HCC talks May – University of Copenhagen

HCC talks May

Karen Dam Nielsen

Invited to participate? Insights from an ethnography of e-health in heart care.

With a growing number of e-health tools, patients are invited to take part in their own treatment in new ways. Yet, the practical implications of this invitation for care practices remain only sparsely uncovered. This talk summarizes my dissertation research on e-health and patient participation in heart care. Drawing on Science & Technology Studies (STS) and Computer Supported Cooperative Work (CSCW), I go beyond the common narrative of e-health as a ‘solution and vehicle’ for transforming healthcare towards more patient-centered and participatory practices and explore what patient-involving e-health, in practice, can become. Through experimental ethnographic work in remote heart care – and with the user test of an e-health system for ICD-patients as the pivotal case - I unpack what happens when patients are invited to participate as information providers through e-health as well as other more ‘mundane’ devices (e.g. paper diaries). In particular, I show how e-health risks reinforcing existing challenges of establishing shared understandings between patients and clinicians of: 1) what constitutes relevant information in the context of care; and 2) how to interpret their mutual (communicative) responsibilities. Overall, the findings shed light on some of the implications of ‘participatory healthcare’ as it is promoted in and instigated by e-health, and they point to the importance of balancing – in design, policy-making and local practices – clarity of the invitations that patient are given with recognition of patient participation as inevitably unruly.