UK announces Health Data Research Service
07/04/2025 | UK Government
UK Prime Minister Sir Keir Starmer announced plans on Monday to establish a central Health Data Research Service in the UK, backed by approximately £600 million in funding from the government and the Wellcome Trust. The initiative aims to streamline access to public medical information, with Starmer saying that it will "turbo-charge medical research and deliver better patient care".
The government confirmed that patient confidentiality "will continue to be held to a gold standard," and that "rigorous security measures" would be implemented, such as "anonymity and virtual locked rooms", to ensure no health data is compromised.
According to the Financial Times (£), the idea was proposed following a government-backed review led by Cathie Sudlow, professor of neurology and clinical epidemiology at Edinburgh University. Her report called for a central service to control and store NHS data for researchers to access, focusing on cost recovery rather than profit generation to maintain public trust. The new service is to be based at the Wellcome Genome Campus in Cambridgeshire and aims to be operational by the end of next year.
While many researchers and companies already pay for anonymised NHS data, the current process is fragmented. Officials believe a centralised system will simplify access and cost recovery. The government has yet to decide whether the service will be part of the Department of Health and Social Care or an independent body.
Legal analysis by Pinsent Masons indicates that the government will need to address a number of contentious issues that EU officials faced when establishing the European Health Data Space (EHDS), such as requiring health data holders to make their data available to others to use, while requiring health data users to publish the results or outputs of their use of the data. Louise Fullwood, Legal Director at the law firm, said: "It will be interesting to see how the UK version addresses some of the more contentious aspects of the EHDS."
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