Invisible Participation: Patients with Oncological and Rare Diseases in Russia

Abstract

Scholars have paid much attention to patients’ participation in healthcare, such as engagement in activities developed by healthcare providers and involvement in patient activism. Our study draws attention to a type of patient participation that has attracted less academic interest—patients’ mundane practices of survival. Bringing together insights from political anthropology, science and technology studies, and the sociology of health, we argue that patients’ everyday practices significantly shape care provision, and thus must be understood as participation in healthcare. We coin the term “invisible participation” to highlight that while patients’ everyday practices constitute participation in their own right, this form of participation remains invisible for scientists, policymakers, and patients themselves. Through ethnographically inspired qualitative study of the practices of patients with oncological and rare diseases in Russia, we distinguish three types of practices that constitute invisible participation: navigating healthcare, filling in for unavailable doctors, and providing access to medicines. We discuss the implications of our findings for both democratic and non-democratic contexts.

Introduction

The importance of patients’ participation in healthcare has long been recognized by practitioners and researchers alike. In addition, there has been a proliferation of various participatory arrangements in healthcare and a growing body of literature on the co-production of healthcare (Fusco, Marsilio and Guglielmetti 2020). Patients’ participation in setting the agenda of clinical research has also been growing; well-described examples include patient participation in muscular dystrophy research (Callon and Rabeharisoa 2008) and AIDS research (Epstein 1996).

Traditionally, recognition of and scholarly attention to patient's participation in healthcare has been focused on practices that are visible to the state or those governing healthcare systems; are conducted by well-organized groups; and are explicitly aimed at change and improvement (for an overview, see Brown et al. 2010). With the proliferation of digital media, researchers have also focused on how this new means of communication and information-sharing shape patients’ participatory practices. Vicari and Cappai (2016) showed, for instance, how digital spaces provide affordances to rare disease patient organizations by creating opportunities for diversified forms of engagement in health activism and by enabling networking for the production of “crowdsourced health knowledge” (Vicari and Cappai 2016, 1666).

However, recently, scholars have also turned their attention to practices that are mundane and not necessarily intended or thought of as participatory by those performing them. For example, scholars such as Baim-Lance et al. (2019) have highlighted that healthcare services are inevitably co-produced through everyday interactions between patients and clinics. These authors have shown that through simple acts, such as expressing concerns about treatment, tidying the waiting room, or accepting imperfections of service provision, patients co-shape these services. Egher (2019) and Kingod (2020) demonstrated how patients with bipolar disorder and type 1 diabetes co-produced knowledge about how to deal with treatments and everyday disease-related struggles through fleeting and mundane interactions online. This shift in studies of patient participation is in line with developments in the wider field of participation studies, in which the traditional focus on well-organized and institutionalized participation has been complemented by growing attention to “material, embodied, private, digital, uninvited, everyday, mundane forms of public engagement” (Chilvers and Kearnes 2020, 355).

We drew on this body of scholarship to study the practices of participation in healthcare employed by patients with oncological and rare diseases in Russia.

The focus of our study was on the everyday, trivial, fleeting, and uncoordinated practices in which patients engage to receive better care, manage their diseases, reduce complaints, and, ultimately, survive. We argue that these practices constitute what we have termed “invisible participation” in healthcare; as with invisible work (Daniels 1987), invisible participation creates value but remains systematically unrecognized. By introducing this concept, we highlight that the participatory character of the everyday, mundane work regularly done by patients remains invisible to researchers, policymakers, and even the patients themselves.

By drawing from political anthropology, science and technology studies (STS), and the sociology of health, we were able to study practices of invisible participation as intrinsically political acts that inevitably shaped the provided healthcare services. Through this study we responded to the call from Chilvers and Kearnes (2015, 273) to “ecologize participation” and to account for and understand “diversities of participatory practices.” We also engaged with discussions on political participation in non-democratic settings.

In the context of diminishing opportunities for participation in Russia, most political science research has focused on party politics (e.g., Gel’man 2008), governance mechanisms (e.g., Petrov, Lipman and Hale 2014; Szakonyi 2020), and opposition movements (e.g., Greene 2014). Some research has also analyzed the activities of NGOs oriented toward social work that have been relatively successful in influencing policies and addressing their matters of concern through the limited participatory channels offered by the state (Owen and Bindman 2019; Toepler and Fröhlich 2020). The existence of these channels was made possible by the increased interest of the state in the involvement of public actors (e.g., NGOs) in the provision of social services at the beginning of the 2000s. This involvement was envisioned as an opportunity to benefit from these actors’ expertise in the provision of such services (Owen and Bindman 2019). In the 2010s, a number of laws formalized public actors as counselors and quality control agents within both federal and regional levels of the Russian governance system, regulated the state support provided to them, and opened the doors of various councils and committees to representatives of patient organizations.

However, as Aasland, Berg-Nordlie and Bogdanova (2016, 148) have argued, public actors have “very limited decision-making authority,” and participation through channels designated by the state is characterized by the de-politization of matters of concern, gatekeeping, and control over the agenda. Further on we refer to such participation as “official,” “organized,” or “visible” to highlight how certain forms of action and association are foregrounded by being given space in legislation and formal institutions, while others—the everyday, mundane, and sporadic—remain unrecognized, disregarded, and often discouraged. The political character of “visible” actions, such as social services provision or lobbying for certain legislation, has been discussed by political research scholars studying Russia (e.g., Kulmala 2016). However, everyday practices have not been conceptualized as essentially participatory and political by these scholars. By drawing attention to patients’ everyday practices, we make visible how participation is accomplished, even in authoritarian settings.

