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 Announces New Board Members
16 September 2022
Health Data Research UK is delighted to welcome five new trustees to the Non-Executive Board.
Submission to UK Parliament Inquiry and Call for Evidence on the right to privacy in digital data
28 January 2022
Today, Health Data Research UK (HDR UK) have released a response to the Science and Technology Committee’s 'The right to privacy: digital data' call for evidence.