Kelsey admits care.data use unclear

NHS England delayed the care.data programme because it could not give guarantees on how the data would be used, NHS England’s director of patients and information has said.

Speaking at HC2014 in Manchester today, Tim Kelsey said that a reason for delaying the controversial programme, which will extract data from GP practices to form a national database of patient information, was because there was no legislation to prevent the data being sold for commercial reasons.

“We got caught in a very healthy debate about the guarantees we were offering the public about the safety of their data,” said Kelsey.

“Not so much that the public don’t recognise the risks of living in a digital world where hackers exist and where jigsaw identification is a possibility, but actually; could we guarantee that this data would be used for the purposes of improving healthcare?

“One of the reasons why we chose to delay the programme was so we could have more time to have these conversations as it turned out we could not give those guarantees.”

Originally planned to begin this month, care.data extractions have been delayed until the autumn and health secretary Jeremy Hunt has announced that he will legislate to prevent the Health and Social Care Information Centre from selling data for commercial use by insurers and other companies.

The amendments to the Care Bill say that information can only be released if the HSCIC “considers that disseminating the information would be for the purposes of the provision of health and social care.”

Kelsey said that he hopes this will alleviate public fear on how their data will be used.

“Recently we’ve had legislation tabled in the Commons which does provide that statutory guarantee. I think this is a turning point for a different kind of contract between us and the citizens of this country, about a proper shared understanding of benefits and risk of data sharing on the one hand and guarantees about what the use of the data will be on the other,” he said.

“Care.data is the beginnings of something that without, we won’t have a health service for much longer.”

In order to regain “public faith” in the care.data programme, the HSCIC will also publish a report on detailing all the data it is releasing, and the legal basis on which it is being released, by 2 April.

In a recent Freedom of Information response questioning a statement on the HSCIC website saying that the use of care.data for insurance purposes “will remain, strictly illegal”, the HSCIC acknowledged that it is “not prohibited by legislation from providing data to insurance companies specifically.

“But it is empowered to apply discretion as to who information is provided to, based on the purpose for which the data has been requested and the interests of the health service in England,” the response says.

The wording on the website has since been changed to say the use of care.data for insurance purposes will remain, “strictly prohibited”.

The information centre was also asked to confirm whether any insurance providers had been given access to any data already.

"We are unable to state whether any organisations we have provided data to are providers of insurance since this is not a question asked when an application is submitted,” the FOI response says.