We begin by delineating the context of the Russian healthcare system. We then outline the theoretical background of our study in political anthropology, STS, and the sociology of health. After describing the methodology of our research, we present the results of the analysis, namely the three types of invisible participatory practices through which we found Russian patients engaging in healthcare. Finally, we discuss our study within the context of current debates on the nature of participation and outline the unique character of invisible participation and its importance in both democratic and non-democratic contexts.

The Russian Healthcare System

After the dissolution of the Soviet Union in 1991, the new Russian state inherited the organization and infrastructure of the Soviet healthcare system. This legacy is preserved in, first, the strong role of the state and the dominance of public service providers and, second, a highly centralized healthcare system. This means that federal medical centers situated (with rare exceptions) in Moscow and Saint Petersburg provide the highest quality, state-of-the-art care, while the quality and quantity of services provided in regional and local clinics vary significantly, depending on the resources available to the regional ministries of healthcare.

To mitigate the negative effects of this Soviet legacy, a number of reforms were carried out to introduce market mechanisms into the healthcare system. Specifically, compulsory medical insurance (CMI) was designed to cover healthcare costs through employer contributions and state budgetary funding. In an attempt to continue the previous Soviet principle of “free healthcare for all,” CMI was intended to cover an extensive list of medical services and pharmaceuticals. However, in practice, there has not been enough funding to provide this coverage to all patients, resulting in refusals of care provision and long wait times (Shishkin 2018). Consequentially, patients have incurred significant out-of-pocket costs, either by using services of private healthcare providers, paid services in public hospitals or by resorting to unofficial payments in the public healthcare system (Shishkin, Potapchik and Selezneva 2014).

Overall, Russian healthcare currently displays an uneasy mix of statist and neoliberal organizational logics (Matveev and Novkunskaya 2022). It is highly bureaucratized and fragmented with multiple infrastructural gaps and breakdowns (Mokhov and Novkunskaya 2021; Temkina, Novkunskaya and Litvina 2022). For patients, these characteristics translate into difficulties navigating the system, long wait times, and an insufficient continuity of care. In addition, due to system constraints (e.g., short appointment lengths) and a lack of professional autonomy, doctors sometimes use khamstvo (rudeness) and adopt a paternalistic approach toward patients, meaning they exercise their symbolic power over them through disrespect, withholding information, manipulation, exclusion from decision-making, etc. (Litvina, Novkunskaya and Temkina 2020; Temkina, Litvina and Novkunskaya 2021).

Construction of access to medicines for patients with oncological and rare diseases serves as an illustrative example of the convolutions and contradictions in the Russian healthcare system. In the case of rare diseases, whether a patient is entitled to free drug provision depends on their age, disability status, and diagnosis, along with other factors. These factors determine under which coverage scheme patients qualify (or fail to qualify). These schemes are numerous and uncoordinated, and thus are difficult to understand and navigate. Moreover, they are managed and budgeted by various administrative bodies at different levels (federal, regional, and local), which greatly influences the availability of and timeliness in the provision of medicines. In the case of oncological diseases, in theory, medicines are covered by CMI and should thus be free for patients. However, in practice, not all drugs are available at every clinic in every region, as some regions do not have the financial resources to allocate toward more expensive treatments. In addition, the responsibility for the availability of drugs to patients is not assigned to any specific person or institution within the healthcare or social care systems, which only contributes to the persistence of disruptions in access to medicines.

The quality of available drugs and access to innovative treatments are also matters of concern shaped by the system's inconsistencies. Deterred by the Russian pharmaceutical market's high barrier to entry, protectionist laws (Zvonareva 2020) and, most recently, the reputational risks of working in the Russian market due to its aggression in Ukraine, foreign pharmaceutical companies have been losing interest in the Russian market, withdrawing from it, or choosing not to enter it with new innovative treatments. Thus, imported drugs have become increasingly inaccessible to Russian patients, leaving them with either locally produced generics or biosimilars that are arguably of lower quality or with no treatment options at all (Talanova 2023; Gross 2024). The problem is exacerbated for patients who rely on the state for drug provision, as procurement laws constrain the access of foreign pharmaceutical companies to public tenders. ¹

Theoretical Background

In our analysis of the practices of invisible patient participation, we drew upon several lines of scholarship: political anthropology, STS, and the sociology of health. In political anthropology, the distinction between “strategies” and “tactics,” as suggested by the philosopher de Certeau (1984), is important. He defined strategies as actions aimed at establishing a desirable order of things by organized actors who have enough will and power to do so. In contrast, he defined tactics as the operations of less powerful actors that make use of the “terrain…organized by the law of a foreign power” (de Certeau 1984, 37). People who employ tactics do not have enough resources to change an imposed strategy; instead, they attempt to subvert and resist it. Because our study focused on the practices of patient communities in Russia—actors that arguably have very limited power and resources—we were particularly interested in tactics.

Scott (1985) studied tactics as a mode of peasants’ everyday resistance to capitalist exploitation. He described their everyday practices of non-compliance, struggle, disagreement, and class solidarity, such as work sabotage, choice of one agricultural technique over another, petty theft, etc., as “weapons of the weak” and established them theoretically as practices of political action despite their mundane and uncoordinated character. Although subsequent political anthropologists have nuanced the understanding of resistance (e.g., Bayat 2012; Lilja et al. 2017), most of them continued to assume an antagonistic relationship between “strategies” and “tactics.”

In her anthropological research of Moscow soup-kitchens in the late 1990s, Caldwell (2004) demonstrated this was not always the case. She found that “agents do not aim to resist or overthrow the system but rather aim to accommodate and refashion both its strengths and weaknesses in order to make it productive” (Caldwell 2004, 37). She saw institutions as composed of actors with their own motives rather than monolithic structures. She argued that mundane practices of economic survival, like acquiring goods through connections or riding a bus without a ticket, shape the structures—in this case the economy or transport systems—by making them habitable and responsive to people's needs. In de Certeau's (1984) terms, Caldwell (2004) saw tactics as politically significant without them necessarily being used to resist the existing order of things.

