Institutionalization of health activism in Russia

Abstract

In times of turbulence and new, including epidemiological, risks, health and healthcare issues take on special significance. In modern society, problems related to various illnesses extend beyond purely medical concerns and require public attention. This article is dedicated to the key aspects of institutionalizing activism in the field of health in Russia, particularly focusing on understanding activism by its key actors, defining the problem domain of activism, and typologizing public health activism. The paper includes an analysis of the most significant international researches on the topics of social movements, health activism, and the activities of patient organizations. The empirical basis of the study consists of expert interviews with activists (N=20), primarily working in non-governmental organizations that provide assistance to people with various illnesses, such as HIV infection, mental disorders, and others. It was found that among activists, three main approaches dominate in understanding activism: the first is associated with a mission to improve reality, the second with changing the relationships between patients and doctors, and the third with the implementation of new specific practices in healthcare. The analysis of the problem domain of health activism revealed that, in addition to issues related to receiving adequate treatment, including access to necessary medications, the problem of discrimination based on illness remains relevant in Russia. In this context, positive changes have been noted regarding HIV infection, but the stigmatization of people with mental disorders is still emphasized. According to experts, this is largely the result of low public awareness of mental health issues. The last part of the results presents a typology of health activism. In conclusion, the influence of health activism on social norms and the development of healthcare and medical institutions is emphasized.