Co‐production in the PREVENT Next Generation Study: methodology and outcomes

Abstract

AbstractBackgroundInvolving patients and the public as stakeholders (hereafter described as contributors) in the design and management of research studies is increasingly recognised as central to conducting ethical, meaningful and translatable research. Consulting and co‐producing are two methods for involving public contributors in the research cycle. This abstract describes the methodology used to establish a co‐production model for the PREVENT Next Generation (NextGen) research program, alongside initial impact the contributors have had on the program. The NextGen research programs aims to explore brain health in young adults (aged 18‐39), and all contributors represent this age group.MethodAdverts appealing for public contributors were sent to voluntary and community sector enterprises, universities, promoted on social media and spread via word of mouth. The first round of recruitment focused on contributors living in North America and Europe, with recruitment underway in Ghana. Contributors watched an introductory video, completed a form to indicate interest and were sent an invite to a virtual meeting. The aim of the initial work was to consider and feedback on the NextGen proposal, beginning the co‐production by identifying topics of interest for inclusion in planned work.ResultPublic contributors joined the initial meetings and were supportive of the need to understand more about brain health in young adults. Public contributors were interested in exploring topics such as the role of sex differences, social relationships and air pollution on brain health. Considering the focus groups (Phase 1 of NextGen), contributors advised having a choice of times that would support adults in work or education to join, as well as expressing a preference for virtual engagement for such studies.ConclusionEmploying a public involvement and co‐production model from the initial design stage of the NextGen study has proven invaluable to identifying topics of importance to include in future studies involving this age group. Future work will continue to develop the NextGen research program work with public contributors. Expansion of the public contributors to represent different global regions is underway, and will be critical to designing an inclusive study that is meaningful to the populations from which participants are enrolled.