The UK is studying a pricing strategy for the sale of NHS patient data

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UK officials are studying ways to buy NHS patient data to reduce the sale of information to companies and researchers, as part of proposals to dig up the value of the health service’s huge database.

They are modeling the pricing structures as part of proposals to create a “national health information service”, which could be part of the government’s 10-year plan for the NHS to be unveiled within a year, to follow the people mentioned in the plans. .

Many companies and researchers already pay to access anonymized NHS data, but the process is disjointed and complex, and officials believe a centralized system could improve the use of 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 the University of Edinburgh, called for a central service to manage and information retention, which is increasingly common across Whitehall departments.

The most controversial part of the policy may be about medical data pricing, which experts have warned will raise public concerns about profiting from private medical information.

Sudlow said there had been “a lot of thought and ongoing discussion” – within the Department of Health and Social Care, the NHS and the government’s Office of Health Intelligence – about creating “clear models of cost” that recognizes the value of health data. .

He told the Financial Times that the proposals being studied sought to ensure that “the interests of patients and the public can be realised”. Sudlow added that they are involved in “finding the cost and value of data acquisition” rather than allowing the government to make a profit from the sale. The data is also available “securely”, meaning it is anonymous and cannot be linked to individual patients.

However, he added that such a change should be handled carefully. “The idea of ​​big multinational companies making a profit off the back of the NHS is not a good idea for many people, and the idea of ​​selling data directly does not go down well with the public,” said Sudlow. His report warned “unnecessary pressure to (sell data) undermines trust” in the system.

A a recent study The NHS found that 50 percent of people are worried that the health service will sell their data to companies without their consent.

The data service is likely to be part of Labour’s 10-year Health plan being developed by health secretary Wes Streeting which is due to be rolled out this year, according to people briefed on the project.

Recommendations include creating a “single access point” for information from GPs, hospitals and other care settings.

The health service is trying to improve its use of data, with NHS England awarding a controversial £330mn contract to US data analytics group Palantir by 2023 to create a new platform.

Streeting said in October that data “is the future of the NHS” and the UK “can lead the world in clinical research”.

“Our data will be as important as our taxes – we contribute our data with the knowledge that it will lead to personalized medicine, but also because it will contribute to better care for everyone, ” he added.

A government spokeswoman said: “We welcome Sudlow’s full review and are considering the recommendations ahead of the upcoming spending review, the health science sector plan and the 10-year health plan.”

Under Sudlow’s recommendations, the group would have its own budget and be run by an independent chief executive.

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

The data service will be responsible for coordinating existing organizations to create large groups, which can provide meaningful information to researchers.