Abstract
This article investigates public issue formation catalyzed by Russian patient organizations (POs) that aim to change healthcare rules and practices following patients’ needs and expectations. Drawing on the socio-ontological approach of science and technology studies, which posits that issues do not exist independently of efforts to address them, we identify three main stages of public issue formation in the studied situation: (1) from individual troubles to systemic problems, (2) from systemic problems to shared concerns, and (3) from shared concerns to public issues. Transforming individual troubles into public issues is neither easy nor straightforward. Yet, as the key actors in the process, POs use events like conferences and roundtables, and consultative spaces like public councils to engage with healthcare experts and state policymakers. We propose to view these events and spaces as trading zones. Facilitating public issue formation through trading zones where collaboration with other healthcare governance actors occurs without consensus over meanings and priorities, POs address suffering among patients in nondemocratic situations where expert knowledge dominates and public participation is generally unwelcome. The resulting issues are public in scope and capability of mobilizing action, yet articulated in a de-publicizing manner that conceals conflicting stakes and commitments.
Patients Change Healthcare Policy in Authoritarian Situations
“In 2020, a new Order 585n on classification criteria for disability status was issued, with an obstacle of the body mass index being removed,” said proudly Irina Germogen, the head of a large patient organization (PO) in Russia, in an interview with the first author. This order changed the criteria used by local, regional, and federal Medico-Social Examination (MSE) commissions to grant individuals disability status. The previous order, 1024n (MoL 2015), specified that individuals with diseases such as pancreatitis, cirrhosis, or cystic fibrosis must have a body mass index (BMI) between 16 and 18.5 to be granted disability status, which is in turn a condition for having the costs of medicines covered by the state. The failure to meet this BMI criterion, partly due to prescribed hormone therapy, had been reported by distressed patients across the country to the PO headed by Germogen, which represents people with several severe digestive system disorders. The PO then worked to change the situation by organizing conferences, one-on-one meetings, writing official letters, and discussing the topic at patient councils. Subsequently, the new Ministerial Order 585n (MoL 2019) removed the BMI criterion, enabling the free provision of therapy needed for sustaining patients’ quality of life. In this instance, a healthcare disruption that had troubled individual patients made its way to national-level state institutions and was subsequently resolved.
But how were patients able to instigate this change, considering general hostility toward public participation in Russian healthcare governance? In the case of the BMI criterion, as well as numerous other examples witnessed during our ethnographic fieldwork, we identified a peculiar process of public issue formation, one which gradually moves individual patients’ struggles to the center of attention of healthcare experts and, lastly, to that of state actors. This process is largely catalyzed by POs and can be divided into three stages: first, individual citizens’ troubles become what POs call systemic problems; second, systemic problems become concerns shared by credentialed experts like medical professionals and researchers; and, finally, shared concerns become public issues accepted in the policymaking agenda by state actors. During this process, different knowledge communities, including patients, POs, credentialed experts, and state officials, interact without necessarily reaching a consensus about what disruptions imply and represent (Star 1993). Still, actors with different interests and interpretations of what must be fixed and why join in the process of public issue formation. The study reported in this article focuses on the mechanisms of this process as well as on specificities of public issues in a nondemocratic situation: how does the process of public issue formation proceed in a nondemocratic situation and how does it compare to the public issue formation in more democratic situations studied by science and technology studies (STS) scholarship to date?
We use the case of Russian POs as it provides a vantage point for the analysis of challenges the publics face when they attempt to instigate a change in situations inimical to public participation and, importantly, how such change is still being achieved. Relying on this case, we also shed some light on the dynamics of nondemocratic situations. The overall hostility toward citizens’ engagement in healthcare governance in Russia is alleviated occasionally by establishing consultative spaces, such as public councils. Consultative spaces may appear to be tokenistic, and yet, despite their carefully curated agendas and controlled composition, POs do manage to use these spaces to engage in issue formation.
Public Issues
For Marres (2005a, 14), democracy is “not results, but the ‘process’ through which they are achieved,” crucially dependent on public involvement in the formation and settlement of issues. This sentiment echoes efforts by STS and critical public participation scholars to make sense of and address what has been called a crisis of democracy (Bijker 2017; Callon, Lascoumes, and Barthe 2011; Jasanoff 2017). If democracy is a process, then it is not about having information and making the best possible decisions based on it, as assumed by the liberal “informed citizen” ideal of public participation (Dahl 1998; Dalton 2008; Milner 2002). Rather, public involvement in politics and democracy occurs precisely when something is malfunctioning, and there is no immediate capacity—including knowledge—to solve it (Marres 2005a, 7-8). In line with this notion, Marres (2005b, 99) highlights that participation is “dedicated to the articulation of [public] issue[s]” which are otherwise undefined and unknown. Hence, the formation of public issues is democracy itself.
