Promoting participation and collaboration of communities in health research in South Africa
Promoting participation and collaboration of communities in health research in South Africa: Towards equity and co-creation
Recently, we shared key insights from the landscaping phase of the Centres for Exchange project, which aims to foster more equitable and collaborative forms of knowledge exchange in health research. That post was followed by a piece from India, the first in our regional series that dives into reflections from practitioners working in each of the priority geographies of the project. In this post from South Africa, we explore current challenges of community engagement in health research as well as existing opportunities to create more equitable structures for the exchange of knowledge in research currently emerging in the country.
South Africa’s complex history of colonial and apartheid rule systematically excluded the majority of the population from equal membership in society and prevented people from receiving adequate and dignified healthcare. These injustices contributed to the emergence of a strong civil society sector, which was a cornerstone of South Africa’s transition to democracy in 1994 and played a vital role in addressing inequalities within healthcare.
One of the most significant and well-known health-related social movements formed in response to the HIV/AIDS crisis. In the late 1990s and early 2000s, South Africa faced one of the most severe HIV/AIDS epidemics in the world, worsened by a slow government response marred by denialism. Civil society organisations, most notably the Treatment Action Campaign, publicly demanded (and eventually obtained) free access to antiretroviral treatment for all people living with HIV in the country and worked to destigmatize the disease. Building on this tradition of advocacy, South African civil society organisations continue to work to address health inequalities. Very recently, for instance, local civil society groups (including the Health Justice Initiative and the Rural Health Advocacy Project) together with international support from novelist John Green successfully advocated for Johnson & Johnson to remove patent restrictions on the manufacture of Bedaquiline, one of the new treatments for drug-resistant tuberculosis (TB).
In addition to its strong civil society, South Africa boasts a robust health research infrastructure composed of leading universities, research institutes, and public health organisations. The country’s expertise extends across various fields, including HIV/AIDS, TB, and emerging infectious diseases. The country’s research sector led the world in the discovery of COVID-19 variants and also implemented several large-scale clinical trials of COVID-19 vaccines, underscoring the significant contribution of its high-impact data systems, clinical research infrastructure, and policy advice to global health initiatives.
Despite the strength of its health research sector, South Africa has faced significant challenges in ensuring equitable access to biomedical technologies, even those it has helped to develop. During the COVID-19 pandemic, for instance, the country was unable to procure vaccines efficiently, underscoring a wider and deeper inequality where wealthy countries monopolised initial vaccine supplies. This disparity highlighted not only economic inequalities but also the underlying power dynamics in global health.
Against this backdrop, our team members from South Africa sought to understand the current landscape of community engagement, participation, and knowledge exchange in health research in the country. Our work forms part of the broader Centres for Exchange (CfE) project, a collaborative learning and design project commissioned by the Wellcome Trust. Our international consortium, working across South Africa, India, Brazil, Mexico and Kenya, has conducted a series of key informant interviews with stakeholders at a selection of organisations with strong capacity and experience in both research-related community engagement and grassroots work, to explore models to inform the CfE work.
Identified case studies in South Africa included organisations working in health research, the climate change sector, and the social justice space. One of the models explored in the case studies is centred on a physical infrastructure within a South African township that facilitates intersectoral collaboration while providing highly accessible facilities to people living in the surrounding community. Other models focus on the development of community representative structures within large-scale clinical health research programmes. Another case study explored how youth and other affected communities could advocate for better responses to climate change. A further case focussed on formalising intersectional research to understand how power operates and influences healthcare in South Africa.
After case study investigations, a participatory workshop was hosted with representatives from the case study organisations as well as others working in the sector to expand on findings. The insights described below are drawn from both case studies and the place-based workshop and participants in both sets of activities included organisational heads, research leads and community engagement practitioners. In the way participants defined terms, a large proportion of people at the workshop used the term “community engagement” to describe their work, using the concept broadly to encompass a range of activities, outcomes, and impacts that include community consultation, communication, participation, and ownership.
Why do people work in community engagement: Responsibility to effect change
For many participants, there was a strong sense that the importance of engaging communities in health research has been increasingly recognised, with increased value placed on the critical role community engagement plays in the research lifecycle. As one organisational lead explained:
“We cannot do the work we do without communities….The relationships I want to try and create are win-win…it works both ways…[we] bring the community along and [we] feel like they value the relationship they have with us [too]. It’s a bidirectional flow.”
Interestingly, participants whose work involves close engagement with diverse communities involved in research described a strong sense of personal responsibility for embarking on their work, describing a passionate personal drive to effect social change.
Many people described themselves as working in the space between research and engagement, serving as bridges or connectors between researchers and communities:
“I represent both an organisation that does research in infectious diseases and represent the community we work in. I am a person who is curious and wants to know more, I can be the beacon of voice, the intermediary.”
