Epistemic in/justice in patient participation. A discourse analysis of the Dutch ME/CFS Health Council advisory process

Abstract

In healthcare settings, patient participation is increasingly adopted as a possible remedy to ill people suffering from ‘epistemic injustices’ – that is to their unfair harming as knowers. In exploring and interpreting patient participation discourses within the 2013–2018 Dutch Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) Health Council advisory process, this paper assesses the epistemological emancipatory value of this participatory practice. It reveals that in the analysed case, patient representatives predominantly offer biomedical knowledge about ME/CFS. They frame this condition as primarily somatic, and accordingly, perceive appropriate diagnostic criteria, research avenues and treatment options as quantifiable, objectifiable and explicitly non‐psychogenic. This paper argues that such a dominant biomedical patient participatory practice is ambiguous in terms of its ability to correct epistemic injustices towards ill people. Biomedicalized patient participation may enhance people's credibility and their ability to make sense of their illness, but it may also undermine their valid position within participatory practices as well as lead to (sustaining) biased and reductive ideas about who ill people are and what kind of knowledge they hold. The final section of this paper offers a brief reflection on how to navigate such biomedicalized participatory practices in order to attain more emancipatory ones.

Psychiatrization, assertions of epistemic justice, and the question of agency

“…The suggested solution here is to develop phenomenological tools jointly with “patients” as well as tailor them to specific “mental illnesses” (Drozdzowicz, 2021 ). Such “biomedicalized participatory practices” (de Boer, 2021 ), and their repeated failure to uphold the distinctiveness of marginalized perspectives within the established hierarchies of knowledge, have already been documented and analyzed in the context of psychiatric and mental health research and praxis (Davidow, 2013 ; Staddon, 2013 ; Brown and Stastny, 2016 ; Carr, 2016 , 2018 , 2019 ; Fabris, 2016 ; Penney and Prescott, 2016 ). This body of critical work, mainly created by authors with first-hand experience of psychiatrization, offers important insights into how efforts to integrate first-person knowledge, in order to transform dominant structures of both mental health service provision and knowledge production, often end up sustaining those structures and ultimately reproducing inequalities.…”