Citizen Science is an initiative of ITPC that moves from models of ‘data extraction’ to ‘data democracy’, by combining community-led interventions including CLM, implementation science, and a novel methodology we’ve called Life Mapping, which uses collaborative and participatory visual media tools to effect advocacy. It acknowledges that people are experts in their own lives. It pivots away from the notion that academic research and analysis is the only legitimate knowledge creation method. The name signals the democratization of data collection and analysis, empowering participants and respecting their expertise.
COVID-19 continues to profoundly impact global health, particularly in low- and middle-income countries, where the struggle for equal access to healthcare has never been more important. As COVID-19 blurs traditional boundaries between journalism, advocacy, research, and policy development, ITPC has launched COVID-19 Citizen Science, a ground-breaking, community-led project documenting real-time perspectives, experiences and advocacy priorities among people living with HIV in Malawi and South Africa. Citizen Science moves from models of ‘data extraction’ to ‘data democracy’, by combining community-led monitoring, operational research, and a novel methodology we’ve called Life Mapping, which uses collaborative and participatory visual media tools.
We’ve provided participants with mobile phones, data and training, enabling them to document their experiences and share their perspectives before and during the COVID-19 pandemic, including access to HIV and TB testing, prevention, and treatment services – and their expectations for the future. Outcomes of the project will reflect the experiences of project participants, their advocacy pathways and priorities and real-world changes, such as improved oversight of healthcare, greater gender and sexuality empowerment, and greater familial and social support.