“Will this be the same story with every new virus emerging on the global horizon, every year?” The question that Vincanne Adams asks in “Disasters and capitalism…and COVID-19” leads us to the uncertainties of living in anticipation of a crisis, an emergency, a disaster, or even the next epidemic. Epidemics are experienced by those who are affected (and who are never affected equally) and those who respond, whether through preparedness, response or control operations (as we can recall from the experience of Partners in Health in the Ebola epidemics between 2014 and 2016).
Epidemics are always simultaneously biological and social. Exposure to risks, the (in)ability to live “healthy lifestyles” or to access medical care exacerbate health problems and shape experiences of structural vulnerability that matter, as the work of Philippe Bourgois and colleagues (2017) reveals. The complex social, ethical and political dimensions of the COVID-19 pandemic interest us for the future lessons they offer towards the construction of a more critical, ecological and democratic epidemiology and global health.
Plataforma de Saberes
The project “Plataforma de Saberes: Community Participation and Involvement in Health Promotion Actions” is coordinated by the Laboratory of Epidemiology Research and Social Determination of Health at the Evandro Chagas National Institute of Infectious Diseases (INI/Fiocruz), in the Northern area of Rio de Janeiro, in collaboration with researchers from the Center for Social Studies (University of Coimbra, Portugal). Plataforma de Saberes is part of a long-running action-research trajectory (since 2005) focused on collaborative knowledge production and the creation of innovative practices in health promotion in the context of clinical, epidemiological and social research on infectious diseases (HIV, Chagas disease, tuberculosis, among others). Plataforma de Saberes is also a space for encounters and engagements between researchers, health professionals, patients, members of community groups (“community health promoters”) with the practices and knowledges related to diseases, health care, public health and health promotion.
In a trajectory of actions beginning in 2005, this space was initially closer to the configuration of a clinical encounter – defined by the invisibility of knowledges, experiences, and life stories of patients as seen through epidemiological and clinical metrics and classifications. But other transformations took place in these encounters. Beyond the biomedicalization of subjects and living spaces and the processes through which “healthy lifestyles” and sanitary citizens are co-produced in clinical research, alternative dialogues also emerged in Plataforma de Saberes concerning neglected suffering, stigma and social exclusion and problematic situations that are not visible in clinical encounters. Infectious and chronic disease patient care, support and treatment concerns became progressively visible and part of individual and collective actions addressing those who are affected by health problems and diverse forms of vulnerability, requiring innovative approaches to care.
Health promotion practice in this platform is now sustained by a strong commitment to create the infrastructural scientific and collective spaces for encounters of knowledges, experiences and everyday problems and struggles arising from the lived experiences of individuals and groups. This situated approach requires the capacity to critically engage scientific knowledge and health standards as they are interpellated by local knowledges and contexts in collaborative settings, connecting place and history and defining a caring responsiveness to problems by researchers and health professionals (as Maria Puig De la Bellacasa reminds us) which also affects the production of knowledge on health, infections and social determination of health.
In this continuum of experimenting and contextual configurations of health promotion, patients started to assert themselves as community health promoters. Their actions were bringing to the fore neglected aspects that remain invisible if we look at a problematic situation as a clinical case, or as part of a cartography of the intersections between clinical research, social epidemiology/social determination based on a normative vision of public health intervention. This is the case even when the approach is expanded by the interdisciplinary dialogues that take place here. The dialogues began to focus on sharing problematic situations that were not visible in clinical spaces: situations of neglected suffering, stigma endured at the clinical encounters, social exclusion in their communities as HIV patients, for example.
One of the interventions of Plataforma de Saberes is the “Consulta de Promoção da Saúde” (“health promotion appointment”). It was implemented in April 2019 at INI/FiocruzDay Hospital and is held by a specialist in public health and epidemiology. The definition and implementation of the protocol were developed by epidemiologists and social researchers as a space for informing and solving individual and collective problems related with sanitation, food access, financial support to attend clinical appointments, family issues, racial, stigma and violence concerns. These concerns are brought to the appointment by INI patients, their friends/family, and members of community groups and associations actively engaged as community health promoters, with increased agency in addressing situated health problems together with researchers and health professionals. The cases reveal the importance of looking at the “health promotion representation of matters of care (Puig de la Bellacasa, 2011) challenging us to think about these encounters from the standpoint of the care they produce in situations like the current pandemic.
