Reflections on my role as a mental health service user co-applicant in a randomized control trial

Laura Lea,Sarah Byford,Yve Coney,Clara Strauss,Kate Simms,Rebecca Crane,Natalia Fagabemi,Claire Rosten,Helen Leigh-Phippard,Tony Gurney

doi:10.18546/rfa.04.1.04

Abstract

This is not a research paper but a personal and collective reflection of patient and public involvement (PPI) for the LIGHTMind 2 randomized control trial (www. isrctn. com/ISRCTN13495752). This trial compares two guided self-help psychological interventions for depression, and is delivered in the UK NHS Improving Access to Psychological Therapy services. The paper is the result of my reviewing our PPI 18 months into the trial. The PPI includes myself as a research team member and co-applicant, with lived experience of depression, mindfulness and cognitive behaviour therapy. There is a Lived Experience Advisory Panel of six people with lived experience of depression or mindfulness, who advise the researchers. Two people with lived experience of mental health difficulties and knowledge of PPI attend the Trial Steering Committee. This paper includes comments from some of the other people with lived experience and from researchers involved in the trial, included as co-authors. I offer the Johari window (Luft, 1970) and the 4Pi National Involvement Standards (NSUN, 2018) as a way of positioning the value of PPI. Developing relationships within PPI is identified as a way of moderating the fear that some people experience as they work with researchers. I describe the importance of principles that incorporate explicit statements about the value of PPI.

Highlights

In the UK over the last two decades there has been an increasing commitment to involving members of the public in research in the form of patient and public involvement (PPI), where people with lived experience of the research subject are involved in supporting the development and delivery of the research project
It seems vital that we find ways to involve lived experience colleagues as equal members of research teams, bringing different but valuable expertise and experience to the table
This paper suggests that principles for involvement can guide the process of PPI, enabling inclusion and valuing of lived experience perspectives

Summary

Introduction

In the UK over the last two decades there has been an increasing commitment to involving members of the public in research in the form of patient and public involvement (PPI), where people with lived experience of the research subject are involved in supporting the development and delivery of the research project. Having group agreements for meetings, role descriptions for PPI, and my own principles to work to has helped me ensure fairness to people, enabling relationships that support lived experience colleagues to be involved. Support needs to be in three areas: knowledge about the research process – best provided by the chief investigator or trial manager; knowledge of PPI – best provided by someone who has this experience; and someone to reflect with on the person in the professional role – what it feels like to have lived experience and undertake co-applicant tasks. Further funding should be available to develop the PPI evidence base

Conclusion

Notes on the contributors