How Lived Experience Advisory Groups Contribute to the Design and Conduct of Mental Health Research

The positive impact of patient and public involvement (PPI) on the relevance, accessibility and acceptability of mental health research is well documented. Much of this reporting comes from researchers; less is known about the perspectives of PPI contributors. We are interested in exploring which issues people with lived experience (LE) prioritise when reviewing mental health research, with a view to identifying some of the underlying factors which facilitate or hinder those impacts.

We conducted a reflexive thematic analysis of meeting minutes reviewing 233 studies from two PPI research advisory groups supported by the Maudsley Biomedical Research Centre over a period of 8 years.

Our results foreground participants' experiences and show that PPI contributors want a greater emphasis on relational ethics within mental health research practice. We have identified key issues that have the potential to have a positive effect on the whole research cycle. These include ensuring fully inclusive research designs and practices, having transparent processes and increasing researcher reflexivity regarding power dynamics, stigma and participants' experiences.

This study demonstrates the potential that PPI has to supplement existing ethical processes and positively impact research processes.

People with lived experience of mental distress were involved throughout the study, including study design, data collection, synthesis and authorship.