Health Data Research UK (HDR UK) is working to unite the UK’s health data to enable discoveries that improve people’s lives. Our vision is for large-scale data and advanced analytics to benefit every patient interaction, clinical trial, and biomedical discovery, and to enhance public health.

We are an independent, registered charity with five years of core funding from nine of the UK’s leading medical research funders, including UK Research and Innovation, the Department of Health and Social Care in England and equivalents in Northern Ireland, Wales and Scotland, and leading medical research charities. HDR UK is a virtual institute, with staff and partners in all four nations of the UK and an office in central London.

The UK is in a unique position to realise the potential of health data, thanks to the NHS and its cradle-to-grave records for a population of over 65 million people. Safe and secure use of this data could improve treatments, deliver better health care and save lives. It could help tackle some of the biggest health challenges worldwide, including cancer, diabetes, and cardiovascular disease. However, access to this data for researchers is often a lengthy, fragmented process, meaning the potential for improving healthcare is far from being realised in full.

HDR UK is committed to accelerating trustworthy access to health data. By working in partnership with the NHS, industry and universities, we aim to facilitate research to better understand diseases and discover new ways to prevent, treat and cure them. Patients and the public are involved throughout, shaping the Institute’s work and ensuring that access to data for research is enabled by safe and secure systems and generates public benefit.

HDR UK welcomes the ICO’s draft transparency guidance, as one of our key values is advocating for transparency across all aspects of the health data research ecosystem. Building and maintaining public trust in use of data for research is a HDR UK priority, and trust cannot be earned without transparency.

Our response to the draft guidance draws from our experiences and includes input from our Public Advisory Board, a group of members of the public which who help guide our work and ensure that it is driven by delivering benefits to patients and the public. We have also consulted and incorporated feedback from some members of the UK Health Data Research Alliance (“Alliance”) – an independent alliance of over 90 leading health and research organisations. HDR UK convenes the Alliance to establish best practice for the trustworthy and ethical use of UK health data for research at scale.

The Alliance and PAB in partnership have developed and published Transparency Standards to guide best practice for transparency within data access processes. To encourage adoption of the Transparency Standards, a funding call was run in September 2023 offering awards of up to £15,000 to support individual data custodians with adoption of the Transparency Standards. We received over 24 applications and awarded funding to 19 projects covering a range of approaches to improve accessibility and transparency.

We would be happy to have a discussion about the issues raised in our response.