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Politicians pile pressure on England’s patient-data scheme

A scheme to combine English medical records in a huge database that could be exploited by researchers came under fire in a UK Parliamentary hearing yesterday.

Care.data is designed to create a central database of England’s medical records, which are now held locally at the offices of general practitioners (GPs, or family physicians). As well as allowing better planning and management of the UK National Health Service (NHS), the data would also eventually be available to researchers.

The scheme was strongly backed by an array of UK medical research charities. But there have been complaints from privacy campaigners and other groups that patients have not received enough information about the scheme, and how they can opt out. Last week these concerns led to the scheme being delayed by six months.

Sharmila Nebhrajani, chief executive of the London-based Association of Medical Research Charities, which has previously supported the project, said at yesterday’s hearing that it was still unclear who exactly could have access to the data being collected, and on what basis this access would be granted. Care.data, she said, could be “a really valuable asset” to research, “but it is being stymied by its execution”.

“We are really in danger of throwing this baby out with this rather grubby bathwater,” she told the health select committee during the hearing.

But Barbara Keeley, a Labour party member of parliament and a member of the committee, said that it was a “waste of time” to be extolling the benefits of the system when there were so many concerns about privacy and security. “I think most patients should be scared to death of the mess that this is,” she said.

Daniel Poulter, the health minister responsible for care.data, and Tim Kelsey, the man in charge of the scheme at NHS England, insisted that most of the problems were down to communication and public perception. But Sarah Wollaston, a GP and Conservative party member of the committee, said it was “very disappointing” that those behind the scheme were trying to present the problems as “some kind of communication issue”, when numerous witnesses to the hearing had already outlined more serious concerns, including data security and consent.

Chand Nagpaul, chair of the GP committee of the London-based British Medical Association — a powerful trade union for doctors — also added to criticism of the scheme. He told the committee that any potential benefits were currently lost in the “fundamental problem” of lack of confidence among both patients and doctors about the scheme. He warned that care.data could even damage health, as some patients might be so worried about what would happen to their data that they could withhold information from their doctors.

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