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How to value data on NHS patients and therefore coordinate the sale of information to companies and researchers are being studied by UK officials as part of proposals to dig up the value of the health service to keep records.
Officials are modeling the cost 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 with plans.
Many companies and researchers already pay to access anonymised NHS data, but the process is disjointed and complex, and officials believe a centralized system could improve the use of information and increase transparency.
A government-backed review of how 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 centralized service to manage and store information, something that is gaining traction in all Whitehall departments.
The most controversial part of the plan is likely to surround the pricing of medical data, which experts warn will fuel public concern about profiting from private medical information.
Sudlow said there has been “a lot of thinking and ongoing discussion” – within the Department of Health and Social Care, the NHS and the government's Office of Life Sciences – about creating “clear cost models” that understand the value of health data. .
He told the Financial Times that the proposals under review sought to ensure that “the benefits of patients and society can be achieved”. Sudlow added that they are involved in “reimbursing the cost and value of access to data” rather than allowing the government to profit from the sale. The data is also accessible in a “secure environment”, which means that it is anonymous and cannot be linked to individual patients.
However, he added that such changes should be handled carefully. “The idea of large multinational companies profiting off the back of the NHS is unappealing to many people, and the idea of directly selling data doesn't sit well with the public,” Sudlow said. His report warned “an undue emphasis (on data sales) is damaging trust” in the system.
A recent research the NHS found that 50 per cent of people are concerned that the health service will sell their data to companies without their consent.
The data service is likely to be part of a 10-year health plan being developed by health secretary Wes Streeting that is due in the spring, according to people briefed on the plan.
Proposals include the creation of a “single access system” for information from GP surgeries, hospitals and other care settings.
The health service has tried to improve its use of data, with NHS England offering a controversial £330mn contract to the 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 “can lead the world in clinical research”.
“Our data will be as valuable as our taxes – we contribute to our data in the knowledge that it will lead to 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 corporation would have its own budget and be run by an independent chief executive.
It will also be charged with mapping the infrastructure needed to store and access health information, including data centers and software systems.
The data service will be responsible for combining existing entities to create larger data sets, which can provide more meaningful insights to researchers.