The Isivivana Centre (https://isivivanacentre.org.za) is a multi-purpose community centre based in the township of Khayelitsha. The Centre was established in 2016 to provide a space for social justice organisations to convene and collaborate and to provide resources to the surrounding community (including a library, cinema and meeting rooms). Development of the Centre was spearheaded by a group of social justice organisations working in Khayelitsha with funding from the Atlantic Philanthropies.
While not expressly a research organisation, the space serves as a site for community-based research. Current tenants of the building include a clinical trials platform (Vuka Research Clinic), a legal advocacy group working on education, a social justice organisation, a civil society health service provision organisation, and a public and community engagement organisation (Eh!woza). Each of these organisations either conducts or facilitates community-based research from within Isivivana, making research one of the centres’ core activities. The fact that the building is populated by a diversity of organisations is important to its ways of working. Practically, it also helps to address issues related to stigma for those who enter the building to participate in clinical trials or other research-related activities.
The building was designed and built with a specific set of outcomes and intentions in mind. While safe, with security stationed at entrances, the building is easily accessible from the outside – providing a feeling of openness to community members. The well-resourced and welcoming space makes an impact on how people feel while working in and accessing the space. As described by a senior leader at Isivivana, the resources and architecture are intended to convey that “people living in townships should have access to these kinds of spaces and resources, and ideas and opportunities”.
The building is intended to not only be a brick and mortar facility, but also one where tenants collaborate and programmes that serve the community are developed. The idea is that the Centres is more than just a building but is also a set of interactions and values centred around a commitment to social justice and local collaboration. As one interview participant put it, “Isivivana is the place where you go if you want to meet people in Khayelitsha.”
In terms of the governance of the centre, decisions are made by a diverse board of trustees, which includes some representatives from the community where the centre is based. The centre works to ensure sustainability by generating revenue from tenants and renting out their venues, rather than relying on external funding. This does mean, however, that the space is not freely available to other community-based organisations or actors without means to pay.
For researchers who work from within Isivivana, the space enables them to operate in a way that would not be possible from within a traditional tertiary institution. Most immediately, the physical proximity to research participants can facilitate more active dialogue and a deeper understanding of the everyday issues participants face, enabling a more responsive and engaged form of research. As one researcher based at Isisivana reflected,
“Working in this social justice space, that’s where you start to be aware of those issues. You see something in the community that you could help to address, synergising your research with this need/want. You start to see ways that you can offer other forms of help to the community where you operate.”
Researchers also reflected on how moving outside of the physical confines of large academic institutions facilitated less rigid and more flexible ways of working that allowed for more responsive and collaborative approaches to research.
A clear success of Isivivana has been the establishment and continuity of a multi-sectoral community-based space focused on social justice. More recently, there has been a shift toward more health-focused organisations within the space, largely due to relatively greater funding for health-related projects, redirecting its focus somewhat. However, it has remained fundamentally focused on community development in Khayelitsha.
At the same time, while some of the organisations who operate from within the space have a strong commitment to ensuring more effective service delivery for those involved in research, there is still work to be done to facilitate stronger linkages between the research activities that take place and the delivery of services (including health services) in the area.
One potential area for growth is that the centre does not have a clear strategy for measuring their impact. It would be valuable to examine more deeply how their values and commitments are realised in practice. For instance, while there is a clear expressed commitment to fostering collaboration between resident organisations, it is less clear how this happens in practice. It would also be valuable to understand more about how the space is experienced by different members of its community (staff at different tenant organisations, area residents, building staff, and leadership).
Other challenges include:
Although the centre is not a research organisation in itself, it offers an interesting model for how research can be more proximate to the people involved, and therefore more responsive to the needs and priorities of diverse communities. As described above, the clinical trials unit located within the Centre (Vuka) is deeply committed to the development of a more equitable and ethical model of community-based health research – and serves as an interesting case study in itself of how researchers can transform their ways of engaging communities even within the context of large-scale clinical trials.
A key takeaway of this case is about the importance of physical place and space in enabling (or disabling) meaningful and inclusive knowledge exchange. At Isivivana, the interaction between the architecture and resources of the space and how it functions within the community is a key element of its success. A well-resourced and open and welcoming centre makes a huge difference to how people feel while working in and accessing the space. At the same time, the feeling of openness is not determined only by the physical infrastructure but instead shaped by the values and practices of the people who make up the space.
