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07.07.16

NHS England to close care.data programme following Caldicott Review

The much-criticised care.data programme is to be closed down following the publication of a new report saying the NHS must improve its data handling standards.

The NHS announced that the scheme to store all patient data on a single database would be cancelled following the publication of a long-awaited review from Dame Fiona Caldicott, the National Data Guardian (NDG).

In her report, Dame Fiona said that the NHS has made little process in data safeguarding since 2013 and should follow the same standards as the financial sector. She also said that the case for data sharing “still needs to be made to the public” and there should be an opt-out model for patients’ consent to having their data shared for purposes beyond direct care.

Dame Fiona’s Review was not asked to look at the care.data programme, although she noted the pathfinder areas have been involved in shaping and testing the proposed consent/opt-out model, as have vanguards and health and social care integration pioneers.

The report added that the consent and opt-out models proposed by the Review go further than the approach that was planned for the pathfinder areas, and “should replace the approach that had been developed for those areas”.

In the light of the Review, Dame Fiona added that the government should “consider the future of the care.data programme”.

In response, NHS England said: “In light of Dame Fiona’s recommendations, NHS England has taken the decision to close the care.data programme. However, the government and the health and care system remain absolutely committed to realising the benefits of sharing information, as an essential part of improving outcomes for patients.

“Therefore this work will now be taken forward by the National Information Board, in close collaboration with the primary care community, in order to retain public confidence and to drive better care for patients.”

The care.data programme was halted in 2014, with MPs warning about a lack of public trust in the programme.

In response to the publication of Dame Fiona’s report, alongside a report into NSH data guarding from the CQC, George Freeman, the minister for life sciences, said that he was opening a consultation into Dame Fiona’s recommendations for an opt-out model and 10 new data security standards.

He also published the results of a consultation into the role of the National Data Guardian (NDG), which concluded that organisations should be required to show how they have responded to the NDG’s advice, but the NDG should not have the power to issue sanctions.

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