The Expertise of Patient Organisations: Making Patients’ Voices Heard

Abstract

The article discusses how the Russian patient organisations work on making patients’ needs, experiences, and grievances visible, acknowledged and used by state health governing officials and other experts. First, we present a health governance knowledge hierarchy that reflects different value assigned by healthcare governance actors to different knowledges. At the bottom of the identified hierarchy are the 'lay' experiences of individual patients, whereas policy-­making knowledge ranks the highest. Each type of knowledge is distinguished from others with its own language, logic and, most importantly, material world and forms of action. We advance the two key arguments. First, patient organisations work to facilitate interaction between different actors and co-creation of health governance. Second, a crucial element of this work are organisational operational practices. Several major patient organisations are the key actors being recognised by state institutions. These organisations facilitate collaboration via project and event management, as well as aggregate 'lay' expertise-by-experience of their members and produce knowledge understandable and recognisable by decision-­making actors. Methodologically, the article is based on the descriptive coding of available textual data of the key policy documents, legislation, methodological materials and other documents produced by the Russian patient organisations, as well as online ethnography of project activities, patient surveys, schools of patients and other knowledge disseminating vocational training, public council meetings, and other patient community engagement with state officials. In conclusion, the article summarises how Russian patient organisations strive to make their participation in health governance possible. They do so via reliance on organisational operational skills in maintaining collaborations with other actors, as well as wider knowledge production activities.