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

doi:10.21203/rs.3.rs-3131601/v1

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Research Article

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

https://doi.org/10.21203/rs.3.rs-3131601/v1

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published 12 Dec, 2023

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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.

Citizen Science

community-driven

co-design

cardiovascular disease

prevention strategies

advocacy

participatory

sub-Saharan Africa

Globally, cardiovascular disease (CVD) accounts for 17.9 million deaths annually, representing 38% of premature deaths, with a disproportionally high burden in sub-Saharan Africa (SSA) (1, 2). There are considerable knowledge and capacity gaps in CVD services delivery in many African settings (3–5). In the SSA region, uptake of population-based CVD risk screening and prevention interventions by socio-economically poor populations are hampered by the generally low levels of knowledge and awareness of CVD and associated risk factors, and the often inaccurate perceptions of severity of risk (3). Qualitative studies in SSA settings have shown that community perception and understanding of the concept of CVD risk could be a barrier to the uptake of population-based CVD risk prevention interventions including screening and care (6–8). A recent qualitative meta-synthesis reported a disconnect between daily lived experiences of African people and perception of CVD, its risk factors, and indicated that treatment options were influenced by religious and cultural factors (9).

Innovative interventions that take varying local contexts into consideration and embrace the participation of communities and collaboration with relevant stakeholders are needed to support CVD prevention in low- and middle-income countries (LMICs) (5, 10). Indeed, community-based intervention projects that take a grounded, co-design approach where local community members, stakeholders, and scientists participate in research are known to increase results-oriented participation in science and enable co-production of sustainable solutions (11–13). Furthermore, participatory population-based intervention programmes that effectively engage and train local citizens as scientists and foster collaboration and solution-building across social and environmental structures have had substantial impact on community health (14). While there is a growing evidence of the use of community-based participatory and co-design approaches in developing and implementing interventions in different populations, there is limited evidence of use of this approach in the prevention of CVD in multiple settings in LMICs and globally (15–17). Co-design is a participatory approach that brings together implementers and beneficiaries to design local solutions to address local problems. Often the terms ‘co-design’, ‘co-creation’, and ‘co-production’ are used interchangeably to describe the development of interventions that involves multiple stakeholders (18).

Recent systematic and scoping reviews have indicated the appropriateness of using a codesign or co-production approach to designing health-related programmes (17, 19), and to promote health policies focusing on CVD prevention (20). In addition, citizen science and co-design approaches have been used to facilitate stakeholders’ engagement, participatory learning, adaptation of tools/processes, co-creation of knowledge, and advocacy for social action (21, 22). As part of a research task under a larger CEBHA+ (Collaboration for Evidence-based Health Care and Public) consortium, we set out to implement and evaluate a multi-country community-engaged citizen science study to explore CVD risk perception, and develop prevention advocacy strategies in SSA (23).

A citizen science framework has been described by Den Broeder et. al. (2018), and further adapted by Marks and colleagues (15) (See Fig. 1) to include four main participatory approaches, viz. contributory, collaborative, co-created, and citizen-led approaches. A recent systematic review has reported the use of this framework in supporting predominantly small-scale co-produced physical activity and nutrition related projects directed at the prevention of chronic diseases mainly in countries outside of Africa (15). Our research falls generally into the “collaborative” category of the citizen science framework as seen in Fig. 1. This paper reports on the adaptation, outcomes, challenges, and lessons learnt in implementing collaborative a CVD risk prevention research project, using citizen science and co-design approach in multiple settings in four SSA countries.

Legend:

Figure 1: Four models of citizen science characterized by increasing levels of public involvement in the research process. Adapted from Den Broeder et al. 2018, (22), and Marks et al, 2022 (15).

Theoretical Framework

The concept of collaborative citizen science is based on the principles of both participatory action research and citizen science (24, 25), which has been widely used in public health, education, community development, agriculture and social work (25). Collaborative citizen science is seen as a transformative process whereby researchers and participants co-create knowledge and develop a sense of community while engaging and educating each other and negotiating meanings and raising consciousness and together with stakeholders (such as community, researchers, and decision makers). This can be achieved through integrated knowledge translation (IKT) and a robust community-specific stakeholders’ advocacy workshop activity (26, 27). The IKT approach which was intended to enable systematic, continuous engagement with relevant decision-makers throughout the research project, was a key feature of the CEBHA + project (28, 29).

