Seasonal malaria chemoprevention (SMC) is one of the best ways to protect children from malaria. No one knows this better than community health volunteers who go door to door helping families protect their children from malaria by administering medicines.
SMC reached approximately 56 million children in 2025 in sub-Saharan Africa. Its success depends on community participation, from local volunteers to parents administering treatment at home.
Community members have long been essential to the successful delivery of interventions like SMC. Researchers are increasingly recognizing the value of bringing their perspectives into research much earlier.
Bringing community perspectives into research
Communities are not just participants in research; they are experts of their lived experiences. Their insights help shape not only the delivery of interventions, but also their design and development to ensure that interventions fit the realities of the communities they are intended to serve.
Civil society organizations like Impact Santé Afrique, product development partnerships, and research institutions are working to make community engagement an integral part of health research and innovation. Meaningful engagement means more than being invited to comment on decisions; communities must have opportunities to raise concerns, challenge assumptions, and see how their input has influenced research. This may include engaging communities before protocols are finalized, ensuring equitable representation in decision-making structures and, crucially, showing them what impact their input has had.
This ethos is reflected in international research guidance. The Declaration of Helsinki, International Council for Harmonisation of Technical Requirements for Pharmaceuticals for Human Use Good Clinical Practice guidelines, and World Health Organization guidance on clinical trials increasingly recognize the importance of meaningful engagement with patients and communities.
Putting community engagement into practice
This approach has been applied in the ongoing Safety of Antimalarials in the FIRst TrimEster (SAFIRE) consortium’s clinical trials. This project is conducting clinical research in Burkina Faso, Mali, and Kenya to evaluate the efficacy and tolerability of several first-line antimalarials to treat women in their first trimester of pregnancy.
At the start of SAFIRE, Medicines for Malaria Venture and other consortium partners conducted formative research, exploring community perspectives and cultural sensitivities that could influence participation in the study. As a result, the SAFIRE team refined communication materials to be more accessible across different literacy levels as well as culturally responsive to each country context. These insights also directly influenced trial design, informing participant identification methods, recruitment, informed consent, voluntary participation, and retention strategies.
Building on the community advisory board model long used in HIV research, the Drugs for Neglected Diseases initiative has established regional Community Advisory Committees in Africa, Asia, and Latin America. These committees bring together patient advocates and people with different lived experiences of disease. Their role is not simply to react to research once decisions have been made, but to bring community perspectives into the decisions and materials that shape how studies are designed and experienced.
Recent consultations show what this can mean in practice: for a Phase 3 dengue trial, community members and people with lived experience reviewed the informed consent and assent materials and made recommendations to improve the process by shortening consent forms, reducing repetition and technical language, and making the research process and goals clearer to participants, alongside what they should expect in terms of care, safety, and rights.
Community engagement becomes meaningful when listening leads to action and communities can see how their input has shaped decisions and contributed to how interventions are developed and delivered.
Engaging communities before decisions are made
Community participation can begin even earlier, before decisions are made about developing, testing, or introducing a new intervention. Between 2024 and 2026, Mali’s University Clinical Research Centre conducted sociological research to assess communities’ understanding of genetically modified mosquitoes (GMMs) as a potential malaria control strategy. Although Mali is not yet using GMMs, this type of research helps generate evidence that can inform future scientific and policy decisions.
Researchers engaged a broad range of stakeholders—including health workers, people living in both urban and rural communities, religious leaders and youth—in focus group discussions to gather qualitative data. Study participants were viewed as contributors rather than research subjects, with researchers soliciting their experiences, recommendations, and views on challenges and solutions that could arise in deploying this intervention.
The findings showed that perceptions of GMMs varied according to factors such as gender, education levels, and trust levels in scientific and health institutions. At the same time, common ground also emerged, particularly around the need for transparent information, credible scientific data, trustworthy institutions, community consultation and meaningful participation in decision-making.
Scientific innovation alone is not enough
Scientific efficacy alone is not sufficient to ensure the acceptance of new interventions. They must also be perceived as socially and culturally legitimate and implemented through governance mechanisms that consider communities’ concerns, expectations, and values. Early engagement is also critical for building trust and supporting sustained, meaningful interactions with communities throughout scientific and clinical research.
When advancing innovations to improve global health outcomes, product developers must treat communities as indispensable partners whose perspectives can improve the relevance, acceptability, and impact of new public health interventions. Communities have long played a role in delivering health interventions. They should also have a role in shaping them.