Marres’s conceptualization of public issues differs from that of classical political science, which views public issues as evident clashes of interests between rational actors in the “public sphere” (Almond and Verba 2015; Cohen and Arato 1992; Schudson 1994, 530-32). This emphasis in the process also diverges from objectivist and discursivist social science approaches, which define public issues, respectively, as troubling things that clearly exist “out there” and are external to participatory practices or as formed by notions, definitions, and terminologies mobilized by the actors involved (Chilvers and Kearnes 2020, 349; Marres 2007, 761-62). Drawing on STS scholarship and John Dewey’s understanding of public issues, Marres puts forward a socio-ontological perspective on public issue formation, suggesting that it is not a process of discursive framing but instead of intervening in collectives “that include associations of material and social constituents” (Marres 2007, 762).
In studying issue formation, Marres (2007, 773) further proposes focusing on the attachments or “material, physical and technical associations” on which people depend and to which they are simultaneously committed. When endangered, such attachments come together in issues. The articulation of an issue, then, is an articulation of threats to actors’ livelihoods. Importantly, Marres distinguishes between publicizing and de-publicizing issue articulations: publicizing articulations lay bare the partial irreconcilability of associations entangled in the issue at stake, whereas de-publicizing articulations keep such irreconcilabilities obscure. In the first case, specific points of contention become open to critical scrutiny. Overall, the adoption of a socio-ontological perspective shifts analytical attention away from analyzing frames and toward an analysis of attachments of things and humans (for more on attachments, see Gomart and Hennion 1999).
Against the delineated background and for the purposes of this article, we can understand democracy as having to do with opening up opportunities for public to become involved in articulating issues, valuing such involvement, and accommodating multiple and at times conflicting articulations. Correspondingly, nondemocracy can be understood as closing down opportunities for public involvement in issue articulation, maintaining inequalities in access to means of articulation, and emphasizing a single articulation at the expense of others. In this paper, we speak of nondemocratic situations rather than (non)democratic “settings” to highlight the undetermined, locally specific, and only temporarily fixed ways in which nondemocracies are being enacted (Birkbak and Papazu 2022). That is, we treat nondemocracy analytically as continuously constituted by practices and always in-the-making. This approach, which emphasizes open-endedness and multiplicity, allows us to see the unevenness of nondemocracy and the shifting and provisional boundary between democracy and nondemocracy. At the same time, it allows us to notice how contemporary healthcare governance practices in Russia firmly constitute a situation of nondemocracy through limiting opportunities for articulating issues, closely shaping the issues that do emerge, and forcing their closure.
Participatory practices have proven hard to grasp even in extensively studied democratic situations, not least because participation is a comparatively imprecise concept, as well as diverse practical procedures for organizing people, things, and issues and also an experience of becoming a collective (Kelty 2020, 3). Nondemocratic situations, such as the one constituted through the practices of Russian healthcare governance with its hostility toward public participation, are less studied and perhaps even more difficult to analyze. Still, the socio-ontological approach is fruitful in accounting for the diversity and uncertainty of situations and the “multiplicity and multivalence” of participatory practices (Chilvers and Kearnes 2020, 350). In this article, we draw on Marres’s work on public issue formation to investigate how POs in Russia manage to articulate threats to the livelihoods of local patients, how these articulations are made public, and what “public” could mean in a nondemocratic situation.
Trading Zones
The emergence of an issue may entangle different actors who, in Marres’s (2007) words, are implicated in the issue jointly and antagonistically (p. 773). That is, associations that become entangled with the matter at stake are partly mutually exclusive. For example, indigenous hunters, biologists, social scientists, and employees of the intergovernmental organization Science-Policy Platform on Biodiversity and Ecosystem Services, which is concerned with preserving biodiversity and bioresources in Nicaraguan natural reserves, rely on mutually incompatible knowledge systems, divergent experiences, and conflicting practices (Danielsen et al. 2018, 112-14, in Hecker et al. 2018). Neither alignment of ontologies nor unified communities emerge in this case. Nonetheless, public issues are formed, and public involvement in environmental politics is enacted.
To understand how such disparate collectives act together, Galison (1999) offers the concept of trading zones. Galison (1999, 146) provides an example of money exchange in Colombia, where the same artifact—money—is understood as capital by landowners, or as a baptized “child by followers of the local folk religion.” As a result, people proceed with exchanging items despite relying on “two vastly different symbolic and cultural systems, embedding two perfectly incompatible valuations and understandings of the objects exchanged” (Galison 1999, 146). The concept of trading zones also supports an analysis of interactions between theoretical and experimental physicists at the Massachusetts Institute of Technology (MIT) in the middle of the twentieth century, where the physicists managed to work together despite radical differences in ontology, symbolic systems, standards, and practices (Galison 1999). Their work became possible through doing projects together, creating functional elements of communication for mutually relaying problems, and holding frequent informal meetings, including in the “cafeteria, lounge and airports” (Galison 1999, 153).
