Invisible Participation: Patients with Oncological and Rare Diseases in Russia

Scholars have paid much attention to patients’ participation in healthcare, such as engagement in activities developed by healthcare providers and involvement in patient activism. Our study draws attention to a type of patient participation that has attracted less academic interest—patients’ mundane practices of survival. Bringing together insights from political anthropology, science and technology studies, and the sociology of health, we argue that patients’ everyday practices significantly shape care provision, and thus must be understood as participation in healthcare. We coin the term “invisible participation” to highlight that while patients’ everyday practices constitute participation in their own right, this form of participation remains invisible for scientists, policymakers, and patients themselves. Through ethnographically inspired qualitative study of the practices of patients with oncological and rare diseases in Russia, we distinguish three types of practices that constitute invisible participation: navigating healthcare, filling in for unavailable doctors, and providing access to medicines. We discuss the implications of our findings for both democratic and non-democratic contexts.