Study design and study population

The detailed methods are described in our protocol paper (23), and summarized below. The study was conducted in four of the five countries of the CEBHA + consortium, viz, Malawi, Ethiopia, Rwanda and South Africa (see Fig. 2.1). We leveraged the “Our Voice” Stanford University citizen science for health equity model (10). The key steps we adopted for this study are outlined on Fig. 2.2.

Legend:

Figure 2.1: Map showing the Project countries | Fig. 2.2: Citizen Science steps (schema)

Setting and sampling of study participants.

Two communities (rural and urban) were purposively selected in each country, except for South Africa, where two townships near the Cape Town metropolis were purposively selected for the study. In each community, 6–13 community members were recruited during community engagement and later trained as citizen scientists– with a total of 12–16 per country. The trained citizen scientists facilitated the recruitment of participants in their neighbourhood for the citizen science survey.

Project implementation and adaptations

The projects were implemented just before, partly during and after the COVID-19 pandemic (2019–2023). The community engagement activity, citizen science survey, and advocacy workshops were undertaken in two of the countries (viz. Rwanda and Ethiopia) by March 2020. Following the onset of the pandemic, the project teams (i.e., the coordinating office and the country-level teams) met virtually to adapt project delivery processes in line with the pandemic regulations in the countries and to support implementation fidelity. The summary of adaptions made and the implementation processes and outputs of the projects in the countries were as follows:

i) Community members/stakeholders’ engagement. A multi-sectoral stakeholder engagement process was implemented in each country to facilitate the learning and co-creation. The engagement process was undertaken more substantially in Ethiopia and Rwanda (as community engagements were done before the COVID-19 pandemic lockdown) compared to Malawi and South Africa where engagements and advocacy were implemented after the lockdown. The citizen scientists were recruited during community engagement phase (See Table 1).

ii) Qualitative enquiry. Prior to launching the citizen science survey, each country conducted 6–11 focus group discussions (FGDs) with community members with the aim of supporting initial qualitative inquiry to understand community and individual’s perspectives on CVD and associated risk factors in poor SSA rural and urban settings. The detailed steps and results of the qualitative enquiry are reported in previous papers (30, 31). The preliminary results from the FGDs informed the conducting of the citizen science survey in each country.

iii) Recruitment of Citizen Science survey participants. Each trained citizen scientist recruited 3–4 community members (participants) from his/her neighbourhood after giving a description of the study and receiving verbal consent to participate. Participants in Rwanda, Malawi and Ethiopia were sampled using convenient sampling method, while those in South Africa were sampled using Snowball sampling technique. The citizen scientists used the EpiCollect mobile app to collect data from the participants as per the study protocol (23). The EpiCollect app (https://five.epicollect.net/) was adapted as a multi-dimensional mobile platform and used to collect participants questionnaire and survey data as well as photos and narratives; capturing local environmental features related to cardiovascular health (32). There was no financial compensation given to participants recruited for the study, as citizen scientists were trained to interact with neighbours who were willing to participate voluntarily.iv) Citizen Science (EpiCollect) questionnaire development and data collection. In each country, the project team and the citizen scientists supported the development, revision, and translation of the EpiCollect-based questionnaire used for the survey. The 6-item survey questionnaire was pilot-tested in the neighbouring communities and translated into local dialects before use. The questionnaire was adapted for each country based on its context; it had four sections viz: i) demography (viz. country, location, age, and gender); ii) CVD risk conception and perceptions, iii) exposure and perceived threats of CVD/risks, iv) options of communication; and iv) health seeking intentions.

