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The Institutionalisation of Lived-Experience

Taming liberatory possibilities?

Written by Scott Fitzpatrick – Centre for Mental Health Research, The Australian National University

In my first piece, I highlighted several issues with the way ‘lived–experience’ is used within mental health research and the practices of knowledge production authorised under its name. In this piece, I would like to extend this work by drawing a number of parallels between lived–experience research and recent research on peer work. In doing so I hope to provoke debate about the liberatory possibilities of critical scholarship, advocacy and support work in these fields, and processes of institutionalisation that frequently impinge upon them.

Like peer work, lived–experience involvement in research is a valuable and essential part of health and medical service system design and delivery. In addition to conducting research that is relevant to community and service–user needs, it can also improve the quality of research design by ensuring research outcomes and methods are informed by lived–experience perspectives (Slattery et al., 2020). This has resulted in opportunistic (and often uneven) forms of collaboration between non lived–experience researchers and those with lived–experience, with repeated claims of tokenism and co-option. However, opportunities have also emerged within university, community–based and governmental settings for those with lived–experience to establish and build careers in research (Kalathil & Jones, 2016).

Recent research on peer work has touched upon the uniqueness of the peer role and the freedom given workers to negotiate the boundaries of their practice to work in flexible non-traditional ways, including recognising the sometimes distressing and disempowering effects of standardised treatment regimens and outcomes (Berry et al., 2011). This research has shown that the practice of peer work is shaped not only by lived–experience, but by vocational education and training (Kessing, 2022). In this view, peer knowledge is seen to constitute a spectrum of knowledge combining expert knowledge with personalised and intuitive lay knowledge (Kessing, 2022).

In much the same way, lived–experience researchers have begun to carve out spaces in which to engage with and transform the languages, concepts, practices and systems of mental health research and care (Menzies et al., 2013). Recognising the disempowering and dehumanising effects of much conventional mental health research, lived–experience researchers draw upon their own experiences, as well as diverse fields of inquiry, knowledge and methodologies to provide a more inclusive view of service-users’ and survivors’ experiences and aspirations.

Despite, positioning themselves in various ways in relationship to mental health professionals and services, lived–experience researchers share a number of values and perspectives. These include inclusivity, collectivity, respect for the experience and viewpoints of others, and anti-oppressive, social justice principles. Research on peer work suggests these values, and indeed the very authenticity of peer work may be compromised by forms of institutionalisation, especially where the peer role is diluted to conform with existing care mandates or subject to processes of socialisation by dominant professional cultures (Cleary et al., 2018; Kuek et al., 2021). The expectation for peer workers to challenge and transform mental health practice, therefore, needs to be balanced against the view that they can do so often within the bounds of non–peer professional practice only (Berry et al., 2011).

The same point of tension exists between the knowledge produced by lived–experience researchers and so-called ‘scientific knowledge’. Evidence hierarchies that privilege specific methods or forms of evidence over others, together with the veneer of scientific objectivity that characterises much mental health research continue to marginalise lived–experience research (Carter et al., 2011). Even within co-created research, non–lived experience researchers may seek to maintain the power, credibility and primacy of their knowledge in relation to those with lived–experience through methodologies that eliminate context, culture and subjectivity from consideration (Fitzpatrick et al., 2023).

Building upon the grassroots work of the service-user and survivor movement, a considerable body of lived–experience research continues to focus on challenging dominant assumptions about mental illness, as well as sanist norms and practices in health services and society. Lived–experience research, then, is very much concerned with addressing the struggles confronting individuals and communities in ways that are ethically and socio-politically engaged. Central to this task is the critical appraisal of psychiatric power, knowledge, diagnoses, treatments and related systems of health care (Bracken & Thomas, 2005).

Such activist impulses do not always fit easily within the parameters of the modern research university. Mobilising against powerful institutions and interests is not easy. Moreover, the vulnerability of lived–experience knowledge to processes of assimilation and neutralisation mean that institutions may be motivated more by preserving their own power than by redressing existing power and knowledge asymmetries (Kalathil & Jones, 2016; Voronka, 2019). Such ongoing challenges are an inevitable part of working within established systems. This is particularly evident when this involves the design and implementation of services within the mental health service system, or when research is produced within the competitive, increasingly commercialised university sector where government and industry funding play a key role in shaping research priorities.

