By: Paula Rowland, OT Reg (Ont.), PhD
P. Rowland is assistant professor and scientist, Department of Occupational Science and Occupational Therapy, University of Toronto (UT) Faculty of Medicine, Toronto, Ontario, Canada. She is also cross-appointed researcher, Wilson Centre, UT, Toronto, Ontario, Canada.
It was the idea of the “Catch 22” that caught my attention. I first saw the explanation in an article by Learmonth and colleagues in 2009.1 In their article, they talked about a persistent dilemma in patient engagement programs. These are the kinds of programs where patients are asked to use their experiences to help shape decisions about health policy or organizational priorities. However, the authors described a dilemma: Patients that were articulate, well-reasoned, and well-read provided convincing arguments for change, but there would always be someone who would argue, “But these articulate, well-reasoned, and well-read people can’t possibly represent the ‘average’ patient.” And so—in being so skilled at being convincing—these patients became less convincing as credible representatives of the average patient. It was a Catch 22 of patient engagement: One could not be both convincing and credible.
I saw the same dilemma in my own studies of patient engagement. The collective sigh from many of my participants seemed to mean something to the effect of: “The organization just has so many escape hatches! So many ways they can discount what a patient says.”
Catch 22s. Escape hatches. This problem of representation in patient engagement programs does not seem to be just about “finding the right people.” Because it seems that there are no right people. There are always ways in which patients can be too much of something: too articulate, too incomprehensible, too general, too individual, too angry, too eager to please.
It occurred to me that we are asking the wrong questions. Instead of asking how to find the “right” people, the problem of representation might be better addressed by asking “How are the right people made?” What makes someone right for one patient engagement activity but not another? How is credibility constructed in different contexts? And what are the many ways in which we take someone to be representative of someone—or something—else?
To me, these questions cannot be answered by adding more and more recruitment techniques. These are questions wrestled with in the domain of the social sciences. I turned to sociology and political sciences to find a long history of grappling with these very questions. By bringing the heartfelt concerns of educators into conceptual contact with rich social science insights, I hope we can engage in productive conversations about how we should do patient engagement in health sciences education—to what purpose, for whom, and to what ends.
Given what is at stake for patients, students, and the future of our health care systems—these efforts deserve our most careful thought. My recent Academic Medicine article, with my coauthor Arno K. Kumagai, is my small offering to a much bigger effort: creating learning spaces that are sensitive to the incredible polyphonia of the many, many voices of patients.
- Learmonth M, Martin GP, Warwick P. Ordinary and effective: The Catch-22 in managing the public voice in health care? Health Expect. 2009;12, 106–115.