Emerging practice in mental health patient and public involvement research advisory groups: a narrative review

The involvement of experts by experience in health research is a requirement from major funders across the world. One approach is Patient and Public Involvement (PPI) research advisory groups. This narrative review surfaced emerging practices in these groups based upon research papers that evaluated their own activities. Papers published between 1/1/ 2014 and 10/1/2024 containing advisory group or related terms in the title or abstract were included. Articles had to focus on mental health and describe the evaluation of PPI research advisory groups. Articles where the PPI research advisory group was not the central focus were excluded. We identified 26 papers. Different terms were used and categorised as: Community Advisory Boards; Stakeholder Groups; PPI Groups; Young People Advisory Groups. There was a growth in literature over time; 42% of articles were published in 2023. Youth involvement was covered in 13 papers (50%). Many included a group member as an author (14 papers). Geographically most studies came from UK (n = 10), followed by Australia (n = 5) and Canada (n = 4). Our analysis identified nine themes and 123 sub-themes under: principles and values; group formation; running groups; facilitators; barriers; impacts on PPI group members; impacts on researchers; impacts on mental health research; recommendations. Commonalities in emerging practices included themes relating to: the importance of communication; an inclusive focus ensuring diversity of perspectives; choice and flexibility in how people are involved; creating safe spaces for involvement work; importance of detailed planning processes; and strategies to address power and hierarchy in research. This field of practice is rapidly developing, building on well-established models such as Community Advisory Boards, underpinned by an epistemic justice value base. Our positionality led us to conclude more participatory evaluations from cross cultural partnerships delivering PPI research advisory groups would be beneficial to the mental health research ecosystem. This review would also benefit from an update to capture publications from 2024 onwards. The study was conceptualised and delivered by nine people working from a lived experience perspective in peer research and public involvement. All are authors on this paper.