Online Patient Work

Abstract

Patients in Western countries increasingly experience a lack of continuity of care. The aim of this article is to understand how patients with one or more chronic conditions handle and prevent experiences of discontinuity of care by engaging in collaborative – and most often systemically invisible – patient work in peer-led online communities (PLOCs). The article’s analysis is based on 20 interviews with users of two Danish PLOCs and finds that care continuity is primarily addressed in its absence; that is when it has been lacking in systemic experiences, or when discontinuity is anticipated or feared in future encounters. The analysis shows that the collaborative patient work done in online communities can be understood as patients’ attempts to mend discontinuities produced by health institutions. Three dominant mending practices are (1) to interpret or vent systemic information to increase collective understanding and decrease frustration, (2) to prepare for encounters with the system to enable them to be more effective, and (3) to push the system to improve decisions and services linked to treatment and care. Considering these findings, the article concludes that there is a need to acknowledge the collaborative work of patients in PLOCs as an informal contributor to continuity of care.

Keywords

• care continuity
• informal care
• patient communities
• patient work
• social media
• systemic mending