Question to the Department of Health and Social Care:
To ask His Majesty's Government how they plan to involve communities, local authorities, and NHS Trusts in the co-design and governance of the Health Data Research Service to ensure that data use supports locally tailored public health interventions.
On 7 April 2025, the Prime Minister announced that the Government and the Wellcome Trust will invest up to £600 million to create a new Health Data Research Service, co-designed through engagement with the public and patients, data users, and stakeholder organisations. This service will bring new treatments and cures to patients by safely enabling the use of patient data to super-charge research, attracting investment and making the United Kingdom one of the best places in the world to conduct ground-breaking medical research.
This groundbreaking initiative will deliver significant health benefits to the UK public and patients across the full spectrum of existing health research, including major public health challenges and diseases such as obesity, cancer, diabetes, and heart disease, which we know disproportionately shorten the lives of people in more deprived communities. The service will be designed to support people to get access to clinical trials and outputs from research faster, and the DigiTrials service supports researchers to recruit people to their trials who represent our diverse population.
At the heart of the Health Data Research Service (HDRS) is a national network of Secure Data Environments, built on the existing NHS Research Secure Data Environment Network, which have been developed in lockstep with their local communities, and which cover the whole of England. The HDRS will bring services together to support fast and secure access to data for researchers, but there is no intention to move existing data assets which sit in various organisations across the nation and require expertise to process, gather, and use, and work will continue with communities to ensure that the service continues to develop with patient and public trust at its heart. We will also be closely working with the devolved administrations to ensure this is a UK wide service, and with the relevant charities to ensure that people from all backgrounds are represented.
We are committed to designing the service in close partnership with patients, professionals, and the public to deliver a trusted service, providing safe and secure access to health, social care, and public data, and to ensure that the research enables the improvement of local service provision and preventative health measures. Detailed design work for this will begin once we have a Chief Executive Officer in place.
NHS England and the Department are running a major national engagement programme on data with over 4,000 people across England. The initial findings and recommendations from the public are already informing our approach and will continue to shape the design and governance of the HDRS. This will support everyone, from medical researchers to health charities, to develop evidence-based solutions to major public health challenges.