Lived Experience Roles in Academia: Bridging Mental Health and Higher Education
By: Alejandro Arguelles Bullon GMBPsS MRSPH, Trainee Lecturer in Health at LSST Elephant & Castle Campus
What does it mean to be valued in academia – not just for what you know, but for what you’ve lived? I first began to understand the power of lived experience in research during a conversation with one of my PhD supervisors, who has long championed the inclusion of lived experience roles in academic work. That conversation stayed with me. It made me reflect on how far these roles have come – and where they might be heading.
Over the last few decades, mental health has received growing attention, funding, clinical focus and recognition (Wykes et al., 2021; Foulkes & Andrews, 2023; Liese et al., 2019). There is hardly a day that goes by without some mention of mental health. Most importantly, the shift from a medical model to a recovery-focused model of health has helped individuals and wider society understand the value and impact that people with lived experience of mental health challenges can bring to the workforce (Carr et al., 2023; Jacob, 2015; Cruwys et al., 2020). In many sectors—such as charities or health policy—mental health has been embedded in ways that create roles specifically designed for those actively experiencing mental health difficulties (Robinson & Isaacs, 2024; Stirrup et al., 2021; Davey, 2022). Academia and higher education are no exception. More and more lived-experience researchers (those with personal experience of mental health challenges, employed specifically to design, conceptualise, and share research through that lens) are employed. As universities work to become more inclusive and mentally healthy spaces, lived experience roles are becoming a growing and valuable area to explore.
Why Lived Experience Matters in Academia
What sets lived experience researchers apart as a valuable asset for academic teams? These roles and individuals contribute unique qualities that frameworks or strict protocols cannot directly influence: empathy, relatability, and authenticity. These qualities challenge and enrich traditional research conventions in a field dominated by clinical or theoretical frameworks.
One example that vividly illustrates this shift is the Library of Lived Experience project led by Lancaster University and Lancashire Care NHS Foundation Trust (Lobban et al., 2023). This initiative, co-designed with lived experience researchers, transforms individuals with mental health experiences into ‘Living Books.’ These ‘Living Books’ are not just passive subjects, but active designers, facilitators, and authors, trained and supported to share their stories in one-to-one conversations. These conversations are shared with ‘Readers’—students, staff, carers, or anyone seeking a deeper understanding of mental health.
The outputs from this project reflect the power of co-production and lived experience researchers. By using participatory methods like interviews or creative workshops, this collaborative approach has led to practical, impactful tools, including an implementation guide, a Community of Practice, and resources to evaluate and run Living Libraries across various contexts. This approach challenges long-standing hierarchies in academia and paves the way for more democratic knowledge production, promoting safer, inclusive environments where marginalised voices are central (Sartor, 2023; Beames et al., 2021). The library project demonstrates that when people with lived experience are equal partners in academic work, the outputs can be more relevant, inclusive, and emotionally resonant, offering hope for the future of mental health research.
Challenges and Unanswered Questions
Despite the convincing rationale and growing number of lived experience roles, there are still several challenges that higher education and these roles are working to navigate. One primary concern is that these roles may become tokenistic rather than meaningfully embedded to drive real change (Hawke et al., 2022). If these roles risk becoming symbolic rather than substantive, should universities continue to formalise and professionalise them? Should higher education employers encourage recovery rather than create roles that require individuals to continue experiencing or identifying with mental health difficulties?
Tensions also surface between academic or clinical experts and those in lived experience roles—particularly around role clarity and influence. For instance, academic or clinical experts may question the qualifications and expertise of those in lived experience roles, while the latter may feel their perspectives are undervalued. Whose perspective should carry more weight in decision-making? Moreover, if decisions lead to intended or unintended consequences, who should be held accountable within the scope of each role? (Fraser et al., 2022).
Stigma remains another issue. A lived experience researcher who openly discloses their mental health history may quickly become “the person with mental health” in their team. This is different from a researcher who happens to have mental health experiences but chooses whether or not to disclose them.
Then, there is the question of how the identity of lived experience evolves. What happens when someone recovers—are they at risk of losing their job? Must someone remain unwell to qualify for a role that relies on lived experience of mental health? (Gupta et al., 2023).
I invite you, as readers, to engage in a reflective process on these pressing questions that higher education institutions, policymakers, and research bodies must seriously consider. This reflection is crucial to ensure that lived experience roles are embedded in ways that benefit everyone: the person in the role, the employer, and the people ultimately served by the research.
