Exploring meanings of expert and expertise in patient engagement activities: A qualitative analysis of a pan-Canadian survey

Abstract

In this paper, we engage with claims of expert identities within the field of patient engagement. We do so through analysis of a subset of data collected as part of a 2020 pan-Canadian survey of patient partners. Our analysis is based on 446 qualitative responses to one target question: “Do you think the lived experience you bring to your patient partner role makes you an expert? Please explain in the box below”. Most respondents answered “yes” (n = 253 comments), a sizeable minority answered “no” (n = 161 comments) or declined to answer the target question while still providing comments (n = 32 comments). Through a discursive analysis of the comments, we explore the meanings ascribed to concepts of expert, expertise, and experience. Ultimately, we find nuanced and sometimes contradictory understandings. Thus, dilemmas of expertise in the patient engagement field may not be entirely about claims to specialized knowledge. Instead, discourses seem to be mobilized in response to the thorny, political question: “who is authorized to speak on behalf of patients”? To meaningfully advance the conversation within patient engagement research and practice, we argue for more sociological and political understandings of forms of expertise, objects of expertise, and deployments of expert status in different kinds of knowledge spaces.