Invited to Participate? An Ethnography of Patient Involving E-health in Heart Care

This thesis presents an ethnography of e-health and patient participation in heart care. Drawing on Science & Technology Studies (STS) and Computer Supported Cooperative Work (CSCW), the thesis goes beyond the common narrative of e-health as a solution and vehicle for transforming healthcare towards more patient-centered practices and explores what patient-involving e-health, in practice, can become. With the user test of an e-health system for ICD-patients as the pivotal case, the thesis unpacks what happens when patients are invited to become participants and, in particular, information providers through e-health as well as other devices. It does so from a highly interventionist approach where the author uses her role as facilitator of the user test to conduct an ethnographic experiment. The thesis consists of four papers. Concurrently but with different analytical devices, the papers point out how patient-involving e-health may reinforce 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 in order for care practices to be satisfactory and doable for both parties. The first paper situates e-health among established tools for involving patients as information providers in heart care and identifies central challenges associated with patient participation that may also apply to e-health. The second and the third paper show the specific challenges patients, and subsequently clinicians, encounter when engaging with an e-health system that is vested with multiple ideas about what patient participation involves. Each of these three papers proposes an analytical concept for opening up the workings of patient-involving e-health: ‘participatory scopic devices‘, ‘dialogic filtration work‘, and ‘participatory tactics‘. In particular, these concepts add to the analytics of STS and CSCW for studying sociotechnical reconfigurations of healthcare. However, the concepts may also inform the wider field of research into e-health and patient participation. The fourth paper moves beyond the explorative research aim and translates the ethnographic insights from the user test into a design rationale for patient-involving e-health. The proposed design rationale stresses analytical attention to the situated and diverging concerns among users and promotes iteration and negotiation as methodological cornerstones when designing e-health. Overall, the thesis sheds light on some of the workings and implications of ‘participatory healthcare‘ as it is promoted in and instigated by e-health. It points to the importance of clarifying – in design, policy-making and local practices – the invitations to participate that patients are given, while also recognizing that, in practice, participation will still be both unpredictable and unruly.