Why was this work needed?
Traditional public engagement can often take place after decisions have been made. UK LLC wanted to create a more meaningful approach where citizens could influence governance decisions from the outset. The project aimed to build transparency, trust and accountability while ensuring diverse public perspectives were embedded within decision-making processes.
What happened?
A diverse Citizen Panel was established to review UK LLC's data access and governance processes. Through multiple rounds of learning and deliberation, members developed the confidence to scrutinise processes, provide recommendations and challenge decision-makers. UK LLC responded to recommendations, creating an ongoing feedback loop that informed future discussions and improvements.
What were the benefits?
The Panel strengthened public involvement in governance and led to tangible changes in policy and practice. Its recommendations influenced discussions on fast-track data access, improved transparency in the data access journey, and supported the development of public good and inclusion frameworks. Participants also reported increased confidence, knowledge and a stronger sense of partnership with researchers and with UK LLC.
Who funded and collaborated on this work?
The Citizen Panel was delivered by the UK Longitudinal Linkage Collaboration at the University of Edinburgh, funded by UKRI, ESRC and MRC, and was inspired by Understanding Patient Data's learning governance model. The project combined expertise from public involvement, sociology, anthropology, health research and data science infrastructure, with UK LLC continuing to invest in the Panel's development.
Where can I go for more information?
Further information is available through Understanding Patient Data's work on learning governance and the UK Longitudinal Linkage Collaboration's public involvement programme.
- Page updated: 24 August 2026
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