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Sir Keir Starmer has pledged to set up a central research service for health data storage, with about £600mn of UK government money to streamline access to public medical information.
The prime minister announced the new Health Data Research Service in a speech on Monday, saying the system would ensure “patient data in our NHS is unlocked for the public good” and help “save lives with cutting-edge medicine”.
A government-backed review into how data is stored and used by the NHS last year called for a central service to control and store information.
The idea put forward in the report by Cathie Sudlow, professor of neurology and clinical epidemiology at Edinburgh university, quickly gained traction across Whitehall, playing into ministers’ twin ambitions to improve data flows within and between Whitehall departments and capitalise on public data held by the health service.
Sudlow previously told the Financial Times that there had been “a lot of thinking and ongoing discussions” within the Department of Health and Social Care, the NHS and the Office for Life Sciences about creating “transparent cost models” for charging researchers to access health data.
The service will be operational by the end of next year, according to a press release from the government, which said it would charge research organisations for access to the data.
Sudlow in her report warned that “undue emphasis on [selling data] damages trust” in the system. She told the FT that the most promising proposals on the table for pricing models involved “recovering the costs and value of accessing data”, rather than allowing the government to profit from the sale of data.
Many companies and researchers already pay to access anonymised NHS data, on a cost-recovery basis, but the process is disjointed and complicated, and officials believe a more centralised system would streamline the scheme and make it easier to recoup costs.
The service will be based at the Wellcome Genome Campus in Cambridgeshire, but officials said the government had not decided whether it would sit within the Department of Health and Social Care or be a separate arm’s-length body.
Starmer has vowed to abolish or merge ALBs, or quangos, in a push to cut waste and restore ministerial control over swaths of policy areas.
Health secretary Wes Streeting said: “We will unblock the barriers preventing our greatest scientists from safely accessing what they need to save patients’ lives — while keeping data secure.”
“This venture will drive vital investment into the UK and put us at the epicentre of breakthroughs in science,” he added.
Starmer in his speech also said the government would fast-track the system for setting up clinical trials in Britain, vowing to reduce the average time it takes to set up a trial from 250 days to 150 by March next year.
GSK chief executive Emma Walmsley said the pharmaceuticals company welcomed “the ambition and urgency” of the announcements on health data and clinical trials.
“The UK has unique potential to bring health data securely together with an NHS system that recognises the value of innovation, to accelerate and deliver the next generation of medicines and vaccines for patients,” she added.
