The UK government has taken a significant step towards expanding the use of GP patient data for medical research, directing NHS England to establish systems that will enable anonymised information from consenting patients to be shared with approved scientific studies.
Health and Social Care Secretary Wes Streeting has formally instructed NHS England to develop a service allowing specific data from GP health records to be collected and distributed to authorised research projects. The move builds on plans announced in 2024 to streamline how primary care data – including diagnoses, prescriptions and referral information – can be accessed for research purposes.
Initially, access will be limited to three major national studies: UK Biobank, Our Future Health and Genomics England’s 100,000 Genomes Project. These initiatives argue that linking GP records to their existing datasets will significantly enhance their ability to identify patterns, risk factors and potential treatments across a wide range of diseases. NHS GP data are regarded as particularly valuable due to their scale, long-term continuity and comprehensive coverage of the population.
Professor Sir Rory Collins, Chief Executive and Principal Investigator of UK Biobank, described access to de-identified GP records for its 500,000 volunteers as transformative. While the Biobank already links participant data to hospital records, cancer registries and other NHS sources, it has not previously been able to incorporate much of the detailed information held in primary care. Researchers have long called for this gap to be addressed.
Under the new arrangements, GPs will remain data controllers and will be permitted to share relevant information for approved studies without needing to recontact participants each time, provided prior consent has been given. Data will only be shared for individuals who have actively enrolled in one of the specified research programmes; records of other patients will not be included.
The research community has broadly welcomed the development. Nicola Perrin, Chief Executive of the Association of Medical Research Charities, said that where patients have consented to their data being used in cohort studies, it is right that information flows in line with their wishes. She highlighted the importance of primary care data as a rich source of real-world evidence, particularly for people living with multiple long-term conditions, and said the change could accelerate research into diseases ranging from arthritis and asthma to dementia and diabetes.
However, the announcement comes amid ongoing concerns about NHS data security and governance. Critics have questioned the government’s decision to award a contract to US technology firm Palantir to build a federated data platform designed to integrate NHS datasets. Opposition parties and some Labour MPs have called for greater scrutiny of the procurement process and have urged a pause in related contracts pending further investigation.
As the infrastructure is developed, balancing research ambition with public trust and robust safeguards will be central to the plan’s success.