As countries around the world invest in efforts to end NTDs, they rely on data and research to inform the choices they make. New findings can shape stronger strategies and better solutions. One long-standing Task Force program, the Neglected Tropical Diseases Support Center (NTD-SC) plays a key role in supporting operational research and, in particular, ensuring that Global South expertise reaches the decision-makers who need to hear it.
NTD-SC serves as the global secretariat for the Coalition for Operational Research on Neglected Tropical Diseases (COR-NTD), a community of more than 1700 researchers, program implementers, country partners and stakeholders from more than 60 countries as well as representatives from the World Health Organization.
The NTD-SC team used a model called “COR-NTD co-creation” to build relationships between researchers and NTD program leads in affected countries.
“Pairing in-country researchers with practitioners from the Ministry of Health (MOH) can improve the design of research studies,” said Dr. Katie Gass, COR-NTD’s director of research. “At the same time, by involving the MOH in the research from the beginning, it creates greater buy-in and makes it more likely that any beneficial findings will be put into practice.”
As an example, Gass cites the team’s recent work on an impact assessment strategy for schistosomiasis, an acute and chronic disease caused by parasitic worms. The team sought to bring partners together in ways that initiatives led by Global North influencers sometimes overlook.
“Schistosomiasis can be a very focal disease but there wasn’t a standardized methodology to allow countries to target treatment to the appropriate geographic area,” Gass says. “So with support from WHO and a team of global experts, we virtually convened national schistosomiasis programs from around Africa in 2020 to discuss the design of a multi-country research protocol that could address this important gap.”
Participants at the meeting shared the local schistosomiasis situation, as well as their interest and capacity to conduct research. A global advisory group reviewed the proposals and selected Cote d’Ivoire, Ghana, Mali, and Togo for the multi-country research protocol, with each country team composed of local researchers and MOH personnel. Then a global team of experts met regularly with the principal investigators from each country to co-design research protocols using a standardized methodology, tailored to the local settings. Standardizing protocols allowed for each country team’s work to be comparable to the others, creating the potential for the research findings to be generalizable across the region. The team also connected the principal investigators to each other and expert trainers within the region, creating a peer network to help resolve challenges and share best practices.
In 2023 in Nairobi, the project’s principal investigators, representatives from the ministries of health and WHO, disease experts, and donors convened to review the study findings and identify key lessons learned. After the first round of discussions, attendees representing Global North institutions left the room so that African stakeholders could discuss the data and findings together.
“When you’ve got a lot of Global North partners in the room, not all the voices are heard,” said Gass. “Academics from the Global North are trained to speak up in group settings, but the potential program and policy decisions coming out of this research don’t apply to people living in Europe or North America. The direct impact will be felt in Africa. It was important to create a space for African experts to share their ideas and develop a set of recommendations based on the evidence.”
The moderator of that session, a Kenyan researcher, emphasized the importance of this step.
“The Africa-only session provided a space for people who lead schistosomiasis control programs to discuss practical strategies, based on their experience, using available data to better inform impact assessment,” said Dr. Stella Kepha, an academic researcher for Kenya’s Medical Research Institute and an epidemiologist and research fellow at London School of Hygiene and Tropical Medicine. “When a discussion is all-inclusive, the unspoken power relations mean there’s often a desire to say what funders from non-African organizations want to hear.”
Kepha says the approach taken in Nairobi isn’t typical because global health research often originates with funders and organizations outside Africa. Having an Africa-only session allowed program leads to reach a consensus that they then presented to the plenary session.
“It was great to hear that some of the participants, including female program managers who hadn’t spoken in the larger session, made their voices heard in the closed-door session,” said Gass. “Best of all, through this process, the African experts agreed on a new strategy for impact assessments that is now being piloted in other countries in the region. This experience illustrates the importance of open collaboration and engagement throughout the research process.”