Creating positive experiences of involvement in mental health research

Abstract

The importance of patient and public involvement (PPI) in mental health research is increasingly acknowledged by funders, researchers, and patients. However, the impact of PPI on those who bring their own lived experiences to research environments is underexplored. A retrospective reflective approach was undertaken collaboratively by four people bringing lived experiences of mental health difficulties to a study adapting a social network intervention for mental health services. Authors considered their experiences of involvement and how these affected them personally. We identified six characteristics of involvement that benefit not only research quality, but also people participating in PPI activities: reframing painful memories, recognising value, practising reciprocity, bridging gaps, countering stigma, and challenging established narratives. When designing and conducting research, it is important to engage empathetically with how involvement is experienced by different people. Values should be translated collaboratively into action so that unintended harms might be avoided. This Personal View offers reflections and recommendations to support this process.