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UK officials are studying ways of pricing NHS patient data to make it easier to sell the information to companies and researchers, as part of a proposal to explore the value of the health service’s vast trove of information.
They are modeling the pricing structures as part of proposals to create a “national health data service”, which is likely to be part of the government’s 10-year plan for the NHS to be unveiled in the spring, according to people familiar with the plans.
Many companies and researchers already pay to access anonymised NHS data, but the process is disjointed and complicated, and officials believe a more centralized system would improve the use of information and increase transparency.
A government-backed review of the way data is stored and used by the NHS by Cathie Sudlow, professor of neurology and clinical epidemiology at the University of Edinburgh, called for a central service to control and store information, something that gets strength in Whitehall departments.
The most controversial part of the plan is likely to revolve around the pricing of medical data, which experts have warned will fuel public concern about profiteering from private medical data.
Sudlow said there had already been “a lot of thinking and ongoing discussion” – within the Department of Health and Social Care, the NHS and government body the Life Sciences Office – about creating “transparent cost models” that recognize the value of health data.
She told the Financial Times that the proposals being studied sought to ensure that “benefits for patients and the public can be realised”. Sudlow added that they involve “recovering the cost and value of data access,” rather than allowing the government to profit from the sale. The data is also accessed in a “secure setting”, meaning it is anonymised and cannot be linked to individual patients.
However, she added that such a shift must be handled carefully. “The idea of large multinational companies profiting off the backs of the NHS is not acceptable to many people, and the notion of selling data directly does not go down well with the public,” Sudlow said. Her report warned of “overemphasis [selling data] undermines trust” in the system.
AND recent survey The NHS found that 50 per cent of people are worried that health services will sell their data to companies without their permission.
The data service is likely to be part of Labour’s 10-year health plan being developed by Health Secretary Wes Streeting, due to be released in the spring, according to people familiar with the plan.
The proposals include creating a “single access system” to information from GP surgeries, hospitals and other care facilities.
The health service is looking to improve its use of data, with NHS England awarding US data analytics group Palantir a controversial £330m contract to develop a new platform in 2023.
Streeting said in October that data was “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 everyone,” he added.
A government spokesman said: “We welcome Sudlow’s comprehensive review and are considering the recommendations ahead of the upcoming spending review, the life sciences sector plan and the 10-year health plan.”
Under Sudlow’s recommendations, the body would have its own budget and be managed by an independent senior director.
She would also be in charge of mapping the infrastructure needed to store and access health information, including data centers and software systems.
The data service would be responsible for linking existing bodies to create large-scale collections, likely to provide more meaningful insights to researchers.