A key point of concern, then, is whether it is possible to work within these institutions without undermining the fundamental values that underpin the service user and survivor movement (Penney & Prescott, 2016). Darby Penney and Laura Prescott (2016) ask whether it is possible to undertake peer work within the mental health system that embodies an ethic of reciprocity without becoming hierarchical? Similarly, as lived–experience researchers we must ask ourselves to what extent can we conduct scholarly work that is curiosity-driven, critical, self–directed and sustainable, rather than being shaped purely by institutional and political–economic interests (Lave, 2012).

“While the spirit of revolution”, to quote Robert Menzies and others (2013, p. 21), “is an intrinsic element of every collective struggle” so too are the immediate challenges. With many peer workers and lived–experience researchers committed to working within existing institutions, spaces that offer autonomy and the opportunity to engage in critical research, teaching and learning need to be fostered and encouraged. Examining processes of institutionalisation across the contexts of peer work and lived–experience research is also vital if the liberatory possibilities of these practices are to be fully realised.



Berry, C., Hayward, M.I., & Chandler, R. (2011). Another rather than other: Experiences of peer support specialist workers and their managers working in mental health services. Journal of Public Mental Health 10(4):238-249.

Bracken, P., & Thomas, P. (2005). Postpsychiatry. Oxford: Oxford University Press.

Carter, S., Rychetnik, L., Lloyd, B., Kerridge, I.H., Baur, L., Bauman, A., et al. (2011). Evidence, ethics and values: A framework for health promotion. American Journal of Public Health 101(3): 465-472.

Cleary, M., Raeburn, T., Escott, P., West, S., & Lopez, V. (2018). ‘Walking the tightrope’: The role of peer support workers in facilitating consumers’ participation in decision-making. International Journal of Mental Health Nursing 27:1266-1272.

Fitzpatrick, S.J., Lamb, H., Stewart, E., Gulliver, A., Morse, A.R., Giugni, M., & Banfield, M. (2023). Co-ideation and co-design in co-creation research: Reflections from the ’Co-Creating Safe Spaces’ project. Health Expectations 26(4):1738-1745.

Kalathil, J., & Jones, N. (2017). Unsettling disciplines: Madness, identity, research, knowledge. Philosophy, Psychiatry & Psychology 23(3-4):183-188.

Kessing, M.L. (2022). Doing peer work in mental health services: Unpacking different enactments of lived experiences. Health Sociology Review 31(1):32-46.

Kuek, J.H.L., Chua, H.C., & Poremski, D. (2021). Barriers and facilitators of peer support work in a large psychiatric hospital: A thematic analysis. General Psychiatry 34:e100521.

Lave, R. (2012). Neoliberalism and the production of environmental knowledge. Environment & Society: Advances in Research 3:19-38.

Menzies, R., LeFrancois, B.A., & Reaume, G. (2013). Introducing mad studies. In B.A. LeFrancois, R. Menzies & G. Reaume (Eds.), Mad matters: A critical reader in Canadian mad studies (pp. 1-22). Toronto: Canadian Scholars Press.

Penney, D., & Prescott, L. (2016). The co-optation of survivor knowledge: The danger of substituted values and voices. In J. Russo & A. Sweeney (Eds.), Searching for a rose garden: Challenging psychiatry, fostering mad studies (pp. 35-45). Monmouth: PCCS Books.

Slattery, P., Saeri, A.K., & Bragge, P. (2020). Research co-design in health: A rapid overview of reviews. Health Research Policy & Systems 18:17.

Voronka, J. (2019). The mental health peer worker as informant: Performing authenticity and the paradoxes of passing. Disability & Society 34(4):564-582.


About the Writer

Scott Fitzpatrick – Centre for Mental Health Research, The Australian National University

Scott is a Research Fellow in the Lived Experience Research Unit at the Centre for Mental Health Research, The Australian National University. Scott is an interdisciplinary scholar whose work is grounded in the sociology of health and illness, public health, and applied ethics. His research interests are suicide, the social and political determinants of health, and lived experience. Scott is especially interested in broadening contemporary ethical discussion of suicide and its prevention within the fields of research, clinical, and public health practice and policy by examining the intersection between knowledge, practice, ethics, and politics.

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