Decisions on health data sharing should not be taken by politicians, citizen juries find
Britain's National Data Guardian report also warns NHS needs to earn people’s trust, support for controversial data platform
As the NHS in England is set to launch a competition for a far-reaching patient data platform, a public consultation has said decisions about health data sharing should not be taken by politicians.
A report by England's National Data Guardian (NDG), an independent watchdog for health data appointed by the Secretary of State for Health and Social Care, found that in citizen juries consulted on health data, "very few jurors wanted decisions about the future of these initiatives to be taken by the minister or organization accountable for them. Most believed that an independent body of experts and lay people should assess the data sharing initiatives."
According to the Annual Report 2021-2022 [PDF], published yesterday, citizen jurors were least supportive of the NHS COVID-19 Data Store and Platform, the controversial Palantir-based system established under a series of contracts without formal competition.
Plans to expand use of the system, set up to help analyze health data in the country in response to the COVID-19 pandemic, faced threat of a judicial review. The citizen juries were set up as part of the government's concessions to the legal pressure.
The study found only 38 percent of jurors were very much in support of the NHS COVID-19 Data Store and Platform "because of concerns about lack of transparency". Meanwhile, 77 percent of jurors were very much in support of OpenSAFELY, the research model proposed by Ben Goldacre, leader of an academic team at Oxford University that uses large health datasets, "because they considered it to be the most transparent, trustworthy, and secure of the three data sharing initiatives."
The report comes on the eve of the formal launch of a competition to support a Federated Data Platform, designed to store and analyze patient data in England. The controversial £360 million ($418 million) procurement is set to begin with a contract notice next week, after reports emerged showing that the secretive spy-tech business Palantir was making the competition a "must-win deal" following its recruitment of Indra Joshi and Harjeet Dhaliwal, key figures in NHS England's data science and AI teams.
The NDG report said: "This is an incredibly ambitious project which will have a considerable impact on our data ecosystem. It stands to deliver many benefits, but as with all programmes of this size and consequence, there will be much to do to explain what is happening and why if the NHS is to earn people's trust and support.
"As such, there needs to be a strong commitment to transparency and engagement; this is advice that I have given to the programme team. As the plans for the FDP progress, I will continue to engage with the programme on a number of key areas, including the essential requirement that the programme develops in a way which aligns with NHS values."
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The NDG's head, Dr Nicola Byrne, said her team would continue to engage with the programme during 2022-23 as its plans for the development and implementation of the FDP take shape.
The report also noted the Department of Health and Social Care's (DHSC) commitment to ensure arrangements for independent scrutiny of NHS England's exercise of its data functions.
The move followed criticism from Kingsley Manning, the former chairman of NHS Digital, a body with certain statutory rights to control the flow of health data. NHS Digital received direction from NHS England and Improvement (NHSE&I) but could use its discretion to not comply with a direction from the central health service to collect data and to establish specific information systems.
"Doing away with an independent statutory body in NHS Digital, charged with defending patient rights, is itself, unfortunate. But handing that body and its powers to NHSE&I is a grave error," Manning said in a BMJ article published in March.
The NDG report said: "Concerns were shared by stakeholders and peers regarding how this safe haven would be sustained when NHS Digital is merged with NHSE&I and the data arm of health and social care is not as clearly separated from the operational arm of the NHS who may seek to use it."
The report said the DHSC had committed to "ensure arrangements for independent scrutiny of NHS England's exercise of its data functions, including all data requests, and the governance of data handling within the organisation and, furthermore, the strengthening of safeguards on a statutory basis, a proposal the NDG strongly supported.
"The NDG will continue to engage with the DHSC about how these protections will be established in practice, including seeking assurance that the group providing independent scrutiny will be sufficiently resourced with the requisite expertise and authority to function effectively," the report said.