The Trading Zones of Patient Participation: Public Issue Formation in Nondemocratic Situations

This article investigates public issue formation catalyzed by Russian patient organizations (POs) that aim to change healthcare rules and practices following patients' needs and expectations. Drawing on the socio-ontological approach of science and technology studies, which posits that issues do not exist independently of efforts to address them, we identify three main stages of public issue formation in the studied situation: (1) from individual troubles to systemic problems, (2) from systemic problems to shared concerns, and (3) from shared concerns to public issues. Transforming individual troubles into public issues is neither easy nor straightforward. Yet, as the key actors in the process, POs use events like conferences and roundtables, and consultative spaces like public councils to engage with healthcare experts and state policymakers. We propose to view these events and spaces as trading zones. Facilitating public issue formation through trading zones where collaboration with other healthcare governance actors occurs without consensus over meanings and priorities, POs address suffering among patients in nondemocratic situations where expert knowledge dominates and public participation is generally unwelcome. The resulting issues are public in scope and capability of mobilizing action, yet articulated in a de-publicizing manner that conceals conflicting stakes and commitments.