SummaryBackground Chagas disease is a neglected tropical disease caused by the parasite Trypanosoma cruzi. It causes a significant health burden in the Americas, especially in Bolivia and Paraguay, where the disease is most endemic in the transnational Chaco region. Issues with data quality and availability prevent a true understanding of the current burden of disease, with missed opportunities for surveillance, resource allocation, and evaluation of interventions. This study aimed to explore routine Chagas disease data systems in Bolivia and Paraguay, focusing on data flow, barriers to data quality and reporting, and data sharing across health system levels, and to identify opportunities to strengthen surveillance and decision-making. Methods A qualitative study was conducted between July–September 2024 in Bolivia and Paraguay. In-depth interviews were carried out with 43 key informants, with roles as healthcare workers, data managers, and technical advisors involved in Chagas Programs across different health system levels. A thematic analysis was conducted to develop a set of themes and recommendations related to data management practices. Findings Four key themes emerged throughout interviews, with findings on data management practices, barriers to high quality routine data, data use, and cross-border data sharing. Key recommendations from participants to improve the overall Chagas disease data management systems in each country included strengthening digital infrastructure, promoting interoperability across systems, and fostering regional collaboration for cross-border data exchange. Interpretation The study highlights critical gaps in routine data management for Chagas disease and underscores the importance of national-level solutions to support surveillance and control efforts. These findings offer concrete, actionable guidance for national health authorities and international stakeholders working to improve data systems for this neglected disease in endemic regions. Funding This work was supported by the Fulbright U.S. Student Program; the Wellcome Trust 220211/Z/20/Z; and ISGlobal (CEX2023-0001290-S, MCIN/AEI/10.13039/501100011033), with additional support from the Generalitat de Catalunya (CERCA Program).
Skjefte et al. (Sat,) studied this question.