About the initiative

Supported by the Wellcome Trust, this initiative focuses on leveraging citizen-generated data to improve public health responses to diseases influenced by environmental factors like climate change. This initiative employs a holistic approach combining earth observation technologies, data science, and citizen input to enhance infectious disease interventions in six countries: Kenya, Ghana, Malawi, Colombia, the Dominican Republic, and Vietnam. The ultimate goal is to harness the power of inclusive data to inform health policy and foster collaboration for tackling environmentally sensitive infectious diseases.

Climate change and health

The effects of climate change are significantly increasing the prevalence of diseases worldwide, putting millions of lives at risk. Rising temperatures and more frequent extreme weather events are exacerbating the spread of vector- and water-borne diseases. According to the Intergovernmental Panel on Climate Change (IPCC), “dengue risk will increase with longer seasons and a wider geographic distribution,” potentially exposing billions of people across Asia, Europe, the Americas, and Africa to health risks by the end of the century. Similarly, by 2050, an estimated 1.3 billion more people may be at risk of Zika virus infection as temperatures rise, making new regions conducive to disease transmission.

Other environmental changes, like deforestation, are also critical in the emergence of diseases such as malaria. Human activities such as agriculture, mining, and urbanization encroach on natural ecosystems, increasing the likelihood of viruses being transmitted to humans and animals.

What Is citizen data?

Citizen data is defined as data produced by and with sufficient engagement of citizens, communities, civil society organizations, and other actors at the design and/or collection stages of the data process, to inform decision-making, respond to specific needs of a community, supplement existing data from the National Statistical Systems at various levels, or fill data gaps. By sufficient engagement, we mean citizens partner equally with producers of data to share planning and decision-making responsibilities or citizens actively control the entire data process, showcasing collective agency.

The power of citizen data

Citizen data is a powerful tool that can be harnessed to monitor, prevent, and respond to the rise of infectious diseases exacerbated by environmental changes.

Data is essential for understanding the intersection of climate change and public health. It can guide policies and programs that mitigate these impacts while helping communities adapt. A holistic approach incorporating insights from earth observation technologies, data science, and citizen-generated data is key to addressing this complex challenge.

However, the data often used to shape policy responses excludes those most affected by these issues. Inclusive data practices—where communities are active participants in both the production and use of data—do more than just fill gaps in existing data. These approaches empower communities to take immediate, informed action, sometimes ahead of formal decision-making processes.

Empowering public health through citizen data

With the support of the Wellcome Trust, this initiative aims to institutionalize the use of citizen data in public health systems to improve the response to and prevention of environmentally sensitive infectious diseases, including cholera, schistosomiasis, leishmaniasis, and arboviruses (including dengue and yellow fever). 

The initiative will start with a scoping study in six countries—Kenya, Ghana, Malawi, Colombia, the Dominican Republic, and Vietnam.

The insights gathered from the scoping study will help shape a potential future program that promotes the use of citizen data in health policy and environmentally sensitive infectious disease interventions. Ultimately, this initiative aims to unlock the power of citizen data to prevent infectious diseases, shift political mindsets, enhance technical capacities, and foster collaboration for more inclusive and impactful data processes.

Get involved

This initiative seeks to engage anyone who is carrying out work on citizen data, inclusive data, or infectious diseases. There will be opportunities to engage in surveys, focus groups, consultations, events, and more.

We currently have a survey running, and we would love to hear your thoughts on opportunities for citizen data in addressing infectious diseases - it takes less than 5 minutes to complete! Fill out the survey now.

Please get in touch with the project leads Karen Bett kbett@data4sdgs.org and Fatuma Faarah ffaarah@data4sdgs.org to learn more and get involved. 

News and Updates