Accessing national health data for research

DOI: https://doi.org/10.58248/PN774

Background

NHS data is widely regarded as a unique national asset for research, as it provides comprehensive, long-term health data for most of the UK. Harnessing national health data can not only improve patient outcomes and NHS performance but also attract investment and boost the UK’s global competitiveness in life sciences.

However, researchers often wait months or years for data access, hindering innovation. Barriers are multi-layered and often arise from fragmentation. They include:

• technical challenges (such as navigating multiple data platforms and IT systems that do not work well together)
• legal and regulatory challenges (such as complex data-sharing laws that can be difficult to interpret)
• governance challenges (such as chains of decision-makers where a single refusal can stop access)

In April 2025, the government announced the Health Data Research Service (HDRS), a £600 million initiative to provide a single, streamlined system for approved researchers to securely access and analyse national health data. The HDRS is expected to launch by the end of 2026.

Research opportunities for national health data

Research using large-scale health data has contributed to advances in understanding disease, improving diagnosis and treatment, clinical trials and long-term drug safety and efficacy. Rapid access to health data enabled the RECOVERY trial during covid-19, which used patient data to identify effective treatments for severe cases.

The HDRS could improve clinical trials and help regain global competitiveness by supporting participant recruitment and trial planning. One 2026 report estimates that restoring pre-pandemic clinical trial levels could generate £3 billion for the UK economy, £485 million for the NHS and 26,000 jobs, and suggests that the HDRS could help facilitate this.

Real-world data can be used to monitor the safety and effectiveness of medical interventions following clinical trials. For example, a European network of health databases supported a study showing that Human papilloma virus (HPV) vaccination reduces the risk of serious pre-cancerous cervical lesions, complimenting clinical trial findings.

Health data can identify and address health inequalities, but incomplete or unrepresentative data may exacerbate them.

What are the technical challenges?

NHS data is collected mainly for patient care, which can affect data quality for research. Around 80% of UK health data is not organised in a standard format, which can make it difficult to organise and analyse.

Data is often stored across multiple systems that do not always work well together, and investment in maintaining and upgrading data systems is often deprioritised in favour of novel higher‑profile initiatives. Enabling NHS systems to share and access data more effectively could support research.

Data security risks include data breaches and the risk that people can be re-identified from their data, particularly when datasets are linked or combined with other information. Data breaches undermine trust, highlighting the need for safeguards and appropriate access controls.

What are the governance considerations?

NHS data is governed by multiple legal and ethical frameworks. A range of data controllers, such as GP practices and NHS trusts, decide how data is used and must ensure legal compliance. Complex data laws can make controllers risk‑averse, particularly when responsibilities are unclear.

Health data is confidential, and sharing for research typically requires patient consent or approval under appropriate legal basis. Patients can opt out of sharing their data, although this does not apply in all circumstances.

Trust and participation

Stakeholders have agreed that public trust is critical to the success of health-data-sharing initiatives. Previous NHS England data-sharing initiatives have been suspended due to public distrust, and prompted increased opt-outs.

NHS England reported that 76% of the public are willing to share their health data for academic research if appropriate safeguards are in place. Evidence suggests that trust depends on transparent governance, public involvement in decision‑making and understanding the benefits to the NHS. GP trust and participation is also crucial, as GPs control most primary care data.

Acknowledgements

This briefing was produced in consultation with experts and stakeholders, who are listed at the end of the briefing. It was co-funded by Biotechnology and Biological Sciences Research Council (UKRI). POST would like to thank everyone who contributed their expertise.