Further, we drew on STS, the body of literature that argues for the conceptualization of mundane practices as enactments of participation that are intrinsically political. For example, Marres (2010, 2012) coined the term “material participation” to demonstrate how domestic environmental technologies allow for the involvement of citizens in matters of concern through mundane practices, such as using energy-efficient lightbulbs or unplugging a mobile phone charger. Marres thus expanded the focus of attention in studies of participation from organized exercises to mundane practices, and from humans to sociomaterial assemblages that also include technologies, infrastructures, and environmental conditions.

Some STS scholars have linked the concept of material participation with its attention to everyday practices to de Certeau's (1984) concept of tactics. For instance, in their study of patients’ engagement with e-health technologies, Nielsen and Langstrup (2018, 264) defined tactics of material participation as the “creative maneuvering of users and technologies in practice, rather than as intentional acts of defiance against a power hovering above.” They concluded that there was great variation in how patients engaged with participatory technologies and in the norms and purposes they enacted, which greatly shaped the outcomes of such participation. In a similar fashion, Sharon (2015) used de Certeau's model to demonstrate that people who engaged with knowledge of genetic risk do not just subscribe to or reject healthy citizenship discourse but reinterpret, transform, accommodate, and selectively engage with the knowledge to create “livable space where some form of meaningful agency can flourish” (Sharon 2015, 311).

Finally, there are studies at the intersection of STS and the sociology of health that explore the mundane practices of patients in digital spaces. According to Petersen, Schermuly and Anderson (2019, 481), use of the internet and social media by citizens who share “biologically based identities” (e.g., patients) is characterized by extensive consumption and production of knowledge relevant to these biological aspects of their identities, be that genetics or symptoms of a particular disease. The mobilization of both credentialed, scientific expertise and experiential, embodied knowledge in attracting attention to patients’ concerns—evidence-based activism (Rabeharisoa, Moreira and Akrich 2014)—has been proven to be effective for patient organizations and advocacy groups long before the widespread use of the internet.

With internet penetration in the everyday lives of millions of citizens, production and consumption of health-related knowledge has become accessible not only to well-established patient organizations but also to individual or loosely connected patients. However, Petersen, Schermuly and Anderson (2019, 490) argue that evidence-based activism, with its focus on building the credibility of patient-generated knowledge for traditional actors—doctors, scientists, and corporations—has transformed activism “from less of a social struggle for rights to more of a professional and business-like undertaking.”

Still, the affordances of the internet extend beyond credibility struggles. Multiple accounts demonstrate that routine internet-mediated exchanges among patients about their bodies and treatments allow for better, more nuanced care. For instance, Kingod (2020, 165) shows how patients with type 1 diabetes search for and share knowledge on Facebook about how to live with the disease and then tinker with self-care, thus “adapt[ing] successfully to a life with illness.” Similarly, Egher (2019) described how patients with bipolar disorder experiment with their medications by engaging with information from blogs to finetune and tailor their treatments. In his research on online communities of people with emerging uncertain illnesses, Dumit (2006, 588) observed that “[p]atients…collectively discover tactics that allow them, sometimes, to survive.” These studies demonstrate how mundane patient practices result in benefits for those who engage in them. However, their participatory character was rarely discussed explicitly.

In our study, we continued along the lines set by Vicari (2021, 22), who placed the mundane digital practices of patients within “participatory cultures.” By drawing on insights from political anthropology, STS, and the sociology of health and following “a co-productionist, relational and emergent approach to participation” (Chilvers and Kearnes 2015, 15), we proceed to discuss patients’ practices of invisible participation.

Methodology

This research was part of a larger ethnographically inspired qualitative study of practices of constructing access to medicines exercised by patients with rare and oncological diseases in Russia. Our approach was grounded in the ethnographic tradition of political anthropology and STS, which allows for “sensitivity to the complexity of human practice” (Postero and Elinoff 2019, 5).

The Case

In the Soviet Union, most rare diseases and advanced stages of cancer (III and IV) were considered untreatable (Mokhov 2020), and thus very little care was provided to sufferers of these conditions. With the influx of foreign pharmaceuticals and the exposure of Russian doctors to Western biomedical knowledge beginning in the 1990s, as well as with more recent achievements in biomedical science, many of these diseases eventually became either treatable or manageable in Russia. However, as described above, access to this extensive and often expensive care has still been constrained in the Russian healthcare system. Thus, rare and oncological diseases provide a relevant and illustrative case for studying patients’ mundane practices of participation in healthcare.

To locate these practices, we approached patient communities of various types—from loose online patient networks with only several dozens of participants to established registered organizations that unite thousands of patients. For the purposes of this study, we included only patient communities that focused on diagnoses recognized by the International Classification of Diseases, Tenth Revision (ICD-10) and Russian healthcare regulations, thus excluding communities focused on emergent and contested diseases.

Setting

Our study relied on both on-site and online ethnographic work. On-site fieldwork was conducted in Saint Petersburg and its surrounding area in May–July 2021. This area was chosen because of its longstanding tradition of social activism in general (Johnson, Kulmala and Jäppinen 2016) and patient activism in particular (e.g., Nartova, Krupets and Shilova 2020). An exclusive focus on in-person activities could not convey the full spectrum of participatory practices, so we traced the activities of patient communities in digital spaces and the conversations of patients in publicly accessible thematic online chats. The inclusion of such online chats was particularly important because it gave us the insight into patients’ daily interactions.

