year.
Lewis said the purpose of the initiative was to improve the ‘richness’ of the data the NHS holds and plug information gaps covering happens to patients before and after hospital visits.
Hospital data have been recorded in the national ‘Hospital Episode Statistics’ database since the 1980s.
“By definition it only captures hospital episode statistics, and we all know that the context in which the patient is living is crucially important: what led up to that hospital admission and what occurred afterwards,” he said.
However Lewis refused to provide any timescales for when the scheme is supposed to be up and running. He insisted it was important not to commit to “artificial deadlines”.
Lewis acknowledged one problem with the programme: the NHS is currently effectively ignoring the wishes of about 700,000 people who have already opted out of Care.data. Last month MPs were told it is “unable to implement or respect those objections”.
The main issue is that the way objections are coded is “very complicated”, Lewis said, with about 350 different codes across the country and variations in how objections are processed locally.
The Health and Social Care Information Centre has appointed clinical expert Professor Martin Severs to try to resolve the issue, he said.
Care.data has been beset by numerous controversies since it launched in May 2013. Whitehall watchdog the Major Projects Authority warned the programme is ‘unachievable’ and should have its future ‘reassessed’ in its latest annual report, released last month.
Care.data was supposed to be in all 8,000 GP practices by 2014 but it was delayed after a botched public awareness campaign and numerous concerns from GP, privacy and patient groups.
NHS England sent out 22 million leaflets but as many as two-thirds of the public did not see them, polls found.
There were also concerns over who would have access to the (mainly anonymised) medical records; with suggestions (strongly denied by NHS England) it could be shared with private companies.