Multi-country collaborative citizen science projects to co-design cardiovascular disease prevention strategies and advocacy: findings from Ethiopia, Malawi, Rwanda, and South Africa

Abstract

Abstract Background Cardiovascular diseases (CVD) are responsible for 17.9 million annual deaths globally, with a disproportionally high burden in sub-Saharan Africa (SSA). There is growing evidence of the use of citizen science and co-design approaches in developing interventions in different fields, but less so in the context of CVD prevention interventions in SSA. This paper reports on the outcomes of a multi-country collaborative project that employed a citizen science approach to explore, co-design, and implement CVD risk prevention and advocacy in SSA. Methods The study was implemented in rural and urban communities in Malawi, Ethiopia and Rwanda and urban South Africa, using citizen science and co-design approaches. Trained citizen scientists used a mobile app-based (EpiCollect) semi-structured survey questionnaire to collect data on CVD risk perceptions from participants purposively selected from two communities per country. Data collected per community included 100–150 photographs and 150–240 voice recordings on CVD risk perceptions, communication and health-seeking intentions. Thematic and comparative analysis were undertaken by citizen scientists and the results used to support citizen scientists-led advocacy workshops in each community. Results About 63% of 205 participants reported having a relative with CVD. The main perceived causes of CVD in all communities were substance use, food-related factors and litter, followed by physical inactivity, emotional factors, poverty, crime and violence. The perceived positive factors for cardiovascular health were nutrition, physical activity, green space, and clean/peaceful communities. Multi-level stakeholders (45–84 persons/country) including key decision-makers attended advocacy workshops, agreed on priority CVD prevention strategies, and supported successful implementation of CVD risk screening and referral to care interventions. The stakeholders in the health sector appreciated the citizen scientists’ work and indicated their support to utilise this approach in implementing national non-communicable disease prevention programmes. The citizen scientists were excited by the opportunity to lead research and advocacy. The collaborative engagement methods helped build capacity and relationships among citizen scientists, researchers, and stakeholders, leading to active and productive engagements that provided context-specific insights on CVD prevention. Conclusion Participatory citizen science can foster learning and co-designing of CVD risk prevention interventions and actionable advocacy strategies in different SSA settings.