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. To suggest that we are just now entering a participatory era ignores (a) the decades of history of lived experience participation that people with experiential expertise fought to initiate (Beresford, 2020). Furthermore, to embrace widespread ‘settling’ for participatory approaches rather than bringing about lived experience leadership in the health sector risks ongoing co-optation of knowledge and tokenistic practices (Scholz, 2022). Indeed, the academic literature has called for lived experience leadership rather than a focus on participation for at least two decades (Gordon, 2005) and advocacy continues today. One of the key findings of our 2016 systematic review of consumer leadership in mental health organisations was that most evidence of lived experience leadership was about organisations run by people with lived experience, with little evidence about lived experience leadership at the higher levels of the health sector or in ‘mainstream’ mental health organisations (Scholz et al., 2017). Participation alone does not go far enough towards redressing epistemic injustice brought about by excluding people with lived experience from control over mental health systems or to realising the benefits of their inclusion (Scholz, 2022). Nonetheless, institutions and organisations continue to talk about participation frameworks and initiatives as ‘novel’. For example, Cochrane recently released what they describe as a ‘bold new framework for consumer (patient, carer, and public) engagement and involvement’ (Cochrane, 2022). Such celebration of a zeitgeist of participation obscures the ongoing undervaluing of lived expertise, and contributes to systems, organisations and projects being stuck in the rhetoric about participation without ever achieving participatory values. Advocates for lived experience leadership argue that people with experiential expertise ought to be ‘involved in, or leading’ agenda-setting or decision-making processes themselves (Roper et al., 2018, p. 2), rather than merely supporting or informing others' agendas or decision-making (as in participatory, engagement or involvement approaches). As instances of policy, services, research and education agendas being set by people with experiential expertise remain scarce, claims that we are in a ‘participatory era’ may overinflate the extent to which people with lived experience are truly partners in or leaders of decision-making, and obscure the fact that experiential expertise is still undervalued (Scholz et al., 2018). Earlier versions of this editorial were presented at the National Cancer Survivorship Conference in Tarntanya/Adelaide in March 2023, at the conference of the International Society of Critical Health Psychology in Rancagua, Wallmapu, in July 2023, and in research seminars to the Victorian Comprehensive Cancer Centre Consumer Engagement in Research Community of Practice in Naarm/Melbourn, the Clinical and Health Sciences Academic Unit in Tarntanya/Adelaide, and the Flinders Health & Medical Research Institute in Tartanya/Adelaide. The authors would like to thank those who organized, attended, and engaged with these presentations. None. The authors have no conflicts of interest to declare. Data sharing is not applicable to this article as no new data were created or analyzed in this study.

Topics & Concepts