Competing Agendas in Upstream Engagement Meetings Between Celiac Disease Experts and Patients

Abstract

This article examines discussions between innovators and patient users about emergent medical technologies in the field of celiac disease. Using discursive psychology and conversation analysis, the authors analyze participants’ talk with regard to the social activities performed. They find that the topical agenda, preference structure, and presuppositions incorporated in the innovators’ questions restrict patients’ scope for saying things in and on their own terms. Not participants’ intentions per se but what the questions indirectly communicate profoundly shapes the agenda of these meetings. This may explain why some of the difficulties of innovator-user interaction are persistent and hard to pinpoint.

Turning Experts Into Self-Reflexive Speakers

“…These additional insights are relevant in that they illustrate that DAM workshops with experts may be useful not only in motivating experts to engage more and differently, in actual dialogue with laypeople, but also in increasing our understanding of why and how the hegemony of technical-scientific expertise persists in science communication (for a strikingly similar form of expert hegemony, see Veen, te Molder, Gremmen, & van Woerkum, 2012, on celiac disease). Participants’ utterances with regard to how their positions as experts may be affected by their discursive upgrading or downgrading of lay concerns, suggest that reducing technical-scientific hegemony also requires paying attention to how these subtle but persistent strategies are embedded and sustained in scientific culture (see also Burchell, 2007).…”

“…It is clear from the present study that experts can be made sensitive to the idea that irrespective of their intentions, they may convey that science is the epitome of true expertise and also that this is not necessarily visible in, or derivable from, the sheer content of what they say. So they can be made aware of the subtle character of practices that marginalize other-than-scientific expertise, and how the subtlety of these practices does not prevent these practices from being deeply ingrained, perhaps even makes them possible (see also Veen et al, 2012). However, communication will remain nothing but lubricating oil unless it is recognized that experts treat their scientific identity as bound up with “letting science having the final say.” What should be discussed, therefore, is what exactly scientific expertise entails in and for society and what the role of scientific expertise should be, next to other expertise, for example, when it comes to solving societal problems.…”

What happened to post-cognitive psychology?

“…In the case of the previously mentioned expert questions about the celiac pill, for example, both the conversational normativity is of importance --as the questions were designed to prefer particular answers -and the orientation to rules about what a rational patient or a good expert is (Veen, te Molder et al 2012). The following fragment is taken from one of the patient meetings Yes for us that is a eh very relevant question.…”

The role of genes in talking about overweight: An analysis of discourse on genetics, overweight and health risks in relation to nutrigenomics

“…What we, as users and designers, can expect from nutrigenomics tools, and whether we, for example, want the kind of healthy life that they implicitly stand for, are questions for public debate rather than merely issues of informed choice. The uncovering of underlying assumptions about healthy living and the role of genes therein, both in consumer-citizen and expert-designer discourses (Veen et al, 2011a;Veen et al, 2011b), would be an important starting point. Such a dialogue would also have to include the assumed relation between genetic make-up and behaviour.…”