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Officials in the UK are studying ways to price NHS patient data to simplify the process of selling the information to companies and researchers, as part of proposals to mine the value of the health service's vast store of information.
They are modeling pricing structures as part of proposals to create a “national health data service”, which is likely to form part of the government’s ten-year plan for the NHS to be unveiled in the spring, according to people familiar with the plans. .
Many companies and researchers already pay for access to anonymized NHS data, but the process is disjointed and complex, and officials believe a more centralized system would improve the use of the information and increase transparency.
A government-backed review into the way data is stored and used by the NHS, conducted by Cathy Sudlow, professor of neuroscience and clinical epidemiology at the University of Edinburgh, has called for the creation of a central service to control and store information, which is gaining momentum across Whitehall departments.
The most controversial part of the plan is likely to revolve around the pricing of medical data, which experts have warned will raise public concern about profiteering from private medical information.
Sudlow said there had already been “a lot of thought and ongoing discussion” – within the Department of Health and Social Care, the NHS and the Government Life Sciences Office – about creating “transparent cost models” that recognized the value of health data. .
She told the Financial Times that the proposals under consideration seek to ensure “the benefits to patients and the public can be achieved”. Sudlow added that it involved “recovering the costs and value of access to the data” rather than allowing the government to profit from the sale. The data is also accessed in a “secure setting,” meaning it is anonymized and cannot be linked to individual patients.
But she added that such a shift must be treated with caution. “The idea of large multinational companies benefiting from NHS support is not palatable to many people, and the idea of direct selling of data is unpopular with the public,” Sudlow said. Its report warned that “undue focus on ‘selling data’ damages trust” in the system.
A Last scan An NHS study found that 50% of people were concerned that the health service would sell their data to companies without their permission.
The data service is likely to form part of Labour's 10-year health plan being developed by Health Minister Wes Streeting and due to be rolled out in the spring, according to people familiar with the plan.
The proposals include creating a “single access system” for information from GP surgeries, hospitals and other care settings.
The health service is striving to improve its use of data, with England's NHS awarding a controversial £330m contract to US data analysis group Palantir in 2023 to develop a new platform.
Streeting said in October that data “is the future of the NHS” and that the UK “could lead the world in medical research”.
“Our data will be as valuable as our taxes – we contribute our data knowing that it will lead to more personalized medicine, but also because it will contribute to better care for all,” he added.
A government spokesman said: “We welcome the comprehensive Sudlow review and are considering the recommendations ahead of the upcoming spending review, life sciences sector plan and 10-year health plan.”
Under Sudlow's recommendations, the authority would have its own budget and be managed by an independent senior director.
It will also be tasked with mapping the infrastructure needed to store and access health information, including data centers and software systems.
The data service will be responsible for linking existing bodies to create large-scale collections, which will likely provide more useful insights to researchers.
