Diversity in patient and public involvement in healthcare research and education—Realising the potential

Abstract

BackgroundPatient and public involvement (PPI) is an increasing priority in health‐related research and education. Attracting and supporting people from different demographic groups to give up their time and get involved is important to help ensure that all parts of society are empowered, represented and their voices heard in decisions that may affect their health and quality of life.Objectives(1) To determine if a demographically diverse cross‐section of society would be interested in contributing to healthcare research and education. (2) To understand factors that can act as barriers and enablers to effective and diverse PPI.MethodPPI survey data was collected via engagement events, with the aim of scoping interest in PPI from a diverse public. A Focus Group study involving members of the public, academic and professional service staff, was then conducted to gain a deeper understanding around the barriers and enablers of diversity within PPI.Results71% of a diverse rich public indicated they would like to get involved in healthcare research and teaching. 76% of survey respondents indicated that they would be happy to share a personal or family experience of healthcare. The two biggest factors impacting on our cohort getting involved are’ availability of time’ and ‘being aware of PPI opportunities’. These factors may disproportionally affect specific groups. Shared and individual PPI enablers and barriers were identified across all stakeholder groups within the Focus Group Study, as well as generic and novel factors that would impact on an institutions’ ability to improve PPI diversity.ConclusionThese data points confirm a demographically diverse public's appetite to get involved in academic health research and teaching. This needs to be recognised and harnessed to ensure public contributor networks are representative of society. Equality Impact Assessments should be undertaken in relation to all PPI opportunities. There is a need to recognise the investment of time and resources required to build mutually beneficial relationships with diverse communities as well as the development of inclusive ‘fit for purpose’ PPI infrastructures to support the uptake of diverse PPI contributors.Public ContributionThis study involved members of the public responding to a short survey. Public contributors made up one of the three focus groups. The School of Medicine lead public contributor was also involved in the preparation of this manuscript.

Lived experience and family engagement in psychiatry research: A scoping review of reviews

“…Limited diversity of engagement was noted by a number of reviews and is a known challenge with PWLE/F engagement. 50 , 51 In understanding engagement, it is important to understand who is engaged and who they represent. However, in the context of PWLE/F as colleagues rather than research participants, alongside disclosure concerns and confidentiality rights, data on their sociodemographic profiles is not generally collected or reported.…”