Health Data Research UK (“HDR UK”) is excited to announce the inaugural UK Health Data Research Alliance (“Alliance”) Transparency Showcase.

The Transparency Showcase on 22 May 2024 celebrated the impact of a new initiative launched by HDR UK, with funding from the Medical Research Council (MRC), to improve transparency of processes for accessing health and health-relevant data for research.

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. Consequently, increasing the transparency of data access procedures is a key priority for HDR UK and members of the UK Health Data Research Alliance (“Alliance”)

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 October 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. Showcase attendees had the opportunity to meet the project leads, gain insight into the impacts of funded projects, and learn lessons on the adoption of the Transparency Standards. Additionally, a poster award will be announced at the event.

We are pleased to feature the abstracts from the Transparency Standards Showcase 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.

Please contact the authors of these abstracts for further information or collaboration opportunities.

Yemi Macaulay (Conference Director), Andy Boyd and Cassie Smith (HDR UK Trust & Transparency Co-Directors)

Improving transparency of longitudinal health research: glossary, infographic and accessible study summaries

Jan Speechley, Linda Jones, Elena Triantafillopoulou, Nicola Maclean, Hannah Lewis, Maria Jose Rodriguez Pinzon, Rudolf Cardinal, Louise Arseneault
Published online: May 22, 2024

Generation Scotland – Transparency in the data access process

Archie Campbell, Alex Wood, Robin Flaig, Daniel McCartney, Heather Whalley, Cathie Sudlow
Published online: May 22, 2024

Developing meaningful public involvement in HQIP’s data access processes and Data Access Request Group (DARG)

Claudia Snudden, Kim Rezel, Yvonne Silove, Tom Biggs, Wendy Davis, Sarah Markham, Michael Molete
Published online: May 22, 2024

Improving transparency of processes for accessing ICNARC data for research purposes

Caitlan Wolsey, Alexander Bondarciuc, Esther Ansah-Asamoah, James Doidge, David Harrison
Published online: May 22, 2024

Improving Transparency of NHS Trust uses of data for Research Purposes

Claire MacDonald, Anthony Wilson, Adam Shepphard
Published online: May 22, 2024

Skylark Wiki: Accessing research data of the MRC National Survey of Health and Development

Maria Popham, Andrew Wong, Phil Curran, Alisia Carnemolla, Paulina Januszewicz
Published online: May 22, 2024

Implementing Transparency Standards: The ECHILD Project in Action

Katie Harron, Milagros Ruiz Nishiki, ECHILD team
Published online: May 22, 2024

Understanding Longitudinal Population Study Data and the Law

Kirsteen Campbell, Rebecca Whitehorn, Sarah Chave, Michael Gregg, Mhairi Docherty, Rosie Hill, Emma Turner, Katharine Evans, Jacqui Oakley, Robin Flaig, Andy Boyd
Published online: May 22, 2024