Subsequent studies further developed the concept of trading zones, describing them as spaces of calibration or “ongoing, day-to-day negotiation and alignment of personal identities, disciplinary commitments, and research group customs that occur during face-to-face group deliberations” (Centellas, Smardon, and Fifield 2014, 311). These mundane, everyday practices are the key mechanism for understanding “collaboration without consensus” (Centellas, Smardon, and Fifield 2014; Star 1993), which is one way of describing interactions that occur in trading zones. Collaboration without consensus and calibration here means that associations do not merge into solidified communities and are instead “spanned” by functional and limited social interaction (Brown and Duguid 2001; Kellog, Orlikowski, and Yates 2006).
We draw on the concept of trading zones to analyze interactions between distinct and seemingly incompatible communities (experts, policymakers, and citizens), who come together in the process of articulating and addressing healthcare issues.
Ethnography of Uncertainties
Studying public participation was an uncertain endeavor due to the general sensitivity to the topic of Russian state operation, the COVID-19 pandemic, and the 2022 Russian invasion of Ukraine. Nonetheless, between November 2021 and November 2022, we managed to generate diverse and rich data on how public issues form in Russian healthcare.
Data in this study include seventy-three documents, fifty-one semi-structured interviews, and multiple participatory observations in several Russian regions. The documents consist of key policy documents and legislation, methodological handbooks produced by POs and think tanks, reports by social projects, and protocols from meetings of consultative bodies. The fifty-one semi-structured interviews were conducted with thirty-four research participants and sought to describe tactics used by POs to achieve their goals, relations between POs and state actors, and the place of consultative spaces like public councils in these relations. The interviews lasted between thirty minutes and three hours and thirty minutes, with the average time being slightly longer than one hour. Interview participants represented sixteen nongovernmental POs from nineteen Russian regions, who were also members of public councils, an umbrella term we use for consultative bodies like public councils, patient councils, and public chambers as introduced above. Most respondents were leaders of POs at national or regional levels. Participant observations covered events organized by or with the involvement of several of the largest and most influential POs in Russia, such as patient gatherings, conferences, discussions, roundtables, and meetings of public councils and everyday office work. Notably, only largest POs actually have offices, while smaller ones operate from homes of their leaders.
The resulting data were analyzed using thematic content analysis (Vaismoradi et al. 2016), which was guided by our interest in how public issues emerge and mobilize action. The coding scheme was developed alongside data generation and was adapted in response to the insights emerging from our fieldwork. Regular meetings were held with all members of the project research group over the year to continuously make sense of the generated data, discern patterns, critically discuss alternatives, and develop analytical codes and categories.
The study has been approved by the Maastricht University Health, Ethics and Society Department Research Ethics Committee (REC/2021/109). Research participants were universally aware of our role within the study, with signed informed consent obtained from all interviewees and oral informed consent for observed participants. The only exception, for feasibility reasons, were observations of recorded public events available online and attended by hundreds of people. In this article, pseudonyms were used instead of real names of people, organizations, and locations for ethical reasons.
Russian Healthcare Governance and POs
In this section, we provide background on Russian healthcare governance and POs to contextualize and historically situate our case.
At the end of the 1990s, the Russian state adopted a program of guarantees that stipulated an extensive list of health conditions for which Russian citizens were entitled to receive free treatment. Very few health services, such as pharmaceuticals prescribed by outpatient organizations or cosmetic services, are not covered by this package of guarantees (Zvonareva and Borozdina forthcoming). In practice, however, the program of guarantees promises more healthcare than the government can fund (Shishkin 2018).
This mismatch between promises and actual possibilities has resulted in a displacement of de jure free to de facto paid healthcare, when, for example, public healthcare organizations ask a fee for services included in the program of state guarantees (Zvonareva and Borozdina forthcoming). Public healthcare organizations might offer patients to pay for an opportunity to bypass waiting lists or visit a particular specialist. Furthermore, healthcare providers might simply refuse to provide services and medicines, despite being formally obliged to do so (Zvonareva and Borozdina forthcoming). As an illustration, in 2018, the World Health Organization estimated 40 percent of the population in Russia have private health expenditures, with 2 percent from voluntary health insurance contributions, and the remaining 38 percent from out-of-pocket payments (World Health Organization n.d.). This situation indicates that informal and invisible World Health Organization (n.d.). Health Expenditure Profile Russian Federation. World Health Organization Global Health Expenditure Database. Accessed November 9, 2021 commercialization of healthcare provisions is taking place despite universal healthcare guarantees given by the state.