Table 1

Citizen Science co-designing process with stakeholders: case of Rwanda adaptation (33).
Step	Activity	Purpose	Number and categories of Stakeholders	Total number of stakeholders
1	Consultation meeting	Sampling study sites	1 researcher and 1 staff at national level (MoH / RBC)	2
2	A three-day workshop	Discuss CEBHA + research Study Protocol with key stakeholders – for feedback	7 researchers, 2 project staff, 3 staff from different ministries, 1 staff from parliament, 2 staff from National Policy, 2 staff from civil society, 1 staff from city of Kigali, 1 academic from University of Rwanda, 1 staff from national referral hospital	20
3	Community engagement	Introduce study to local authorities, PHCs at district/sector levels; recruit citizen scientists.	8–10 PHC stakeholders / local community leaders. Researcher had 8 meetings, each with different	10
4	A one-day meeting	Introduce the study to local community stakeholders	5 Researchers, 1 staff at MoH/RBC, 3 staff at district level, 15 PHC level, 53 local community authorities (4 executive secretaries at sector level, 14 executive secretaries at cell level and 35 chiefs of villages)	68
5	Recruitment of citizen scientists	Identify and select community member	1 Researcher and 2 health center staff	3
6	Training of the trainers on citizen science	Train researchers on citizens science /data collection	5 Researchers (including one researchers who trained his fellow researchers) and 2 project supporting staff	7
7	Citizen scientists training (session 1 & 2)	Train citizen scientists on data collection, analysis and advocacy	7 Researchers, 3 supporting staff, 12 community members (citizen scientists-to be), 4 staff from HCs	22
9	Feedback meeting I	Sharing findings from a pilot citizen science	6 Researchers, 2 project supporting staff, 18 local community members, PHC stakeholders (6 HC and 12 CHWs coordinators, 12 citizen scientists)	26
10	Citizen science data analysis meeting	Data analysis by citizen scientists	7 researchers, 2 project supporting staff, 12 citizens scientists	21
11	Feedback meeting II	Sharing and validating preliminary findings from citizen science data	5 researchers, 2 project supporting staff, 3 staff at ministry level (MoH/RBC), 16 KUs at local community level (4 health center staff and 12 CHWs coordinators) and 12 citizen scientists	26
12	1-day community advocacy workshop in each of urban & rural study site	Sharing findings and advocating for action to prevent CVDs	6 researchers, 2 project staff, 3 stakeholders at MoH level, 1 stakeholder at district level, 4 local community leaders at sector level, 12 local community leaders at cell level, 18 staff at PHC level (6 HC staff and 12 coordinators of CHWs at cell level), 12 citizen scientists, 6 representatives of national youth council at sector level, 3 of national women council and 1 of religions level at sector level, 6 chiefs of villages	72
Total number of Stakeholders (for Rwanda)				277
PHC- Primary Health Care; MoH = Ministry of Health, RBC = Rwanda Biomedical Center, PHC = Primary health care, NGOs = Non-governmental Organizations, HC = health center

v) Co-designing activities. Forty-three (43) trained citizen scientists facilitated the co-designing process, data collection and analysis, and supported the advocacy workshops involving stakeholders in each community. The citizen scientists facilitated prioritization of the key findings and their implications and additionally led the presentation and discussion of these results with the stakeholders during advocacy workshops. In Rwanda, for example, the Citizen scientists and the stakeholders (considered as data users) were involved in planned co-designing activities using citizen science processes towards achieving set integrated knowledge translation (IKT) results as seen in Table 1 (33).

vi) Stakeholder Advocacy Workshops. A total of seven community-specific advocacy workshops were held in the participating countries near the end of the project. The purpose of the workshops was to present results of the study to community members, the decision-makers and other stakeholders in each country, and to discuss the implications of the study findings and advocate for community-level strategies to prevent CVD. Findings from the citizen science survey and FGDs were used to guide the advocacy workshops.

vii) Follow up advocacy for prevention intervention action. Following the stakeholder advocacy workshops in the communities, the project teams (including the principal investigators [PIs], researchers and stakeholders) in each country undertook follow-up engagement and consultations with the stakeholders. The essence of the follow-up advocacy was to further meet with key decision makers and stakeholders, such as the focal persons of NCD Units in the Ministry of Health (in Ethiopia), the Health Advisory Facility Committee (in Malawi), and the Rwandan Biomedical Centre to follow up on the agreed action plans and promises made during the stakeholder advocacy workshops. This process is not completed in South Africa.

Data preparation and analysis

The country-specific data collected by the citizen scientists were first extracted from the EpiCollect platform and organized by the research team and the citizen scientists from each community in the respective study countries. Simple thematic analysis methods were adopted and included discussing individual narratives and the photos in groups of 3–4 citizen scientists and researchers (34). Then with support from the research teams, the citizen scientists summarized the priority issues and documented these using cardboard and flip-charts in each project community. Descriptive analysis was then undertaken by the citizen scientists and KO to describe and compare CVD risk perceptions in and across the project sites and countries. The findings were summarized and made available for presentation by designated citizen scientists during the advocacy workshops. In addition, the data on perceived causes and mitigating factors for CVD were analysed with the help of citizen scientists, and presented by KO (first author) using bubble graphs and bar charts. The ‘bubbles’ in the bubble graphs (Figs. 4.1 & 4.2) were calculated as a weighted proportion of each factor (as reported by participants) over the overall total for the identified factors. The bar chats were plotted using frequency of occurrence of specific factors (as reported) per community in each country.

