Decolonisation as a pathway to rebuild health research — Reflections from Latin America

Decolonisation as a pathway to rebuild health research — Reflections from Latin America

“How do we produce knowledge in ways that include diverse voices and perspectives? How do we deal with centuries of exclusions and health inequalities that mean some voices have been systematically marginalized in academic research? What are the solutions and best practices implemented by researchers and communities in these processes? And what can we learn?”

These questions sparked enlightening discussions with researchers, activists, and community representatives from Latin America, engaged as part of the collaborative Centres for Exchange project, commissioned by the Wellcome Trust in partnership with Pivot Collective. The overall aim of the project is to support more effective and meaningful routes for diverse communities to participate equitably in research. In the piece below, we share a synthesis of the preliminary results and reflections emerging from a review of Latin American literature, in-depth interviews, and workshops carried out with community engagement experts from Brazil and Mexico.

One of the most unequal regions in the world, Latin America is marked by deep and violent inequalities that were historically and strategically constructed during the European colonization and the resultant unequal land distribution, enslavement of African people, and the genocide of indigenous people. Throughout the centuries, poverty and social inequalities resulting from classism, racism, and sexism have been reflected and reinforced in various aspects of the lives of Latin American people. During the 20th century, developmental economic models introduced new social inequalities that accentuated the health inequities of the most vulnerable populations. Countries like Brazil, Chile and Argentina faced long periods of dictatorship, while others (like Mexico) went through decades of authoritarian regimes with the suppression of civil liberties and violations of human rights.

Precarious housing conditions, hunger, preventable diseases, and violence are some of the consequences that are still evident today. Disparities in the region continue to be closely tied to skin colour or ethnicity — whites, blacks, and indigenous people are at significantly different levels in the social hierarchy. In Mexico, for instance, 70% of the indigenous population lives in poverty, compared to 40% of the non-indigenous population. In São Paulo, Brazil, life expectancy in one of the largest favelas, Paraisópolis, is 10 years less than for those living in Morumbi, a wealthy neighborhood adjacent to this community. Access to education and knowledge production by research institutions has been restricted to a wealthier portion of the population and framed for a Global North audience.

At the same time, popular resistance and the human rights movements played crucial roles in transitioning to more democratic regimes in many places. Social movements and non-governmental organizations have been (and still are) key actors in the fight for equity, social justice, and inclusion in various social spheres. In health research, Latin America has been developing strategies to overcome the dismal consequences of colonization and working to redress injustices, making efforts to shake them and to generate transformative experiences through collaborative work between researchers and society, mainly local communities. The now mainstream concept of decolonization and its experience were brought to life in Latin America by authors like Aníbal Quijano, Maria Lugones, Walter Mignolo, Gloria Anzaldúa, Paulo Freire, Milton Santos, Fals Borda, and others.

Since 1960, the fields of Latin American Social Medicine and Collective Health emerged to denounce the limitations of scientific medicine, to explain inequalities in health-disease profiles and to transform the health conditions of populations. These epistemological and political movements in defense of the right to health hold as their central element the interdisciplinarity of knowledge, practices, and policies — and operationalise social participation as a fundamental tool in health research and in the health system.

The need to link theory with practice encouraged supporters of these movements to mobilize different sectors of society, including social movements, to improve their health conditions. In Brazil, in response to these calls for change, the Federal Constitution of 1988 guaranteed social participation in the management of government policies and programs, formalizing effective social participation in different state levels.

In summary, an understanding of the historical processes of decolonisation and democratization is central to Latin American critical epistemologies, practices, and social and political struggles. These movements have shaped scientific knowledge production in the region in profound ways.

“The ‘balacobaco’ of participation”

In Latin America, there are many experiences related to social participation in research and in the formulation of public policies. Drawing from these diverse experiences, the ‘balacobaco’ (or uniquely beautiful and disruptive element) of Latin American approaches to social participation in research starts to emerge. Fundamental to this approach is a commitment to truly context-driven, collaborative, and indigenous forms of knowledge production.

For this project, we documented five models of practice that evoke this uniquely Latin American ‘balacobaco’. These include two case studies from indigenous women’s organizations in Mexico. Through collaborative research, they have come to understand how gender-based violence is experienced at the local level, and how it can be resolved. Their participation has occurred in most of the steps of the research, from the design of a shared agenda, through data collection to publication.

