Ecologising Invited and Uninvited Patient Participation in Russia

Area of Science:

• Social Sciences
• Political Science
• Public Health

Background:

• Public participation is often framed as either state-sanctioned (invited) or grassroots (uninvited).
• These two forms of participation are typically viewed as separate and opposing.
• Understanding citizen engagement in authoritarian contexts requires nuanced frameworks.

Purpose of the Study:

• To examine patient organizations' participation in Russian state-controlled deliberation bodies.
• To challenge the binary distinction between invited and uninvited participation.
• To propose an 'ecologising' approach to understand intertwined participation practices.

Main Methods:

• Qualitative ethnographic study.
• Participatory observations of state-controlled public participation bodies.
• Semi-structured interviews and document analysis.

Main Results:

• Russian patient organizations engage in both state-approved and informal, independent practices.
• Subversive and grassroots activities are integrated into their engagement.
• These combined practices help maintain organizational independence against state actors.

Conclusions:

• Invited and uninvited participation are better understood as interconnected ecologies, not mutually exclusive categories.
• An ecologising approach explains how citizens maintain independence in authoritarian settings.
• This framework aids in understanding diverse and seemingly contradictory public participation.