Reflexivity

The researchers in the project countries led the research, and worked with the citizen scientists and the principal investigators of the project and identified stakeholders. The team in each country included at least one social scientists, a public health researcher and a clinical/medical professional. We envisage that the interactions and influence of the research team members with the citizen scientists and other stakeholders might, in some way influenced their views and responses. Importantly, the country project team members had learned to work together with cordiality, as they engaged with the citizen scientists and stakeholders right from the planning and implementation stages onto the end of project without issues and negative interference. Training and engaging the citizen scientists to gather data from participants in their neighbourhood was of great advantage, as there were seemingly no disparity in the power of influence between the citizen scientists and their neighbours (survey participants) – as they were at the same level of influence.

Project outputs and outcomes

The key outputs and intermediate outcomes of the project are listed in Table 2. About 26 consultation meetings (3–5 in each community) were held with the community stakeholders as part of the initial community engagement activities. Forty-three citizen scientists (52% women), were recruited and trained to lead the citizen science activities including community advocacy workshops. We collected 100–150 photographs and 150–240 voice recordings on CVD risk perceptions, communication and health-seeking intentions. A total of 203 participants were interviewed by the trained citizen scientists. About 65% of the participants reported a relative who had died of any CVD.

Over 90% of participants were willing to visit a nearby health clinic for re-assessment if screened and referred by a community health worker. In each country, multi-level stakeholders (ranging from 81–101 persons) attended the advocacy workshops conducted, and discussed and agreed on prevention strategies. The results of the citizen science study and advocacy workshop activities are presented below. In addition, 26 focus group discussions (FGDs) were conducted during the qualitative enquiry in the rural and urban communities. The FGDs findings (for Rwanda) have been published elsewhere (30).

Co-designing and integrated knowledge translation

In all the countries, the project teams worked hard to embed citizen science into their CEBHA+-supported integrated knowledge translation (IKT) strategy, resulting in robust stakeholders’ engagements, data demand and information use, and policy dialogue (33). Specifically, in Ethiopia and Rwanda, our collaborative citizen science project proved to be an important strategy for research co-design and solution co-production. In these two countries compared to the others, the citizen scientists (data collectors and users) and the decision makers (considered as data users) were highly involved in planned co-designing activities towards achieving IKT results.

Perceived risk factors for cardiovascular diseases (photo-voices)

Participants in all the communities in the three countries where photo-voice data were available (i.e. Ethiopia, Malawi and South Africa) indicated that their main perceived causes of CVD (such as hypertension, stroke, heart failure, heart attack, and angina) were substance use (cigarette smoking, excess alcohol and drug us), food-related factors (excess salt, sugar, coffee, lack of food, and poor-quality cooking oil), and litter, in that order. These were followed by physical inactivity, emotional factors, poverty, and crime and violence (Fig. 3.1). A detailed community-specific analysis of these factors is presented in Fig. 3.2. Notably, in the two South African urban townships, crime, substance abuse and litter were the most commonly mentioned risk factors relative to the other countries. (Fig. 3.2).

