About this report
Communities on the frontlines of infectious disease outbreaks hold knowledge that formal surveillance systems too often miss. This scoping study was commissioned by Wellcome and conducted by the Global Partnership for Sustainable Development Data in partnership with the Strathmore University Hub for Natural Capital. It explores how citizen data can strengthen the way we monitor, prevent, and respond to environmentally sensitive infectious diseases, including cholera, dengue, yellow fever, schistosomiasis, and leishmaniasis.
Conducted across six countries, the study examines the current landscape of citizen data use in Kenya, Malawi, Ghana, Vietnam, Colombia, and the Dominican Republic. Drawing on stakeholder mapping, interviews, surveys, focus group discussions, and community convenings, it maps 35 examples of citizen data in action and identifies what it takes for these approaches to move from pilot to policy.
What the study found
The research reveals both the promise and the gaps. Most citizen data today is generated for disease surveillance, yet far fewer initiatives focus on resilience, lived experience, or data sharing. Governance concerns, limited digital literacy, and inconsistent open access to data continue to constrain impact. At the same time, the study highlights where momentum is strongest, with Kenya and Malawi emerging as the most ready countries for scaling citizen data approaches, and offers concrete recommendations for funders, researchers, governments, and civil society to act on.
The report also features five in-depth case studies covering initiatives in Uganda, the DRC, Kenya, South Africa, Bangladesh, and across Latin America, offering practical insights into what inclusive, community-led data collection looks like on the ground.
Why it matters
With the 2025 adoption of the UN Copenhagen Framework endorsing citizen data as a cornerstone of equitable development, this study arrives at a critical moment. It provides a practical evidence base for funders and practitioners ready to move beyond the question of whether citizen data matters and toward how to make it work.
