Doing things together
This international conference took place on 21–23 May, 2015, in Tomsk, Russia, and was jointly organized by the Centre for Policy Analysis and Studies of Technologies (National Research Tomsk State University, the Russian Federation) and the Department of Health, Ethics, and Society (Maastricht University, the Netherlands).[note 1]The conference programme can be found here: http://en.past-centre.ru/2014/05/call
This was the second event of the ‘Social Sciences and Medical Innovations’ conference series, which brings together people interested and involved in innovating medicine and health, including scholars from the social, physical, and life sciences, and representatives from nongovernmental organisations (NGOs), industry, and state organisations. The previous conference was held in May 2014 and resulted in a number of new interdisciplinary and international connections and collaborations.[note 2]The report on the previous conference is available here: http://www.tatup-journal.de/english/tatup142_zvme14a.php
But working together across disciplinary, sectoral, and geographical boundaries is still challenging in the absence of a common language and given the diversity of perspectives and concerns. That is why ‘togetherness’ was chosen to be the central theme for this second conference. Participants discussed collaborations between disciplines and fields, analysed ways in which innovations and settings work or fail to work together, and investigated the entanglements of technologies and politics. They went beyond the focus on collaboration between humans, stretching the understanding of ‘togetherness’ to encompass technologies, contexts, and values. ‘Doing things together’ is about innovation processes working in collaboration with governance structures, material environments, and cultural landscapes. While it is not possible to mention every talk that took place during the conference, in what follows we briefly sketch some lines of inquiry into modes of togetherness in innovating in medicine and health.
Politics and the normativity of togetherness
Boel Berner (Linköping University) in her keynote lecture entitled ‘The (many) politics of blood’, analysed the coming together of technologies, contexts, and values from the specific vantage point of blood. She demonstrated how in the early twentieth century blood emerged as a possible source of truth about individual and collective identities; how sociotechnical systems for blood transfusions developed with varying national blood donation regimes; and how with the emergence of HIV, questions of blood, risk, and sexuality became newly politicised. Reflecting back on the title of the conference series – ‘Social Sciences & Medical Innovations’ – and what she termed the ‘biopolitics of blood’, Berner spelled out that social scientists can be both critical observers, revealing unheard concerns and working to avoid uncritical support of divisive agendas for society, and insight givers on how technologies and human action are co-produced, engaging with others to innovate in medicine and health.
The issues of politics and values in medical innovations were extensively scrutinized by the conference participants. Among the presenters relating to these was Tetiana Stepurko (National University of Kyiv-Mohyla Academy, Kiev) who focused on healthcare governance in Ukraine. She emphasized the gap between an abundance of regulatory rules and actual practices, the centrality of personal connection mechanisms in decision making, and the importance of informal income for medical staff in running and maintaining facilities, all of which was contributing to a lack of transparency and often lowering the quality of services.
Olga Zvonareva (Maastricht University; National Research Tomsk State University) spoke about current efforts to boost innovative drug development and production in Russia and the sociotechnical imaginaries of the nation and its future(s) that have been mobilized and produced along the way, with the most pronounced one being the image of an independent and self-sufficient state. Importantly, the health needs of the population are receding to the background in these efforts, as the focus is on the establishment of a potent national pharmaceutical industry that is expected to ‘trickle down’ by itself to improve individual citizens’ access to pharmaceuticals.
Ekaterina Borozdina (European University at St. Petersburg) and Olga Melnikova (National Research Tomsk State University) both turned to the exploration of ‘demedicalisation’ processes that are intertwined with medical innovations in modern society, specifically those that involve the mobilization of various groups around ‘naturalness’ and minimization of technological interventions. Using the example of childbirth, Borozdina argued that the ‘natural’ childbirth movement in Russia is propelled by a more general neotraditionalist ideological turn. At the same time, (neo)liberalization and commercialization of health care in contemporary Russia is what largely enables ‘natural’ childbirth practices from legal and organisational standpoints. Melnikova further extended this demedicalisation analysis by showing how obstetricians use medical technologies, like monitoring, to actually minimize medical interventions and, somewhat paradoxically, achieve more ‘natural’ childbirth.
