Design and implementation of a Participant Advisory Committee in Alberta’s Tomorrow Project
Design and implementation of a Participant Advisory Committee in Alberta’s Tomorrow Project
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Original abstract
Abstract Background: Alberta’s Tomorrow Project (ATP) is a large, longitudinal, population-based cohort study in Alberta, Canada. Participant engagement in research is recognized as important, but there are limited examples to inform logistics of engaging participants. The aim of this paper is to describe the design and implementation of a Participant Advisory Committee (PAC) within ATP’s longitudinal health study context. Methods: PAC development involved 3 phases: 1) environmental scan of similar panels, 2) design and recruitment, and 3) launch of the PAC. The environmental scan included literature review, key informant interviews, and analysis of ATP survey data related to engagement. The scan informed the PAC design and recruitment using a two-step screening and interviewing process. The first PAC meeting was launched in March 2020. Pre- and post-evaluation surveys were used to capture feedback on the recruitment process and first meeting. Results: Fifty-seven relevant studies were found in the environmental scan; only five of these had implemented a participant advisory panel to inform ongoing operations. The reported benefits of a participant advisory panel included increased acceptability of study design and tools, while identified challenges included locating and contacting participants, concern over inability to incorporate panel feedback, and administering a panel with a population with a large geographic distribution. In analysis of the ATP survey data (n=21,211), 48% of participants indicated that having a PAC was a good idea and 26% were potentially interested in serving. Interested participants were stratified based on age, sex, and geographical location and 1,000 were randomly selected to receive a screening survey, with 184 responding; from these, 59 were selected for phone interview and subsequently 30 invited to serve on the PAC. Based on evaluation surveys before and after the first meeting, most PAC members (80%) felt the recruitment process was clear and fair and almost all (95%) found the meeting to be a meaningful use of their time. Conclusions: Establishing a PAC for a large, diverse and geographically broad population study required different considerations from most other existing examples of participant groups. PAC’s are potentially very beneficial but require planning and resourcing and there is no one-size-fits-all approach.