Several participants highlighted how their strong capacity and experience in community engagement were related to South Africa’s history of social movements. Despite these powerful movements, participants were cognisant of the significant difficulties and challenges that must be overcome to make community engagement work more meaningful and impactful. A key debate that emerged during the workshop focused on whether genuine co-creation is currently, or will ever be, possible in the context of health research in South Africa, with one participant reflecting:
“I’m uncomfortable with the word co-creation. When you say you co-create it means from the conception, from the conceptualisation of a protocol. At the moment we are not there! We are consulting based on the [study] protocol already written up. It never really starts with talking with the community right from the very start. We are not even close in South Africa!”
A health researcher reflected: “Not one complaint at community level has been addressed at protocol level. Once a [research] protocol is written to try and amend that is near impossible.” Another participant, reflecting on where communities sit on the ladder of participation, suggested that communities are involved at the consultation level at best.
Most participants suggested that there should be greater inclusion of communities in research protocol development from the start, with some examples being put forward of where this has been recently successful (e.g.Matrix4Prevention). Others raised critical questions about the practical feasibility and usefulness of this in the context of complex research, suggesting that not all questions require community input:
“There are some doors that I’m okay that are closed because of the nitty gritty. Maybe I’m a community member who hasn’t been affected enough by a problem to want to be consulted. Sometimes we open ourselves up to more problems than there are [by too much consultation].”
“In a family, there must be a mother and father and they must make sure their decisions must be for the betterment of the child. We have different levels of literacy, of access. As a child, you need to get what you need from the parent. That is the same for research.”
Power sharing and structural challenges
In addition to the rich and generative debate around the “nitty gritty” of the practice of community engagement in South Africa, participants spoke about structural barriers to true equity and power-sharing in this sector. Local systemic issues, such as under-resourced public health systems and infrastructure gaps, poverty, unemployment, and corruption disproportionately affect communities that are often those involved in research.
These issues also posed a challenge for engagement workers, who often felt a tension between meeting the needs of research and responding to the acute needs of communities on the ground. “Most research [is] done in disadvantaged communities” one participant pointed out, “yet there are no resources for these disadvantaged communities.” Another added: “You can’t just answer research questions and ignore the health of communities on the ground.”
Alongside local socio-political issues, global power structures were highlighted as major and often painful barriers to effective participation and inclusion. Participants reflected on how these issues were made visible during the COVID-19 pandemic. Participants spoke about how injustices in the system had impacted them personally as health researchers who had been involved in COVID-19 vaccine trials. One participant, a health researcher, described how she had chosen to get involved in COVID-19 vaccine research and to recruit community members: “Sometimes we’ve taken part in studies so that South Africa isn’t in the back row for vaccines.” When people in South Africa were not given access to the vaccines they had helped to develop, she expressed that she had felt a strong sense of injustice and moral betrayal from the global health establishment.
While COVID-19 vaccines are one of the most visible and pertinent examples, participants expressed distress about how many other interventions had been tested on South African communities but had not been made accessible to these populations.
“Who OWNS the research? Is it owned by the community? How, if they’re not making decisions? Communities give their lives and blood to make sure that future generations have a better life. When you go to a community, a normal person, who was part of the study, where is the vagina ring? We haven’t taken people with us enough.”
The way forward: keep on pushing together!
Despite these injustices and inequities, there was a strong sentiment from the collective that they must continue to push for change and progress.
“Who has the power to change things? South Africa is a very capacitated country, with so much research infrastructure. We need a galvanised approach for how research is going to happen.”
Collaborative knowledge production and working to break down the boundaries of “us and them” between communities, community engagement workers, and researchers emerged as a strong theme for moving forward positively. This would involve, in the words of one participant, “appreciating, valuing, nurturing epistemic diversity, a diversity of perspectives, a diversity of knowledges.” Participants highlighted the need for a space for researchers to be equipped with the skills, contextual understanding, and expertise to conduct community engagement equitably.
There was a strong emphasis on a physical place that can bring together different groups and organisations working in communities to learn from each other and collectively propel change as potentially transformational for this space. Participants agreed on the importance of “hosting and funding a single space, to exchange and shape the research agenda together.” With the potential to shape the global agenda advocate for greater local investment, and potentially allow close participation and involvement of funders: “Funders should come and see what is happening on the ground”.
Participants also recommended streamlined administrative policies and resource mobilisation for responsive community engagement. “Policies that control and limit access to what we want to do should be amended.”
Finally, to make power shifting possible, participants emphasised the importance of fostering research leaders who have commitments to co-ownership and equity at their core. There was a strong focus on ensuring that community engagement is guided by a core set of values that include a commitment to human rights, capacity building, transformation, and an ethos of collaboration.
The Centres for Exchange project, commissioned by the Wellcome Trust’s community engagement team, is led by Lindsey Reynolds and Clémence 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.