Invisible patient participation in Russia
Patients suffering from cancer or rare diseases face many struggles in Russian healthcare. In this study we explored how these patients addressed problems they encountered. Often the solutions patients came up with were do-it yourself fixes to Russian healthcare. For example, we saw patients finding and sharing answers to their daily struggles in online patient chats. We saw patients redistributing medicines between themselves. We saw patient organisations trying to communicate patients’ problems to the government. In other words, we observed many examples that illustrate that patients’ practices are vital for the operation of healthcare and for quality care. How can we understand these patients’ practices in Russia? What can we learn from this study?
Before we sketch the key insight of this study, it is important to note that the data collection for this study was complicated by external circumstances. The first round of fieldwork happened during COVID-19 pandemic and further data collection was constrained by Russia’s war in Ukraine. Thus, much of the data was collected digitally, online or via Telegram. Notwithstanding these difficulties the study provides interesting insights in patients work and patients’ participation in Russia.
First, the study shows an interesting combination of continuities and discontinuities in Soviet and Russian healthcare policies. While post-Soviet Russian healthcare aimed to introduce neoliberal market elements and to break with paternalistic state healthcare, many Soviet elements remained unchanged, resulting in an underfunded and non-consistent healthcare system in which patients have become responsible for their own health but face constant troubles finding the ways to get the care they need.
Second, the study shows that despite state paternalism patients have always played an active role in Soviet and later in Russian healthcare system. The study shows continuities between practices of the modern-day patient organisations and their Soviet predecessor – disability rights movement. For example, as their predecessors, Russian modern day patient organisations strive for umbrella All-Russian organisational structures, focus on building productive relationships primarily with the state, and conceal their political demands within the social and economic agendas. At the same time, patient organisation had to adapt to changes in socio-political and economic life of the country. In line with neo-liberal character of the reforms conducted by the state, patient organisations started to rhetorically emphasise economic benefits of their demands and substantiate them with “objective”, often quantified, data. With Russian regime solidification and crackdown as well as proliferation of internet, other, less official, hierarchical and visible forms of patient participation have come to fore such as online communities, forums and hashtags flashmobs.
Third, the study shows that patients engage in diverse mundane, informal practices to compensate for the obstacles and gaps encountered within Russian healthcare system and to achieve good care for themselves and other fellow patients. To compensate for the lack of accessible and timely medical information, patients share useful knowledge in specialized online chats or attending patient conferences organised by patient organisations with trusted doctors. They become knowledgeable about their conditions, and often, especially in case of rare diseases, more so than their primary physicians. The accumulation of this patient knowledge empowers patients and allows them to challenge the passive role that is assigned to them by the state. To navigate the complicated labyrinth of Russian healthcare system patients create roadmaps and guidelines, consult each other, and share their personal stories. Due to their agility these navigation tools become indispensable in patients’ journey to care. To understand how, for example, get a referral to a federal hospital, patients turn to the knowledge accumulated in the community to avoid wasting time and making mistakes. Doing so does not only help in practical terms but also reassures patients that they are not alone in their care journey.
These insights into practices of patients with oncological and rare diseases in Russia tell an important story. First, patient participation in Russia consists largely of every day, mundane, informal and non-heroic actions. By exchanging different types of knowledge and experiences, showing solidarity and compassion patients overcome bureaucratic hurdles of Russian healthcare, construct access to medicines, and drive systematic changes. Second, we argue that these practices have direct political implications as the continuous functioning of Russian healthcare could not be ensured without patients’ engagement in the practices described in this dissertation.
These insights contribute to global academic and policy discussions about the importance of patient participation, and specifically about the balance between institutional, formally organized and invited participation and informal, mundane and uninvited participatory practices. Studies from other context, including “Western” and democratic ones, indicate that patients’ mundane participatory practices exist and are important there as well. Thus, our research prompts to bring more recognition and assign greater value to everyday practices of patients that allow healthcare systems to function and provide better care not only in non-democratic contexts like Russia but also in “Western” liberal democracies.
Suggestions for policy makers
Formal forms of patient participation is not the only way patients participate in their healthcare systems. Greater attention needs to be paid to what is done by patients in everyday practice. If this mundane participation is valued and recognised, important lessons could be learned about how healthcare systems could be improved and made more patient-centred.
Connections must be made between formal arenas of patient negotiations and informal practices to stimulate learning processes form patient perspectives.
Patient organisations should allocate enough resources to assist patients in their everyday struggles. By focusing primarily on negotiations with the state or pharmaceutical companies, patient organisations risk to ignore alternative avenues through which change can be realised.
In non-democratic contexts where forms of political participation familiar to the “West” are limited or altogether prohibited, political participation does not seize to exist but takes different forms. Programs that will aim to assist democratisation in these places in the future need to take the already existing alternative forms of political participation into account. Meanwhile, more resources need to be invested in studying these forms of participation.
Similarly, any policy change suggestion or intervention needs to take into account the continuities between policies of different times and pre-existing biopolitical agendas.