Against this background, Russian patients started to organize themselves explicitly in POs after the end of the Soviet Union (Masjuk 2015). POs is an umbrella term for third-sector organizations such as charity foundations, citizen associations, and others, all dedicated to furthering patients’ interests. Russian POs vary in size, ranging from local self-help groups to national-level organizations with branches across most of the Russian regions. Most POs represent people with rare and/or severe diseases, like multiple sclerosis or cancer. Not all PO members are necessarily patients themselves: sometimes, they are relatives of patients or medical professionals specializing in specific diseases. There is no uniform profile for a PO member: research participants included former military, entrepreneurs, lawyers, accountants, stay-at-home parents, unemployed people, and retirees. There is a persistent lack of active members. Thus, newcomers, especially those experienced in law, medicine, and state administration, are always welcomed, with one caveat: they must not be radically subversive toward healthcare actors or state officials.
This is not to say that patients are never involved in confrontational activities in Russia. Collective action by patients has diverse forms (Temina, Zvonareva, and Horstman 2023). However, when such action is through a PO, it is likely to adhere to what our research participants themselves called a “constructive” mode of action. Such a mode of action is characteristic of Russian third-sector organizations known as “social NGOs” (Holavins 2020; Tarasenko 2015). Social non-governmental organisations (NGOs) are an academic and emic term for organizations framing their work as bound exclusively to topics deemed safe and neutral by the political regime, such as supporting vulnerable social groups, as opposed to more undesirable areas, such as human rights. Unlike many social NGOs, which have little to no contact with state actors, POs interact actively with the state. This could be due to the dominance of the state actors in healthcare provision, regulation, and decision-making. At the same time, the private sector appears to be less important for POs as an advocacy target. The private sector, and more specifically pharmaceutical companies, has a role in financing POs. While systematically collected information about PO funding in Russia is lacking, indirect indicators have led analysts to assume that funding provided by pharmaceutical companies is significant and warn that some PO activities that focus on ensuring state reimbursement of certain medicines may reflect this funding (Krasheninnikova 2009).
In the context of the pervasive mismatch between state healthcare guarantees and actual healthcare practices delineated at the beginning of this section, the work done by Russian POs has come to focus on aligning healthcare practices with relevant legislation. During our fieldwork, we learned that POs tend to do so by lodging complaints to federal and regional branches of the Federal Service for Surveillance in Healthcare (commonly referred to as Roszdravnadzor), prosecutors’ offices, and investigative commissions (Rus. Sledstvenny Komitet, SK). Sometimes, patients’ needs exceed existing healthcare system arrangements. In these cases, POs shift from aligning practices with legal norms to (re)aligning legal norms with patients’ needs. Specifically, POs work on changing normative acts or pushing for change in clinical recommendations, medical standards, and disability status regulations. During our fieldwork, we identified numerous state institutions that may be approached in this process, including federal or regional Ministries of Health (MoH) and Ministries of Labor and Social Affairs (MoL). Further, POs actively collaborate with commissions on healthcare in federal and regional legislatures. Individually, governmental specialists in certain health topics and heads of departments in ministries, MSE commissions, and Roszdravnadzor, as well as governors and members of parliaments, can be contacted by POs in their efforts to convince state institutions about the need to change specific regulations.
In their work on addressing patient needs and changing existing policies and normative frameworks, Russian POs rely on Federal Law 323, On the Fundamentals of Protection of the Public Health (FL 323, issued in 2011), which states that patients have the right to engage in healthcare governance. Additionally, POs frame their work in accordance with Federal Law 212, On Public Control (FL 212). This second law, issued in 2014, is a key piece of legislation that regulates public participation in Russia, framing it in terms of vigilance over possible corruption and checking the quality of policy implementation.
The main formal route for public participation delineated by FL 212 is consultative bodies. These bodies have no binding powers but do allow third-sector organizations, POs included, to articulate their views. The main consultative bodies are public chambers (Rus. obschestvennye palaty) and public councils (Rus. obschestvennye sovety). Public chambers are institutions consisting of state-appointed pro-regime activists and are designed to be the key institutions performing public control. Public councils are attached to all federal and regional state institutions, including the MoH, MoL, and Roszdravnadzor. Public council members are appointed by public chambers and may represent medical professionals, the research community, the pharmaceutical industry, and, sometimes, patients.
POs do participate in public councils but often perceive them as a mere imitation of public participation. Instead, PO leaders have managed to implement the idea of Councils of Non-State Organizations on the Rights of Patients (Rus. sovety obschestvennykh organisatsiy popravam patsientov) or simply patient councils. Patient councils are alternative consultative bodies attached specifically to MoHs and Roszdravnadzors. They consist solely of representatives of third-sector organizations (POs primarily, but also charity foundations, medical professionals’ trade unions, and other NGOs). Federal and regional state institutions are obliged to have public councils but are not obliged to have patient councils. Patient council members are appointed by those state institutions to which they are attached, not public chambers. As POs dominate patient councils in terms of membership, they usually control the agenda. As a result, unlike public councils, patient councils do not support state institutions unanimously. Lastly, another consultative body—one which is not centrally regulated or dominated by pro-regime activists—are federal and regional MSE public commissions. POs participate in these commissions actively in matters regarding disability status.
