Paper by Lidis Garbovan et al: “A major driver of the transition of population data science to occurring within Trusted Research Environments (TRE) is the concern regarding ‘Social Licence’ which suggests that factors such as demonstrable public good are essential for socially acceptable data use. Yet, whilst public dialogue has helped identify the criteria to define what is ‘in the public good’, we currently lack the methodologies necessary to bring a diverse perspective as to whether we are achieving this. The ‘Citizen Panel’ concept may be a mechanism to integrate a diverse public voice into decision-making as a form of public audit of such data access decision-making.
The concept of a ‘Citizen Panel’ is developed by the organisation Understanding Patient Data as a learning data governance model for data access in Longitudinal Population Studies (LPS) that shift the involvement of the public in data access from a one-way direction to a feedback cycle. To date, this model has not been deployed in the context of data access to public data as recommended by Understanding Patient Data and therefore it is not known whether the model will work as intended or how a panel would be constituted and operate in practice.
LPS employ continuous or repeated measures to follow particular individuals over prolonged periods of time—often decades or lifetimes. They are usually observational in nature and include collections of quantitative and/or qualitative data on any combination of exposures and outcomes.
UK Longitudinal Linkage Collaboration (UK LLC) – the national TRE for data linkage in longitudinal research – has been funded by UK Research and Innovation (UKRI), the Economic and Social Research Council (ESRC) and Medical Research Council (MRC) to pilot the first operational Citizen Panel…(More)”.
