As the NHS in England is set to launch a competition for a wide-ranging patient data platform, a public consultation has said decisions about health data sharing should not be made by politicians.
A report by England’s National Data Guardian (NDG), an independent health data watchdog appointed by the Secretary of State for Health and Social Care, found that in citizens’ juries consulted about health data, “very few jurors wanted decisions about the future of initiatives that must be taken by the Minister or the organization responsible for them. Most felt that an independent panel of experts and laypeople should evaluate data sharing initiatives.”
According to that Annual Report 2021-2022 [PDF]released yesterday, citizen jurors were the least supportive NHS COVID-19 data store and platformthe controversial Palantir-based system established under a series of contracts without formal competition.
Plans to expand use of the system, which was put in place to help analyze health data in the country in response to the COVID-19 pandemic, threatened with a judicial review. Citizens’ juries were set up as a government concession to legal pressures.
The study found just 38 per cent of judges were very supportive of the NHS COVID-19 data repository and platform “due to concerns about a lack of transparency”. Meanwhile, 77 percent of the judges were very much in favour OPEN SAFELYthe research model proposed by Ben Goldacre, leader of an academic team at Oxford University, which uses large health datasets “because they felt it was 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 to store and analyze patient data in England. That controversial £360m ($418m) raising. A contract termination is to begin next week thereafter Reports surfaced showing that secretive spy tech company Palantir made the contest a “must-win deal.” after his hiring 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 that will have a significant impact on our data ecosystem. There will be many benefits, but as with all programs of this size and scope there will be a lot to do to explain what is happening and why if the NHS is to gain people’s trust and support.
“As such, there must be a strong commitment to transparency and engagement. This is advice I gave to the program team. As plans for the FDP progress, I will continue to engage with the program in a number of key areas, including the essential requirement that the program evolve to be consistent with the values of the NHS.
The head of the NDG, Dame Fiona Caldicott, said her team will continue to look at the program in 2022-23 as his plans for the development and implementation of the FDP take shape.
The report also cited the Department for Health and Social Care (DHSC)’s commitment to set up arrangements for an independent review 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 instructions from NHS England and Improvement (NHSE&I) but, at its discretion, was unable to comply with an instruction from the Central Health Service to collect data and set up specific information systems.
“The abolition of an independent statutory body in NHS Digital tasked with defending patients’ rights is regrettable in itself. But handing that body and its powers over to NHSE&I is a grave mistake.” Manning said in a BMJ article published in March.
The NDG report states: “Stakeholders and colleagues raised concerns about how this safe haven would be maintained when NHS Digital merges with NHSE&I and the data arm of Health & Social Care is not as clearly separated from the operational arm of NHS Who can try to use it.”
The report states that DHSC is committed to “providing arrangements for an independent review of NHS England’s exercise of its data functions, including any data requests, and the governance of data processing within the organisation, as well as the strengthening of safeguards based on law.” . a proposal that the NDG strongly supported.
“NDG will continue to engage with DHSC on how these safeguards are established in practice, including seeking assurance that the group conducting an independent review has sufficient resources with the necessary expertise and authority to function effectively,” says the report.
https://www.theregister.com/2022/08/31/uk_health_data_share/ Sharing health data in the UK shouldn’t be a ministerial decision • The Register