Public Issue Formation
Below, we detail the stages we distinguished in the process of issue formation. For each stage, we delineate disparate yet collaborating actors and the trading zones in which they conduct their exchanges.
We must stress that the formation of public issues is not the only path for POs in Russia to address misalignments between patients’ needs and actual healthcare practices. Various tactics may be employed for this purpose, like telefonnoe pravo (“phone right,” or calling friendly state officials in search of support, Ledeneva 2018, 457-60) and a linked ruchnoe upravlenie (“manual transmission,” securing an ad hoc decision by an individual state official). As mentioned in several interviews, rarely, Russian POs or individual patients also use “go wild” tactics of spreading outrage in mass media (e.g., Sofiia 2024) or even holding protests (e.g., Sazonov 2021). But generally, POs try to avoid these activities in order to remain “constructive forces” for state actors.
However, a direct informal channel to state officials might not be possible. Written formal relations are usually more stable, credible, and referrable than oral agreements. Lastly, complex healthcare misalignments require action by multiple decision makers, so they are hardly manageable through informal interactions alone. It is for these reasons that Russian POs often engage in public issue formation.
From Troubles to Problems
The research participants described numerous incidents of individual patients encountering unsatisfactory healthcare provision. Some examples of what can go wrong from the interviews were lack of awareness among generalpractitioners of a life-saving medical procedure for children with an aggressive form of cancer, a new clinical recommendation for untrained minors to monitor their glucose levels on their own, an ill-managed procurement procedure that resulted in stock-outs of medicines. In such instances, research participants spoke of “personal, one-man problems” (Rus. lichnye problemy, problemy odnogo cheloveka) and “isolated incidents” (Rus. edinichnye sluchai). We call these individual problems troubles, which we define as active dissatisfaction among patients with the mismatch between their expectations and experiences.
Some troubles, PO representatives explained, were cases of local healthcare practitioners or organizations failing to adhere to established legal norms. PO representatives emphasized that individual actions by patients or patients’ representatives, like calling a hospital’s head physician or filing a lawsuit, should suffice. Even then, a patient’s trouble is a personal negative experience, so it remains hidden from the wider public.
Some individual troubles are reframed and reformulated by POs as instances of wider, general healthcare problems. POs use the term systemic problem (Rus. sistemnaya problema) to highlight troubles that are not confined to situations experienced by single individuals. According to the interviewed PO leaders, to be called a systemic problem, troubles must be expressed by multiple patients, and their resolution must require changes in existing healthcare policies or operational principles. Notably, respective wideness and severity of troubles are not some pre-existing objective characteristics uncovered by POs but particular frames created by them (Bacchi, 1999). In other words, what is systematic and what is not is defined by POs via specific practices, which we discuss in more detail below.
Once regarded considered as systemic problems, troubles that cannot be solved speedily through other means may further progress in the issue formation process, becoming visible to and recognizable by multiple actors, including those affiliated with the state. For this to happen, the trouble must first become known to the leadership of a PO, the key mediator between patients, credentialed healthcare experts, and state actors.
According to PO leaders interviewed for this study, there are several routes by which patients’ troubles reach them. First, POs “systematically monitor changes in legislation” as explained by Domna, a coordinator at PO Patients’ Voice, in charge of the legal literacy project. Such monitoring helps POs to be aware of emerging frictions between the healthcare system and its users. Second, POs also regularly conduct online surveys among their members, be they polls on general satisfaction with healthcare services or questionnaires on specific topics, like accessibility of home-based mechanical ventilation for cystic fibrosis patients. Third, PO members might explain their situation to PO employees in person or by email or phone. Finally, most research participants mentioned patients who communicate with POs by posting on either POs’ official chat on WhatsApp and/or Telegram or the official VKontakte social network group.
Participants in this study highlighted that learning about patients’ troubles is not an easy or smooth process. Efforts to understand the nature of patients’ troubles, as described by the interviewed POs’ leaders, indicate that POs’ management and lay patients tend to belong to different knowledge communities that do not easily understand one another. Patient statements are often unclear and contradictory to POs’ leaders, who report resorting to such strategies as asking multiple additional questions to make sense of the information received, something the first author witnessed on several occasions during interviews, which were paused due to phone calls from patients. POs’ leaders also viewed patients’ statements as overly emotional for their taste, describing callers as confused, sad, and/or angry.
