Researchers and members of the public alike are set to benefit from improved transparency of data access processes, as a result of newly funded projects that will enhance available information on how to access data. The projects will implement the Alliance Transparency Standards, which were co-developed by the Pan-UK Data Governance Steering Group and HDR UK’s Public Advisory Board (PAB).
This round of funding attracted an impressive number of high calibre applications, especially in light of the short deadline that was provided. HDR UK believes these efforts reflect a genuine interest among data custodians to make the information that is available to the public and researchers accessible, transparent and trustworthy.
Nineteen projects have been awarded funding, with the aim of improving the clarity and accessibility of information about data access processes for the public and researchers. The projects cover a range of approaches to increase transparency, including:
- Website updates that present data access steps in an accessible format. Improvements range from British Sign Language videos and text-only versions for screen readers to audio versions.
- Creation of dedicated webpages targeting different audiences, ensuring information is tailored appropriately.
- Publication of updated open-access application forms and guidance notes, co-created with patients and carers.
- Integration of the Five Safes Framework to explain the data access processes in a transparent and accessible manner, with active involvement from public members.
These quick-fire projects are designed to deliver benefits for researchers and patients in just a few short months. After being selected for funding in October 2023, projects are expected to be completed by the end of March 2024.
Jan Speechley, Public Advisory Board Member (PAB) said:
“The Transparency Standards were developed with HDR UK’s Public Advisory Board, and the board members played an integral role in the scoring and decision-making process for this funding call. It was so interesting and exciting to see the innovative ways Alliance members plan to promote the standards and improve transparency via their websites and other platforms. I look forward to learning about their progress and seeing the improvements this funding call will create.”
Cassie Smith, Head of Legal, Trust and Ethics for HDR UK said:
“Increasing the transparency of data access procedures is a top priority for HDR UK and Alliance members. Transparent information not only enables researchers to navigate data access processes more easily for vital life-saving research but also helps to build and maintain public trust in the safe and secure access of their data.”
Andrew Morris, Director of HDR UK said:
“This is an important UK-wide step in the transparency of the use of health data for research. Transparency promotes accountability by providing information about what organisations are doing with data they hold – and essential for demonstrating trustworthiness.”
Full list of funded organisations:
- HSC Business Services Organisation – Honest Broker Service (HSCNI)
- University College London (ECHILD)
- SAIL Databank (Swansea University Medical School)
- UK Cystic Fibrosis Registry, Cystic Fibrosis Trust
- Healthcare Quality Improvement Partnership (HQIP)
- UCL- MRC Unit – Lifelong Health and Ageing
- Royal Marsden NHS Foundation Trust
- Manchester University NHS Foundation Trust
- Imperial College Healthcare NHS Trust ICHT iCARE
- Generation Scotland – University of Edinburgh
- South London and Maudsley NHS Foundation Trust
- UK Longitudinal Linkage Collaboration (UK LLC)
- “Cambridge University Hospitals NHS Foundation Trust and NIHR- Cambridge Biomedical Research Centre”
- DATAMIND The Health Data Research Hub for Mental Health
- University of Aberdeen – Grampian Data Safe Haven (DaSH)
- Research Data Scotland
- Intensive Care National Audit and Research Centre (ICNARC)
- Optimum Patient Care Limited
- Our Future Health