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Government puts care.data scheme on hold

GP data sharing scheme delayed by six months

Adrian O'Dowd

Wednesday, 19 February 2014

The controversial care.data scheme, which will share largely anonymised GP patient records, has been put on hold by the government for six months.

NHS England has announced that it will delay the beginning of the scheme to collect data from GP practices from April until the autumn.

The decision, welcomed by the RCGP, BMA and Healthwatch England, follows concerns raised by those organisations that the public was not sufficiently aware of the scheme and its implications while many GPs were still uncertain about the safeguards around the scheme.

Under the scheme, patient records will be collected from GP practices, linked to hospital records and used to create a national patients’ records database that NHS England says will be used to inform commissioning, evaluate diseases and new treatments, while also helping charities, think tanks and universities with research.

Private firms will be able to apply to use it, for a fee, but NHS England has stressed that the Health and Social Care Information Centre is legally prohibited from making a profit from providing data and it would be unlawful for it to make confidential data available for the purposes of selling any kind of insurance or for marketing purposes.

NHS England said that recent concerns raised had made it clear that patients needed more time to learn about information sharing, the benefits and their right to object.

It is therefore delaying the collection of data from GP surgeries from April to the autumn to allow more time to build understanding of the benefits of using the information, what safeguards are in place, and how people can opt out if they chose to.

Work will also take place with patients and groups such as the BMA and the RCGP to develop additional practical steps to promote awareness with patients and the public and to ensure information is accessible.

A small number of GP practices will also test the quality of the data.

Tim Kelsey, national director for patients and information at NHS England, said: “NHS England exists for patients and we are determined to listen to what they tell us.  We have been told very clearly that patients need more time to learn about the benefits of sharing information and their right to object to their information being shared. That is why we are extending the public awareness campaign by an extra six months.”

Professor Nigel Mathers, honorary secretary of the RCGP, said: “The extra time will provide it with the chance to redouble its efforts to inform every patient of their right to opt out, every GP of how the programme will work, and the nation of what robust safeguards will be in place to protect the security of people's data.”

However, the college called on NHS England to use the extra six months to assure the public and GPs that it would address the college’s six requested guarantees set out in an urgent letter sent to NHS England yesterday.

In the letter, Professor Mathers called for clarification of the purposes for which “amber” (pseudonymised but potentially identifiable data) could be disclosed.

Dr Chaand Nagpaul, chair of the BMA’s GP committee, said: “We are pleased that NHS England has listened to the concerns of the BMA and that the decision has been taken to delay the roll out of extractions to care.data until the autumn.

“With just weeks to go until the uploading of patient data was scheduled to begin, it was clear from GPs on the ground that patients remain inadequately informed about the implications of care.data.”

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