There has been very little previous research on the topic of public involvement (PI) in non-clinical research. The applicants work in longitudinal population and epidemiological studies and are aware of the importance and difficulty of including the public in this work, partly because these studies do not focus on a specific medical topic or procedure but collect data on a large variety of illnesses, lifestyles, and risk factors. We are also aware that the PI groups which do exist suffer from selection bias, in that the members do not reflect either the participants in observational studies or the background population from which they are drawn. These biases mean that PI groups are not ethnically or socioeconomically diverse and do not equally represent gender groups. This has important implications for the design both of longitudinal studies themselves and secondary epidemiological research using their data if we are to avoid tokenistic involvement and healthy participant bias. Our intention is to involve PI groups in all aspects of the design and conduct of observational studies and to help us to identify future research questions. An appropriate PPI groups could also provide valuable advice on how to recruit and retain certain groups of people.
There is existing evidence (Lang 2022) that although the UK is world leading in including PPI groups in its research, perhaps because of funder stipulations, only 20% of the total number (3000) of studies investigated included PI, and of these ~ only 16% were observational research and ~15% were cohort research. However, this evidence was only drawn from one journal BMJ Open. The potential important benefits of good PI use are well known, but few seem to manage it. Also, PI is seldom if ever evaluated to see what makes a difference to the quality and impact of resulting research. We would like to conduct some research to investigate which methods of recruitment and conduct of PPI are likely to be the most effective. We would then like to start to build capacity in this area and set up some kind of educational package to ensure future proofing.