Epistemic Injustice and Mental Health Research: A Pragmatic Approach to Working with Lived Experience Expertise

Epistemic Injustice and Mental Health Research: A Pragmatic Approach to Working with Lived Experience Expertise

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In the intricate landscape of mental health research and service delivery systems, the concept of "epistemic injustice" looms large, particularly for marginalized communities like those from racialized backgrounds. Colleague's from McPin and I delve into our experiences of working with 'lived experience' and propose a pragmatic roadmap to confront the challenges at hand.

At the heart of our narrative is the recognition of the pivotal role of lived experience in combating epistemic injustice. We assert the agency and significance of lived experience in shaping the discourse around mental health issues. However, it's vital to acknowledge the complexities inherent in this approach, encapsulated in "elite capture" and "epistemic exploitation."

"Elite capture" is a nuanced concern we've grappled with — a risk that a select, privileged subset within the marginalized group gains disproportionate influence, potentially stifling diversity and the possibility of radical solutions. Simultaneously, "epistemic exploitation" raises its head as a challenge where dominant groups expect marginalized individuals to serve as educators about their oppression, reducing lived experiences to mere testimonies with limited impact.

Drawing from our roles as in intermediaries at Black Thrive and The McPin Foundation, we advocate for a pragmatic approach to navigate these challenges. Here, I share two considerations for researchers and organizations engaged in mental health research, reflecting our journey.

Firstly, let's reflect on the purpose of knowledge creation. As I resonate with the words in our paper, "Research that includes lived experience should take a pragmatic approach to knowledge, considering it as a tool for action." It's not merely about how research is conducted but the outcomes it generates, the societal impact it carries.

Secondly, embedding lived experience roles is crucial. Remuneration, support, and proper employment conditions are not just niceties but imperative for meaningful contribution. In our words, "Research organizations and funders must ensure more people with lived experience define the focus of research and occupy meaningful roles."

In closing, our advocacy for a nuanced, impactful approach to attaining epistemic justice is not just a call to action but an invitation to reflection. As I resonate with one of our core quotes, "researchers and organizations should reflect on whether the knowledge we create serves any useful purpose for those with lived experience."

Read the paper in full below:

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