In September 2021, the UK Government launched a public consultation on reforms to the UK’s data protection regime. Some of the proposals are aimed at improving access to data for scientific research to promote innovation.
Health Data Research UK (HDR UK) welcomes reforms that aim to facilitate the greatest possible scientific and societal benefit from health data research, whilst protecting individuals’ privacy, and we support the UK Government’s ambition to improve researchers’ access to data. However, we do not believe that there is a strong case for many of the legislative changes proposed as regulator guidance would address many of the areas of concern or ambiguity.
We are concerned that some of the proposed changes would put the UK’s data adequacy status with the European Union at risk. We also believe there is a risk that if implemented some of the proposals could damage public trust in the use of their data. We believe that meaningful citizen involvement and engagement in the proposals is needed to demonstrate a trustworthy approach to patients, clinical practitioners and the public.
Health Data Research UK responds to DHSC Data access policy consultation
7 July 2023
Clarifying policy scope, linkage to non-NHS data, the need for bold approaches to harmonised data access processes, and the role of co-design and public involvement in decision making highlighted...
As the NHS turns 75, and Genomics England 10, a data driven golden age for health is possible
5 July 2023
Ten years ago, on the day the NHS was 65, Genomics England was launched. Setup to deliver the 100,000 Genomes Project, it provided evidence to justify use of whole genome sequencing for individual...