From service user to peer researcher: challenges of managing disclosure in scientific paradigms

Introduction



Within the emerging discipline of lived experience research there are some culture clashes and epistemological variations. Working from a lived experience perspective in mental health services research can place a person at the heart of debates and tensions within science. This can be exhilarating and energising but it can also feel isolating and fuel a sense of imposter syndrome. In this presentation we explore the role of disclosure in mental health research drawing upon experiences from 10 years of lived experience in research practice. 



Method



A case study will be presented from the PARTNERS2 study – based upon the work of a research team consisting of research assistants and service user researchers. We documented our disclosure decisions in the recruitment process for a randomised controlled trial (RCT) to highlight the varied and different ways individual team members potentially distorted the set processes for RCTs in science by personalising approaches and engaging potential participants in conversations woven with disclosure. PARTNERS2 was a study recruiting people with a diagnosis of schizophrenia, bipolar and other psychosis. Logs were kept by the research team, interviews with team members held and a group workshop.



Results



One team member will provide a personal perspective on their role in this study and how their own journey has evolved from service user advisor in the PARTNERS2 study LEAP to service user researcher carrying our qualitative research,doing systematic review tasks and leading PPI teams in research studies. How a lived experience emphasis on disclosure sits alongside frameworks in mental health research scientific discourse.