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Officials in the UK are studying ways to value NHS patient data to make it easier to sell the information to companies and researchers, as part of proposals to undermine the value of the health service’s vast information storage.
They are modeling pricing structures as part of proposals to create a “national health records 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 the people informed about 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 into 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 central service to control and store the information, something that is gaining traction in Whitehall departments.
The most controversial part of the plan is likely to revolve around the pricing of medical records, which experts have warned will fuel public concern over profiteering from private medical information.
Sudlow said there was already “much thought and ongoing discussion” – within the Department of Health and Social Care, the NHS and government body the Office for Life Sciences – about creating “transparent cost models” that recognize the value of health data. .
She told the Financial Times that the proposals in the study aimed to ensure that “benefits for patients and the public can be realised”. Sudlow added that they involved “recovering the costs and value of data access” rather than allowing the government to profit from the sale. The data is also accessed in a “secure location”, meaning it is anonymous and cannot be linked to individual patients.
However, she added that such a change should be handled with care. “The idea of large multinational companies profiting off the back of the NHS is not palatable to many people and the notion of selling data directly does not go down well with the public,” Sudlow said. Its report warned “undue emphasis on (selling data) undermines trust” in the system.
A recent survey by the NHS found that 50 per cent of people were worried that the health service would 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 in the spring, according to people briefed on the plan.
The proposals include creating a “single access system” for information from GP surgeries, hospitals and other care settings.
The health service has been trying to improve its use of data, with NHS England awarding a controversial £330m contract to US data analytics group Palantir in 2023 to develop a new platform.
Streeting said in October that data “is the future of the NHS” and the UK “can lead the world in medical research”.
“Our data will be as valuable as our taxes – we contribute our data knowing 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 Sudlow’s comprehensive review and are considering the recommendations ahead of the next 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 headed by an independent senior director.
It would also be charged with designing 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 clusters, which are likely to provide more meaningful insights for researchers.