Data Generation

Our data generation methods included semi-structured interviews with patients, their caregivers in the case of children, and patient activists. We also conducted observations of events organized by patient organizations; and extracted patient conversations from online chats. Other information available online (such as websites and the social media presence of patient organizations), as well as informal conversations with the research participants, enhanced our understanding of the context.

We conducted fieldwork over two periods: from March to July 2021 (onsite and online) and from August to November 2022 (online). Two major events unfolding during these periods—the COVID-19 pandemic and the Russian aggression against Ukraine—significantly influenced our fieldwork, and only online fieldwork was possible during the second time period.

During the first period of our fieldwork, which started in March 2021, we learned about the context of Russian healthcare and the problems patients encountered. Researcher OT then identified key patient organizations that addressed these problems, established contact with them, and interviewed their leaders and members. Other participants were recruited using a snowball sampling technique. The generated data consisted of 14 semi-structured interviews with leaders and members of patient organizations, five observations of conferences that had been arranged by the patient organizations, and one participatory observation of a kick-off meeting for a collaboration project. Due to the COVID-19 pandemic, five interviews were held online, as were five of the observed events. Field notes were taken during the observations.

The second part of our fieldwork, which lasted from August to November 2022, included establishing contact with other patient communities and independent patient activists. Six more interviews were generated, as well as one follow-up interview with the leader of a patient organization that participated in the first round of fieldwork. All interviews at this stage were held online. During both rounds of data collection, the interviews were recorded, transcribed verbatim, and anonymized.

Additionally, online conversations were extracted from a Telegram ² chat in which patients who shared the same oncological diagnosis discussed issues related to their disease. This particular chat was chosen for ethical and technical reasons: The chat was open to any Telegram user via a publicly available link, and the settings of this chat allowed the conversations to be traced back in time and downloaded in a machine-readable format. The latter allowed us to use code created by Researcher OT in Python to anonymize the extracted conversations and arrange messages in a way that allowed easier coding. Conversations from three time periods were extracted: 24 February to 10 March, 2022; 21 March to 3 April, 2022; and 21 September to 5 October, 2022. These timeframes were chosen on the assumption that external events (the start of the war, the first medicine shortages as a result of sanctions, and the beginning of mobilization, respectively) might trigger the generation and discussion of the oncological patients’ survival tactics that were of immediate interest to us.

Data Analysis

Researcher OT conducted the initial thematic coding of the collected interviews and chat extracts. The analysis was guided by the theoretical concepts and research objectives described above; however, it remained open to any new themes that emerged from the collected data. The themes identified in the coding process were juxtaposed against the observation field notes. The research team discussed the coding scheme and reexamined it for better transparency and applicability. This process was repeated three times to ensure the quality of the data analysis and precision of the concepts used.

Ethical Concerns

In our research, we faced two major ethical concerns. First, we were conducting research on political participation in Russia, an authoritarian country where any threat to the status quo and cooperation with foreign institutions could have severe repercussions for individuals and organizations. We ensured the safety of research participants through anonymization and secure storage of all research data. In addition, we did not collect any identifying personal data and obtained only oral informed consent.

Second, a complex, life-threatening condition is a delicate and emotional topic to discuss, and collecting experiences about it requires sensitivity from the researcher. Thus, we made every effort to ensure that participants felt comfortable talking, that they felt no pressure to continue, and that they felt the researcher empathized with their experiences. To achieve this, we confirmed that participants were informed about research goals and procedures before beginning each interview. We ensured that participants were comfortable with being recorded and that they understood they could pause the recording or withdraw entirely from the study at any point. When appropriate, the researcher also briefly indicated having family experiences with oncological diseases and Russian healthcare. Moreover, to compensate for the power asymmetries of academic research, we wrote a non-academic report in Russian in which we summarized the findings of this study, which we shared with the research participants.

This study was reviewed and approved by the Research Ethics Committee of Faculty of Health, Medicine & Life Sciences, Maastricht university (FHML-REC). The approval number is FHML-REC/2021/067. The study was also reviewed and approved by the Ethical Committee of the St. Petersburg Scientific Public Sociologist Organization (“SPAS”). Protocol number 1 from 24 May 2021.

Invisible Participation in Healthcare

In this section, we present our analysis of patients’ practices which we traced within patient communities. These communities not only provide emotional support and contribute to patients’ identity building but also serve as platforms for exchanging tools that significantly improve care available to patients. These tools are often mundane, simple practices that bridge the gaps in Russian healthcare. Individually, they appear as isolated practices of survival; however, when analyzed together, they reveal a pattern of grassroots-level but systematic involvement of patients in shaping healthcare services and formulating matters of collective concern. These practices are hardly perceived by the patients as engagement in participatory activities, yet their impact renders them as such. In our analysis, we distinguished three types of mundane practices of invisible participation, which we describe in detail in the following sections.

Navigating Healthcare: Mapping Routes and Guiding Wanderers

As described previously, Russian healthcare is driven by a bureaucratic logic and thus is difficult to navigate. Instructions on how to orient oneself within this labyrinth are hardly provided to patients by the system itself, but navigation tools are provided by patient communities. They have created guidelines and various forms of roadmaps that are now available online. More established organizations dedicate significant resources to providing personalized advice to anyone who is lost in the healthcare labyrinth and seeks help:

It [patients’ routing] is quite complicated, so to deal with it, charitable foundations set up equal counseling projects. There are volunteers from charitable foundations that help patients [who] usually [help] figure out how to establish the diagnosis and other things. (Patient interview R_13)

In addition to this systematic work that patient organizations perform, online communities also provide more customized situational help. Through everyday interactions in community chats, more experienced patients guide newcomers through the confusing steps of obtaining care. It can be a simple clarification that would save a patient time and trouble, or an improvised step-by-step guide based on one's own experience, as in the following example:

