Care.data scheme due to restart despite ongoing privacy concerns

Pilots pencil summer launch dates in diary, but HSCIC says it lacks resources to process lots of opt-outs

The NHS's controversial data collection programme, care.data, is set to restart this month with the launch of one of its four pilot schemes.

One of the government's key "pathfinder" trial areas, Blackburn with Darwen, will begin rolling out the programme to dozens of practices, starting by giving patients an opt-out option by the end of June.

With three other pathfinder areas, a combined 104 surgeries will test the NHS initiative to build a database of anonymised patient data consisting of medical records.

Pathfinders Somerset and Hampshire aim to start by the beginning of September, while Leeds hasn't confirmed a start date, but would also like to begin in September.

The restart follows the 50 million scheme's roll-out being paused in February 2014 due to a lack of proper public consultation.

Care.data would see people's health records connected to the Health and Social Care Information Centre (HSCIC), allowing for information to be shared between GP surgeries as well as hospitals.

But a report released last December by the All Party Parliamentary Group for Patient and Public Involvement in Health and Social Care said that concerns remain over the collection of private information.

And fears won't be eased by the revelation earlier this week that 700,000 people who chose to opt out of sharing their data with third-parties by HSCIC back in 2014 were ignored.

Occurring before the official pause of the care.data roll-out, HSCIC admitted it didn't have the necessary resources or processes to handle the volume of objections received, and so the data was passed on to insurers and private companies regardless of the opt-out decisions.

Liberal Democrat peer Baroness Ludford said in the House of Commons last week: "The admission was made that 700,000 people have objected to such data sharing, but the centre says that it is unable to implement or respect those objections.

"Will [the government] invite the Information Commissioner to investigate this worrying situation, which is undermining patient trust in NHS data sharing, to the detriment of legitimate uses for such data sharing?"

With the news sparking fresh concerns over privacy, campaign group medConfidential claimed such issues must be addressed before care.data can continue its roll-out.

Phil Booth, co-ordinator of medConfidential, said: "It beggars belief that care.data should be restarted before the serious outstanding problems with the scheme have been fixed.

"What are the million patients who opted out last year supposed to think? NHS England must make good on every opt-out, and demonstrate that every last promise and safeguard is in place."

National director for patients and information at NHS England, Tim Kelsey, argued that patient data collection was a moral duty at an event in January.

"There are gaps so big, so dangerous, that they just have to be filled from a moral as well as a political perspective. We're going to be doing that this year," he said.

"The NHS is not capable currently of telling you how many patients are treated for chemotherapy, for example. And certainly not capable of telling you that if they are treated, [then] what is their outcome."

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