BLOG: Reflections on the UK LLC citizen panel workshop

Lidis Garbovan, Citizen Panel Lead, reflects on a transformative journey shaping inclusive data access through public engagement in research.

By Lidis Garbovan | Research Fellow Citizen Panel Lead

The Citizen Panel is a pilot research project (2024–25) led by the UK Longitudinal Linkage Collaboration (UK LLC), based at The University of Edinburgh and University of Bristol. The project aims to embed public feedback and perceptions into data access and decision-making for linked longitudinal data in a Trusted Research Environment (TRE). The novel methodological approach taken in the Citizen Panel is intended to enhance and complement the existing ways in which public involvement is conducted in Longitudinal Population Studies (LPS), especially focused on maximising diversity and inclusion of seldom-heard communities which are under-represented in LPS. The Citizen Panel is conceptualised as a ‘learning model’ – based on a concept developed by Understanding Patient Data – and its importance lies in shifting the involvement of the public in data access and decision-making from a one-way direction to a feedback cycle.

Delegates of the workshop holding up a visual representation of their ideas

About the workshop 

The Citizen Panel was recruited from both the UK LLC partner LPS and public members who traditionally were not included in longitudinal research. The Panel met online three times from October to December 2024 and included invited guest speakers, Q&A sessions and group discussion. Materials were provided in advance to explain the access process. The meetings included presentations to the Panel, where they had the opportunity to discuss and ask questions about how data access and decision-making work for research using LPS data linked to health and administrative data. Their final meeting, held on 31 January 2025, was an in-person and online full-day workshop at The Exchange, University of Birmingham. The workshop focused on facilitated group discussions, reflections and activities, and included a session on ‘Making a Zine’ to reflect on the importance for each member of taking part in the project. A visual artist took part in the workshop and produced a visual and creative summary of the discussions.

Discussions during the Citizen Panel Workshop

What are the outcomes and next steps? 

During the hybrid workshop, the Panel members reflected on the online meetings in 2024, reviewed the data access process, and made recommendations for involving public and minoritised groups in the decision-making process. For instance, the Panel recommended embedding Equality, Diversity, and Inclusion as a toolkit in the data access process. This would help evaluate the public benefits of research applications and ensure that people with lived experience in the areas being studied are involved. The Panel also made recommendations for co-producing a second stage of the project in 2025 and sharing outputs to wider audiences in creative and accessible formats. 

The Panel is strongly interested in a tangible outcome of the project. The Citizen Panel project is aimed at the inclusion of seldom-heard groups in longitudinal research and the preliminary results show that the Citizen Panel was delivered in a way that the panel members felt valued. The first round of the pilot Citizen Panel provided a set of recommendations that will be reviewed and where appropriate incorporated into the data access process and fed back to the Panel. The learnings will help shape the second round of the project, in dialogue with the Panel Members.

Several blogposts co-produced by the Citizen Panel members about their experiences during the Panel workshop are due to be posted on the UK LLC website.

Members of the Citizen Panel Workshop sitting around a table having a discussion
Publication date