Annotation of the results obtained in 2021
Continuous reforms in the healthcare system constitute one of the distinctive features of Russian social policy during the post-Soviet period. Many social studies consider the institutional aspects of these reforms - they show that in a changing socio-political and economic context principles of healthcare regulation are characterized by particular complexity. These principles combine elements of different institutional logics - bureaucratic, market, and professional. Within healthcare organization these logics coexist, and sometimes contradict each other, thus settling the dynamics of interactions between doctors and patients. This research project aims to explore how these conditions shape practices and attitudes associated with patient-centered care. Unlike many other authors, focus not only on the institutional framework and on normative presumptions regarding patient-centeredness, but also try to explore the local initiatives of professionals and the agency of patients. This theoretical and methodological approach provides a more comprehensive view of the phenomenon under investigation: we consider both the structural prerequisites/limitations for the development of patient-centered care and the actions of institutional actors, who develop it at the micro level. During the third year of the project, research we concentrated on several areas of study. First, we continued to analyze the emotional dimension of medical care as an important component of patient-centeredness. In particular, we have studied how, in the context of Russian maternity care reforms, emerge initiatives of professionals that are aimed at making medical interactions more comfortable for patients. On the one hand, these initiatives are influenced by structural trends - the commercialization of health care and the spread of gender neotraditionalism in the society. On the other hand, they are conditioned by the professionalization efforts of the birth specialists (midwives, doulas, perinatal psychologists, etc.), i.e. their efforts to attain greater professional autonomy and to strengthen professional authority. Importantly, we the observed contradictory nature of such initiatives. Such professionals’ initiatives are often implemented with the reliance on informal mechanisms (for example, informal payments), which contributes to the preservation of negative features in the organization of medical care. These initiatives also frequently reinforce social inequalities between patients, as more emotionally comfortable services are available mainly to wealthy clients. In addition to studying the position of female patients in the field of reproductive medicine and medical initiatives addressed to women, we decided to study the position men as customers of reproductive services. We collected two sets of semi-structured interviews that reflect the problematic aspects of childbirth-related male experience - the experience of fathers whose partners had a perinatal loss (interviews were collected during the second year of the project), and the experience of men whose child was born using assisted reproductive technologies. At the moment, we are analyzing these materials, focusing on the features of the medicalization of male reproductive experience, on the specifics of constructing reproductive experience as a family (and not just female), as well as on the strategies that men develop to navigate the system of obstetric care. In addition to the peculiarities of the patient experience of men, we also considered the peculiarities of the social construction of the newborn as a patient. By employing extensive data of ethnographic observation in medical hospitals, we traced how different medical professionals in the course of clinical encounters construct the position of the newborn patient. Physicians have different perspectives on a newborn patient - in some cases, professionals objectify the patient, and in other situations, they endow him (and his relatives) with greater agency. These differences determine the position of the patient and affect the very format of medical care provided - professionals either focus on the biomedical perspective, or strive to implement an approach that is more individualized and which offers emotional comfort to patient’s relatives. In recent years, the new coronavirus pandemic has become a critical challenge to health systems across the globe. A part of our study has been dedicated to exploring how the patient's position is changing in these extreme circumstances, we have also investigated the strategies that patients develop to ensure access to medical services of high quality. We focus on the experience of patients, who live with chronic diseases and whose access for regular medical care has been limited due to COVID-19 epidemiological restrictions and the overburdened health system. We conducted interviews with two groups of Russian patients who experienced a relapse of a chronic disease within the past two years: 1) people living with diabetes, 2) people diagnosed with psychiatric disorders accompanied by anxiety symptoms. Now, we are analyzing the collected interviews using the thematic text analysis. In line with other parts of this research project, the preliminary results of the analysis show the importance of local initiatives (both patients’ and professionals’ initiatives) to ensure the quality and personalization care in the context of a pandemic. Along with the parts of the project carried out in a qualitative methodology, during the third year of the study, we continued to collect and analyze the claims of patients against Russian healthcare institutions and individual medical professionals. We have created a unique database which contains the texts of 498 court decisions on ‘medical’ cases issues in 2018, 692 texts of court decisions issued in 2013, and 401 texts of court decisions issued in 2020. The base, allows to analyze the correlation between the amount of healthcare financing in the Russian regions, the number of doctors in the regions, and the number of cases when patients were not satisfied with the quality of medical care. The database also allows to research how various kinds of problems that arise during the treatment process (the error in the diagnosis; complications after medical intervention; incorrect treatment; failure to provide medicines and other resources; mistakes in medical documents, etc.) are assessed by the courts and to what extent each of these issues is taken into account when awarding the amount of compensation to the injured patient

