This year the journal Psychiatric Services launched a new column on Lived Experience Inclusion and Leadership, which constitutes the journal’s first peer-reviewed publication led and co-authored by lived experience leaders. In a comment on the inaugural column authored by Dana Foglesong and colleagues, Professor Nev Jones explains the need for experientially grounded research as a path towards democratizing psychiatric knowledge production.
Increasing attention is being paid to the potential of service users as researchers, knowledge producers, and crafters of mental health policy. Rights-based approaches to psychosocial disability law and the UN’s Convention on the Rights for Persons with Disabilities (CRPD) even require the inclusion of affected populations in decision-making. Proponents of inclusion argue that engagement with service user perspectives is necessary to relieve the epistemic disparities in mental health policy and research.
The practice of peer support comes from the peer support movement that arose in the 1970s as a non-hierarchical, service user-led intervention into mental health systems and a rejection of the dominant medical model of psychiatry.
Characterized in part by the lived experience of both participants and peer support workers with mental health challenges, modern examples of peer support groups include the Hearing Voices Network. Such peer-support interventions have shown that flattening the hierarchical model of service provision for persons with psychosocial disabilities can transform dominant social and political assumptions about mental illness.
As with dominant modes of psychiatric service provision, psychiatric research has historically excluded the perspectives of persons with psychosocial disabilities.
Lived experience-led research, Jones writes, “is scholarship that represents a tangible democratization of knowledge production that contributes to rebalancing epistemic disparities stemming from historical failures to fully and equitably include those whom psychiatric services are designed to serve.”
While Jones notes that peer support has gained attention as a solution for the flaws of traditional mental health service provision, most peer specialists are low-wage workers with few opportunities for career development, and the majority of research on peer support is led by researchers without direct experience as peer supporters.
On the other hand, she expresses “real hope and substantive potential for a very different future. In this future world,” she writes, “those on the receiving end of services, lived experience leaders, and the collective movements that have sustained a multidecade push for experientially grounded change will no longer be marginal players in psychiatric research and research-informed policy, but valued collaborators and leaders.”
That this should one day be the “new normal” in psychiatric research and policy is a future that all democratically-minded people – with or without lived experience – should be working towards.
Jones, N. (2022). Lived Experience Leadership in Peer Support Research as the New Normal. Psychiatric Services 73:2, p.125. https://ps.psychiatryonline.org/doi/epub/10.1176/appi.ps.73201 (Link)