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Documents the surprising role pharmaceutical science and technology has played in Russia's search for national identity over a century of political turbulence. Over the last one hundred years, the Russian pharmaceutical industry has undergone multiple dramatic transformations, which have taken place alongside tectonic political shifts in society associated with the rise and fall of the Soviet Union and the emergence of a post-Soviet order. Pharmapolitics in Russia argues that different versions of the Russian pharmaceutical industry took shape in a co-productive process, equally involving political ideologies and agendas, and technoscientific developments and constraints. Drawing on interviews, documents, literature, and media sources, Olga Zvonareva examines critical points in the history of the pharmaceutical industry in Russia. This includes the emergence of Soviet drug research and development, the short-lived neoliberal turn of the 1990s, and the ongoing efforts of the Russian government to boost local pharmaceutical innovation, which in turn produced a now widely shared vision of an independent and self-sufficient nation. The resulting industrial organizations and practices, she argues, came to embed and transmit particular imaginaries of the nation and its future. Olga Zvonareva is Assistant Professor of Health, Ethics, and Society at Maastricht University in the Netherlands, as well as an Associate Professor at National Research Tomsk State University and Siberian State Medical University in Russia. She is the coeditor (with Evgeniya Popova and Klasien Horstman) of Health, Technologies, and Politics in Post-Soviet Settings: Navigating Uncertainties

This paper focuses on the recent interest in patient engagement (PE) in drug development, expressed in the growing number of calls for engagement, novel organizations dedicated to changing the culture of drug development, and guidelines for directing and evaluating PE. By reviewing materials produced by actors in the field and analyzing publications reporting on PE initiatives, I map sites of action where PE is being conceived and practiced, delineate how PE is being shaped, and analyze relationships emerging within and around the collectives involved. Pharmaceutical industry players actively mold the landscape of PE in drug development through creating tools and frameworks for PE. These instruments for guiding the implementation of PE are disseminated via training and dedicated events, concurrently disseminating a particular configuration of PE. PE emerges as an attempt to open new avenues for increasing productivity amidst concerns about the future of drug innovation, while PE practices fit smoothly into the arrangements for producing and distributing pharmaceutical knowledge largely shaped by the industry. The ongoing participatory turn in drug development is taking place without shifting the established concentration of epistemic power among commercial entities.

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.

AbstractPatient experiential knowledge is important for the quality and responsiveness of healthcare systems. However, it is not rare for patients to struggle to have their knowledge recognised as credible and valuable. This study explores how patient organisations work to adjust patient knowledge to formats recognisable and acceptable by healthcare governance decision-makers. Using the case of patient organisations in Russia, we show that such formatting involves changes in language, practices, and materiality that contribute to channelling patient participation into specific routes and forms while marginalising others. Channelling of patient participation, then, rather than being a result of direct coercion, emerges as a distributed process continuously co-produced by a multitude of actors, such as state administration, patient organisations themselves, patient surveys, consultative spaces, and normative acts.

PurposeThe distinction between formality and informality has been a topic central for many scholarly fields. Without rejecting the usefulness of this distinction, the authors argued that instead of analyzing an empirical situation in terms of what is formal and what is informal, it could sometimes be fruitful to focus on what is stable and what is fluid.Design/methodology/approachThis paper reports the results of review and analysis of secondary sources on the distinction between formality and informality, followed by a conceptualization of an alternative distinction between fluidity and stability. This conceptualization was inspired by a science and technology studies (STS) understanding of relations, and was assessed through applying it to a case of patient organizations' participation in patient councils in Russia.FindingsStability and fluidity do not map neatly into formality and informality; rather, the stability and fluidity cut across these categories. The authors propose a view of both stability and fluidity as kinds of relations between elements of the societal fabric. The distinction proposed here could be especially fruitful when applied to analyses of (1) complex bureaucracies where formal requirements are extensive and potentially in conflict with each other and (2) oppressive situations where significant power imbalances exist.Originality/valueInstead of providing yet another line of demarcation between formality and informality, this paper proposes a shift in attention to what is stable and what is fluid. This novel distinction can help not only in discerning how things actually work but also in bringing to the fore hitherto unnoticed forms of creativity, responsiveness and inclusion.