In his keynote lecture titled ‘The Social Study of Collaboration’, Bart Penders (Maastricht University) discussed frictions that arise as scientists work more with each other and increasingly with other knowledge sectors. He demonstrated how different research cultures view the moral foundations of science differently, and how ideas about credibility and the legitimacy of collaboration in science clash. The changing character of collaboration in science necessitates new ways of studying it to understand its shifting norms, synthetic capacities, failures, and life cycles. While the ‘science of team science’ has grown, extending the study of collaboration beyond sociometrics, still there is a need for more ethnographic inquiries into scientific collaboration research, going beyond lab studies to studies of multisited practices.
The theme of assembling togetherness through collaboration in health and medical innovations was reflected upon in multiple conference presentations. For instance, Konstantin Brazovskii (Siberian State Medical University, Tomsk) discussed the multitude of adjustments required to make an international collaborative 3D visualisation system for MRI images work and to allow scientists from Dutch and Russian institutions to work together. These adjustments included the alignment of data security protocols to ensure patient privacy and finding ways to quickly transfer large volumes of data across state and institutional borders.
Drawing on the example of telemedicine’s introduction to the Tomsk region, Yakov Pekker (Siberian State Medical University, Tomsk) analysed how technological innovation goes hand in hand with social innovation, for example, functioning telemedical systems necessitate the development of corresponding legal frameworks, of relationships between various participating experts, and of interdisciplinary education programmes, which would bring together biology, medicine, engineering, and ICT.
Evgenia Popova (National Research Tomsk State University) explored the strategies of Russian innovation companies and laboratories that are working in the area of medical devices regarding the development of relations and collaborations. She identified that strategies generally differ along two axes: whether organisations attempt to shape the regulation of the health care system or work within existing frameworks, and whether they envision entering international markets or prefer to stay within Russian national borders.
Many of the conference presentations explored how medical innovations themselves work (or fail to work) together in the contexts of their development and application. It was articulated that making innovations work entails embedding them in wider settings, in a process where both the settings and innovations change. Andrei Korbut (National Research University Higher School of Economics, Moscow) talked about the introduction of electronic medical records (EMR) in several state clinics in Moscow. Through investigating the perspectives and experiences of multiple actors, he demonstrated how the success of an innovation depends on the extent to which routine ways of doing everyday work in the clinics are taken into account. However, he pointed out that identifying potential problems, through feedback loops from physicians, is not ingrained in the EMR development process, which rather focuses on educating physicians to work with the constructed EMR.
Márcio da C. Vilar (Leipzig University) reflected on how in the course of the development of ‘immune stimulating’ therapy for several autoimmune rheumatic diseases, which are conventionally treated with immunosuppressants, law, science, and society co-produce what comes to be viewed as legal and illegal in Brazil. He argued that legal institutions are among both the most influential and the most affected actors positioned at the interface of scientific innovation, established medical science, and informal health care.
Alexandra Kurlenkova (Institute of Ethnology and Anthropology, Moscow) investigated the practices of assisted reproductive technologies (ART) in Russian clinics. As the ethical and legal regulation of ART practices in the country is rather general, local decision-makers (managers and doctors in in vitro fertilisation (IVF) clinics) have to, and are in a position to, handle many controversial issues themselves. They decide on adequate strategies for informing patients and donors, on appropriate age limits for ART use, on how to work with gay couples and HIV-positive people, and on issues such as monetary compensation for donors, anonymity, and the mutual obligations of the parties involved.
Several presentations were clustered around the topic of standardisation and evidence-based medicine (EBM). The topic area was first introduced by Nikita Zorin (Russian Society for Evidence-based Medicine) who reflected upon why the introduction of EBM in Russia has been so difficult. He offered three main reasons: misunderstandings of the subject related to a lack of emphasis on EBM in medical education, the lack of English-language skills among medical professionals, and the corresponding confusions about terminology; varying conceptions of medicine and the role of doctors in it among medical community members; and an absence of motivation for change tied to the underdeveloped area of insurance medicine.
Alina Valieva (Kazan State Medical University; Kazan Federal University) analysed the process of introducing a new quality management system based on the ISO 9001 standard into one of the Kazan hospitals. Alena Kamenshchikova (National Research Tomsk State University) discussed how clinical-economic standards feature in daily medical practice and how they influence conceptions of medical expertise. Natalia Shishkina (Federal Agency for Research Organisations) talked about the current efforts by expert organisations in Russia to develop a centralised mechanism for the transfer of the latest scientific knowledge into medical practice. Olga Fedorova (Siberian Medical State University, Tomsk) offered a perspective from the Russian medical community about how both clinical economic standards and clinical guidelines work in real medical practice.
