U.K. overrun by requests to opt out of health data sharing program

The United Kingdom's botched and aborted attempt to share certain patient healthcare data with drug developers and other groups has triggered another controversy. Officials responsible for sharing the data have admitted they are unable to handle the 700,000 requests by patients to opt out of the program.

HSCIC's Kingsley Manning

Representatives of the Health and Social Care Information Centre (HSCIC)--the body tasked with releasing National Health Service (NHS) data to third parties--have attributed their inability to process the opt-out requests to a lack of resources. The body was never prepared to handle such a large-scale rejection of data sharing by patients. And to compound the situation, HSCIC has run into technical difficulties when attempting to log the opt-outs.

"Basically it's a mess," Dr. Beth McCarron-Nash, head of care data at the General Practitioners Committee (GPC), told health journal Pulse. HSCIC chair Kingsley Manning told politicians earlier this year it "may take some time" to clear up the situation. "Obviously, if there are technical difficulties that HSCIC are experiencing they must be resolved, and it is their responsibility to make sure patients are protected," McCarron-Nash said.

The flood of opt-outs were prompted by attempts to broaden the sharing of NHS data to include records held by general practitioners. Such family health records are viewed by many as being more personal and private than other information and HSCIC struggled to allay concerns about who could access the information and how it could be used. Events since then have validated some of the fears.

"Because the codes have not been extracted, HSCIC has no way to know whose data to prevent passing on to its customers. Unfortunately at this point no-one, including HSCIC itself, can tell you if your data has been released," campaign group medConfidential wrote on its website.

- read the AP article
- here's Pulse's coverage

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