Chapter 1. Introduction. Dealing With Multiple Uncertainties In Post-Soviet Health, Technologies, And Politics; Olga Zvonareva, Klasien Horstman -- Chapter 2. Flirting With The Market. The Early Soviet Government And The Private Provision Of Health Care, 1917-1932; Pavel Vasilyev -- Chapter 3. (Re)Imagining The Nation? Boosting Local Drug Development In Contemporary Russia; Olga Zvonareva -- Chapter 4. Risky Economies: Innovation Of Medical Devices In Russia; Evgenia Popova -- Chapter 5. Medico-Economic Standards In Russia. Balancing Legal Requirements And Patients Needs; Alena Kamenshchikova -- Chapter 6. Introducing 'Natural' Childbirth In Russian Hospitals. Midwives' Institutional Work; Ekaterina Borozdina -- Chapter 7. Ova Exchange Practises At A Moscow Fertility Clinic: Gift Or Commodity?; Alexandra Kurlenkova -- Chapter 8. Innovating Health-Care Governance In Ukraine: Formal And Informal Practises; Tetiana Stepurko, Paolo Carlo Belli -- Chapter 9. Radiation Science After The Cold War. The Politics Of Measurements, Risks, And Compensation In Kazakhstan; Susanne Bauer -- Epilogue; Klasien Horstman, Olga Zvonareva.

This book uses a variety of empirical cases on topics including drug development, egg donation, and governance of healthcare facilities, to investigate how actors navigate the uncertainties that permeate the interfaces of health, technologies, and politics in post-Soviet settings and what the implications of their chosen navigation routes are. Contemporary societies are imbued with uncertainties, but the authors focus on settings where uncertainties multiply, making decisions, practises, and relations in everyday life precarious. Two worlds are brought into dialogue throughout the chapters of this book with the aim of facilitating mutual learning from one another - the world of science and technology studies (STS) and the high-income liberal democracies of the West, on one hand, and studies of post-socialism on the other. In so doing, this book encourages critical learning on ensuring the resilience of individual and societal health in situations of profound uncertainties. This timely collection will be of great interest to scholars, practitioners and policy makes in the fields of sociology, biomedicine, political science and public and global health.

Background: During the past decade, patient engagement (PE) has attracted significant attention in the field of drug development. Readiness to accept the central importance of patients' knowledge and contributions has become evident. This study aimed to synthesize evidence on the current state of PE in drug development: what is actually being done and how. Methods: A systematic scoping review was conducted based on a PRISMA-informed protocol. earch was performed in PubMed, EMBASE and Web of Science, covering the period between 2011 and 2021. For analysis of extracted data, we developed a framework for analyzing PE in Drug Development. The Framework distinguishes a number of different PE types that take place at different stages of drug development and are characterized by the different degrees of power patients have in the process. It allowed us to assess depth and intensity of PE initiatives included in this review. Results: Most included PE initiatives took place at the stage of designing studies (40 in total). At this stage drug development goals are already set, but the mode of reaching them has not yet been fully determined. PE initiatives on the finetuning details stage followed (16 in total). The finetuning details stage covers the last parts of the drug development trajectory, when only relatively minor issues are still open for patients' contributions. The least numerous were PE initiatives on the stage of setting up R&D program (13 in total). This stage refers to the early steps in drug development where PE has the potential to make the most impact on shaping the subsequent process. In terms of intensity of engagement, most PE initiatives included in this review align with consultation and involvement types, 26 and 30 initiatives, respectively. Partnership was less frequent in the published accounts of PE (13 initiatives). Conclusions: This review delineated a contemporary landscape of PE in drug development. Although attention to PE in drug development is relatively recent, a wide range of PE practices has already been initiated. The results indicate the necessity of distinguishing between different types of PE in order to understand consequences of choices regarding depth and intensity of PE.