A Realist Perspective on Lived Experience Mental Health Roles in Higher Education
These ongoing uncertainties on the purpose, structure and future of lived experience roles in higher education have led to wide variation in how these roles are translated into practice. Some roles seem short-term, while others have more fixed-term research responsibilities. This inconsistency, however, reflects a deeper issue. While some lived experience roles may be genuinely empowered to contribute meaningfully to the organisation, others find themselves on the side-lines or struggling to navigate unclear expectations. The structure is unclear—and so, too, is the impact. What makes these roles work well in some places and less so in others? What conditions allow the lived experience role to thrive, rather than survive, in research spaces traditionally shaped by academic and clinical expertise?
My research, viewed through a realist lens, delves into these questions. This approach is not just about determining if lived experience roles are effective in higher education but also about understanding how, why, for whom, and under what circumstances they work or not (Pawson & Tilley, 1997; Pawson et al., 2005). The realist lens is particularly valuable in this context as it allows me to move beyond direct observations, such as numerical outcomes or personal experiences, to reveal the underlying mechanisms that drive the success or failure of these roles, depending on the context (Hunter et al., 2022). The context, as you can imagine, is complex. It is not just about the institution or job description but also about factors like organisational culture, staff relationships, preconceptions about mental health, expectations tied to lived experience, and power dynamics within research teams. These often-hidden dynamics can significantly influence whether someone in a lived experience role can engage in meaningful, sustained work or feels isolated, undervalued, or emotionally burdened.
Through a realist approach this research aims to understand the real-world conditions affecting lived experience roles. This theory-driven exploration will offer practical, evidence-based insights for universities, policymakers, and researchers. The goal is to help create impactful roles that prioritise lived experience in research efforts.
A Call to Reflect
With the increasing presence of lived experience researchers in higher education, we are witnessing a shift from plain tokenism to a more profound and impactful integration. Lived experience brings a unique depth of insights that traditional academic or clinical training alone cannot replicate. These roles have the potential to not only enrich research with authenticity but also to transform the culture of academia into one that is more secure, responsive, and grounded in the real-world experiences of the people it aims to serve.
However, this potential does not automatically lead to real impact. Organisations face complex dynamics, power imbalances, stigma, ambiguity, and identity issues. Creating a role alone is not enough; careful planning is essential. Institutions must ask: What do we hope to achieve by meaningfully integrating lived experience into our organisation?
The realist approach provides a powerful lens to delve into the tensions and complexity of lived experience work in higher education. It prompts us to question whether these roles are effective, how, why, when, for whom, and in what contexts, offering a roadmap and alignment to navigate nuance, context, and contradiction. The objective is to comprehend what promotes their growth and what impedes it. If we aspire for these roles to be more than symbolic, we must persist in asking difficult questions, looking beneath the surface, starting with theory and constructing explanations. When executed proficiently, these roles enhance research and refine the systems that shape it. This is a future that is desirable and one we must strive towards. If higher education is to evolve, it must not just include lived experience, but be shaped by it.