Reflecting on the possibility of scaling models like Isivivana, one of the centre’s tenants reflected:
“The way it was set up was so organic. It emerged through an organic need of a group of NGOs that were already working in the community and needed space to operate. If you tried to replicate it in another setting, I’m not sure if it would have the same success. Things that emerge organically are far more successful than those that are put there by an external actor.”
The South African health research organisation Desmond Tutu Health Foundation (DTHF) has its roots in the HIV Research Unit at Somerset Hospital in Cape Town. Led by Professor Robin Wood, the HIV Research Unit was the first public clinic in South Africa to offer antiretroviral therapy (ART) to people living with HIV in the 1990s. The choice to offer access to ART’s a decade before they were available publicly in most of the country was forward thinking and politically challenging, bringing significant attention to the Unit’s work. The HIV Research Unit was incorporated into the Institute of Infectious Disease and Molecular Medicine at the University of Cape Town in 2004. With support from the Archbishop Desmond Tutu the Desmond Tutu HIV Foundation was formed.
Grounded in principles of evidence-based practice and social justice, the DTHF conducts multidisciplinary research and implements programs aimed at mitigating the impact of infectious diseases (notably HIV/AIDS and tuberculosis) within communities that are amongst those most highly affected by these diseases in the world. Through this work, the organisation has grown to become a global leader in HIV prevention and implementation research.
The leadership of the DTHF comprises a number of individuals with expertise across various disciplines. Alongside CEO Professor Linda-Gail Bekker, who has deep experience in HIV/AIDS research and advocacy, the leadership roster includes seasoned professionals in public health, clinical research, community engagement, and program management. Strategic decision-making is led by a board of directors composed of accomplished leaders from academia, healthcare, philanthropy, and civil society, ensuring a broad spectrum of perspectives and expertise.
The organisation’s mission, as stated on their website, is “to lessen the impact of the HIV epidemic on individuals, families and communities through our commitment to excellence, innovation and our passion for humanity.” The DTHF achieves this through a broad research portfolio, which spans HIV prevention trials, vaccine candidate testing, treatment adherence studies, and other clinical trials, alongside innovative tuberculosis transmission mitigation studies. Complementing biomedical research, the organisation’s socio-behavioural division explores the social determinants influencing the epidemic as well as individual health-seeking behaviours, with an emphasis on particularly vulnerable groups like adolescents and key populations such as the LGBTQI+ community, sex workers, and men who have sex with men (MSM). Indicative of the organisation's scale and reach, the DTHF operates at least six clinical research sites in peri-urban communities across Cape Town, manages five mobile clinics within the region, and hosts a clinical trials unit at Groote Schuur Hospital. With a broad portfolio of research across a variety of settings, the DTHF also has an active community engagement portfolio.
The DTHF views community engagement as key to its research and intervention efforts. One of the key aspects of the DTHF's community engagement strategy is the constitution of community advisory boards (CABs) made up of representatives from areas where research activities are conducted. These CABs serve as platforms for community representatives to provide input, feedback, and guidance on research priorities, study design, and implementation strategies. The organisation also hosts community forums, town hall meetings, and dissemination events in an attempt to facilitate open dialogue, share research findings, and address community concerns.
“We cannot do the work we do without communities,” stated one of the organisation’s senior leaders. Acknowledging that relationships take time to build, she emphasised the importance of engagements built on mutual respect, trust, transparency and accountability within these relationships, with the goal of establishing and sustaining strong ongoing, bidirectional relationships:
“It works both ways. We bring the community along and (we) feel like they value the relationship they have with us (too).”
Reflecting on the changes in how communities are engaged in research both within DTHF and in the broader health research ecosystem, the senior DTHF staff member explained:
“It’s like chalk and cheese compared to where we've come from.”
Over time, DTHF’s approach has evolved from simply building awareness to building sustained relationships with community members. Across its numerous trials and studies, the DTHF has developed innovative new ways of establishing and maintaining effective CAB structures. In one example, the DTHF worked with a youth reference board of 80 young people to target 25 000 people. This CAB effectively assisted in various engagement and learning processes and products. This was a win-win for the entire engagement team, as the young people ensured that change was created within their communities and also gained employment through the project. Through this work the organisation has gained important insights around these processes, which it has used to develop new guidelines for effective community engagement. There are also opportunities for individual growth and career opportunities for community representatives which transcends traditional static conceptions of CAB roles. These examples and reflections highlight the potential for growth and development in how communities are engaged where institutional support for community engagement is strong.
