NHS to hold ‘national conversations’ with public over patient data use

Health service is to host a series of major ‘engagement’ events over the course of the next 18 months to gather feedback on issues including the controversial Federated Data Platform

Over the next 18 months the NHS is planning to run a programme of “national conversations” with the aim of better understanding the public’s views on the use of patient data and informing policy and programmes going forward.

NHS England has announced that, throughout next year and into the first quarter of 2025, the health service will run a programme, backed by £2m funding, to deliver a range of “large-scale engagement events”.

The aim of these events will be to “gather public views on digital and data transformation in the NHS”.

Topics under discussion will include the Federated Data Platform (FDP), which is due to launch next year and is intended to unite in a single infrastructure the information and operation of various existing IT systems.

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Plans for the FDP have been subject to criticism and concern, including from trade bodies representing doctors and patient campaign groups. Of particular contention is the potential ongoing involvement of Palantir in NHS data processing; a report from Amnesty International published in 2020 found that the tech firm is at “high risk… [of] contributing to serious human rights violations” via its work with US immigration agencies.

In a recent blog post, the National Data Guardian for Health and Social Care Dr Nicola Byrne stressed to government and the NHS “how vital it is to communicate and engage effectively with the public and professionals to maintain trust in how the NHS handles people’s data”.

“If designed and delivered correctly, [the FDP] could have a transformative impact on the NHS and help support its sustainability longer-term,” she said. “However, unfortunately but understandably, it has been receiving some negative attention that merits a thoughtful, considered response.”

In a piece written for The Times to coincide with the announcement of the engagement programme, the national chief medical officer Sir Chris Whitty said that “having our data shared across the NHS to assist directly in our own clinical care is a benefit to the great majority of patients in the NHS”.

“People should know how their data is used and be involved in these decisions, so it is welcome that NHS England has today announced a programme of national conversations with the public on data policies and programmes. I encourage people to take part,” he added. “The NHS has a responsibility to use data to improve individual patient care, its own effectiveness and support research. When we withhold our data from the NHS this can only reduce the effectiveness of care for us and others now, and medical advances for others in the future.”

Sam Trendall

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