Your husband needs to make punctures of the suspicious lymph nodes before the operation, if he has any. As for the rest, they will perform an operation, remove the lymph nodes that are close to the tumor, and you will need to wait for the histology. Then, after a while, you will go for [radio]iodine [therapy]. Before that, you need to do Tg [thyroglobulin] and TPO [thyroid peroxidase] tests (tumor markers) so you can see how successful [the treatment was], and then you will do the [radio]iodine [therapy] and scan the whole body (scintigraphy or SPECT [single-photon emission computerized tomography] or PET [positron emission tomography]); and before [radio]iodine [therapy] I did a non-enhanced CT [computed tomography] of the lungs but some do a contrast CT of the lungs and neck (but it's possible that it's prohibited to do contrast before the [radio]iodine [therapy]), you need to check with the doctors. [smiling face with smiling eyes emoji] (Telegram chat, timeframe 2)

The complicated Russian healthcare system is not the only in which patients become lost and about which they need advice. Social support is not integrated into medical care provision and thus needs to be sought separately. The complexity of the path for receiving rehabilitation tools and activities, psychological support, disability pensions, etc., as well as the insufficient quantity and quality of the goods and services provided often alienate patients from even trying to receive the help to which they are entitled.

This is where patient peer support becomes indispensable. Patient communities accumulate and share knowledge on how to receive social benefits, assistance, medical equipment, etc. from the state in the same way that they accumulate knowledge on how patients can orient themselves within the healthcare system. In addition, patients share information about opportunities to receive specific services and assistance from independent charity organizations when such help from the public sector is unavailable or inadequate. Moreover, patients share and discuss the practicalities of living with a disease, thus providing each other with knowledge that is not otherwise available. By participating in a patient community, patients do not need to “learn their way around” a disease and healthcare and social support systems through trial and error.

When studying Russian healthcare, one notices very little effort from the healthcare system to orient and guide patients toward necessary care. The information patients receive from hospitals and doctors is fragmented, inconsistent, and often contradictory. As a result, many become lost and appear to “drown” in the “swamp” of Russian healthcare (Denisova, Zvonareva and Horstman 2024). However, others get through it by relying on the patient community and its knowledge and support. A consultation provided by a patient organization, the use of a roadmap published on social media, or a brief clarification from a more experienced chat member are all examples of mundane interactions that increase patients’ chances of finding the best possible care. This helps save patients’ time, prevents them from making costly mistakes, and provides much-needed companionship on their arduous journey toward obtaining care. In contrast to the unwieldy and fragmented Russian healthcare system, the navigation tools that patients create (e.g., roadmaps, improvised instructions) are agile, comprehensive, and adaptive to various situations patients encounter.

By creating ways to better navigate the healthcare system, patients do not resist or subvert it but rather act in a complementary way to make it more productive and habitable. The political power of these practices is precisely in their ability to raise a matter of collective concern—the convoluted organization of Russian healthcare—and fix it, working along or even with the system rather than against it. These practices also enable other more visible, and potentially more contentious, practices of patient participation. This is well illustrated by patients’ reaction to a reform carried out by the Ministry of Health that introduced changes in the route within the healthcare system which oncological patients were stipulated to take when receiving treatments. When these changes were proposed, they encountered profound and prominent criticism from various patient communities because, if implemented, they would have complicated access to high-quality care for regional patients. Thus, from routinely bridging the imperfectly assembled healthcare system, patients shifted to articulating their concerns and expressing critiques of the upcoming reform. However, when their voices were not heard and suggestions were not incorporated in the final document adopted by the Ministry, the community again focused on making the system work in terms of everyday practice rather than attempt to bring about its demise. However, both tactics—vocal and muted—were political acts of formulating and addressing matters of collective concern.

Filling in for Unavailable Doctors: Resolving Medical Uncertainty

Patients with oncological and rare diagnoses experience a plethora of troubling, disturbing, and painful symptoms and (side) effects that come with these complex conditions and their treatments. These physical manifestations are also not stable. They change over time, often unexpectedly, and constitute troublesome experiences for patients. However, receiving personalized and accessible medical advice at moments when it is necessary is difficult due to a lack of continuity of care, system overload, and persistent problems in doctor–patient communication. Thus, patients are caught between uncertainty regarding the biological reactions of their bodies and their doctors’ unavailability or unapproachability:

As they say…if you didn’t die from the disease, you can die from side effects, it's true, all because there's no continuity of care, nobody follows up on the patient…No continuity, no rehabilitation, that's why all these things happen…lethal outcomes, heart failures, something else—all because supportive care must be prescribed, but nobody prescribes this supportive care. (Patient, administrator of a patient community, interview Onc_SpB_3)

To resolve uncertainties, patients turn to their peers for reassurance and (medical) advice, which patient communities readily provide. This communal counseling cannot and does not claim to replace professional medical care, but it allows patients to reconcile their conflicting emotions and translate worrying body signals into passable, predictable illness trajectories:

[Discussion of dosage of radioiodine therapy (RIT)]

(73): I have 9 metastases, why the hell [the dosage] is 3,800… I definitely don’t like [name of the clinic]. I paid specifically for personalized matching of the dosage, but in reality, there is nothing.

(75): No need to panic! This is a good clinic.

(6): Why, you have a good dose. I think it's a great one! Do you think if the dosage is large, it will all be good! I want to remind you how it is! Bilateral eyes dacryostenosis, additional eye surgery, xerostomia, complete absence of saliva, as a result [problems with] teeth, sialadenitis! So, [your dosage is] a well-matched iodine therapy, a competent one! Everything will be fine for you.

(73): Well, my weight is not small, 82

…

(75): Everyone is different!

(13): I agree, it's different for everyone. My weight at the time of RIT was 60 kg.

