UK studies pricing plan for sale of NHS patient data

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UK officials are studying ways of pricing NHS patient data to streamline the sale of information to companies and researchers as part of a proposal to mine the value of the vast trove of health service data.

They are modeling the pricing structure as part of proposals to create a “national health data service”, which could form part of the government’s 10-year plan to open up the NHS 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 complex, 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 Cathy Sudlow, professor of neurology and clinical epidemiology at the University of Edinburgh, calls for a central service to control and store data, which 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 warn will increase public concerns about profiteering from private medical information.

Sudlow said there had already been “a lot of thought and ongoing discussion” between the Department of Health and Social Care, the NHS and government agency the Office for Life Sciences – about creating a “transparent cost model” that recognizes the value of health data. .

He told the Financial Times that proposals under study sought to ensure “benefits for patients and the public are realised”. Sudlow added that they involve “recovering the cost and value of accessing the data” rather than allowing the government to profit from the sale. The data is also accessed in a “secure setting”, meaning it is anonymous and cannot be linked to individual patients.

However, he added that such changes must be handled with care. “The idea of ​​large multinational companies profiting behind the NHS is not palatable to many people, and the idea of ​​selling data directly does not go down well with the public,” Sudlow said. His report warned of “undue emphasis [selling data] Damages trust in the system.

A Recent surveys The NHS found that 50 per cent of people were concerned 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 drawn up by Health Secretary Wes Streeting due in the spring, according to people briefed on the plan.

Proposals include creating a “single access system” for information from GP surgeries, hospitals and other care settings.

As the health service continues to strive to improve its use of data, NHS England has awarded a controversial £330mn contract to US data analytics group Palantir through 2023 to build a new platform.

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 not only in the knowledge 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 the comprehensive Sudlow review and are considering the recommendations ahead of the forthcoming spending review, life sciences sector plan and 10-year health plan.”

Under Sudlow’s recommendation, the agency would have its own budget and be run by an independent senior director.

It will also be charged with mapping the infrastructure needed to store and access health information, including datacenters and software systems.

The data service will be responsible for linking existing entities to create large-scale data sets, which can provide researchers with more meaningful insights.