NHS care.data records still being shared with third parties due to Department of Health delays

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Image: Flickr Creative Commons/NHS Confederation

Years since the NHS Care.Data programme was scrapped, one million people still have not had their details opted out - despite the system being ready to go - Computerworld UK understands.

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The Department of Health has still not signed off a system that would finally opt out NHS patients from having their data shared with third parties, Computerworld UK understands. (See also: what is a graph database?)

Several years ago, the Health and Social Care Information Centre (HSCIC) took on the task of designing a system to recognise and opt out the one million people who objected to the NHS care.data record-sharing programme. 

Computerworld UK understands that HSCIC now knows exactly who has opted out. And it has a working system that can action those opt-outs – but the Department of Health (DH) has delayed in signing this off.

As a result, one million people are still having their data shared to third parties, even though the technical means to stop this has existed since January this year.

A copy of the register for shared data is available on the HSCIC website, here. The most recently published register covers the months up to the end of 2015.

Data has been released to companies including American healthcare provider IMS Health and HR software company Northgate Information Solutions, as well as universities like Leeds and Imperial College London.

A spokesperson for the DH, however, told Computerworld UK that patients who have made a “‘Type 2’ objection” – requesting their data not be passed on – have “never had their data sold”. 

HSCIC has “developed a system to implement ‘Type 2’ patient objections, and is finalising the process to put this in place,” the spokesperson added.

But minutes from a 27 January HSCIC board meeting show that not only is the implementation yet to take place, but it was the secretary of state for the DH – Jeremy Hunt – who had delayed it.

And the fact that the objections have still not been enacted suggests a contradiction of the Department’s claim that data has not been passed on. CWUK is awaiting further clarification from the DH.

One person familiar with the matter suggested that the delays are because it is not politically conducive to make noise while the Department is locked in its battle over the junior doctors’ contract.

An HSCIC spokesperson said: “Dame Fiona Caldicott's independent review into consent and opt-outs will be published soon.

“The HSCIC will implement the outstanding type 2 objections in due course.”

Caldicott's review into NHS patient data standards was previously expected some time in February, and is now expected to be published this April. The minutes suggest the Department may be waiting for the Caldicott recommendations before it proceeds with signing off HSCIC’s system.

A spokesperson from the Information Commissioner’s Office confirmed to Computerworld UK that it is still consulting with HSCIC over patient data.

“It is now two years and 53 days since the care.data programme was suspended, and the government has admitted that patient opt outs are still being ignored,” said Phil Booth, director at medical privacy group MedConfidential.

“HSCIC’s published documents show they completed the system back in January. What is Jeremy Hunt waiting for before telling them to turn it on?”

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