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Government pulls plug on care.data programme

Data sharing project dogged by controversy from the start

Caroline White

Thursday, 07 July 2016

The government has pulled the plug on its controversial care.data programme, which aimed to link up medical information about treatment and care from different NHS providers in a bid to create a seamless and timeless medical record for patients, clinicians, and commissioners alike.

But concerns about security and eligibility for third party access dogged the project from the start and provoked a storm of protest from patient groups and GPs. And the initiative was shelved in February 2014, shortly before it was due to go live.

On the back of the report from the National Data Guardian, Dame Fiona Caldicott on safeguarding patient data, which was published yesterday, life sciences minister George Freeman issued a statement to MPs, announcing that the care.data programme would be scrapped.

Amid a raft of proposals, Dame Fiona had recommended that the government consider care.data’s future as the consent and opt-out option she proposed went further than the approach that was planned for care.data and its pathfinder [pilot] areas, he explained.

“In light of Dame Fiona’s recommendations, NHS England has taken the decision to close the care.data programme,” he said.

But he insisted: “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.”

He continued: “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.”

He added that the Dame Fiona’s review had emphasised the importance of protecting anonymised data to give the public the assurances they need that they will not be re-identified.

“I can confirm today that the government is supportive of the introduction of stronger criminal sanctions against those who use anonymised data to re-identify individuals,” he said.

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