Building on these experiences of communication with patients, the majority of research participants insisted that lay patients do not possess the communicative skills or medical, legal, and state administration knowledge needed for communicating troubles directly to credentialed experts or state administrators: A person tried to figure out something yesterday without actually understanding what he wants. So, I need to help a person to formulate the question. Do you want to know this? Or that? Or that? (Iya Nudina, regional charity foundation member and public council chair in Krasnovsk) One has to tell and bring to the table patients’ problems precisely and emotionlessly. Never just say: our patients complained about this and that. Analyze a problem instead, work on it, systematize it, and search for constructive solutions. Do not just come to the Ministry of Health with complaints but offer your own solutions. (Arina Kassova, regional patient organization leader, public council member in Kuropatinsk)
While the emergence of a systemic problem involves collaborative interaction between patients and PO leadership, this interaction proceeds without necessarily reaching a consensus about its meaning and goals. For lay patients, troubles are signifiers of deteriorating health and illness that impact their bodies, feelings, and ability to function socially. For PO leadership, troubles are pieces of information and data on the current state of the healthcare system. For POs, acting on troubles is a way to help their members but is also a tool to reiterate their own expert status. In this sense, troubles are instrumental for POs for maintaining and expanding access to membership in consultative spaces or for acquiring material resources like grants, donations, and in-kind contributions by various healthcare governance actors.
Despite their differences, POs and their members are able to work together. Gatherings organized by POs for their members, appointments in PO offices, as well as social networks and messaging applications can all be understood as trading zones (Galison 1999). Notably, these interactions are usually not scripted and do not have a predetermined structure. Rather, the research participants described one-off, unstructured, and situational interactions, enabled by these physical and online spaces, when reflecting on situations in which they did manage to “spot” a systemic problem.
In sum, in the interaction between lay patient members of POs and PO leadership, fuzzy individual troubles become systemic problems with clear causes and solutions. They are not yet public issues because they are not visible and recognized as a matter of shared concern by the wider collective of actors. The next stage in public issue formation is to enroll those other actors, in particular, credentialed healthcare experts, through convincing them that the problem is indeed significant and has wide repercussions beyond the health of individual patients. In other words, systemic problems must become concerns shared across multiple knowledge communities beyond patients only.
From Problems to Concerns
The next stage of issue formation involves the transformation of a problem that is clearly delineated but relevant mostly to those who experience its manifestations directly, into a concern of wider relevance. Research participants clearly distinguished systemic problems as perceived by one organization from systemic problems shared by many actors, but they did not employ a specific term for the latter. For the purposes of this article, we define “concern” as a systemic problem, one that is accepted and shared by a collective of actors drawn from different knowledge communities. While a problem “belongs” to a single PO, a concern is known to and accepted as such by medical professionals, private-sector representatives, and healthcare researchers.
The work of POs to create a shared concern implies the reshaping of initially formulated problems to fit the agendas of other actors rather than searching for actors with similar views. To coshape the systemic problem, POs actively contact other POs, medical doctors, health researchers, insurers, and pharmaceutical companies, simultaneously persuading them of a problem’s existence and relevance. A tactic mentioned by many research participants is to broaden the initially formulated problem to cover other diseases: When it comes to specific drug availability, this is just our problem. Other problems, like the quality of medical care provision, surely, are relatable to all patients. So, I frame it accordingly. (Anfisa Podrugina, regional patient organization member, public council member in Chumakhla) We first invite them just in an expert capacity to make a presentation, then meet with them to talk in person and get to know each other. Only when we see that they start to be our allies, might we ask [to discuss, support and work on solutions for PO-defined systemic problems]. (Leonid Ivanov, Translation Bureau, federal public council member) The first step to establishing a partnership is the creation of the “map of interests.” … A map defines the main external partners, their needs, as well as benefits and resources, that social NGOs defending the rights of patients can offer to them in case of collaboration in the field of healthcare. (Document 58, “Best Practices of Social NGOs,” 2015, 6)
Working on creating a collective of shared concern, POs adjust initially defined problems in response to the needs and interests of other actors. At the same time, they never entirely give up on their formulation of problems. For POs, problems are usually various societal failures to satisfy the needs of their members. For private-sector representatives, however, these might be missed profit opportunities due to, for instance, a certain disease not being part of state-funded reimbursement programs. For medical doctors, problems are about complaints by patients and missed key performance indicators (KPIs), while, for scientists, problems are linked to stall scientific knowledge production and being prevented from bringing new treatment ideas into practice. Thus, a shared concern does not entail a consensus on the goals of a collective or the meanings of actions to be taken. Rather, shared concern hinges on the relatedness of the different problems pertinent for different actors and on the prospect of having them addressed together.
Therefore, interactions between members of such a collective temporarily tied together by a shared concern can also be understood as taking place in a set of trading zones. This time, we speak of roundtables, conferences, and expert meetings but also individual interactions via email and in-person meetings in offices, be they at POs, research institutions, or state agencies. Without developing a common identity, language, or epistemic base, POs, researchers, medical professionals, and private-sector representatives come together and tweak different formulations of a problem until it becomes relatable for all. In the process, the problem gains visibility and relevance. However, in the setting where this article originated, this is not enough for a full-fledged public issue to emerge because state actors are still not a part of an association.
