Democratizing Psychiatric Research: Recognizing the Potential and the Limits of Experiential Expertise

Democratizing Psychiatric ResearchRecognizing the Potential and the Limits of Experiential Expertise The author reports no conflict of interests. First, I want to express my gratitude for such thoughtful and generative responses to the manuscript "Why Democratize Psychiatric Research?," which has been in development for several years and is the product of much reflection that has taken place in academic, advocacy, and interpersonal contexts. I am delighted to see such insightful engagement with the piece and to have a chance to respond to both Drs. David Crepaz-Keay and Sam Fellowes here. Given that the authors raise such different questions within their commentaries, I consider each in turn. In his illuminating commentary, Crepaz-Keay makes three important points in response to the epistemic and ethical reasons I lay out as justifications for democratizing efforts in mental health research. First of all, Crepaz-Keay warns that there is "more subjectivity across much of medicine" than in the picture I've painted, and that we might do better to focus on this shared territory, taking up the goal of democratization across all of medicine, rather than risk "othering" psychiatry as uniquely subjective. In this way, Crepaz-Keay emphasizes, mental health service user researchers might "become leaders in progressive medical thinking." I appreciate this call to emphasize the ways in which the importance of subjective experiences cuts across all of medicine and to learn broad lessons from the pioneering participatory work that has been accomplished in the domain of mental health. I agree that much of medicine suffers from a focus on the objective to the neglect of the subjective, and wonder if this focus can sometimes create a distinct kind of worry in territories in which objective measures are widely available. Consider the focus on reducing the size of a tumor at all costs that can sometimes obscure important considerations related to what a good end of life might look like (Gawande, 2014). Particularly End Page 143 within the process of determining what is worth measuring within research (and what is worth treating within clinical contexts), patient voices are essential to making an informed and beneficial decision. I agree with Crepaz-Keay here—this point applies to all realms of medicine. In contrast, I think other kinds of risks arise in domains in which objective measures are not widely available and therefore subjective reports of patients make up an essential part of any diagnosis or assessment. Another area I often think about is placebo studies, and in this space, stereotypes related to 'real' suffering and 'real' healing circulate widely (Friesen, 2019b). Largely, these stereotypes tend to support the importance and reality of that which occurs at the level of the physical or biological and take much less seriously suffering or healing which is thought to be located 'all in the head' (Friesen & Dionne, 2022). These biases also cut across medicine, influencing which patients are seen as trustworthy, dramatic, or worthy of one's compassion. I would argue that they show up especially in the setting of mental health care and research, in part because of the lack of objective measures and physiological explanations. A psychiatrized patient often has nothing physical or objective to point to with regard to their suffering, and so may be at the whim of a provider in relation to whether they are likely to be believed or discredited. As such, we must be especially alert to the unique risks that arise when evidence for suffering comes in a subjective form, and how efforts toward democratization might help reduce such risks. Second, Crepaz-Keay offers an essential intervention in relation to the importance of anti-racism within participatory practices in psychiatry. Although I do make mention of the lack of representation of racialized communities in participatory psychiatric research in discussing the important role that values play in the development of psychiatric knowledge, Crepaz-Keay accurately points out that this point related to representation is cross-cutting, and highly relevant to several of the other reasons I offer for why psychiatry research ought to be democratized. I am grateful for this invitation to look more broadly at how the exclusion of some voices from participatory efforts might apply across...