This position paper has been collectively written and co-produced by the Lived Experience Advisory Board at the ESRC Centre for Society and Mental Health, along with a survivor researcher, lived experience researcher and lived experience facilitator. The paper highlights the value of lived experience involvement in mental health research. It asks what the barriers to ethical and meaningful involvement are and offers insights and advice about how they can be overcome. The paper was co-produced through facilitated reflective workshops that generated questions and themes based on the authors' lived experience of mental health as well as their experiences of doing lived experience involvement work within universities, charities and other organisations. These reflections, along with scholarship on lived experience research, were used to write up the paper. The paper discusses six key aspects of doing lived experience involvement well: understanding what lived experience means, how to move from individual lived experience to impacting research, understanding the value lived experience brings to research, the nature of knowledge, the importance of power, and what research organisations need to hear and understand in order to meaningfully involve lived experience voices in their work. The paper ultimately concludes that the meaningful involvement of lived experience perspectives can have a profound impact on the quality and relevance of mental health research, but research organisations need to be committed and equipped to facilitate this involvement in ethical and equitable ways.
Burgess et al. (Fri,) studied this question.