The Health Data Research Service: a once-in-a-generation chance to lead the world

The UK holds one of the most valuable health data assets on the planet. NHS records can follow a patient's health across decades, and General Practice (GP) records alone capture around 90 per cent of a person's NHS interactions over their lifetime. Few other countries can match that depth and representativeness. It is a resource with the potential to accelerate the discovery of new medicines, improve patient safety, and attract high-value research and investment to the UK.

Today the ABPI publishes, ‘Pharmaceutical industry priorities for the Health Data Research Service’, a report setting out how that potential can finally be realised. For the first time, there is a clear plan, government backing, and a shared sense across the sector that this is achievable.

A moment years in the making
For years, the UK's health data has been described as a "federation of fragments": rich in places, but hard to join up, slow to access, and difficult for researchers to rely on. The new Health Data Research Service (HDRS) is the opportunity to change that. Following the Sudlow Review, the ABPI and Health Data Research UK jointly called for its creation in January 2025. The Prime Minister announced the HDRS in April 2025 in partnership with Wellcome, and the government confirmed a £500 million commitment in the Life Sciences Sector Plan.

The encouraging news, confirmed by independent analysis, is that the building blocks already exist. Established services represent decades of investment and expertise. The task ahead is to connect what already works and make it easier and more reliable to use.

What the ABPI’s report recommends
Our report is the product of detailed consultation with ABPI member companies, and it is intended to be practical – cutting through a long list of competing asks, and focussing instead on what the sector really needs to improve research output, drive increased investment, and ultimately deliver better treatment to patients.  

Three fundamentals stand out:

• Comprehensive GP data across all four nations. GP records are the foundation of the UK's longitudinal advantage. Extending reliable access consistently across England, Scotland, Wales, and Northern Ireland is the single most important step.
• Independent, standards-based data linkage. The ability to join datasets together accurately and quickly is one of the two biggest factors when deciding where research is carried out. Reliable linkage, with published quality standards, would remove a barrier that has held the UK back for years.
• Predictable, commercially competitive service. Researchers need to know how long access will take and what it will cost. Clear, published timelines and fair pricing would give companies the confidence to bring studies to the UK rather than elsewhere.

Crucially, these are not narrow industry demands. As the report puts it, getting the fundamentals right for industry means getting them right for most researchers. A faster, more reliable service benefits academics, charities, and the NHS alike.

A service built on trust
None of this works without public trust. The report is clear that trust must be built into the design and governance of the HDRS from the very outset. Patient data should always be held and used responsibly, through secure, privacy-protecting environments, and in line with established safeguards including the Caldicott Principles.

This matters to patients and to the pharmaceutical industry equally. A service the public actively supports can draw on the data needed to deliver real benefits: earlier diagnosis, better-targeted treatments, and safer medicines.

A partnership for the future
The prize is significant. Health data research helps identify unmet need, test new treatments, and monitor how medicines perform in everyday care. Done well, the HDRS will strengthen the UK's position as a global leader in this field and attract substantial investment, while improving outcomes for patients.

The pharmaceutical industry is ready to play its part. We stand ready to work in partnership with government, existing service providers, patients, and the wider research community to design a service that delivers for everyone. The components are in place. The commitment is there. With focus on the fundamentals and public trust at its heart, the Health Data Research Service can finally deliver what previous efforts could not, for patients at home and around the world.

By Janet Messer, ABPI Director of Health Data and Digital Policy