Accepted paper:

Technologies and tactics of participation: How patients shape their engagement through e-health

Authors:

Karen Dam Nielsen (University of Twente)
Henriette Langstrup (University of Copenhagen)

Paper short abstract:

Paper long abstract:

Patient participation has become a keyword in healthcare, penetrating the interrelated arenas of treatment, research and innovation, policy-making, and market, which make up modern healthcare, and unifying various paradigms within. Yet, despite its dispersed constituent contexts and roots, patient participation remains a rather closed figure with a conceptual vagueness, rendering it, at times, an all-too flexible political trope or simply an empty platitude. We seek to open up and qualify this troubling figure by inquiring into the ways in which patients enact participation and singling these out as distinct operational modes or 'tactics'. Based on ethnographic engagement in a user test of an e-health system for heart patients, we show how patients shaped their engagement across different arenas along four lines of tactics: 'representation', 'collaboration', 'emergency', and 'compliance'. Our argument is twofold. First, we suggest that inherent to any invitation to participate is the paradox that although certain ideas of participation may be inscribed, e.g. in e-health or other 'participatory technologies', the enactment of participation cannot be foreseen since to participate is to 'tinker', that is, to creatively make do of the situation and technologies at hand. Secondly, as illustrated by the empirical case, this tinkering plays out along distinct, yet interwoven, lines of tactics, which bring about certain expectations. We propose that recognition of the potential multitude of participatory tactics (and their respective implications) underscores the need for and may inform more precise invitations to patient participation that better allow for alignment of expectations - and resistance.

panel D1
Technologies of care and participation: Shifting the distribution of expertise and responsibilities