The importance of going beyond consumer or patient involvement to lived experience leadership

Abstract

It has been argued that we have entered a ‘participatory era’ in mental health research and service delivery (e.g. Bromley et al., 2017, p. 295; Siffels et al., 2021). Claims we are experiencing a ‘participatory turn’ are also borne out by more general publication trends. Figure 1 presents a graph of data from Scopus depicting the number of publications about mental health each year that reference common lived experience engagement terms. We celebrate these trends to the extent they reflect a growing interest in how mental health services and systems might beneficially incorporate the input of people who can provide experiential expertise. However, we are also concerned that a growing emphasis on ‘participation’ may lead to exclusion of people with lived experience from higher levels of decision-making, erasure of the history of lived experience advocacy and contribute to the appropriation of lived experience expertise. Show more