UK to study pricing plan for selling NHS patient data

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UK officials are studying ways to charge for NHS patient data to facilitate the sale of data to companies and researchers, amid proposals to lift the cost of the health service’s vast data storage.

The pricing structures are being drawn up as part of proposals to create a “National Health Information Service”, 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 for access to anonymised NHS data, but the process is fragmented and complicated, and officials believe a more centralized system would improve the use of the data and increase transparency.

Cathy Sudlow, professor of neurology and clinical epidemiology at the University of Edinburgh, said a government-backed review of the way data is stored and used in the NHS is becoming increasingly important in Whitehall departments, a central service for managing and storing data.

The most controversial part of the plan revolves around the cost of medical information, which experts warn will exacerbate public concerns about the profiteering of personal medical information.

Sudlow said there had already been “a lot of thought and ongoing discussions” between the Department of Health and Social Care, the NHS and the government’s Office for Life Sciences – about creating “clear cost models” that recognized the value of health data. .

He told the Financial Times that the proposals under study were to ensure that “benefits for patients and the public can be realised”. Sudlow added that instead of allowing the government to profit from the sale, they would be involved in “recovering the costs and value of the information.” The data is also available in a “secure setting,” meaning it is anonymized and cannot be linked to patients.

However, such a change should be handled with caution, she added. Sudlow said: “The idea of ​​big multinational companies making profits off the back of the NHS is not attractive to many people, and the idea of ​​selling live data does not sit well with the public.” Her report warned that the system would be “damaged by an undue focus on data peddling”.

A A recent study The NHS found that 50 per cent of people are concerned that the health service sells their data to companies without their consent.

The data service could be part of Labour’s 10-year health plan being drawn up by Health Secretary Wes Streeting in the spring, people briefed on the plan said.

The proposals include creating a “single access system” to access 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 £330mn contract to US data analytics group Palantir by 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 medical research”.

“Our data will be as valuable as our tax – we will contribute our data knowing that it will lead to more personalized medicine, but also because it will lead to better care for everyone,” he added.

A government spokesman said: “We welcome the comprehensive Sudlow review and are considering its recommendations ahead of the forthcoming spending review, life sciences sector plan and 10-year health plan.”

Under Sudlow’s recommendations, the body would have its own budget and be headed by an independent senior director.

It also pays for mapping the infrastructure needed to store and access health information, including data centers and software systems.

The database is responsible for linking existing entities to create large-scale collections that provide researchers with more meaningful insights.