Epistemic injustice and mental health research: A pragmatic approach to working with lived experience expertise

Abstract

“Epistemic injustice” refers to how people from marginalized groups are denied opportunities to create knowledge and derive meaning from their experiences. In the mental health field, epistemic injustice occurs in both research and service delivery systems and particularly impacts people from racialized communities. Lived experience involvement and leadership are often proposed as methods of combatting epistemic injustice, a tool for ensuring the views of people at the center of an issue are heard and can inform decision-making. However, this approach is not without challenges. In this paper, we draw on our work as intermediary organizations that center lived experience perspectives to challenge epistemic injustice. We highlight two problems we have identified in working in the mental health research field: “elite capture” and “epistemic exploitation”. We believe that these problems are barriers to the radical and structural change required for epistemic justice to occur. We propose a pragmatic approach to addressing these issues. Based on our work we suggest three considerations for researchers and our own organizations to consider when involving people with lived experience. These include reflecting on the purpose of creating knowledge, with a focus on impact. Embedding lived experience roles, with appropriate employment, support and remuneration, and acknowledging that it may be necessary to work alongside existing systems as a “critical friend” while developing new spaces and structures for alternative forms of knowledge. Finally, the mental health research system needs to change. We believe these three considerations will help us better move toward epistemic justice in mental health research.

Experience is central and connections matter: A Leximancer analysis of the research priorities of people with lived experience of mental health issues in Australia

“…We noted in the introduction that the issue of meaning being lost in translation within research efforts has been identified in our recent narrative review and synthesis of the priorities for mental health research and translation over the past twelve years [1]. This loss of meaning is an example of the epistemic injustice that is common in mental health care and research [9,23]. Part of the threat to the salient meanings of those most impacted lies in efforts of large-scale studies [e.g., 4, 5, 8] to reach consensus both within and across various groups with interest.…”

“…focus on consensus carries the risk that genuinely diverse views and complex meaning are lost, and trying to achieve this across groups with unequal power in priority-setting will silence some voices, favouring clinical, academic and professional knowledge over lived experience [9,23]. This risk is acknowledged in these other priority-setting studies, with explicit efforts to elevate lived experience voices amongst the many.…”

“…To extend this beyond our own work we have made a searchable database of complete participant responses to the annual surveys freely available on our digital platform [16] to encourage those in research and translation beyond our networks to engage directly with the priorities as they were written. This allows experiential knowledge to be central to our entire mental health research, care and policy system to address the marginalisation perpetuated by epistemic injustice [23].…”

Developing a community-led rare disease ELSI research agenda

“…While there is no standard methodology, a community-engaged research agenda-setting process commits to giving community stakeholders an equal role in knowledge creation from the earliest stages, countering the “epistemic injustice” that has historically reserved this privilege to researchers [ 8 ]. One approach, responsive research, seeks first to empower the least empowered stakeholders by providing them a platform to voice their priorities [ 9 ].…”

A co-design living labs philosophy of practice for end-to-end research design to translation with people with lived-experience of mental ill-health and carer/family and kinship groups

“…The current emphasis on mental health reform, at least in Australia, also means that it is critical to consider how people with lived-experience may increasingly lead or co-lead co-design processes ( 15 ). That means there is a need to attend to co-analysis and interpretation of the results of co-design so that epistemic injustices (how knowledge is formed, shared, implemented, and evaluated) are not repeated inadvertently ( 5 ). In the shorter term, where co-design is espoused, there is a need for actively attending to how power was re-balanced and where designers were positioned within co-design processes.…”