We also documented three case studies in Brazil, two based on institutional cooperations between the research institute Fiocruz and communities in Rio de Janeiro, and one about the oldest active HIV/AIDS NGO (ABIA) in Brazil. Their experiences reveal the importance of fostering more effective modalities for working in genuine collaboration with communities often ignored by researchers and health authorities. Indigenous women, vulnerable populations, and people living in other territories of exclusion have their own embedded understandings of their contexts and health issues, as well as of what constitutes ethical research. The researchers involved in the models of practices we’ve studied have worked to build critical participatory approaches and initiatives of mutual and decolonial exchanges, inspired by the epistemological and political traditions of Latin American Social Medicine.

Following the case studies work, we held a participatory workshop with representatives from the organizations we studied as well as other researchers from Brazil and Mexico. Workshop participants raised many questions about how and for whom science is produced. These provocations led to a discussion that emphasized the need for ongoing dialogue with diverse communities as an essential process to understand how science can address urgent issues and needs in a particular territory.

“It is necessary to listen to and see the people with whom we want to relate. This is because, in general, science tends to impose verticality that compromises participation in its political and full sense. The participatory science we need is the one that builds its problem together with the populations it wants to intervene.” (Researcher and activist)

“We need to start building our research problems in continuous dialogue with the social actors of the territory where we work…and we need to listen fully to enable the participation of all social actors. Consultation regarding objectives, methodology, continuous consultation on all steps we take, including results…” (Researcher)

At the same time, there was a consensus among the group that investments in social participation processes that allow collaborative work between researchers and communities are permeated with tensions, especially in decision-making moments. Although the dialogue between the parties allows for this collective mobilization for co-production, it is important not to lose sight of the fact that this type of articulation is essentially an uncomfortable movement that takes us out of the status quo. More than that, it requires a willingness to share power over the project’s progress with participants.

Participation, on a horizontal basis, brings the idea of doing it together. This means assuming responsibility, costs, and enjoying the benefits equally. (Researcher and activist)

‘The ‘balacobaco’ of participation, I would say, is wanting to see what will happen outside of dirigisme” (or state control), concluded one of the participants, who is a researcher and activist. In his reflection, he was referring to the attitude of the participants in the process of collaborative knowledge production based on democratic values and communities taking control to achieve goals and meet their needs.

In Latin American research, the decolonial perspective is often seen to be an epistemological and political lens that must be summoned to produce truly transformative understandings of a given social reality. This concept is crucial in this context because it challenges historical structures of cultural domination that have shaped the relationships between researchers and communities. The search for participatory and collaborative approaches in research not only recognizes, but also values of the local knowledge and perspectives, promoting a more equitable and just narrative in knowledge production.

“We come from a culture where the voice of the people, the voice of those from the periphery, is frequently not considered. But then I ask you, who knows where it pinches? Only the user knows where it pinches.” (Community representative)

“It is necessary to recognize the knowledge of the organic intellectuals — leaders who have a lot of knowledge, even if they do not have the title. That is key, as a place of dignity, of recognition of their work, of participation in decision-making, of dialogue outward public, dissemination of the results.” (Researcher and activist)

Community as a place of resistance

“The community as a territory is a place of resistance and knowledge.” This statement, shared by one of the workshop participants, points at the historical silencing of vulnerable people from the process of scientific knowledge production and how it has been detrimental to more consistent social progress.

Firstly, it is necessary to relinquish the meaning of the concept of territory as a delimited geographic area. In the definition of the Brazilian geographer Milton Santos, it expands to encompass social, cultural, and, above all, political dynamics in a particular space. Thus, for communities, territory is a living place, a space of struggles, conquests, and identities. Secondly, specific knowledge is produced within particular territories to address problems that emerge in this particular place — and that often go unaddressed by science or the government. In this sense, a community representative who participated in our workshop argued that understanding how grassroots organizations function in terms of being places of support and development is crucial for those seeking to engage in collaborative knowledge production.

In this regard, communities are places of resistance in terms of how they perceive their participation in scientific production, especially in health. For the workshop participants, communities should be collaborators involved in all stages of the scientific process from setting a shared agenda, collecting, and analyzing data, to writing the reports of the research.

