ABPI Sets Out Priorities for the UK's Health Data Research Service
核心洞察
The ABPI has published a report outlining pharmaceutical industry priorities for the new Health Data Research Service (搜索) (HDRS), backed by a £500 million government commitment.
The report identifies comprehensive GP data across all four UK nations, independent standards-based data linkage, and predictable commercial service as the three fundamental requirements.
Independent analysis confirms the building blocks already exist across CPRD, SAIL, Genomics England (搜索), and UK Biobank (搜索), with gaps lying in connective architecture and governance rather than data assets.
The Association of the British Pharmaceutical Industry (搜索) (ABPI) has published a report setting out the pharmaceutical industry's priorities for the UK's new Health Data Research Service (搜索) (HDRS), a once-in-a-generation initiative designed to transform how NHS health data is used to accelerate medicine discovery, improve patient safety, and attract high-value research investment.
The HDRS was announced by the Prime Minister in partnership with Wellcome (搜索), following a joint call from the ABPI and Health Data Research UK (搜索) (HDRUK) in January 2025 in the wake of the Sudlow Review. The government confirmed a £500 million commitment in the Life Sciences Sector Plan.
A "Federation of Fragments"
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 independent Health Data Research Service (搜索) Digital Ecosystem Analysis (Emrys Health/Nesta for Wellcome (搜索), 2026) attributes past failures to fragmented infrastructure, loss of public trust — most starkly demonstrated by the collapse of care.data and the General Practice Data for Planning and Research (GPDPR) programme — and failure to engage research users from the outset.
Despite this, 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. Unlike insurance claims data — the primary source in the US and many other markets — NHS records can span decades of a patient's life, enabling stakeholders to monitor exposures and health outcomes over time and generalise findings to populations in other countries.
Three Fundamentals
The ABPI report, produced through detailed consultation with member companies, identifies three fundamentals that 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 described as the single most important step. The Digital Ecosystem Analysis identifies specific legal barriers: Northern Ireland lacks a statutory framework permitting secondary use of identifiable data without consent, while Scotland retains practice-level approval requirements across most regions.
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. The report notes that the CPRD has long provided GP data linked to secondary care data but depends on NHS England to undertake the linkage required — a dependency that proved highly problematic when, for more than three years, NHS Digital/NHSE lacked the capacity to carry out essential linkages despite appropriate permissions and a contract being in place.
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.
As the report states, 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.
The Clinical Trials Imperative
Clinical trials account for more than 40 per cent of pharmaceutical R&D spend, and the economic stakes are significant: clinical trials already contribute more than £7 billion in gross value added and more than £1 billion in NHS revenue annually.
However, the Digital Ecosystem Analysis documents the UK's deteriorating competitive position. Despite some improvements in the ecosystem, industry-sponsored enrolment reached a seven-year low in 2024/25. The UK has fallen from fourth to eighth globally for phase III trials and is second slowest of 18 European countries for trial setup.
The report recommends that a data-enabled clinical trials service within the HDRS should work through clinical teams, not just mass patient communications, with the analysis confirming that clinician-mediated data-driven recruitment achieves significantly higher conversion rates. In oncology and rare diseases, the service should also support biomarker-stratified and precision-medicine trials, where eligibility criteria require deep clinical data and genomic data that administrative datasets cannot provide.
Building on What Exists
The encouraging news, confirmed by independent analysis, is that the building blocks already exist. The components required are already present across the Clinical Practice Research Datalink (搜索) (CPRD), Genomics England (搜索), the Secure Anonymised Information Linkage Databank (搜索) (SAIL), the Secure Data Environment network, UK Biobank (搜索), and the devolved nations' Safe Havens. The gaps lie in connective architecture, service infrastructure, and governance, not in the underlying data assets themselves.
The report identifies four core linked datasets that form the minimum viable product for the HDRS's first phase: GP data, hospital episode statistics or equivalent secondary care data in devolved nations, death registration and mortality data, and hospital prescribing data. Beyond these, early-phase additions include laboratory and pathology results, structured data extracted from unstructured clinical text through natural language processing, cancer registry data linked to staging and biomarker information, and clinical genomic test data.
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.
The report also addresses regulatory requirements specific to the pharmaceutical industry. Data provenance — the documented lineage from source system through all transformations to the final analytical dataset — is described as a legal requirement, not a quality enhancement. Under MHRA guidelines, clinical trial data must be archived for at least 25 years, and the analysis finds that most UK assets operate rolling extracts where historical states are overwritten, undermining reproducibility and auditability.
The pharmaceutical industry is ready to play its part, standing ready to work in partnership with government, existing service providers, patients, and the wider research community. With focus on the fundamentals and public trust at its heart, the Health Data Research Service (搜索) can finally deliver what previous efforts could not, for patients at home and around the world.