(73): Thank you, girls! I was close to tears… I thought they were cutting corners on [the dosage] or something

…

(13): Of course not! Wait for the scan result, and take a breath already. Radiation is not a vitamin after all. (Telegram chat, timeframe 1)

While continuity of care is just making its way onto the agenda of Russian healthcare administrators ³ , grassroots patient communities provide continuous “do-it-yourself” (DIY) medical support, fulfilling (to an extent) the demand for it. The quality of such support is a concern for more established patient organizations, while also acknowledging patients’ need for easily accessible medical information. To address this need, they invite trusted doctors to lecture and hold Q&A sessions at patient conferences and schools, publish leaflets about diseases and treatments in accessible language, reassure patients of the credibility of biomedical knowledge, and discourage them from pursuing “alternative” treatments, for example, with homeopathic remedies or sodium bicarbonate.

There is little patients can do about the strategies of healthcare organizations, like the lack of systematic follow-ups and supportive care, insufficient consultation time, and khamstvo (rudeness). Instead, they pursue tactics and address the information vacuum in which the Russian healthcare system leaves them. They absorb biomedical knowledge about their diseases, they share their experience and knowledge with others, and they become expert patients who refuse being paternalized and dismissed by doctors. They ask questions and demand to be included in decisions about their treatment, while encouraging others to do the same.

Engagement in these practices sometimes leads to confrontations between patients and doctors, even to tensions within the medical community. However, much more often, it simply creates a demand for new models of doctor–patient communication. This demand allows for changes in the available care. For instance, doctors, both individually and as groups of professionals, engage with patient communities to address medical concerns (e.g., by participating in patient group chats) or create platforms in which patients’ questions can be answered regularly and systematically. Although sporadic and not institutionalized, these initiatives, together with the peer support, co-produce much more informed and continuous care than that offered by the official Russian healthcare system alone.

Providing Access to Medicines: Protecting Rights and Organizing a “Dallas Buyers Club”

As discussed, a neoliberal logic is one of the two principal types of logic found in the organization of Russian healthcare. One way it manifests is in the disproportionate allocation of responsibility for patients’ health placed on the patients themselves. Thus, when seeking access to medicines, the patient has to be proactive in demanding prescriptions, knowledgeable about their rights, and prepared to actively assert them:

Unfortunately, if the patient doesn’t know that he has rights to all these things [medicines], that he must be provided [with medicines], he encounters an endless number of all kinds of excuses of why they didn’t manage [to provide medicines] but would be happy to. (administrator of a patient community, interview R_SpB_4)

Patients react to this responsibilization by engaging in several practices that facilitate the construction of access. First, they share tactics of re-establishing one's right to free medication—instructions on how and to whom address issues, how to write complaints, and what to do when healthcare administrators do not cooperate. Depending on the resources of the community, the advice comes from an individual's personal experiences, “expert” patients, or professional lawyers. Through patient organizations and online communities, patients become exposed to the idea that it is possible to protect one's rights and become encouraged to do so. Positive examples and peer support are especially important in a context in which violations of people's rights are common and normalized:

They have no right to refuse [to treat] a person. To prove that he was refused [treatment], to protect his rights, he has to write a request to the chief physician saying that “according to such and such [law], I ask to be provided with treatment,” and they are obliged to react within 10 days—to provide an answer. When you have on your hands a written refusal [of treatment], for example…well, usually no one gives a written refusal because it's a violation of the law …so like this, the treatment begins. I have girls [in the community] who are very experienced already; they are already well-known in polyclinics because they immediately go to the chief physician and solve these issues in this way. There is no other way to do it. It is like this in many regions; they simply send you away, tell you to get off, and that's it. And this is considered, well, normal. (patient, administrator of a patient community, interview Onc_SpB_3)

In situations when no legal actions are possible or these actions take too long to generate results, patient communities try to close gaps in the provision of drugs through their own means. When medicines are required, patients communicate their needs to the community and typically find someone who is ready to share from their stock or surplus of drugs, often without expecting anything in return:

It even happens that in some regions, the medicine is about to arrive and someone else there…was sick and did not inject [the medicine], so he has several [extra] vials [of medicine], and they help each other out, they lend…they lend vials [of medicine], and after a while, the patient is provided [with medicine], and he returns [the borrowed amount]. (administrator of a patient community, interview R_SpB_2)

However, solutions offered by patient communities are neither permanent nor easy. The procedures for reestablishing one's right to drug provision, especially in cases when necessary foreign drugs are either not procured by the state or not present in the Russian market at all, require considerable time and effort. For this reason, many patients pay out of pocket to obtain the drugs they need. Even in these cases, patients do not always experience problem-free access to medicines. As previously mentioned, foreign drugs often do not reach the Russian market, and thus, one needs to get hold of them through alternative supply channels. In patient communities, one can (relatively) easily find intermediaries, resellers, and sometimes even volunteers, depending on the gravity of the situation, who are ready and willing to bring in medicines from other countries or send them from other regions where there is available stock:

I bought it [a specific medicine] out, and I’m waiting for shipment from Belarus but only [a specific brand of medicine], and at this exchange rate, it turned out to be 350 rubles per package. [emoji person facepalming] (Telegram chat, timeframe 1)

By sharing medicines and tactics on how to obtain them—from the state or from other sources—patients address problems accessing needed pharmaceuticals. They create safety nets that allow them to resist infringement on their rights and survive through shortages and delays in provision. The success of these safety nets depends greatly on patients’ knowledge of the system, their ability to navigate it, speak its language, and, ultimately, play by its rules. Despite being temporary solutions, these safety nets created by patient (online) communities absorb the impacts of malfunctions and uncertainties in the Russian healthcare system, making it more livable and passable for patients.