An online section, which brought together participants located in Canada, Sudan, and the Netherlands, explored the central role of togetherness in finding ways to address asymmetries and inequalities in health. Lloyd Akrong (Maastricht University) explored how the globally expanding clinical trials enterprise blurs the line between research and health care in Ghanaian and Tanzanian settings. When research and care are done together in low-resource settings they facilitate each other, as facilities receive more equipment, drugs, trained personnel, and patients eager to take part in research, while concerns arise at the same time about asymmetries of power and exploitation that need to be carefully managed through dialogue. Christine Moon (Brown University, Providence), drawing on the example of South Korean elders living in Canada and their experiences with an increasingly medicalised social service system, exposed the need for more dialogue between different sociocultural worlds regarding the meaning of a good life and a good end of life, as well as the role of public health and biomedical technologies in these. Maarten Abeel (NGO Handicap International) focused on the disability-poverty-vulnerability cycle and the centrality of rehabilitation in breaking this cycle. He demonstrated that for rehabilitation to be productive, both persons with disabilities and rehabilitation workers need to engage with the wider context and each others’ systems of meaning to establish a ‘co-productive medical partnership’.
Temporality of togetherness
The roundtable ‘Linking History with Here and Now: Post-Soviet Public Health and the Biomedical Sciences’ led by Susanne Bauer (Goethe University Frankfurt) explored the temporal dimensions of togetherness. To understand the present of medical science and practice, roundtable participants traced the half-presences of the various pasts that continue to co-shape health-related fields in post-Soviet settings, while also paying attention to arising divergences. Participants from Bulgaria, Ukraine, Poland, and Russia shared thoughts on how Soviet health care infrastructure is being reformed under neoliberal pressures for more efficiency, and how this process influences people’s access to health care; on the role corruption is playing in health services provision and the different strategies to address it; on shifting ideas about the doctor-patient relationship; and on practices in health care that are rooted in the social conditions of the distant past, rather than evidence of their current beneficence.
Several conference presentations also spoke to the theme of the temporality of togetherness. For instance, Antonina Doroszewska (Medical University of Warsaw) discussed how current midwives’ practices in Poland are rooted in the past, when midwives’ functions were subsidiary to doctors’, and, simultaneously, changing dramatically with the introduction of new regulations after a political transformation took place twenty-five years ago that enabled midwives to take action to improve their social status and promote their activities. Ruslan Mitrofanov (European University at St. Petersburg) analysed how psychiatry was institutionalised in the Russian Empire, using the case of Kazan Province and reflected on broader issues of humanising psychiatric patients and improving conditions in the mental health facilities in the Soviet Union and contemporary Russia.
In the concluding lecture, Klasien Horstman (Maastricht University) reflected on togetherness and the ways in which public health interventions are designed and implemented, calling for more participatory and engaging organisation and practices. She gave examples of two public health projects, one designed as a randomised controlled trial, where all indicators, schedules, and activities were predefined by expert trial developers, and one designed by citizens themselves in collaboration with experts and authorities. Drawing on these, she demonstrated how a lack of citizens’ involvement in the design and implementation of public health programmes to improve their own health engenders alienation and distrust, curbing positive results and decreasing the willingness of people to participate in future programmes. Importantly, current funding schemes and accountability measures are not geared towards supporting the co-development of public health agendas and projects together with the public. Horstman’s lecture stressed the necessity of involving and giving the public a voice in innovating medicine and health, and the importance of continuous reflection on inclusionary and exclusionary practices as well as on what ‘doing things together’ with the public (can) actually mean.
About the authors
Olga Zvonareva is Research Fellow at the Department of Health, Ethics and Society (HES), Maastricht University, and also research fellow at the Policy Analysis and Studies of Technologies Centre (PAST-C) National Research Tomsk State University.
Olga Melnikova isResearch Fellow at the Policy Analysis and Studies of Technologies Centre (PAST-C) National Research Tomsk State University.