Researching involvement in health care practices: interrupting or reproducing medicalization?

Abstract

In this paper we reflect upon and problematize the ways in which 'patient involvement' is interpreted in a substantial proportion of the research literature on involvement and shared decision making. Drawing upon an analysis of this literature we raise concerns about the 'medicalization of involvement' embedded in, and reproduced by, some dominant research lenses, suggesting that this medicalization has powerful discursive and material effects. For example, we suggest that it tends to normalize and arguably trivialize intrinsically problematic and contentious concepts such as 'patient preferences' and, at the same time, to obscure the full range of possibilities for reciprocity in the exchanges between the medical world of the professional and the experiential and narrative world of the patient. We argue that richer conceptualizations of collaboration in clinical work are both possible and very much needed, and we indicate some examples of scholarly resources and perspectives that point towards richer and more defensible accounts of involvement. Overall we call for more attention to the idea of 'epistemic involvement' and much greater cross-fertilization between different epistemological paradigms in this area of research.

Patient involvement and shared decision-making: an analysis of components, models and practical knowledge

“…We have no desire to diminish the significance or usefulness of this body of research, still less to be critical of its quality. But we do wish to highlight the dominant genre and epistemological style of this body of work and to suggest that other genres and epistemologies also have an important role to play in this area [12].…”

Does sharing the electronic health record in the consultation enhance patient involvement? A mixed‐methods study using multichannel video recording and in‐depth interviews in primary care

“…This involves a shift along a scale of involvement outlined by Thompson from paternalism towards shared decision making, and informed decision making (see Table for definitions) . However, exactly how patient involvement should be defined and what it involves remains a subject of debate …”

“…Most studies of this approach tend to strive ‘towards the systematization of practices of involvement’ to model and measure ‘competencies’ . Donetto and Cribb argue this has led to the medicalization of involvement by leaving the definition to professionals and policy makers rather than patients. Shared decision making may also under‐represent patients’ desire to be involved and their perceptions of what this means, both of which vary depending on multiple contextual factors …”

“…[9][10][11][12][13][14][15][16][17][18][19][20][21][22][23] Shared decision making, patients and clinicians deciding together on treatment, is the dominant ideal in much patient involvement research. [17][18][19][20] Most studies of this approach tend to strive 'towards the systematization of practices of involvement' to model and measure 'competencies'. 20 Donetto and Cribb 20 argue this has led to the medicalization of involvement by leaving the definition to professionals and policy makers rather than patients.…”

“…Shared decision making may also underrepresent patients' desire to be involved and their perceptions of what this means, both of which vary depending on multiple contextual factors. [10][11][12]15,[20][21][22][23] In contrast, research starting from the perspective of the patient has found their understandings of involvement tend to focus on communication. This includes a two-way sharing of information, and feeling supported in making contributions to the discussion of choices, but not always being directly involved in making decisions.…”