Hence, the next stage in the public issue formation process analyzed here involves a carefully articulated concern shared across multiple knowledge communities becoming an issue recognized and acted upon by the state. This move contrasts with how public involvement in issue formation is usually understood in existing scholarship, where the state tends to be viewed as “compelled through public demonstrations of its failures to put its resources toward addressing public predicaments,” as was noted by an anonymous reviewer in the course of the peer review that led to the publication of this article. Yet, the specificities of the nondemocratic situation where we study the issue formation process mean that, for patients’ dissatisfactions to actually interfere in the everyday practices of healthcare, these dissatisfactions must reach and go through state actors, who can be understood here as indispensable points of passage.
From Concerns to Issues
In the case analyzed here, for concerns to become public issues, state actors have to recognize them as relevant to be acted upon. As several research participants noted, without the involvement of the state in the setting we studied, any solutions will be fleeting and uncertain—if even possible. Therefore, for the purposes of this study, we define issues as shared concerns, which become known, recognized, and accepted as worthy of action by state actors. This is a situation-specific definition that reflects state actors’ dominant role in shaping the degree of visibility of a particular concern and the possibilities of it being acted upon. Such state-recognized concerns or issues were called “matters of societal importance” (Rus. voprosy obschetvennoy znachimosti), “governance goals” (Rus. zadachi gosupravleniya), or sometimes “political matter” (Rus. politicheskie voprosy) by research participants. Notably, in the vast majority of cases of public issue formation, we encountered during our fieldwork, POs did not bring conflicts and points of contention to the fore, thus inhibiting wider critical scrutiny of threats to livelihoods and how they emerged.
There are three main routes through which POs can reach out to state actors. First, there are the aforementioned informal interpersonal connections, often presented haughtily in interviews as the ability to call or visit the office of some influential state official, like a regional minister. Second, there are official requests and complaints, a key tool for addressing troubles that is recommended and taught at patient schools to members of POs. Third, there is participation in public councils. These three routes are not mutually exclusive and may be used in different combinations. Moreover, one route may be more feasible than another depending on which resources are available to the PO. For example, one NGO in Lytsk, which represents oncological patients, prefers legal action in court to other forms of defending patient rights because it has a strong legal team. In turn, the recognition by state officials that patient community leaders are proficient in state administration or medicine facilitates access to membership in consultative bodies.
For the public issue formation, the third route of contact is the most relevant. In fact, consultative bodies are considered by federal-level leaders of the Russian patient community to be the key means for making a difference in healthcare governance and practice. For us, they became the most important trading zones we encountered on the path from troubles to public issues. They are the spaces in which PO leaders and, sometimes, lay patients can meet state officials in formal settings to discuss the current state of healthcare provisions, major failures in complying with existing regulations, and, most importantly, the inability of current regulations to satisfy the needs of patients.
Developing an agenda for public councils requires several actions according to interviewed PO leaders. First, they negotiate online with fellow members about which matters are the most urgent. Based on these discussions, chairs, together with state officials, choose several concerns to include in the agenda for the upcoming year. Then, relevant actors—either those who proposed the topic, like POs, or relevant actors involved in decision-making—prepare presentations. The presentations and reports are then followed by a question, comment, and answer session. If state officials present at the meeting agree with the arguments being made about concerns and possible solutions, they might support an action to address the concerns which then in the process of being addressed become public issues.
A common sequence of actions at these meetings is as follows: We create a list. We write a letter to an ombudsman. We collect and discuss information, connecting it to relevant normative acts. Preparing for a meeting means collecting information, reliable information. Then, we invite stakeholders, those key for decision-making. Professional, high-quality moderation is important for the event.…Public council members make a proposal…secretary records it…chair includes it in the agenda.…We invite a person, who is in charge of making policies on the topic of concern to make a presentation.…He tells how it works.…Council members ask questions.…Then, we make a resolution of what actions we expect from the regional ministry of health…recommendation is taken onboard and implemented. (Anfisa Podrugina, regional patient organization member, public council member in Chumakhla)
Many informal activities like these are intertwined with formal activities. For example, scheduled coffee breaks before the meeting are used to converse with state officials or promptly find additional supporters for a particular problem formulation. Other informal practices, like raising one’s voice to be heard after a call for “other questions,” seem so mundane that it is tempting to discard them as insignificant. Yet these practices are the core of the work of POs in public councils, not least because they prevent open conflicts.
In the process of remaking a shared concern into a public issue, state actors recognize and become willing to act upon threats to different livelihoods as articulated by POs. Crucially, state officials are acutely aware of how any mass dissatisfaction among citizens constitutes a threat to “social stability,” a term regularly mentioned in orders from the Russian Federal Government and in legislation at the regional level, as well as in the methodological materials published by POs, like Document 58, “Best Practices of Social NGOs,” in which social stability is named “a key interest of state institutions” (p. 6). Yet, these different threats are being entangled and articulated together. Accounts by the research participants and our own observations suggest that this becomes possible—to a large extent—as a consequence of informal tactics and unscripted interactions within public councils despite the fact that these bodies are the most structured and regulated of all trading zones we encountered.
