Tactics of material participation: How patients shape their engagement through e-health

Abstract

The increasingly popular goal of ‘patient participation’ comes with a conceptual vagueness, at times rendering it an all-too flexible political trope or platitude and, in practice, resulting in unclear invitations to patients. We seek to open up the alluring yet troubling figure of patient participation, by inquiring into how patients enact participation in different ways. Based on close ethnographic engagement in a user test of the e-health system P-Record, we show how a group of heart patients shaped their participation along three lines of tactics of material participation: ‘activism’, ‘partnership’ and ‘compliance’. Our argument is twofold. First, we suggest that any invitation to participate carries the inherent paradox that, although certain ideas of participation may be materially embedded, e.g. in e-health or other ‘participatory technologies’, the enactment of participation cannot be foreseen. To participate is to creatively make do with the situation and technologies at hand, making participation normatively variable in practice. Second, we suggest seeing these normative variations as distinct, though interwoven, lines of tactics that bring about different expectations and, to different degrees, allow patients to handle ambiguous invitations to participate.