Discussion

The academic literature on the co-production of healthcare stresses the importance and added value of patients’ participation, but a large part of this literature focuses on patient participation initiated and invited by healthcare organizations and administrations. STS scholars who study the activities of well-established patient organizations and the practices of individual patients pay more attention to patient participation through bottom-up approaches; however, it is usually the knowledge production aspect of these activities and practices that is the main focus of their studies.

In our research, by drawing on political anthropology, STS, and the sociology of health, we suggested that patients’ mundane practices of survival are politically significant and must be considered acts of participation in healthcare. We demonstrated that participatory character of these practices can be discerned from the significant extent to which they shape the functioning of the healthcare system and the services it provides. We argued that everyday patients’ practices are crucial for the production of better care.

In our study we focused on three distinct groups of patients’ practices that address problems of the Russian healthcare: practices of navigating the system, sharing biomedical and experiential knowledge, and constructing access to medicines. As such, these practices are not unique to the Russian context, however they stem from and feed into a very specific infrastructural and institutional context. Therefore, in the healthcare system that is fragmented and riddled by regional disparities, being able to effectively navigate the system does not just play a crucial role in patients’ survival but also becomes a matter of collective concern that allows for patients’ mobilization and collective action. When the healthcare system struggles to satisfy patients’ demand for accessible medical information, and doctor–patient communication is often paternalizing and dismissive, patients’ practices of sharing knowledge about the disease do not only help patients to better understand their bodies but also equip them with tools to counteract rudeness and prompt doctors to initiate change. Similarly, patients’ practices of accessing the medicines encourage them to protect their rights despite the artificially created scarcity of the pharmaceutical market and widespread conviction that justice is not attainable for an ordinary person.

Our analysis revealed that patients’ mundane practices did not just constitute participation because of their profound influence on how patients experienced the healthcare system but also because they created a type of patient and modus operandi that were different from those envisioned and practiced by the healthcare system. Confronted with indifference and rudeness, patients may feel powerless, abandoned, and lost, no matter which disease they face or the healthcare system in which they find themselves (e.g., Barker 2002; Russell et al. 2022). Engaging in the type of practices for protecting rights, resolving medical uncertainty, and mapping routes we have documented in this article allows people with rare and oncological diseases in Russia to exchange help, sympathy, and compassion.

In their review, Kingod et al. (2017) demonstrated that patients repeatedly come together to support each other emotionally and validate each other's alienating experiences. We argue, however, that in the Russian healthcare system, where many patients feel that “no one cares” about their troubles, kindness and attentiveness to each other not only contributes to the formation of a specific illness identity but also becomes a statement on how healthcare can function differently, thus undermining a system that was designed to rather treat the country's population as a whole than individual patients with their own needs and experiences in particular.

Moreover, patients in Russian healthcare often feel they are expected to be passive, uninformed, and obedient. In practice, being such a patient means receiving substandard care and sometimes even no care at all. As Sosnowy (2014, 322) put it, patients “didn’t feel they had much of a choice” but to engage in knowledge-seeking and knowledge-production activities online. Patients with rare and oncological diseases in Russia engage in practices that breach the space of medical uncertainty they encounter daily and create “informed” patients. They not only spread and enhance collective “patient knowledge” (Pols 2014) but also reframe doctor–patient communication from paternalistic to more partner-like approaches. Thus, engagement in practices of invisible participation encourages people to be a different kind of patient—an active and knowledgeable one. In line with the results of Sosnowy's (2014) study, our case demonstrated that for patients to be knowledgeable, to protect their rights, to survive, and to prosper meant to normalize resisting the passive role imposed on them by existing power structures.

From this argument stems another. Although the practices of invisible participation that we described require neither solidarization nor acting as a collective, both are sometimes the result of engagement in these practices. As described by Qadri and D’Ignazio (2022, 12), in the case of drivers working for an Uber-like platform in Jakarta who “created a collective identity” as a result of the constant repair work of the platform's glitches and failures, the process of identity formation for patients in our case resulted from similar maintenance work. During our study, we witnessed transformations indicating this. For instance, small patient communities stemming from online chats for peer support turned into registered patient organizations with formulated systematic agendas; scattered online communities found each other and unofficially united as a group with a common vision and goals. Thus, patients’ practices of making healthcare functional do not only constitute participation themselves but also enable the creation of communities that can potentially engage in “visible” and “official” participation. In that sense, our research supports the argument made by Bayat (2013, 15, 27), that nonmovements (“collective actions of noncollective actors”) “may even turn into organized social movements in opportune political climates.” There are, however, limits to what patients can accomplish since they operate with “tactics”—their everyday practices of survival—within a system whose design is not within their control.

Our research also draws attention to how patients’ everyday survival practices have different dimensions of invisibility. We distinguished three dimensions of this invisibility: invisibility to researchers, to policymakers, and to the patients themselves. First, the participatory character of everyday practices often goes unnoticed or is unaccounted for in political studies, because the practices that constitute such participation are too fleeting, uncoordinated, or are perceived as only serving the interests of those performing them. Second, these practices remain invisible to policymakers not because they are intentionally hidden but because they are so interwoven in the everyday lives of patients that they are regarded as something natural that patients (must) do. Here, participatory practices are invisible in the same sense as patients’ work of engaging with innovative technologies (Oudshoorn 2008) or keeping one's own healthcare record (Ancker et al. 2015) is invisible; they require significant effort and create value yet are neither recognized nor valued. In our case, patients accounted for gaps within the healthcare system, contributing to the smoother functioning of the system while their effort remained unnoticed and undervalued. Third, the practices of patients’ participation in healthcare are rarely perceived as such by the patients themselves. As many of the practices are rooted in the systems’ inconsistencies and shortcomings, they inevitably carry the potential for conflict. In an authoritarian context, any confrontation is undesirable and possibly dangerous; thus, patients are cautious about engaging in matters beyond their immediate concern, and when they do, it is not framed as discontent or dissent. In this way, the patients do not think of their mundane practices as patching the system but rather as fixes for their personal problems. To emphasize the multiple dimensions in which participatory practices we discuss are not seen by various agents, we have used the term “invisible participation.”