 

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Annotation of the results obtained in 2019
This interdisciplinary research project focuses on the problem of providing high-quality patient-oriented medical care. The project deals with two main aspects of this problem that exist in modern Russian healthcare: 1) we study of the patients’ demands and how they evaluate the quality of the received medical care; 2) we study the opportunities for providing more patient-oriented medical care in Russian medicine, especially, we are interested in those patient-oriented innovations that are developed at the ground level by physicians and patients In the first year of the implementation of the project we conducted the study of norms and rules that govern interactions in Russian healthcare. For more than a quarter of a century, Russian medicine has been undergoing a series of reforms. This institutional changes have become the focus of our analysis. We analyzed the ongoing transformation in health policy and in organizational regulation of the sphere from the perspective of neoinstitutional theory. We have approached the process of change as a rivalry of successive or coexisting institutional logics that define the core values in the healthcare field, determine a repertoire of possible actions, form the identities of actors, and are cast and enforced at the level of formal standards. The key logics include professional, managerial and market logics. We show that a distinctive feature of Russian healthcare: it is dominated not by professional, but by the managerial logic (to a large extent this logic is embodied in extensive governmental intervention in this area). In order to study how formal norms are embodied in the practice of health-care institutions, we carried out an empirical research in the genre of institutional ethnography. The study included a series of observations during six months in various departments of one of the Russian perinatal centers. In the process of observation, ethnographic conversations with medical professionals were also conducted. We also had the opportunity to follow the work of individual specialists during their work day in the organization - we observed how the work of each of them is organized during the day, and how they interact with other professionals and patients. In order to supplement the medical perspective with the perspective of patients, we conducted interviews with patients who gave birth in the center during the past 3 years. We plan to enhance our study of the health care system with a statistical analysis of the data of court decisions in cases where the defendant is a medical institution and / or medical professionals. This body of materials provides valuable information about the conflicts between physicians and their clients, shows which points in Russian medicine are the most problematic in terms of patient dissatisfaction, finally, it reflects patient expectations regarding the quality of medical services, and makes it possible to understand representatives of which social groups are ready to defend their health-related rights. During the first year of the project, we have created a data base of “medical” court decisions. About 500 texts of the court decisions were collected, all of them were encoded: for the purpose of subsequent statistical analysis, a table was prepared representing the information contained in the decision in a structured form distributed along 30 variables. In the upcoming year, we will continue to supplement the collected database, will proceed with its statistical analysis, as well as with a qualitative analysis of the texts of the collected decisions. Along with the main line of the project, two sub-projects have been launched within general framework. One of them is associated with the provision of medical care and emotional support to women who have experienced reproductive loss; the second - with the ideas and choices of parents who refuse to vaccinate children. At the first sub-project, interviews were conducted with different groups of professionals who interact with women who find themselves in a situation of losing a child. Interviews were conducted with doctors, midwives, psychologists, specialists in perinatal palliative care, doulas, and members of charity organizations. The focus of the study was the emotional work that these specialists carry out in relation to patients. Particular features of this work are the subject of active discussions between different groups of professionals. This study allows us to compare their perspectives and assess the multiple vulnerabilities of professionals and patients in the Russian healthcare system, as well as to analyze the range of issues associated with understanding what underlies the patient-oriented approach in Russian healthcare. In the frame of the second sub-project, we conducted interviews with Russian parents who avoided vaccinating children. The purpose of the study was to describe this social group, to elucidate the reasons for their refusal to vaccinate, as well as to identify patients’ alternative strategies regarding care for children's health. Preliminary results of the study show that the group of “anti-vaccination” parents is less homogeneous than is commonly believed, and the practice of refusing vaccination is more complicated - along with a complete rejection, we can distinguish a strategy for deferred vaccination and selective vaccination. In addition, it is important that Russian parents refuse vaccination not only because of distrust to median knowledge per se (as was shown in foreign studies on a similar topic), but also because of institutional distrust - dissatisfaction with the institutional organization of medicine, the inability to find a doctor who provides accurate information in a intelligible form. The collection and analysis of data in this sub-project will be continued at the next stage of the project.