In this article, we reply to 'Ethics and Epistemic Injustice in the Global South' (Kaur et al. 2023), a response to the original article 'Covert Qualitative Research as a Method to Study Human Rights Under Authoritarian Regimes' (Hopman 2022). Our reply is written by authors who have expertise and direct experience with the issues at stake (authoritarianism, Global North/Global South relations, covert research methods, epistemic injustice). We show that while there are some interesting points raised in the response article, in general, it does not do justice to the arguments presented in the original article. Instead it constructs a 'straw man' by misrepresenting claims in the original article, attributing to it assumptions that were not there, and lumping together notions such as authoritarian zones and Global South, that were not equated in the original article. After providing arguments for this position and discussing the main topics of the critique, we present two new elements: first, a contribution by someone from Moroccan controlled Western Sahara (MCWS), who experienced covert research as a research participant. Second, an overview of lessons learned from this exchange. These include: 1) instead of authoritarian zones, 'authoritarian situations' is a more appropriate concept; 2) projects using covert research should strive to include overt and participatory elements; 3) a response article alleging epistemic injustice should create space for the people concerned to speak for themselves.

AbstractTuberculosis (TB) remains a major global public health problem that has become a crisis fuelled by HIV and the increasing occurrence of antimicrobial resistance. What has been termed the biosocial nature of TB challenges effective control of the disease. Yet, biosocial interactions involved in the persistence of TB in diverse settings are difficult to systematically account for. The recently developed framework of syndemics provides a way to capture how complex health problems result from the interactions between diseases such as HIV and TB, and harmful social conditions such as unemployment, malnutrition and substance abuse. This article advances the syndemics scholarship by examining health conditions that cluster together with TB in the Russian Federation, by eliciting a set of social processes that precipitate this clustering and exacerbate health outcomes, and by analysing interactions between these health conditions and social processes. To provide an account of this complexity, the article takes a qualitative approach and draws on the perspectives and experiences of people with TB. The results demonstrate emergence of a syndemic of stress, substance abuse, TB and HIV that is sustained by poverty, occupational insecurity, marginalization and isolation. Frictions between the narrow focus of the health care system on TB and the wider syndemic processes in which the lives of many persons with TB are embedded, contribute to poorer health outcomes and increase the risks of developing drug resistance. Finally, the article argues that the large-scale and impersonal forces become embodied as individual pathology through the crucial interface of the ways in which persons experience and make sense of these forces and pathologies. Qualitative research is needed for the adequate analysis of this biosocial complexity in order to provide a solid basis for responses to TB-centred syndemics in various settings.

Rhodiola rosea is a Siberian medicinal plant possessing qualities of a central nervous system stimulant that has been traditionally used in the folk medicine of the indigenous peoples in Siberia. Between the 1960s and the 1980s, the plant had been intensively studied in the scientific laboratories of Tomsk. The study of physicochemical properties of the plant and its effects on humans was initially carried out in the Tomsk Medical Institute (TMI) by a large research group headed by A. S. Saratikov and E.A.Krasnov. Following a series of animal studies in the early 1960s, Saratikov started to enlist human volunteers from TMI students and stuff and examine the effects of the plant on concentration and auto-suggestion. These trials were later expanded, and a number of medical institutions in Tomsk incorporated them into their research programs, seemingly hailing Rhodiola rosea as a potential all-curing miracle drug for the overworked and stressed modern self. (Interestingly enough, there has recently been a renewed interest in the plant in the West that has corroborated a number of Soviet findings). At the same time, research into the history of Rhodiola rosea trials also highlights both numerous ethically problematic issues in the treatment of research participants as well as unexpected divergences from the officially prescribed Soviet clinical trials practices. Using examples from a large number of published scientific studies and corroborating them with materials from oral history interviews with researchers and study participants, this paper explores the local idiosyncrasies that shaped Soviet clinical trials on the ground.