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How to price data on NHS patients and as a result streamline the sale of information to companies and researchers is being studied by UK officials as part of proposals to mine the value of the health service’s huge store of records.
The officials are modelling pricing structures as part of proposals to create a “national health data service”, which is likely to form a part of the government’s 10-year plan for the NHS to be unveiled in the spring, according to people briefed on 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 centralised 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 by Cathie Sudlow, professor of neurology and clinical epidemiology at Edinburgh university, called for a central service to control and store information, something that is gaining traction 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 fuel public concern over profiteering from private medical information.
Sudlow said there had already been “a lot of thinking and ongoing discussions” — within the Department of Health and Social Care, the NHS and the government body Office for Life Sciences — about creating “transparent cost models” that recognise the value of health data.
She told the Financial Times that the proposals under study sought to ensure that “benefits for patients and the public can be realised”. Sudlow added that they involved “recovering the costs and value of accessing data” 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 had to be handled with care. “The idea of large multinational companies profiting off the back of the NHS is not palatable for many people, and the notion of direct data selling doesn’t go down well with the public,” Sudlow said. Her report warned “undue emphasis on [selling data] damages trust” in the system.
A recent survey by the NHS found that 50 per cent of people were concerned 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 secretary Wes Streeting that is due in the spring, according to people briefed on the plan.
The proposals include the creation of a “single access system” for information from GP surgeries, hospitals and other care settings.
The health service has been striving to improve its use of data, with NHS England awarding a controversial £330mn 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 “could lead the world in medical research”.
“Our data will be as valuable as our taxes — we contribute our data in the knowledge that it will lead to more personalised medicine, but also because it will contribute to better care for everyone,” he added.
The government 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. Our priority will always be to ensure that data is used to benefit patients.”
Under Sudlow’s recommendations, the body would have its own budget and would be run by an independent senior director.
It would also be charged with mapping out the infrastructure needed to store and access health information, including datacentres and software systems.
The data service would be responsible for linking existing bodies to create large scale sets, which are likely to provide more meaningful insights to researchers.