COVID-19 as a matter of care
A recent interest and health concern was shared by the community health promoters: they wanted toknow more about the new virus SARS-CoV-2 and COVID-19 that had already reached the territory where they live. As patients with infectious disease (HIV, Chagas disease, tuberculosis, among others) and chronic and degenerative diseases (such as neoplasms) and other health problems, many of them belong to risk groups as defined by the Brazilian Ministry of Health. Together with epidemiologists, infectious disease specialists, members of the INI/Fiocruz Hospital Infection Commission and these community groups, the project team organized a group conversation (roda de conversa) “Contribuições dos Promotores da Saúde Comunitária na prevenção e controle do novo Coronavírus” (Contributions of Community Health Promoters in the prevention and control of the new Coronavirus) to engage the larger community in the recognition of fake news that were already circulating about COVID-19. An information material, “What you need to know to prevent COVID-19”, was produced and a 50ml alcohol gel bottle and tissue packs were to be distributed to the participants. The confirmation of the first case of local transmission by the health authorities of Rio de Janeiro on 12 March and the disclosure of new cases by the State Department of Health made the cancellation of the event inevitable. The day before, the governor of the State of Rio de Janeiro had already decreed measures to respond to the public health emergency of international importance resulting from the new coronavirus, including social isolation in the state of Rio de Janeiro, as a way to reduce community transmission of COVID- 19. We became concerned with the possible effects of these measures on the existing social distance and exclusion that the project was trying to reduce. We remained close to these groups – many of them compose of INI patients – under the new conditions, and set to work on building relationships of trust and care through health promotion activities. Due to the imposed social isolation, we thought of using WhatsApp as a communication tool to collectively respond to these challenges, reinventing Plataforma de saberes as a virtual space. The WhatsApp group “Cuidar para Evitar” (Caring to Avoid)” was a space for dialogue and knowledge sharing on the prevention of COVID-19.
Researchers, health professionals and leaders and representatives of community groups thus became involved in sharing experiences in minimizing the consequences of social isolation during the epidemic and in forms of caring for those who continue to share knowledge in their communities as a way of caring for themselves and others. This group will be active throughout the duration of this pandemic and will be coordinated by the epidemiologist in charge of the project. By working towards the opening up of new spaces in Plataforma de Saberes for ecologies of practices and care as a form of intervention involving epidemiology, the social sciences and the local knowledges of participants, we hope to contribute to different stories that recognize interdependence and pragmatic solidarity (Saussy, 2010) as drivers of creative responses to the current pandemic.
The experience of this collaboration and the commitment to the future of those who will be most affected by the epidemic is guided by a concern with those who care. Caring for knowledge – and for the knowledge producers, is our modest attempt and commitment to share the weight of their worlds and to develop an ethics of care that, as Elizabeth Povinelli (2017) tells us, is necessary to enact the possibilities of a life as good as possible.
Bourgois, Philippe, Holmes, Seth M., Sue, Kylie, Quesada, James (2017), “Structural Vulnerability: Operationalizing the Concept to Address Health Disparities in Clinical Care”, Academic Medicine, 92 (3), 29-307.
Povinelli, Elizabeth (2011), Economies of Abandonment: Social Belonging and Endurance in Late Liberalism. Durham, North Carolina: Duke University Press.
Puig de la Bellacasa, Maria (2017), Matters of Care: Speculative Ethics in More Than Human Worlds.Minneapolis: University of Minnesota Press.
Saussy, Haun, ed. (2010), Partner to the Poor: A Paul Farmer Reader. Berkeley: University of California Press.
Patrícia Ferreira has a degree in Biology and a master in Science Communication. She is currently working on her PhD thesis in “Governance, Knowledge and Innovation” at the Centre for Social Studies (University of Coimbra, Portugal), where she is engaged in collaborative research projects intersecting social sciences, public health and life sciences. Her field of research focuses on the development of critical perspectives on knowledge production practices in the global health arena from Studies of Health and Medicine, Medical Anthropology and Critical Global Health perspectives.
Claudia Souza is an epidemiologist and head researcher in Public Health at the Oswaldo Cruz Foundation (Fiocruz), Rio de Janeiro. She is also the leader of the CNPq Clinical Research Group in Epidemiology and Innovative Technologies in Health and coordinator of the Laboratory of Epidemiology Research and Social Determination of Health, Evandro Chagas National Institute of Infectious Diseases (INI/Fiocruz).
Clarice Santana is a physiotherapist and a specialist in Health Promotion and Social Development by the National School of Public Health (ENSP/Fiocruz, Rio de Janeiro, Brazil) with a master in Biosciences and Health Education at the Oswaldo Cruz Institute (IOC/Fiocruz). She is a PhD student in Biosciences and Health Education (IOC/Fiocruz).
João Arriscado Nunes is Full Professor of Sociology at the School of Economics and Senior Researcher at the Center for Social Studies (University of Coimbra, Portugal). He is a member of the Research Group on Epistemologies of the South. His main area of research is Social Studies of Health and Medicine, with a focus on Collective Health in Brazil, Critical Global Health and intercultural approaches to health.
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