Table 2

Description of the citizen science study in the four countries: participants, scope and immediate outputs
Project Parameters	Ethiopia		Malawi		South Africa		Rwanda
Communities	Rural (Adama rural); Urban (Addis Ababa)		Rural (Chilumba); Urban (Lilongwe, Area 25)		2 Urban townships (Bishop Lavis & Langa)		Rural (Burera district); Urban (City of Kigali)		Overall
	Rural	Urban	Rural	Urban	Township 1⁺	Township2^χ	Rural	Urban	Total
Consultation meetings	3	4	2	3	5	4	3	4	26
Citizen Science EpiCollect Survey
Trained Citizen Scientists ^α	6 (3 M/3 F)	6 (4M/3 F)	6 (3M/3 F)	6 (3M/3F)	8 (4M/4F)	7 (3M/4 F)	6 (3 M/3 F)	6 (3 M/3F)	43
Age range of Citizen scientists )	27–65	25–65	19–65	18–64	20–65	18–69	28–45	23–63
Number of Participants Surveyed	25(15M/10F)	21 (7M/14F)	21 (9M/13F)	22(8M/14F)	41(11M/30F )	27(9M/18F)	24(10M/15F)	24(11M/12F)	205
Education Level: None	12 (48.0%)	2 (9.5%)	10 (47.6%)	12 (54.5%)	0 (0%)	7 (25.9%)	0 (0%)	0 (0%)
At least a Primary level	13 (52.0%)	8 (37.9%)	11 (52.3%)	10 (45.5%)	41 (100.0)	18 (74.1%)	24 (100.0%)	24 (100.0%)
FGDs/participants number*	2 (13)	2 (12)	2 (12)	2 (12)	7 (76)	4 (38)	4 (34)	3 (31)	26 (228)
CS Results
Number of photos taken	125	105	105	120	142	120	~ 130	148	995
Number of narratives recorded	150	126	126	132	193	180	135	130	1172
Reported a relative with CVD (Yes)^#	10 (40.0%)	18 (85.7%)	15 (71.4%)	18 (81.8%)	21 (50.0%)	17 (56.7%)	280	294	129(63%)
Willing to visit clinic if screened and referred by CHW^	25 (100%)	21 (100%)	20 (95.2%)	22 (100%)	41 (100%)	27 (90.0%)	20 (83.3%)	16(66.7%)	83–100%
Advocacy & Prevention Strategies
Integrated knowledge translation activity	Yes	Yes	Yes	Yes	Yes		Yes	Yes
Number of advocacy workshops held	1	1***	1	1***	1		1	1***	7
Stakeholders^$ in advocacy workshop	45	48	38	43	45		56	45	320
Organizations stakeholders come from ^!	MoH, E, T, H, C		MOH, E, T, C		MOH, E, T, H, C		MoH, E, T, H, R
Stakeholders discussed/prioritized CVD prevention strategies.	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes
^* The study participants were men and women aged 18 and above who were residents of the study community; most had limited education (high school of primary education)

^α ^ Citizen scientists level of education Ethiopia (Grade 3–12); Malawi (Grade 4-); South Africa (Grade 6–12; Rwanda (Primary 3-High school); **A combined advocacy workshop was held in Cape Town; *** One (1) advocacy workshop & one (1) IKT workshop with decision makers; ^CHW – Community Health worker or volunteer; ^$Stakeholders here included the citizen scientists; ^# Heart-related diseases (or CVD) such as heart attack, heart failure, stroke, myocardial infarction, angina, and hypertension; ^!Community, district and national-based policy-level stakeholders, including leaders in the Ministry of Health (MoH), Education/academia (E), traditional/Religious (T), Local Health Committees (H), Rwanda Biomedical Centre (R), Village Chief/head (C), etc) who participated in the advocacy workshops; + Black-dominated township; ^χColoured-dominated township.

i) Substance abuse and crime:

High intake of alcohol was considered a risk factor across all countries – though the type differed by country. The types of local alcohol in the countries were Areke (local gin in Ethiopia), Farso (local beer in Malawi) and Kachasu (local spirit in Malawi). In addition, chewing khat (local stimulant) in Ethiopia and nyaope (i.e. mixture of heroin, cannabis products, antiretroviral drugs, etc) in South Africa were considered risk factors for CVD in both the rural and urban areas. The concerns around smoking, drugs and violence were mentioned in most urban communities. In South Africa (Township 1) for example an older woman stated this:

“Those who are smoking nyaope in our community can grab (i.e., kidnap or rape) our kids and also break into our houses. These situations usually bring anxiety resulting in high blood pressure – and makes one to be at high risk of heart attack. [South Africa, Township 1–65-year old woman].

ii) Food-related factors:

The perceived effects of intake of excess sugar, salt, and poor quality vegetable oil on the heart was emphasized in the countries. Examples of these assertions are given below:

“Excess sugar, salt, coffee and alcohol (Kachasu) are very bad for the heart and body. Also, the lack of food (at home) can cause malnutrition, and stress – these affect my heart”. [Malawi, 49-year old woman -urban].

