The NHS’s new data platform could be derailed by a lack of public trust because patients are being denied the chance to opt out of it sharing their personal medical records, campaigners claim.
NHS England will announce on Tuesday that it is handing the £480m contract to operate the new software to the US spy tech firm Palantir, sparking a backlash over privacy and its “murky” past.
But the announcement has been overshadowed by warnings from MPs, doctors and privacy campaigners that patients will have no right to refuse permission for details of their medical history being shared between different NHS bodies through the federated data platform (FDP).
NHS England says patients do not need to be given an opt-out because their data will be anonymised before it is shared, which should ensure their identity is protected, and also because the FDP is for “direct care”.
However, it has been accused by Foxglove, which monitors big tech and its relationship with government, of doing a U-turn after initially signalling that patients would have that right.
When NHS England published FAQs about the platform in August, it said: “The national data opt-out policy sets when a person can opt out of their confidential patient information being used for purposes other than their individual care for planning and research. This policy will apply to relevant data in the FDP.”
But when it updated that document last month, it explicitly ruled out patients being able to opt out. It posed the question: “Can patients opt out of sharing their data with the federated data platform?”
Its answer was: “No. Patients can only opt out of sharing their data for research and planning, not for direct patient care.”
NHS England’s new stance also seems to contradict assurances that Nick Markham, a health minister, made in a letter to MPs on the Commons health and social care select committee in August.
He pledged that, as part of efforts to ensure public trust in how their data will be used by the FDP, “we … will be clear about people’s rights and choice to opt out (where applicable)”.
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Lord Markham also referenced the NHS’s existing national data opt-out policy, which sets out when someone can choose not to let their sensitive personal information be used more widely in the health service. “This policy will apply to relevant data in the FDP,” he told the MPs.
Cori Crider, a lawyer and the director of Foxglove, claimed the fact ministers had “zigzagged” over the right to opt out “risks fatally undermining confidence in data-sharing when we need people to feel confident in sharing their data for the good of the NHS”.
But NHS England may face a legal challenge over the lack of an opt-out, Crider hinted. “Patients must always have the right to choose who sees their health record for uses beyond their care,” she said. “Anything else is a legal non-starter and will sink the FDP before this half-billion-pound dirigible sets sail.”