Increasing the transparency of data access procedures is a key priority for Health Data Research UK (HDR UK) and members of the UK Health Data Research Alliance (“Alliance”).
Transparent and clear information about the safe and secure access to and use of health data enables researchers to navigate data access processes for vital life-saving research and helps build and maintain public trust. It promotes accountability by providing insights into how organisations handle and use the data they hold.
The Alliance Transparency Standards, co-developed by the Pan-UK Data Governance Steering Group and HDR UK’s Public Advisory Board (PAB), are designed to guide good practice. The standards include recommendations for communicating data access application processes and criteria, improving website navigation, using appropriate language for diverse audiences, and enhancing communication about the impact of health data research on improving and saving lives.
In September 2023, HDR UK launched a Call for Funding to support Alliance members and other custodians of health and health-relevant data in adopting the Transparency Standards. HDR UK’s PAB played an integral role in scoring and decision-making for this funding call. 19 organisations were awarded funding and worked diligently to complete their projects by 31 March 2024. On 22nd May 2024, we held a Transparency Showcase event, where attendees had the opportunity to meet the project leads, gain insight into the impacts of funded projects, and discover learn lessons from the adoption of the Transparency Standards.
The abstracts, posters and outputs from the Transparency Standards Showcase from individual projects are in the International Journal of Population Data Science. These abstracts demonstrate how improvements in the clarity and accessibility of information about data access processes can benefit both the public and researchers.
The Transparency Standards can be accessed through this link and are summarised below.