The activist-researcher

It is not an easy task to adopt a decolonial approach in scientific production for those who were trained in a model influenced by colonialism and the positivist view that seeks to exclude subjectivities, and consequently, the experience of historically vulnerable and silenced groups. In this traditional scientific approach, researchers are called to be objective and to distance themselves from the phenomena they analyze, relying instead on data and formal academic literature. Social participation is thus restricted to giving informed consent, answering questionnaires, interviews, and clinical tests, that is to say, as being an informant.

Workshop participants described how they had worked to disrupt this model, resulting in the production of knowledge closer to the interests and needs of a particular population, often referring to themselves as ‘activists researchers’. Action research produced by the activist-researcher seeks to transcend traditional boundaries between researchers and those being researched, aiming for a more collaborative, participatory, politically committed, and capable of provoking social change in its surroundings. One community representative explained:

“When we talk about action research, we are talking about empiricism, about experience. So, we talk about community involvement when we talk about community participation, experience, life, knowledge, stories also need to be part of the scope of this research.”

Methodologically, the activist-researcher is called to take positions that challenge hierarchical relationships for the shared construction of knowledge.

The activist-researcher has an ethical commitment to producing knowledge that improves people’s lives, not just offering an understanding or interpretation of reality that aims to further science. This constitutes an important shift in how and why researchers do science, and in what is considered ‘good’ scientific research.

For me today, it is nonsense to publish in the best scientific journals, in a language that society does not understand. It is necessary to align our academic interests with the interests of the territory.” (Researcher)

This implies aligning research products with the needs of the communities, sometimes producing a short film or infographics instead of an article or a book. It is also important to share research results with them, using communication strategies that allow them to understand.

This activism implies going beyond the formal, delimited commitment to community engagement often demanded by research funders, to truly engage with the needs and demands of communities.

“The closing of the report is where my obligation to the funder ends… There is no longer funding (but then) how can I take this to the most local levels? How do I transform this into a simpler language? (The communities expressed) “everything is fine, but we want that in simple terms, that is, we want a workshop to understand that”. It has involved three workshops, two virtual and one in person… We require help from the people who do communication, from the people who manage the new technology, also time and resources, which are usually not contemplated in the projects. Because the project ends when we deliver the report and this (what happens after delivering the report) for the communities, from my perspective, is the most relevant”. (Researcher and activist)

Highlighting the necessity of a new model of science, rethinking the dynamics of power, one of the researchers suggested:

“Nowadays, we need an engaged researcher, who shares knowledge and ‘fique de cócoras’ (squats down) to hear the others”. (Researcher)

Learning from Brazil and Mexico’s experiences to envision a new path

After unpacking the key characteristics and dynamics framing social participation and community engagement across Latin America, workshop participants started to envision what the key components of a new ‘Centre for Exchange’ could be.

The participants in our workshops agree that it is necessary to create an infrastructure that favors community participation. However, this does not necessarily mean “creating a new research center.” Instead, what is needed is to change research practices. The verticality that characterizes biomedical research, where access to communities is only sought to collect samples or to have informants, is a challenge to overcome. Participants reflected that It is essential to change researchers’ minds about who possesses and produces knowledge:

“Dialogue about the construction of knowledge is also (a form of) scientific literacy to deconstruct narratives of misinformation. When individuals participate in the debate, things happen differently”. (Researcher and activist)

Workshop participants also stressed the importance of infrastructure: a virtual-only center can prevent people who do not have remote access from participating, or can limit the role of many to that of spectators. It is important that a ‘Centre for Exchange’ has a physical component that facilitates face-to-face interactions and gets closer to the territories. The infrastructure must also guarantee that people with disabilities as well as those who speak different languages ​​can participate equitably.

Workshop participants agreed that while research can help to create public policies that improve people’s living conditions, collaborative methodologies and intersectoral approaches are fundamental to this goal. The articulation of research with social movements is essential to expand their capacity to participate in decision-making and public health policies, especially in socially and environmentally vulnerable territories.

*The Centres for Exchange project, commissioned by the Wellcome Trust’s public engagement team, is led by Lindsey Reynolds and Clemence Petit-Perrot from Pivot Collective in partnership with Pradeep Narayanan from Praxis, Maria Malomalo from Restless Development, Tasha Koch from Eh!woza, Bella Starling from Vocal, Gustavo Matta and Adalton Fonseca from Fiocruz, as well as Sarah Iqbal, Nabeel Petersen, and Renata Cortez-Gomez from Mexico.