Enhancing the UK health data environment

The UK health data environment offers much promise to both UK-based and global researchers. Despite this the UK’s promise does not yet translate into reality, and the current value of the UK’s health data tends to be overestimated by policymakers.

Indeed, the difficulties of accessing UK health data have led to the formation of specialist private companies – such as Sensyne Health (see Box 13).

The Government has recognised the need to improve the system. The importance of the sector to the UK was ] captured in the in the Life Sciences Vision, the previous Life Sciences Industrial Strategy, and DHSC’s Data Saves Lives Strategy, and associated funding has enabled the establishment of HDR UK and the triple structure of the Health Data Research Alliance, Health Data Research Hubs and the infrastructure for the Health Data Research Innovation Gateway (see Box 14).

The biopharmaceutical industry leads the global undertaking of discovering new medicines, developing them and delivering them to patients.

Through our members in the UK, we support the ambition of the Government to increase the proportion of R&D spending towards 2.4% of GDP.

Success in unlocking the promise of UK health data can help attract more of the global R&D effort to the UK, particularly in the area of clinical development: investment in clinical trials is already estimated to bring £192 million worth of value to patients within the NHS,[74] as well as providing valuable experience for the healthcare professionals involved.

This will help to ensure that the NHS is ready to make the most of new medicines as and when they become available.

ABPI’s “Unlocking the promise of UK Health Data” report sets out five priority action areas where shared aims should lead to further collaboration with government agencies, perhaps under memoranda of understanding or sector-deal type projects in order to maintain progress in improving the management and accessibility of UK health data:

1. Reduce fragmentation in the UK health data landscape
2. Increase efficiency of data access processes
3. Enable design, feasibility, recruitment and conduct of all clinical trials
4. Enhance data transparency
5. Harness health data to demonstrate the value of interventions

While focusing on these areas, industry is also committed to work with Government and all stakeholders to ensure that consistently high standards of governance are established and maintained. Looking to the future, it will be also be important to work to ensure the availability of a data science equipped workforce, developing and attracting the right skills into the life sciences sector.

Together, we can unlock the promise of UK health data to support research that will improve patient outcomes, enhance the efficiency of the NHS and support the development of new medicines.