NHS data infrastructure must support the research needs of the life sciences sector
18 February 2025, London - To unlock the true potential of NHS data to improve population health, transform patient care and stimulate economic growth, England’s health data infrastructure must be designed to meet the needs of academic and industry researchers.
For the first time, a new cross-industry report, Unlocking NHS data for research sets out what the life sciences sector needs to maximise the benefits of recent significant government investment into providing secure access to NHS data for research to deliver scientific and economic benefits to the UK.
The report was developed by the Association of the British Pharmaceutical Industry (ABPI), the Association of British HealthTech Industries (ABHI), and the BioIndustry Association (BIA), which together represent the majority of companies in the UK that carry out research to prevent, detect and treat ill health. It highlights the crucial role that NHS data and the underpinning infrastructure play in supporting vital research – alongside the factors holding back its full potential for the life sciences sector.
Industry frustrations echo the findings of a recent review by Professor Cathie Sudlow, which found access to UK health data for research purposes to be slow and inefficient. As part of a drive to tackle this problem, the NHS recently invested £14 million in new health data infrastructure to create a network of regional Secure Data Environments (SDEs). These aim to provide secure research access to a wide range of NHS data held in NHS Trusts across England. Contributors to the new industry report stressed how critical it will be to design the SDEs to meet industry research needs if the potential of the NHS investment is to be realised. The report recommends that the regional SDE network must:
- Prioritise high-value datasets and services for discovery science, AI development, precision medicine and local health improvement research.
- Differentiate between the types of research best supported by the regional SDEs, and those best held through existing central resources, such as the Clinical Practice Research Datalink (CPRD).
- Provide a unified, integrated service, with a single point of entry, to streamline user experience and reduce duplication of effort.
- Standardise governance, contracts, and pricing for data access.
- Form an external advisory group to ensure industry and other key users are at the heart of strategic decision-making about the regional SDE network.
Emma Lawrence, BIA Head of Data Tech Policy and Public Affairs, said:
Innovators across the life science sector access health data to drive breakthroughs that benefit patients and the public. To unlock the full potential of the UK’s health data, we need to ensure that companies of all sizes can access this data in an efficient, timely and safe manner. Improving data access will not only accelerate innovation but also help small companies to scale in the UK, supporting the government’s growth agenda.
Our findings show that a user-centred data infrastructure, developed in collaboration with industry, will enable companies to harness NHS data for the benefit of the patients, the public and the UK economy.
Janet Valentine, ABPI Executive Director of Innovation and Research Policy, said:
Industry researchers depend on timely access to high-quality health data to conduct critical research. The UK operates in a globally competitive market, with many countries making significant investments in their health data infrastructure to attract industry research and investment. To achieve the government’s ambition for growth and for the UK to become a world leader in AI, it is essential that we design a health data infrastructure that will enable small and large companies across the life science sector to flourish. Our report recommends that the government consult with industry and academia health data researchers, and the public, to ensure the benefits of NHS data are maximised for patients, the NHS and the UK economy.
Andrew Davies, ABHI Executive Director said:
The HealthTech industry needs access to high-quality data to support the regulatory process, undertake clinical investigations, train AI tools and understand the clinical impact of innovation. By making NHS data accessible in a secure, trustworthy, streamlined manner the Secure Data Environments (SDEs) are a key building block for innovation, trust, and patient safety. This report highlights the need for a user-centric approach to developing and deploying the SDEs ensuring streamlined governance, interoperability and contracting to support cutting edge research.
As the government prepares for the upcoming Comprehensive Spending Review, the report findings provide a clear roadmap for ensuring NHS data is used to improve patient outcomes, stimulate innovation, and attract global investment.
The recommendations offer NHS England, the Department of Health and Social Care (DHSC), and the Department for Science, Innovation and Technology (DSIT) the opportunity to better align the Data for R&D Programme with industry research needs.
