Involving patients, participants and the public in designing research analysis: a case study

AbstractBackgroundThe importance of patient and public involvement (PPI) throughout the research cycle is becoming increasingly recognised. Despite this, PPI contributors remain absent from the data analysis stage in many quantitative studies. Here we report on the experience of incorporating PPI in the statistical analysis planning stage of a project investigating associations between cortisol and brain health in the EPAD Scotland cohort. The aim of the initial planning meeting was to explore public and patient understanding of cortisol and brain health and identify important research questions to these contributors.MethodsPPI contributors responded to adverts circulated in three established PPI groups in the United Kingdom (UK), signing up to attend an online meeting. PPI contributors were sent a meeting pack prior to the meeting, including brief pre‐reading and refreshment to enjoy during the meeting. The online meeting began with a brief presentation giving an overview of the topic, with interactive polls and open discussions incorporated into the session plan. All PPI contributors were sent a voucher to recognise their time commitment.ResultsNine PPI contributors joined the meeting, and generally reported a good awareness of the association between cortisol and psychological stress, with less confidence of the association with physical health (Figure 1). Picking from a list of possible analysis options, PPI contributors were most interested in exploring associations between cortisol and depression, sleep and personality, in the context of brain health research (Figure 2). PPI contributors gave insights from their personal experience of neurodegenerative disease and posed further questions for research.ConclusionPPI contributors were valuable stakeholders in the statistical analysis planning process, identifying a number of research topics that would be valuable to explore. Future work will continue to involve PPI contributors to explore questions around cortisol and depression, sleep and personality, as well as associations with occupational and lifetime exposure to stress which were highlighted as topics of interest in the open discussion.