Researching involvement in health care practices: interrupting or reproducing medicalization? Sara Donetto PhD 1 and Alan Cribb PhD 2 1 Post-doctoral Fellow, 2 Professor of Bioethics and Education, Centre for Public Policy Research, Department of Education and Professional Studies, King’s College London, London, UK Keywords epistemic involvement, medicalization, patient involvement, research paradigms, shared decision making Correspondence Dr Sara Donetto Centre for Public Policy Research Department of Education and Professional Studies King’s College London Franklin Wilkins Building Waterloo Road London SE1 9NH UK E-mail: sara.donetto@kcl.ac.uk Accepted for publication: 14 June 2011 doi:10.1111/j.1365-2753.2011.01725.x 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 prob- lematic 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. Introduction 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. Existing work on involvement in clinical encounters is dominated by research studies that aim to define, measure and standardize the main features, rationales and health outcomes of collaborative forms of practitioner–patient interaction. The conceptualizations of involvement in this dominant body of work are, we are suggest- ing here, largely framed by biomedical perspectives. The ‘medi- calization of involvement’ embedded in, and reproduced by, these research lenses has powerful discursive and material effects. For example, it tends to normalize and thereby 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 that the patient brings to the consultation. In this paper we argue that richer conceptualizations of collaboration in clinical work are both pos- sible and very much needed, and more specifically we propose that much greater dialogue and cross-fertilization between different research paradigms and traditions would be an important step in this direction. In the final section we indicate some examples of scholarly resources and perspectives that point towards richer and more defensible interpretations and possibilities of involvement. Dominant discourses of involvement and shared decision making For at least two decades, UK and US health policy and profes- sional guidance have promoted a progressive transformation of health care towards more inclusive and participative philosophies and practices. In both countries scepticism towards the idea that physicians ‘know best’ and necessarily act in the ‘best interest’ of patients, and concerns about the ethical issues around patient consent and about the escalation of health care costs can be dated back to the 1980s [1,2]. In the UK, the new centrality of patient choice to service delivery was officially signalled by the 1989 Department of Health White Paper ‘Working for Patients’ [2,3]. Numerous subsequent policy documents have drawn attention to the increasingly prominent role of discourses of participation in Journal of Evaluation in Clinical Practice ISSN 1365-2753 © 2011 Blackwell Publishing Ltd, Journal of Evaluation in Clinical Practice 1