“Much oil (from poor quality vegetables oil) accumulates around the heart and blocks blood vessels thereby causing heart disease and paralysis”. [Ethiopia − 42- year old woman -urban].

iii) Poverty, crime and violence:

Participants interviewed in South African townships, and urban Malawi, Ethiopia and Rwanda emphasized the notion that poverty is one thing that aggravates substance abuse, crime and violence in their communities.

"The community where we are living is a slum. Most people are unemployed, and poverty is high so people tend to drink a lot, and crime is very high. [Malawi − 35-year old man - urban].

Others commented also on violence and crime as follows:

“There are lots of crimes going on in our community, and this is very dangerous to our lives. The sound of gunshots can lead to heart attack” [South Africa − 58- year old woman - Township 1].

iii) Litter (poor sanitation and hygiene):

The problem of litter was highlighted in all the communities and countries surveyed.

“Unclean environment, stagnant water without proper toilet is bad for health especially to our children and the elderly in the community. [Ethiopia − 25-year old woman - urban].

“Litter is a high risk. This is because we get to inhale all the bad things that come from the dirt, and that can make us get sick”. [20-year old female SA Township 1].

Perceived positive factors for cardiovascular health

The positive factors for cardiovascular health as perceived by participants are represented in the bubble charts in Figs. 3.1 & 3.2. Overall, the main factors that participants in all communities indicated as those that will help mitigate their cardiovascular health risk were nutrition or food-related (i.e. balanced diet, fruits/vegetables, and water), physical activity, and green space (i.e. clean environment, green space, and peaceful communities), in that order.

Other mitigating factors mentioned were lifestyle modification (e.g. stopping smoking, and tobacco and alcohol use, and avoidance of exposure to fume/stove); having income (money or resources), and dealing with emotional factors (such as stress, worry and anxiety). “Exercise, and gardening are very good for your heart (mind) and spirit. It is engaging, and you feel happy afterwards …” [South Africa – 64-year old man – urban township].

“Where there is gentle breeze blowing (i.e. green nature space), and no noise - a person will have a peaceful life, and cannot suffer from heart disease because this is calming, and make one feel good. [Malawi − 50-year female-Urban].

Figure 4.2 shows the distribution of the reported factors (and frequency of occurrence) by community, with nutrition, green space, and income being three major factors reported in South African townships, and the rural and urban communities of Malawi and Ethiopia. In all the countries participants indicated that a peaceful and natural environment (green space), and physical activity as factors that affect the heart positively.

Legend:

Figure 3.1*: A: Perceived causes (and risk factors) of cardiovascular diseases in South Africa, Malawi and Ethiopia

*Bubble is calculated as weighted proportion of each factor over the overall total for identified factors

Figure 3.2: Perceived causes of heart-related diseases in six community settings*

* Bar chats were plotted using frequency of occurrence of specific factors (as reported) per community in each country. The frequencies were not weighted by the overall total for all groups.

Identified barriers, and prioritized CVD prevention strategies and actions

The seven most identified problems or barriers to CVD risk prevention and the prioritized prevention strategies agreed upon during the advocacy workshops are presented in Table 3. These barriers differed by country and by locations within countries. In all the rural and urban communities, poor perception and awareness of CVD despite high CVD risk in communities, litter/garbage (or poor sanitation/hygiene), limited access to CVD prevention services and high rates of substance use were the common and priority problems that needed to be addressed. There was a high degree of similarity in the prevention strategies agreed upon by the stakeholders in most of the countries.

In all countries, community-level campaigns and participatory strategies were indicated as solutions for addressing the poor perception and awareness barriers. In the South African townships and urban Ethiopia, strategies to reduce the high rates of alcohol use, cigarette smoking and crime were commonly mentioned; the prioritized interventions were youth-driven community-based behaviour change interventions. In Rwanda, the prioritized prevention strategies against substance abuse include sensitizing the youth and community members on the effects of illicit drugs sales and drug abuse. The prevention strategies listed for poor nutrition had included community-based programmes to train community members on how to prepare a balanced diet using locally available foods. In Ethiopia and Rwanda, to address the identified lack of CVD risk screening and prevention services, CHWs/HEWs were trained to conduct CVD risk screening and blood pressure measuring device and weight scales were provided. In general, over 4795 adults were screened and about a third referred for care for CVD risk using CVD risk score assessment tool in Ethiopia [n = 1300] (35), and Rwanda [n = 995] (36), and in Malawi [about 2500].