References
Beames, J. R., Kikas, K., O’Gradey-Lee, M., Gale, N., Werner-Seidler, A., Boydell, K. M., & Hudson, J. L. (2021). A new normal: integrating lived experience into scientific data syntheses. Frontiers in Psychiatry, 12. https://doi.org/10.3389/fpsyt.2021.763005
Byrne, L., Roper, C., Happell, B., & Reid-Searl, K. (2016). The stigma of identifying as having a lived experience runs before me: challenges for lived experience roles. Journal of Mental Health, 28(3), 260–266. https://doi.org/10.1080/09638237.2016.1244715
Carr, E. R., Davenport, K. M., Murakami-Brundage, J. L., Robertson, S., Miller, R., & Snyder, J. (2023). From the medical model to the recovery model: Psychologists engaging in advocacy and social justice action agendas in public mental health. American Journal of Orthopsychiatry, 93(2), 120–130. https://doi.org/10.1037/ort0000656
Cruwys, T., Stewart, B., Buckley, L., Gumley, J., & Scholz, B. (2020). The recovery model in chronic mental health: A community-based investigation of social identity processes. Psychiatry Research, 291, 113241. https://doi.org/10.1016/j.psychres.2020.113241
Davey, C. G. (2022). Lived experience and the work we do. Australian & New Zealand Journal of Psychiatry, 57(1), 5–6. https://doi.org/10.1177/00048674221144890
Foulkes, L., & Andrews, J. L. (2023). Are mental health awareness efforts contributing to the rise in reported mental health problems? A call to test the prevalence inflation hypothesis. New Ideas in Psychology, 69, 101010. https://doi.org/10.1016/j.newideapsych.2023.101010
Fraser, C., Carrington, B., Crooks, J., Diffey, J., Evans, N., Kirk, S., Lane, R., McGowan, R., Naughton, G., Pryjmachuk, S., Saund, K., & Temple, R. (2022). A Blueprint for Involvement: Reflections of lived experience co-researchers and academic researchers on working collaboratively. Research Involvement and Engagement, 8(1). https://doi.org/10.1186/s40900-022-00404-3
Gupta, V., Eames, C., Golding, L., Greenhill, B., Qi, R., Allan, S., Bryant, A., & Fisher, P. (2023). Understanding the identity of lived experience researchers and providers: a conceptual framework and systematic narrative review. Research Involvement and Engagement, 9(1). https://doi.org/10.1186/s40900-023-00439-0
Hawke, L. D., Sheikhan, N. Y., Jones, N., Slade, M., Soklaridis, S., Wells, S., & Castle, D. (2022). Embedding lived experience into mental health academic research organizations: Critical reflections. Health Expectations, 25(5), 2299–2305. https://doi.org/10.1111/hex.13586
Hunter, R., Gorely, T., Beattie, M., & Harris, K. (2022). Realist review. International Review of Sport and Exercise Psychology, 15(1), 242–265. https://doi.org/10.1080/1750984x.2021.1969674
Jacob, K. S. (2015). Recovery Model of Mental Illness: A Complementary Approach to Psychiatric care. Indian Journal of Psychological Medicine, 37(2), 117–119. https://doi.org/10.4103/0253-7176.155605
Liese, B. H., Gribble, R. S. F., & Wickremsinhe, M. N. (2019). International funding for mental health: a review of the last decade. International Health, 11(5), 361–369. https://doi.org/10.1093/inthealth/ihz040
Lobban, F., Marshall, P., Barbrook, J., Collins, G., Foster, S., Glossop, Z., Inkster, C., Jebb, P., Johnston, R., Khan, H., Lodge, C., Machin, K., Michalak, E., Powell, S., Rycroft-Malone, J., Slade, M., Whittaker, L., & Jones, S. H. (2023). Designing a library of lived experience for mental health (LoLEM): protocol for integrating a realist synthesis and experience based codesign approach. BMJ Open, 13(3), e068548. https://doi.org/10.1136/bmjopen-2022-068548
Pawson, R., & Tilley, N. (1997). Realistic evaluation. SAGE.
Pawson, R., Greenhalgh, T., Harvey, G., & Walshe, K. (2005). Realist review – a new method of systematic review designed for complex policy interventions. Journal of Health Services Research & Policy, 10(1_suppl), 21–34. https://doi.org/10.1258/1355819054308530
Robinson, S., & Isaacs, A. (2024). Roles, responsibilities and role challenges of lived experience workers in a regional mental health service: a qualitative study. Advances in Mental Health, 1–15. https://doi.org/10.1080/18387357.2024.2436404
Sartor, C. (2023). Mental health and lived experience: The value of lived experience expertise in global mental health. Cambridge Prisms Global Mental Health, 10. https://doi.org/10.1017/gmh.2023.24
Stirrup, V., Jones, F. W., Dimond, I., Green, D., Kaur, J., Wattingham, A., & MacInnes, D. (2021). Developing and evaluating mental health lived experience practitioner (LXP) roles in an NHS trust. Journal of Mental Health, 31(2), 255–262. https://doi.org/10.1080/09638237.2021.1952956
Wykes, T., Bell, A., Carr, S., Coldham, T., Gilbody, S., Hotopf, M., Johnson, S., Kabir, T., Pinfold, V., Sweeney, A., Jones, P. B., & Creswell, C. (2021). Shared goals for mental health research: what, why and when for the 2020s. Journal of Mental Health, 32(6), 997 – 1005. https://doi.org/10.1080/09638237.2021.1898552