May 13, 2022

Democratizing psychiatric knowledge production through lived experience leadership

This year the magazine Psychiatric services launched a new column on Inclusion and Lived Experience Leadership, which is the journal’s first peer-reviewed publication, led and co-authored by lived experience leaders. In a commentary on the inaugural column written by Dana Foglesong and colleagues, Professor Nev Jones explains the need for evidence-based research as a pathway to democratizing psychiatric knowledge production.

Increasing attention is being paid to the potential of service users as researchers, knowledge producers and mental health policy makers. The rights-based approaches of the Psychosocial Disability Act and the United Nations Convention on the Rights of Persons with Disabilities (CRPD) itself to require inclusion of affected populations in decision-making. Advocates of inclusion argue that engagement with service user perspectives is necessary to mitigate epistemic disparities in mental health policy and research.

The practice of peer support originates from the peer support movement that arose in the 1970s as a non-hierarchical intervention directed by service users in 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 helpers with mental health issues, modern examples of peer support groups include the Hearing Voices Network. Such peer support interventions have shown that flattening the hierarchical model of service delivery for people with psychosocial disabilities can transform prevailing social and political assumptions about mental illness.

As with mainstream modes of psychiatric service delivery, psychiatric research has historically excluded the perspectives of people with psychosocial disabilities.

Experience-based research, Jones writes, “is research that represents a tangible democratization of knowledge production that helps rebalance epistemic disparities resulting from historical failures to fully and equitably include those for whom psychiatric services are designed. to serve”.

Although Jones notes that peer support has gained attention as a solution to the shortcomings of traditional mental health service delivery, most peer specialists are low-wage workers with few opportunities for career development. career, and the majority of peer support research is conducted by researchers with no direct experience as peer helpers.

On the other hand, it expresses “real hope and substantial potential for a very different future. In this future world,” she writes, “those who receive services, the leaders of lived experience, and the collective movements that have supported a decades-long push for experience-based change will no longer be marginal actors. psychiatric research and research-based policies. , but valued collaborators and leaders.

Whether this will ever 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.

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Jones, N. (2022). Leadership from lived experience 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)