In a dialogue with representatives from one of DTHF’s CABs, a CAB member reflected that being part of a CAB is meaningful because it provides an opportunity to show community members how research can lead to more effective healthcare services. CAB members also expressed that a core part of their role was to represent the views of their communities. CAB members described their roles as “middle men,” making connections between communities that are disconnected from researchers and researchers that are disconnected from communities. One member reflected:
“As CAB members, we have been walking back and forth across a bridge between researchers and communities, sharing information back and forth.”
They also raised concerns, however, about the significant divide between researchers and the communities under study, emphasising the need for more researchers who come from communities or who community members can relate to more effectively.
While community engagement initiatives at DTHF have grown over time, these relationships and structures still have their difficulties. A key ongoing challenge centres around how to ensure effective representation of all members of research communities and build relationships of trust with these diverse communities that enable “bidirectional flow,” as a DTHF senior staff member put it.
A second difficulty is understanding and responding to local needs while also advancing the broader scientific objectives of the research. As one DTHF staff member explained, one must be able to assess “whether you are reaching the right people in the community” and “secondly, meeting them where their needs are” and “hearing these authentic components, without derail(ing) the research, incorporating them into understanding the relationship (as well as) building the relationship”. The communities with whom the DTHF conducts research experience the highest burdens of disease (and socioeconomic needs) in South Africa (and worldwide). The DTHF has to be particularly cognisant of these communities’ needs and lived experiences whilst also progressing the research agenda – a complex balancing act.
Interestingly, CAB members also highlighted that having to balance the needs of research with the needs of the community surfaces major tensions that can be difficult to navigate. For CAB members, these tensions can sometimes become highly personal, given that CAB members are often speaking to neighbours and close social networks. Having deep experiential knowledge of the challenges that community members face can make it difficult for them not to feel a responsibility to assist with identified needs. In addition to financial pressures, CAB members spoke about the tension between being seen by public healthcare staff as a person “that knows too much” and being seen by community members as a useful source of information and advice. “Do I talk when I see things going wrong,” one CAB member mused, “or do I not talk? How do I navigate this?”
The balancing of research priorities and communities’ needs can also affect the prioritisation of community engagement in competitive funding bids and proposals, which require strong justification for budget requests and clear evidence for impact. As the impacts of community engagement can be longer term or less tangible, a senior staff member pointed out, there is a need for funders to consider financing a different kind of impact assessment.
From the CAB members’ perspective, two interesting challenges surfaced during the dialogue session. The first related to whether CAB members had sufficient agency and power to meaningfully impact a research study or shift the research agenda. There were varying opinions around this, with some CAB members arguing “We do have power but only when we speak out” and critiquing their colleagues for not taking on this responsibility. “We say yes in the room and then raise concerns only after,” one pointed out. Others disagreed saying that their role as community representatives was not sufficient:
“According to the protocol, you have CAB representation but when it comes to true community representation, that breaks down. We only get to speak at CAB meetings. We want to have more representation.”
Across the board, it was agreed that CABs within the DTHF, and in clinical research more broadly, need to have more agency and claim leadership roles to own their power as CABs.
Another challenge raised by CAB members is around representation from a cultural, economic and race perspective. One CAB member stated simply:
“We expect scientists are all white people with coats.”
Following on from this, there was a strong reflection on the use of language in scientific meetings, critiquing the hegemony of English in a context where the majority speaks isiXhosa. One CAB member reflected how meaningful it was when a young black researcher presented a study in isiXhosa, and how much easier it was to engage with the work. All agreed that language was a key challenge in terms of being able to engage equitably with researchers in this context.
The insights and reflections provided by this case study highlight the importance and complexity of building effective community representative structures within major health research platforms. When there is support from executive leadership, it becomes possible to provide a platform and potential for innovative work around knowledge sharing and community representation in clinical and implementation research. However, even with this institutional support, issues related to representation, power inequalities, and tensions between research priorities and community needs require ongoing work to resolve.