A philosophical exploration of experience-based expertise in mental health care

ABSTRACT

The idea that (former) patients are experts who could contribute to mental health care practices is gaining traction. Experts-by-Experience are increasingly employed by institutions to contribute to various levels of care, organization and policy-making. However, the success of this movement is hindered by conceptual and epistemological ambiguities. Our goal in this paper is to turn to the rich philosophical literature to start addressing such ambiguities. We first summarize the advantages of and challenges for Experience-based Expertise movement in mental health care. Next, we explicate the theoretical assumptions of this movement by outlining its salient tenets, with a focus on the Dutch mental care system. We point out three challenges of the movement that could be addressed using the insights by recent work in philosophy of mind and philosophy of science, i.e., (i) conceptual problems, (ii) worries about the subjectivity of the contributions of Experts-by-Experience, and (iii) addressing of the conflicts between the Experts-by-Experience and other experts. We conclude by proposing an enactive affordance-based framework as a candidate for clarifying the goals of the Experience-based Expertise movement in a way that avoids the current conceptual and epistemological problems and opens up venues for its growth.

KEYWORDS:

• Experiential knowledge
• experiential expertise
• mental health care
• psychiatry
• objectivity
• affordances

Acknowledgments

Thanks to Marc Slors and two anonymous reviewers for helpful comments.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1. For arguments about including patients in mental health research see Tekin (2020; 2022) and Gagné-Julien, (2021).

2. The movement of Expertise-by-Experience is widespread in Dutch mental health care. This means relatively much data are available (see, e.g., Leemeijer & Trappenburg 2016; Castro et al. 2019; Karbouniaris et al. 2020), and we draw on those data. One of the authors is Dutch. We think the Dutch situation is representative of the trend or phenomenon we target herein.

3. It is important to note that this movement is not limited to mental health care but appears in regular health care, as well as other domains, such as poverty, youth care, foster care, and so forth. We focus on mental health care.

4. While Borkman (1976) develops this notion as a conceptual tool to study self-help groups (e.g., Alcoholics Anonymous), it had a significant impact on Expertise-by-Experience movement.

5. There are some exceptions, e.g., Boertien & Van Rooijen (2011) and Weerman (2016), however their accounts have not sufficiently addressed the questions we aim to answer here.

6. Castro et al. (2019) derive the following definition which also seems less targeted at phenomenal aspects.

“Expertise by experience is the expertise built on one’s shared, widened, and processed experiences of (1) coping with one’s own body and condition, (2) dealing with health care providers and their organizations, (3) handling social reactions, and (4) relating to peers aiming to expertly transfer these experiences at different levels in order to co-produce ‘services’ and to facilitate empowerment, quality of life, and quality of care” (p.317).

7. David Karp’s qualitative research on affective disorders investigated both experiences of depression (Karp 2017), experiences with antidepressant medication (Karp 2009) and how depression affects family members (Karp 2002).

8. As an anonymous reviewer rightly noted, this phrasing adopts a conceptualization of autism as something that one might ‘have’ Depending on how one sees the relation between autism and the self (e.g., as being separable or inseparable, see Dings & Glas 2020) one may substitute this with alternative phrasings, e.g., ‘what it is like to be autistic’.

9. There have been attempts to develop scales capturing the phenomenality of experience in psychiatric illness (e.g., EASE, cf. Parnas et al. 2005). Whether and to what extent qualitative measurements or phenomenological interviews can investigate the what it is like-ness of experience remains subject to ongoing debate (e.g., Høffding, Martiny & Roepstorff, 2022). Positions range from highly skeptical to highly optimistic, and whichever turns out to be ‘right’ could have important implications for the role of Expertise-by-Experience in mental health care.

10. Thanks to an anonymous reviewer for this.

11. We do not argue that diagnosis is always epistemically harmful, as it can sometimes be helpful for the individual in gaining epistemic access to their mental states. We simply focus here on a potential negative epistemic impact of diagnosis. For more on these issues see, Fellowes, (Forthcoming).

12. Individuals’ reports on how they respond to treatment would fill in the gaps emerging from statistical generalizations about effectiveness of treatments, as they give uptake to the voices of those who have not benefited from a particular treatment. Thanks to the anonymous reviewer for this point.

Additional information

Funding

Roy Dings gratefully acknowledges funding by the Deutsche Forschungsgemeinschaft [grant number 419046236].

Notes on contributors

Roy Dings

Roy Dings is a postdoctoral researcher at the Institute for Philosophy II at Ruhr-University Bochum. His research targets the intersection of philosophy, psychiatry and psychology. He has published on e.g. selfhood and identity, phenomenology of affordances, and memory.

Şerife Tekin

Şerife Tekin is an Associate Professor of Philosophy and Director of the Medical Humanities Program at the Department of Philosophy and Classics at the University of Texas at San Antonio. She has published various articles and edited several volumes dedicated to the philosophy of psychiatry.