Schistosomiasis is a neglected tropical disease (NTD) which leads to severe illness, especially among the world's poorest. In Madagascar, the majority of the population needs treatment against schistosomiasis. Per capita income has stagnated sharply and absolute poverty has increased in Madagascar, which has a serious impact on the health system, silencing the voices of people most affected by NTDs, as they receive little attention in public health priorities. Further, schistosomiasis leads to chronic conditions, such as Female Genital Schistosomiasis (FGS), which requires a broad-based health system able to provide individualised care. Nevertheless, schistosomiasis is preventable and can be treated at a manageable cost. To do this, it is necessary to directly involve the people and communities most burdened by NTDs in the planning and implementation of health interventions. Stakeholders and policy makers need to take ownership of interventions to align research findings, endemic needs and population necessities.
Since 2018, BNITM, together with the Universities of Fianarantsoa, Antananarivo and Mahajanga, as well as with the CICM and the Ministry of Health of Madagascar, has established a collaborative working framework to implement participatory approaches to schistosomiasis research. In this framework, 500 women accepted to be diagnosed and more than 500 expressed the interest to be diagnosed for FGS through a relatively invasive gynecological methodology following a community-based awareness campaign. 5200 pregnant women accepted schistosomiasis treatment for them and their offspring through the incentive of a better health. 1000 households were selected to assess the feasibility and acceptability of an innovative prevention strategy for schistosomiasis and to give them a direct say in its implementation. Finally, the first conference on schistosomiasis on Malagasy soil was launched to bring together national and international actors for exchange and to give voice to the country's schistosomiasis needs.
This participatory framework shows the possibility of producing evidence-based data that can be easily translated into practices and policies. Through our projects, we have demonstrated that for the successful and sustainable implementation of health interventions the active engagement of beneficiaries is essential to promote the shift from research theory to practices.