Unpacking the Impact and Experience of Working With Lived Experience Partners in Mental Health Research-Exploring Research Team and Public Partner Perspectives.

INTRODUCTION

Patient and Public Involvement (PPI) in mental health research is encouraged by funders in the United Kingdom, supported by guidance and best practice standards. This includes a commitment to learning and understanding impact. This paper explores the experiences of individuals who worked together for 7 years within an intervention study to understand differing perspectives and conceptualisations of how PPI shaped the research study.

METHODS

Using an instrumental case study design, qualitative data were collected in three workshops: university-based study team (n = 4), Lived Experience Advisory Panel (LEAP) (n = 5), and mixed composition (n = 8). Two workshops explored study set up and intervention development, the other explored a qualitative process evaluation study within the randomised controlled trial.

RESULTS

We recognised impact as tangible and practical, both facilitated and hindered through relational connections which contribute to ways of working that frame research. Data evidenced that both LEAP and study team members experienced a journey of learning and development in doing PPI that included friction and 'choppy waters'. The study team valued lived experience partners and the knowledge and expertise they brought from the outset. However, issues such as low confidence in doing PPI among study team, changes in PPI team structure, COVID-19 pandemic moving work online and challenging some LEAP members over the relevance of their own lived experiences to the study, meant the journey was at times difficult.

DISCUSSION: Impact is about much more than quantifiable economic value. It is nuanced and benefits from multi-perspective explorations that move beyond surface-level practical observations to achieve deeper understanding of how lived experience expertise shapes complex research processes, across extended time periods, including the role of team dynamics.

CONCLUSION

PPI in research requires flexibility and open-mindedness to create a positive inclusive team culture and benefits from regular reflective learning with open feedback, so that timely tangible changes can be agreed.

PUBLIC CONTRIBUTIONS: This study was designed by LEAP members and the PPI study coordinator employed at a mental health charity. Workshops were co-facilitated by two people working from a lived experience perspective who are lead authors on this paper.

TRIAL REGISTRATION: ISRCTN93895792.