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

BACKGROUND: Cardiovascular diseases (CVD) were responsible for 20.5 million annual deaths globally in 2021, 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 collaborative multi-country project that employed citizen science and a co-design approach to (i) explore CVD risk perceptions, (ii) develop tailored prevention strategies, and (iii) support advocacy in different low-income settings in SSA. METHODS: This is a participatory citizen science study with a co-design component. Data was collected from 205 participants aged 18 to 75 years in rural and urban communities in Malawi, Ethiopia and Rwanda, and urban South Africa. Fifty-one 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 with the citizen scientists and the results were used to support citizen scientists-led stakeholder advocacy workshops. Findings are presented using bubble graphs based on weighted proportions of key risk factors indicated. RESULTS: Nearly three in every five of the participants interviewed 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 participated in advocacy workshops and supported the identification and prioritization of community-specific CVD prevention strategies and implementation actions. Citizen science-informed CVD risk screening and referral to care interventions were piloted in six communities in three countries with about 4795 adults screened and those at risk referred for care. Health sector stakeholders indicated their support for utilising a citizen-engaged approach in national NCDs prevention programmes. The citizen scientists were excited by the opportunity to lead research and advocacy. CONCLUSION: The collaborative engagement, participatory learning, and co-designing activities enhanced active engagement between citizen scientists, researchers, and stakeholders. This, in turn, provided context-specific insights on CVD prevention in the different SSA settings.

Implementing and Evaluating Community Health Worker-Led Cardiovascular Disease Risk Screening Intervention in Sub-Saharan Africa Communities: A Participatory Implementation Research Protocol.

The increasing burden of non-communicable diseases (NCDs), particularly cardiovascular diseases (CVD) in low- and middle-income countries (LMICs) poses a considerable threat to public health. Community-driven CVD risk screening, referral and follow-up of those at high CVDs risk is essential to supporting early identification, treatment and secondary prevention of cardiovascular events such as stroke and myocardial infarction. This protocol describes a multi-country study that aims to implement and evaluate a community health worker (CHW)-led CVD risk screening programme to enhance referral linkages within the local primary care systems in sub-Saharan Africa (SSA), using a participatory implementation science approach. The study builds upon a prior community-driven multicentre study conducted by the Collaboration for Evidence-based Health Care and Public Health in Africa (CEBHA+). This is a participatory implementation research. The study will leverage on the CVD risk citizen science pilot studies conducted in the four selected CEBHA+ project countries (viz. Ethiopia, Rwanda, Malawi, and South Africa). Through planned engagements with communities and health system stakeholders, CHWs and lay health worker volunteers will be recruited and trained to screen and identify persons that are at high risk of CVD, provide referral services, and follow-up at designated community health clinics. In each country, we will use a multi-stage random sampling to select and then screen 1000 study participants aged 35-70 years from two communities (one rural and one urban). Screening will be done using a simple validated non-laboratory-based CVD risk assessment mobile application. The RE-AIM model will be used in evaluating the project implementation outcomes, including reach, fidelity, adoption and perceived effectiveness. Developing the capacities of CHWs and lay health worker volunteers in SSA to support population-based, non-invasive population-based CVD risk prevention has the potential to impact on early identification, treatment and secondary prevention of CVDs in often under-resourced communities. Using a participatory research approach to implementing mobile phone-based CHW-led CVD risk screening, referral and follow-up in SSA will provide the evidence needed to determine the effectiveness of CVD risk screening and the potential for scaling up in the wider region.

Community-driven citizen science approach to explore cardiovascular disease risk perception, and develop prevention advocacy strategies in sub-Saharan Africa: a programme protocol.

BACKGROUND: In sub-Saharan Africa (SSA), which experiences a disproportionately high cardiovascular disease (CVD) burden, population-based screening and prevention measures are hampered by low levels of knowledge about CVD and associated risk factors, and inaccurate perceptions of severity of risk. METHODS: This protocol describes the planned processes for implementing community-driven participatory research, using a citizen science method to explore CVD risk perceptions and to develop community-specific advocacy and prevention strategies in the rural and urban SSA settings. Multi-disciplinary research teams in four selected African countries will engage with and train community members living in rural and urban communities as citizen scientists to facilitate conceptualization, co-designing of research, data gathering, and co-creation of knowledge that can lead to a shared agenda to support collaborative participation in community-engaged science. The emphasis is on robust community engagement, using mobile technology to support data gathering, participatory learning, and co-creation of knowledge and disease prevention advocacy. DISCUSSION: Contextual processes applied and lessons learned in specific settings will support redefining or disassembling boundaries in participatory science to foster effective implementation of sustainable prevention intervention programmes in Low- and Middle-income countries.