Professor Iain Buchan is W.H. Duncan Chair of Public Health Systems and Associate Pro Vice Chancellor for Innovation at the University of Liverpool. Professor Andrew Morris is Director of Health Data Research UK, Professor of Medicine and Vice Principal at the University of Edinburgh, and President of the Academy of Medical Sciences.
The UK’s new Health Data Research Service (HDRS), backed by a landmark £600 million investment from the government and Wellcome, has the potential to revolutionise the use of health data for public benefit.
In a joint article for the BMJ, we explain the unprecedented opportunity for the HDRS to improve scientific discovery, clinical trials, and the development of artificial intelligence (AI) for healthcare – benefiting patients and the economy – if it is grounded in real-world care and internationally connected.
The HDRS aims to create a single, secure gateway to health and care data, enabling research while maintaining the highest standards of data protection and public trust. The trust of patients, health professionals and a wide range of communities will be vital for the HDRS to succeed where previous national schemes such as Care. Data have failed. It has decades of data assets to build on, making them greater than their sum of parts – from NHS records to wider public service data and national research studies. The early design choices for HDRS will be vital for the trust and co-investment it needs from a wide range of communities to succeed.
Key principles for success
We suggest five principles to ensure the HDRS delivers on its promise:
- Stewardship of a network, not command and control: HDRS should act as a steward of a distributed network of data assets and co-investors, rather than centralising data. This approach builds on successful regional and national models and avoids the pitfalls of previous centralised schemes.
- Data as infrastructure, not commodity: The service must invest in data as long-term infrastructure, prioritising quality, curation, and responsible use over short-term monetisation.
- People-centred approach: Public trust is paramount. The HDRS must involve citizens in its design and oversight, and invest in skilled professionals for data governance, and public participation, intertwined with data and AI engineering. Earning local community trust will require fair shares of benefits across regions.
- Serve multiple purposes, concentrating effort and reducing waste: The HDRS should serve the NHS, academia, industry, and civic organizations, with clear benefits for all stakeholders, especially clinicians and patients. If the HDRS can provide value for care and planning as well as research then health systems will co-invest, reducing duplication and increasing the quality of the HDRS.
- International alignment: While the HDRS is a UK initiative, aligning with international equivalents will ensure interoperability, competitiveness, and cross-border collaboration – particularly the European Health Data Space.
A call to action
“If we get this right and the HDRS becomes an effective steward of a national health-data grid, the investment will pay off. Insights will flow, discoveries will be made, clinical trials will become more efficient, AI will be trained and tested well, and care delivery and population health will likely be improved—benefiting the nation’s overall health and prosperity,” say Buchan and Morris.
Click here to read the BMJ article: https://www.bmj.com/content/392/bmj.s54