Citizen Science: Ensuring relevance, usability, feasibility and acceptability in community engagement
Updated: 1 hour ago
Although South Africa is in a malaria pre-elimination setting, the Vhembe district in Limpopo province remains a region with active disease transmission. The region accounts for approximately 60% of national malaria cases and thus remains the country's primary malaria transmission region. As a result of this endemic transmission, the current malaria elimination targets set by the National Department of Health for 2028 will not be met.
In combination with geo-spatially informed climatic modelling, the successful outcome of her work will identify transmission “hot-spots” to inform targeted malaria control interventions, support the development of early warning systems to prevent disease resurgence and seasonal outbreaks and advise administration of therapeutic strategies.
Therefore, novel malaria control approaches are needed to prevent sustained malaria transmission, if malaria is ever to be eliminated within South Africa. In an attempt to understand and survey malaria transmission dynamics, Dr Dina Coertzen, a Future Africa research fellow in the FAR-LeaF programme at the University of Pretoria, aims to generate the first comprehensive understanding of human-to-vector transmission dynamics in the Vhembe district, Limpopo Province. In combination with geo-spatially informed climatic modelling, the successful outcome of her work will identify transmission “hot-spots” to inform targeted malaria control interventions, support the development of early warning systems to prevent disease resurgence and seasonal outbreaks and advise administration of therapeutic strategies.
This study is the first of its kind in South Africa, and thus, she is dependent on the Vhembe district community as the source of the required data, making it the main stakeholder in this study. Dr Coertzen’s project is being performed under the University of Pretoria Institute for Sustainable Malaria Control. This is a transdisciplinary research institute that integrates vector-, parasite-, and human-health research, with the Vhembe district as the main site for community engagement. Through this, the institute has built long-standing relationships with key stakeholders in the community, including the national, provincial, and district Departments of Health, Malaria Control Programme managers, village chiefs, and clinic managers. This ensures that the ethical requirements of working in a clinical setting are all verified beforehand.
Only after stakeholder approval can community engagement begin. Institutional and national malaria control programmes are well integrated into the community, particularly in six villages where malaria cases are most widely reported: Masisi, Tshipise, Madimbo, Manenzhe, Folovodwhe and Mulala (Figure 1). Here, local village chiefs remain the main gateway to the community, as they are responsible for ensuring community welfare (photo 1). Despite being external from a point of care perspective, they face the daily burden of malaria observed within their villages and have a generalised perspective on the socio-economic impact of the disease. The challenge Dr Coertzen faced was to introduce a new perspective into a community with indigenous knowledge that has lived with a particular morbidity. However, early partnerships build on prior trust and mutual respect earned over years of the UP ISMC conducting research in this region, particularly with her mentor and supervisor on the project, Dr Taneshka Kruger (UP ISMC Project Manager and researcher in the School of Health Systems & Public Health (SHSPH)). This trust relationship was evident in the recognition afforded by wearing uniform shirts (photo 2), which created cohesion among all researchers and field workers. Furthermore, using local field workers who speak the same language to introduce new researchers to the community emphasises the respect we show by asking to be introduced to the chiefs, demonstrating adherence and respect for their culture and ways. This meant that Dr Coertzen’s study could be introduced transparently with respect to funding sources, our motives, potential risks and limitations, and target populations. Through this, several chiefs reiterated that the study was relevant to the community, as it aligns with the community’s societal needs.
Following approval from the village chiefs, engagement at the respective clinics was facilitated by the clinic managers. This involved explaining the study aim and protocol. Using visual tools (photos 3 and 4), Dr Coertzen showed the life cycle of the parasite that causes malaria and how it is transmitted between human hosts, thereby underscoring the need and importance of the study.
Interestingly, despite their indigenous knowledge and experience in working with the disease, most clinic workers were unaware of this aspect of malaria transmission. This gap in knowledge presented a golden opportunity for Dr Coertzen. By informing clinic workers, who are highly regarded as trustworthy pillars from a point-of-care perspective, these healthcare workers are uniquely positioned to share this knowledge with community members bearing the burden of disease.
Healthcare workers are uniquely positioned to share this knowledge with community members bearing the burden of disease.
Prior to starting this study, indigenous clinic surveys performed by the UP ISMC identified that most cases of malaria within the Vhembe district occur within children under the age of 18 y/o. This prior knowledge meant that these are the most important target population, but from an ethical perspective, the most difficult to include. However, earlier engagement with the UP ISMC revealed that parents of these minors were open to their children participating in the study because they understood the importance of research in reducing disease burden. As a result, this engagement helped secure ethical approval to include children <18 y/o in the study. The clinic managers expressed a highly positive attitude towards this aspect, to the extent of proposing visits to local schools for follow-up sampling of minors enrolled in the study. This evidence shows that the community was open to the study and found it highly relevant. Apart from this, having the clinic managers as central stakeholders in data gathering means they can identify problems with sample collection and patient enrollment and advise on improving data collection/research design and interpretation. This input improved the general outcomes of the study, leading towards mutual learning between Dr Coertzen and the clinics.
The true impact of this community engagement became clear when the manager of the Masisi clinic asked a pivotal question: "What do we tell patients who test positive for the transmissible stages of parasites?" (photo 3). This single question showed that the community was not just listening, but was willing to change its perspective on controlling malaria transmission. Instead of static protocols, the success of this study may lead to improvements in point-of-care diagnostics and treatments and to the development of adaptive transmission control strategies.
Ultimately, through the community engagement aspect of this study, the entire health system may be strengthened from the bottom up, creating a societal shift in how malaria is controlled. Community engagement is representative of true, transferable, and transdisciplinary research, in which the community actively interacts with the scientific research community to drive positive societal impacts in their daily lives.
Going forward, Dr Coertzen's study will not only inform malaria transmission control strategies but also, through community engagement, strengthen trust between science and society, empowering community members to foster a deeper local understanding of malaria transmission and, overall, support effective malaria elimination (photo 5).
Article submitted for publication by Dr Dina Coertzen.
