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The government's controversial care.data NHS information sharing scheme has been closed.

The decision, announced by minister for life sciences George Freeman, follows a review into safeguards around the sharing of patient data by National Data Guardian Fiona Caldicott.


Though care.data has been closed, Freeman said NHS England and the government "remain absolutely committed to realising the benefits of sharing information" to improve patient care.

First announced in 2013, the NHS England programme aimed to bring together health and social care information from across the NHS for the benefit of "patient care". The pseudonymous data could then be used by researchers to develop new treatments and assess performance of NHS services.

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The beleaguered scheme faced almost relentless criticism since it was first announced three years ago. Concerns centred around the sharing of sensitive medical information with commercial companies without the explicit consent of patients. More than one million people opted out of the scheme.

Data on stays in NHS hospitals, known as hospital episode statistics, have been collected and analysed since 1989, but care.data proposed an expansion of this database to include GPs. Critics argued NHS England failed to communicate the purpose of the scheme.


Care.data was plagued by delays and controversies throughout its ill-fated existence. It was paused three times before eventually starting as a small-scale trial in four areas in June 2015, only for health secretary Jeremy Hunt to pause it again while Caldicott's review tok place.

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While the review didn't look into care.data specifically, its recommendations around proposed consent and opt-out models effectively killed-off the project.

Commenting on the report's findings, Professor Sheila Bird at Strathclyde University’s Department of Mathematics and Statistics said: "Data-sharing as proposed by care.data was disastrously incompetent – both ethically and technically. Professionals rebelled and prevailed in outcasting care.data, thereby ensuring that future proposals will not succeed unless both technically proficient and in the public interest."

"We will only unlock the immense value of patient data if we have open and honest discussions about how and why data can be used for care and research, what’s allowed and not allowed, and how personal information is safeguarded," added Dr Jeremy Farrar, director of The Wellcome Trust.


The news of care.data's demise comes just days after the NHS announced a second data-sharing project with Google-owned DeepMind. The agreement will allow DeepMind to train its artificial intelligence to spot diseases using one million anonymised eye scans from Moorfields Eye Hospital.

A similar deal between DeepMind and the Royal Free, Barnet and Chase Farm hospitals covering the past five years and continuing until 2017 was uncovered in May. The purpose of this data-sharing scheme, according to Google, is to develop a medical app to notify doctors if someone is at risk of developing acute kidney injury.

Current rules allow for such data to be shared so long as it is anonymised and being used on ethically approved projects, though this is not the case in DeepMind's agreement with the Royal Free, which still contains personal information. Patients can opt out of either DeepMind scheme by emailing the relevant Trust's data protection officer.