IJPDS International Journal of Population Data Science

A significant advancement is underway in how health data is accessed and used for research in the UK. In 2023, Health Data Research UK’s (HDR UK) Public Advisory Board, together with the Pan UK Data Governance Steering Group (a working group of the UK Health Data Research Alliance) introduced the Transparency Standards. These guidelines establish clear practices designed to make data access processes understandable, inclusive, consistent, and trustworthy for everyone involved.

Accessing health data in the UK can be confusing and complicated. A review by HDR UK’s Public Advisory Board found that only a few organisations provided clear, accessible information about their data access procedures. It also revealed limited public involvement in decision-making around data access. As Angela Coulter, former Chair of HDR UK’s Public Advisory Board, stated, “One definition of good data governance is that it should be transparent, should be accountable, and it should involve the public.”

A separate review by members of the Pan UK Data Governance Steering Group highlighted how unclear and varied data access processes create barriers, slowing research that could improve lives while increasing administrative burden. Yemi Macaulay, journal article author, emphasises that “data providers prioritising transparency of data access processes mean researchers are able to focus on conducting vital life-saving research, showcasing the benefits to the public.”

In response, HDR UK’s Public Advisory Board and Pan UK Data Governance Steering Group came together to develop the Transparency Standards. Following a funding call supported by the Medical Research Council, nineteen organisations have already adopted these Standards, demonstrating early impact. “For researchers, we have made a very complicated process easier. For the public, it is now clear how rigorous research has to be”, says Katherine O’Sullivan, Operational Lead at Grampian Data Safe Haven, one of the funding awardees. These organisations have created several resources, including new web pages, videos, and case studies, to explain data access processes clearly, making them openly available to all. 

A new article, published in the International Journal of Population Data Science (IJPDS), highlights what truly sets this initiative apart—the wide range of stakeholders involved, including public representatives, the National Health Service, research institutions, national statistical agencies, and organisations at national, regional, and devolved levels. The active role of the public in developing and implementing the Standards has been key to demystify data access for both researchers and the wider data community. As Ester Bellavia, journal article author, puts it, “Transparency is not just a buzzword. It shows people their data matters, their voices are heard, and together we can advance health data research.”

The Transparency Standards encourage a cultural shift, making transparency in data access process the norm rather than the exception. Their adoption through the recent funding call reflects a shared commitment across the data community to meet public expectations and researchers’ needs. Through ongoing collaboration, these Standards can boost public confidence in health data research and accelerate studies that deliver public benefit.

 

Click here to read the full open access article

Ester Bellavia, Senior PPIE Programme Delivery Manager, Health Data Research UK, and Yemi Macaulay, Information Governance Manager, Health Data Research UK

Macaulay, Y., Bellavia , E., Brophy, R., Coulter, A., Glampson, B., Gilbert, B., Holcroft, A., Mayer, E., McNamara, E., O'Sullivan, K., Quattroni, P., Seymour, D., Silove , Y., Tembo, D., Morris, A. D., Smith, C. and Boyd, A. (2025) “Delivering systematic improvements in the transparency of data access processes: setting best practice standards and implementing system-wide improvements through the UK Health Data Research Alliance’s competitive funding call”, International Journal of Population Data Science, 10(2). doi: 10.23889/ijpds.v10i2.2949.