Formatting patient knowledge and channelling participation: how patient organisations work under authoritarianism

Abstract

Patient experiential knowledge is important for the quality and responsiveness of healthcare systems. However, it is not rare for patients to struggle to have their knowledge recognised as credible and valuable. This study explores how patient organisations work to adjust patient knowledge to formats recognisable and acceptable by healthcare governance decision-makers. Using the case of patient organisations in Russia, we show that such formatting involves changes in language, practices, and materiality that contribute to channelling patient participation into specific routes and forms while marginalising others. Channelling of patient participation, then, rather than being a result of direct coercion, emerges as a distributed process continuously co-produced by a multitude of actors, such as state administration, patient organisations themselves, patient surveys, consultative spaces, and normative acts.

Ecologising Invited and Uninvited Patient Participation in Russia

“…Deliberative bodies are a crucial element of wider work on public issue formation [ 29 , 30 , 31 ]. Therefore, patient participation associated with patient and public councils is not limited to setting agendas, holding meetings and publishing minutes on the website.…”

“…In this framework, state–citizens' interactions, such as citizen assemblies, public hearings and, in our case, patient and public councils, limit the independence of citizens and help cement the dominance of expert‐driven discourses [ 11 , p. 107]. Despite this widely accepted assumption, Russian patient organisations regularly use state‐created deliberative bodies for public issue formation [ 30 , 31 ]. They do so, among other things, with the help of uninvited situations, whether they work beyond meetings, tactics or multiple everyday interactions.…”