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 signs pledge to improve public involvement in research
15 November 2022
HDR UK joins the Health Research Authority and a host of other organisations to sign the Shared Commitment to Public Involvement in Health and Social Care Research
Joint Statement from Health Data Research UK and NHS England
20 October 2022
The NHS and HDR UK are developing a joint workplan which builds on the letter of support from NHSX for HDR UK’s quinquennial review.