UK investigates pricing plan for selling NHS patient data

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British officials are exploring ways to price NHS patient data to streamline the sale of information to companies and researchers, as part of proposals to unlock the value of the health service’s vast trove of information.

They are modeling 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, due to be unveiled in the spring, according to people briefed on the plans.

Many companies and researchers already pay to access anonymized NHS data, but the process is disjointed and complicated, and officials believe a more centralized system would improve use of the information and increase transparency.

A government-backed inquiry into 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 is in is becoming increasingly important in Whitehall departments.

The most controversial part of the plan will likely revolve around medical data pricing, which experts say will fuel public concerns about profiteering from private medical information.

Sudlow said there had already been “a lot of consideration and ongoing discussions” – within the Department of Health and Social Care, the NHS and the government agency Office for Life Sciences – about creating “transparent cost models” that recognize the value of health data.

She told the Financial Times that the proposals being examined were aimed at ensuring “benefits for patients and the public can be realised”. Sudlow added that this is about “recovering the cost and value of accessing data” rather than allowing the government to profit from sales. The data is also accessed in a “secure environment”, meaning that it is anonymized and cannot be assigned to individual patients.

However, she added that such a postponement must be handled with caution. “The idea of ​​large multinational companies profiting from the NHS is not comfortable for many people, and the idea of ​​selling data directly does not sit well with the public,” Sudlow said. In its report, it warned that “undue emphasis on (selling data) damages trust in the system.”

A current survey The NHS found that 50 percent of people feared the health service would sell their data to companies without their permission.

The data service is likely to be part of Labor’s 10-year health plan being developed by Health Minister Wes Streeting and due in the spring, people briefed on the plan say.

The proposals include creating a “unified access system” for information from GP practices, hospitals and other care facilities.

The health service is keen to improve its use of data and NHS England awarded 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 that the UK “could be a world leader in medical research”.

“Our data will be as valuable as our taxes – we provide 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 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 recommendations, the board would have its own budget and be led by an independent executive director.

It would also be tasked with designing the infrastructure needed to store and access health information, including data centers and software systems.

The data service would be responsible for linking existing facilities to create large-scale datasets that are likely to provide researchers with more meaningful insights.