 

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Annotation of the results obtained in 2020
The task of improving medical care is one of the priorities for Russian social policy. The COVID-19 pandemic that affected healthcare systems around the world has also exacerbated the importance of this issue. This research project considers on one of the key aspects of this problem for modern society - the issue of patient-centered medical care, in particular, the influence of institutional context of post-Soviet medicine on practices of medical professionals and their clients, and types of patient-centeredness that can be exercised in this organizational environment. Two key research goals powered the development of this project: 1) studying how the institutional barriers and resources that exist in Russian healthcare condition the development of a more personalized approach to patients; 2) analysis of individual grassroots initiatives (first of all, initiatives of medical professionals), which are aimed at developing the principles of patient-centeredness in Russian clinical setting. During the second year of the project, our focus was both on the cognitive and affective dimensions of healthcare institution. First, we studied how existing regulatory principles and classification schemes (which jointly constitute institutional logics and structure life in organizations) determine the implementation of a patient-centered approach. Based on the data from the interviews with medical professionals, we singled out that the spread of market logic in the post-Soviet transformations is a significant incentive for the implementation of patient-centeredness in clinical practice. However, it is also important that grass-root initiatives of doctors aimed at making treatment more attuned to peculiarities of each patient’s case are determined by professional logic to a greater extent than by the trend of healthcare marketization of the healthcare. On this basis, it can be stated the prior importance of the autonomy of the medical profession for the development of patient-centered medical care in post-Soviet settings. The issue of institutional rules in healthcare and their interpretation by citizens became central to the subproject devoted to the vaccination hesitancy among Russian parents. The problem of refusal to vaccinate is acute in Russian society - according to the polls of the Public Opinion Foundation, less than half of Russians consider it necessary to go through vaccination according to the established vaccination schedule. The discussion around the development and use of the Covid-19 vaccine has made this issue even more urgent. Our research shows that at the basis of the refusal to immunization lies not distrust to medical knowledge, but institutional distrust, namely, citizens' dissatisfaction with the excessive bureaucratization of healthcare, and the lack of attention to the specifics of the situation and demands of each patient. The interview data set that we collected last year reflects significant heterogeneity in parents’ patterns related to children immunization, thus, we conducted additional interviews this year, which will be analyzed in the upcoming project period. In addition to analyzing the rational elements of institutional life, our attention was focused on the affective side of social interactions within medical organizations. By doing so we follow the latest theoretical trend in neo-institutional theory - attempts to comprehend not only the role of rules in the work of an institution, but also the role of emotional styles and emotional work of professionals. On the one hand, the context of post-Soviet institutional transformations provides a suitable platform for examining how the feelings of institutional actors are intertwined with regulatory reform. On the other hand, attention to emotions is an extremely important moment for the research as we want to approach the problem of patient-centered care in a comprehensive manner, i.e. not only from a biomedical perspective, but also from the perspective of the patient's lived experience. Empirically, the study of the intersections between institutional transformations and the emotional order of healthcare organizations was carried out in two main directions. The first one is represented by the study of emotional styles in Russian healthcare institutions (based on materials of ethnographic observation and interviews with professionals). We have identified two main emotional styles: "rudeness", which correlated with the excessive bureaucratization of the work of professionals, and "smiling", which is grounded in consumerism and the commercialization of healthcare. It is important that the practices of doctors, midwives and nurses do not completely follow any of these styles - medical professionals reflexively navigate different emotional styles, depending on the pragmatics of a particular interaction and the specifics of patient's case. The second line here is a comprehensive study of emotional work in the case of perinatal loss. This year, we continued to look at how different professionals who deal with reproductive loss situations define this experience and what are the strategies that they choose to interact with women. In addition to the professional perspective and the perspective of female patients, it seemed important to us to consider the experience of fathers, thus examining the reproductive loss not as individual experience, but as a family experience. We conducted interviews that reflect the role of fathers in providing emotional support to women and (usually not acknowledged) emotional needs in such a dramatic family situation. In addition to the qualitative research strategy (ethnographic observations in medical institutions, interviews with professionals and patients), we also applied quantitative strategy of sociological work. It was used to collect and analyze data from court decisions from trials against doctors and medical institutions. We began this work last year, with the goal of collecting a database of court decisions for 2018 in order to determine the characteristics of the organizational conditions in which dissatisfaction with medical services arises (which sectors of health care and what types of medical organizations are ‘leaders’ in terms of legal claims), social characteristics of citizens acting as victims and plaintiffs in such cases (gender, marital status, region of residence), peculiarities of the treatment situation underlying the conflict. In the second year of the project, we continued to work on this topic by collecting data on court decisions that were issued in 2013. We aim to conduct a comparative analysis of the two resulting databases and to explore what changes have occurred over five years in the field of citizens' claims to medical professionals and organizations.

 

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