The very fact that POs manage to draw attention to patients’ needs in a nondemocratic situation under unfavorable conditions for public participation is impressive in itself. However, apart from recognizing the issue, state actors still need to act—ideally in line with the proposal of the concerned association. Thus, according to research participants, POs continuously remind state officials about the agreements reached through written requests and follow-up roundtables and conferences. At later stages, POs also keep an issue alive by commenting on legislative drafts and writing policy notes and recommendations. In the event agreements are not implemented, POs do sometimes turn to publications in mass media and/or conduct awareness campaigns.
Conclusion: Making Public Issue Formation Possible in Nondemocratic Situations
In this article, we showed how individual patients’ troubles become public issues in the nondemocratic situation of Russian healthcare. This situation can be understood as nondemocratic due to the extent to which public involvement in issue articulation is constrained, due to pronounced inequalities in actors’ capacities to be involved, and due to the control exercised by state actors over which issues do become articulated, and in which form. Still, POs manage to insert themselves in the issue formation process. They accumulate information about patients’ troubles and work to address them in various ways, including through public issue formation. Here, the route of public issue formation means the process of transforming individual troubles into systemic problems; systemic problems into shared concerns; and shared concerns into public issues, such that they are recognized, accepted, and acted upon by state actors. A hallmark of this process is that patients’ dissatisfactions with the mismatch between their expectations and healthcare experiences only become capable of reordering attachments and relations that make up everyday practice of healthcare when passed through state actors.
Much of the POs’ work is dedicated to reshaping dissatisfactions in ways that can ensure this successful passage. We suggest that the existence of such an obligatory point of passage could be one of the characteristics of the public issue formation process in nondemocratic situations. The involvement of state actors, who in our case are ultimately in control of what does and does not become a public issue, may appear to contradict the idea of a public issue as one that is collectively articulated, with state actors being merely one among other stakeholders. Yet, we can still speak of public issues in the sense of threats to patients’ livelihoods being formulated over time in such a way that they become relevant, concerning, and animating to a wide range of dispersed actors. We suggest that the emergence of a notion of the public as referring to concerns recognized by powerful actors is another characteristic of the public issue formation process in nondemocratic situations.
Crucially, public issue formation in our case entails more than an exercise in framing. Instead, it interferes with and reconfigures associations of lay patients, medicines, POs, messaging applications, healthcare professionals and researchers, state administration routines, businesses, stockouts, and officials. In this article, we identified different spaces that facilitate reconfigurations of associations in the process of issue formation. These spaces include patient chats moderated by POs, in-person meetings, roundtables and conferences involving credentialed experts, and patient and public councils. We understand these spaces as trading zones which, importantly, are neither static nor fixed. Even public councils, the most structured of trading zones are simultaneously shaped by the interactions they themselves enable. The very capacity of public councils to function as trading zones—allowing coming together of disparate backgrounds and motives—is co-produced by their organization and the practices, as well as the informal practices, of those who enter them. Collaboration in these trading zones proceeds without consensus over the meaning, location, and implications of a problem and ways to address it. Moreover, associations that ultimately become entangled in the emergent issue remain antagonistic and irreconcilable: interests diverge, threats are multiple, and endangered attachments are not the same.
Crucially, in nondemocratic situations, the articulation of an issue does not make such irreconcilability visible. Examples such as the BMI criterion highlight how public issues are formed and addressed—yet somewhat paradoxically, this is done in a de-publicizing manner where points of contention remain opaque. Consequently, issue formation proceeds with limited to no wide debate, open societal dissatisfaction, or public upheaval. Avoiding open conflicts, Russian POs smooth and camouflage irreconcilabilities. In the process inevitably glossing over power inequalities and exclusionary decision-making practices, and discouraging critical scrutiny of “existing institutions [that] are not sufficiently equipped to deal with [issues]” (Marres 2007, 772).
We suggest that while open contestations do erupt sometimes even in situations of hostility to public participation, the de-publicizing articulation of public issues could be what actors in nondemocratic situations tend to resort to mitigate threats to their livelihoods. This is the third characteristic of issue formation in nondemocratic situations: the emergence of issues that are public in their reach and capacity to mobilize action, yet are articulated in a manner that is de-publicizing in its concealment of conflicting stakes and commitments could be as indicative of public participation in nondemocratic settings as actors shaping matters of their concern entirely under the radar of the state (Scott 1985; Clément and Zhelnina 2020).
Footnotes
Authors’ Note
This article reflects only the authors’ views, and the agency and the commission are not responsible for any use that may be made of the information it contains.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The study reported in this article has received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation program (grant agreement no. 948073).
