IJPDS International Journal of Population Data Science

The Citizen Panel project at UK Longitudinal Linkage Collaboration (2024 – 2025), the first of its kind, is set to deliver a new model of involving diverse and often seldom heard members of the public in research governance. This new model, published in the International Journal of Population Data Science (IJPDS), focuses on mutual learning, communication and deliberation with public members.

Citizen Panels usually bring people together to inform and influence key decision making in small or large organisations and to express the interest of the public in specific matters, such as those related to science or policy. This Citizen Panel was designed with the goal of enhancing public trust in using research data across lifetime, and in the secure system that allows researchers’ access to such data for societal good.

Lead researcher Dr Lidis Garbovan brought the project to life, starting with ethics approval, recruiting participants, designing the project timeline, content, analysis and academic and creative outcomes. The Panel comprises of 15 members from very different walks of life, age, gender, geography, work experiences and migrant and ethnic groups, and meet regularly both online and in-person for two years (2024-2025). The Panel also has a Steering Group made of public members involved in other research programmes linked to research data across lifetime, who co-lead the project and help with recruitment, training materials and key decisions about the running of the research project.

The role of the Citizen Panel is to answer questions such as: ‘Did UK LLC ask the appropriate questions of the applicants to use the data?’; ‘Are the questions inclusive of seldom-heard communities?’; ‘What or who is missing from the decision-making process?’; ‘‘What questions are not being asked by the research community that should be?’

The Panel members also provide recommendations for decision-making around the data use and, as members of seldom-heard communities, bring unique views and perspectives to help increase confidence in public perceptions and approaches to inclusive research.

The results of the Citizen Panel project will be made publicly available in an academic article and on the UK LLC website and will support the credibility of public deliberations on research processes with data about individuals across their lifetime.

Dr Garbovan explains that “As the Citizen Panel project is moving forward from its initial set-up stage, my aim will be to listen and learn from peoples’ experiential perspectives, to report and reflect on the project status, and to continue being open and honest about the challenges of doing a Citizen Panel project aimed at inclusion of seldom heard groups in longitudinal research for the first time.”

 

Click here to read the full article

Dr Lidis Garbovan, Citizen Panel Lead, UK Longitudinal Linkage Collaboration, University of Edinburgh, Scotland

Garbovan, L., Idemudia, B. O., Flaig, R., Campbell, K., Evans, K., Boyd, A., Cunningham-Burley, S. and Turner, E. L. (2025) “A novel protocol for a ‘Citizen Panel’ for diverse Public and Participant Involvement in the review and development of the process to access data in the UK Longitudinal Linkage Collaboration Trusted Research Environment”, International Journal of Population Data Science, 10(1). doi: 10.23889/ijpds.v10i1.2938.