Invisible participation is complementary to, but distinct from, other types of participation described in the literature. Unlike “weapons of the weak,” as suggested by Scott (1985), invisible participation does not place an emphasis on fighting the healthcare system to bring it down, but rather on working with it, assisting it to deliver better care. Invisible participation resembles material participation (Marres 2012), with many of the practices we described made possible by the internet and especially instant messaging services. However, the concept of invisible participation emphasizes something beyond a specific mode of engagement with these technologies; it stresses that, with or without instant messaging, patients still significantly shape healthcare provision through their everyday practices and thus participate in healthcare.

The concept of invisible participation can also be used to characterize practices already described in the STS and health sociology literature to highlight the participatory and political character of patients’ mundane activities. Dumit (2006); Petersen, Schermuly and Anderson (2019) and others focused on the knowledge-producing character of such practices and how this knowledge production enables the public recognition of the patients’ issues of concern and public participation, be it through challenging established disease categories or setting research agendas together with scientists. However, thinking of patients’ everyday practices in terms of invisible participation allows these practices to be perceived not only as enablers of or precursors to more recognized forms of participation but as participation in its own right. Invisible participation provides a lens through which mundane acts of self-care, tinkering (Kingod 2020), or sharing experiences (Egher 2019) can be seen as explicitly political acts.

Postero and Elinoff (2019, 6) argue that “politics may seem to have been evacuated from logics of governance,” which is especially true for governance in non-democratic societies. In our research, we followed the tradition of political anthropologists searching for politics in places where we are discouraged from looking for them, and we discerned patients’ practices of everyday survival as deeply political acts. In the Russian context in which we conducted our study (and for similar contexts), this is a far-reaching argument that enables us to see participation instead of “a civil desert” (Gretskiy 2023, 10). Attention to everyday practices reminds us that systems are not monolithic and unchangeable, and teaches us about the unconventional, unexpected ways they can be subverted and used for purposes other than initially intended.

Studying the practices of patient participation in Russia brings to the fore how specific political and infrastructural contexts shape such practices. Similar to patients with rare and oncological diseases in other, more researched healthcare systems, patients in Russia accumulate, share, and produce biomedical and experiential knowledge. However, incoherences and disruptions of the Russian healthcare system bring to the forefront accumulation and sharing of knowledge about working fixes to and bypasses of the system. In addition, the mundane practices of patients supporting their lives do not focus that much on tinkering with existing medical solutions (Mol, Moser and Pols 2010) but often first and foremost involve a never-ending process of accessing these solutions (Temina, Zvonareva and Horstman 2023). Thus, the issues of patients’ concerns in Russia are more related to the infrastructural gaps and inconsistencies of the healthcare system than to the insufficiently researched nature of their diseases or a lack of recognition of the patient's knowledge and experience, issues that are more prominent in the “West.” However, attracting attention of the wider public to the systematic problems of healthcare organization is not without risks, given it can be interpreted as dissent by the state. Thus, only few patients venture in this direction and those who do engage in a carefully balanced act of reaching the right audiences with well-curated nonconfrontational messages, for example, by “translating” patients’ experiences into the language of policymaking when attempting to participate in decision-making processes (Hoļavins and Zvonareva 2022). When patients do attempt to address knowledge issues, it is usually an attempt to rectify a lack of biomedical knowledge about their diseases among doctors, and to increase public awareness of their disease. The success of these endeavors depends greatly on the resources available to the patients and their connections with doctors who could endorse and legitimize the patients’ “promotional” efforts. Unlike in the West, patients in Russia attempt to reach doctors and the wider public with biomedical rather than experiential knowledge.

Despite these specificities related to the context, our research provides insights that are also relevant for more democratic and infrastructurally coherent contexts and that are in line with previous findings from such locations. For example, medical sociologists Baim-Lance et al. (2019) and Stewart (2021) demonstrated how the everyday practices of patients in places like the US and Scotland (e.g., accepting delays or organizing a hospital garden) constitute an integral part of healthcare provision. STS scholars have drawn attention to patients’ tinkering with health technologies that make them work in specific individual cases (see Winance 2010 for an analysis of adjusting wheelchairs in France; or Jansky 2023 for a study of a community that developed a diabetes-tracking algorithm in Germany). Along with these studies, we argue for recognizing participation as an inevitable and already happening reality enacted through patients’ everyday practices rather than as a far-from-realized ideal. This shift of perspective also alters the patients’ role in healthcare systems—from receivers or invited consultants to active co-creators. The recognition of everyday practices as participation allows not only for the greater attunement of healthcare systems to patients’ problems (and thus better tailored decisions), but can also provide justice regarding crucial aspects of care that remain “out of scope” in institutionalized healthcare provision and which are being received elsewhere, for example through patients’ mutual support, exposure to positive examples, a sense of belonging, etc. The sensibilization of healthcare systems to practices of invisible participation would enable their transition from bureaucratized systems of instrumental provision of ready-made services, to systems of continuous collective care.

There are some limitations to our study. Most of the participation practices we described were enabled by online spaces to which patients had to have regular access. However, not all patients with rare and oncological diseases in Russia have such access. Many are impeded by digital inequality and do not have regular and reliable internet connection and/or do not know about these digital spaces. However, this does not mean that these patients do not participate in healthcare through some other, possibly collective, practices, which have not been documented in this research. Further research could seek out and draw attention to such practices and analyze how they are different (or similar) to those exercised online.