This study is among the first examples of a large scale citizen science project systematically implemented across multiple communities in several SSA countries. It leveraged co-design and community engagement approaches to generate rich, country-specific data to inform decision making targeting the prevention of CVD (23, 33). The main findings were: i) the perceived causes of CVD in all the countries were similar, but participants unexpectedly emphasised other indirect factors (such as litter, poverty, substance abuse, crime, violence, stress, loss of job/relative) which were not consistent with most conventional causes of CVD (i.e., physical activity, diet, cholesterol, lifestyle, and hereditary factors). Notably, crime and substance abuse were major issues in South Africa relative to elsewhere; food-related factors was dominant in Malawi, food-related and emotional factors were dominant in Ethiopian communities.

ii) trained citizen scientists successfully facilitated co-learning and co-production activities besides data collection, analyses, presentation and facilitation of advocacy workshops;

Legend:

Figure 4.1: Perceived positive factors for cardiovascular health in communities (combined) - South Africa, Malawi, and Ethiopia)

Figure 4.2: Perceived positive factors for cardiovascular health by communities - South Africa, Malawi, and Ethiopia)

* Bar chats were plotted using frequency of occurrence of specific factors (as reported) per community in each country. The frequencies were not weighted by the overall total for all groups.

iii) the positive factors perceived to mitigate effect of CVD were mainly nutrition or food-related, physical activity, and green space (i.e., clean and peaceful communities). These positive factors were directly connected with the reported perceived causes in each community; and; iv) through advocacy workshops and IKT activities, stakeholders in each country (especially those in health sector) had supported prioritization and begin to implement some locally-relevant CVD risk prevention solutions, including CVD risk screening and referral to care.

Overall, our study showed that learning together and engaging community members in different settings as citizen scientists can help build a bi-directional trust between researchers and communities in identifying the most needed and meaningful science-enabled activities of relevance to these sub-Saharan countries. The results of this study indicate that multi-country community-driven citizen science projects can facilitate effective multi-level engagement and participation of community stakeholders (including both community members and policymakers) in exploring CVD perceptions and supporting the co-creation, co-development, advocacy and implementation of contextually relevant health interventions in SSA (15, 37). The summaries of the implications of the main findings are discussed below.

Perceived CVD causes and mitigating factors by setting

The concerns around CVD and the perceived risk observed extended beyond the conventionally known risk factors (diet, physical activity, drug and substance use, etc) in all the countries. Consequently the citizen scientists and stakeholders proffered solutions that were considered community-relevant to address these additional perceived factorss such as stress, poor sanitation/hygiene, litter, poor quality cooking stoves, crime, and unrest/fighting, particularly in the urban sites in South Africa, Malawi, and Ethiopia. Based on these findings, community-specific health promotion and education intervention were preferred as prevention strategies (see Table 3). A more detail findings on the CVD causes, mitigating factors, and their implications in each country and settings is documented in another paper under review for publication (Okop et. al.- forthcoming).

Citizen Scientists facilitated collaboration, co-learning and co-creation

Through this study, communities were empowered to collaboratively engage in science to: i) explore the perceptions and communication of CVD risk in their setting; and ii) support advocacy for CVD risk prevention using the evidence generated from the collaborative approach. It is believed that the collaborative approach facilitated co-leading of this multi-setting research project that helped foster an authentic partnership between the formal scientific community and groups of community members and stakeholders, as opposed to having the researchers try to "go it alone" without the indigenous context learning, planned researcher support, training, and co-production (14). Participatory methodologies have been very useful in the co-creation, co-production and evaluation of public health interventions (38, 39). The citizen-engagement, co-learning, co-design processes helped in eliciting knowledge and learnings that were acceptable and trusted by the community to assist in the development of relevant and more meaningful CVD risk communication and prevention strategies.

For instance, in all four project countries, an important barrier to prevention of heart-related diseases was found to be the poor perception, knowledge and awareness gap with regard to CVD/ risk factors. Notably, community members and stakeholders recommended interventions in each community to address the poor perception and awareness gaps in both the rural and urban communities.

Importantly, the trained citizen scientists gained transferable scientific skills, including hands-on training in conducting community-based surveys, use of mobile devices for systematic interviewing and data gathering, data extraction methods, simple analysis (compiling the findings in a usable, meaningful format), and presentation of findings as part of the stakeholder advocacy workshops. A majority of the Citizen scientists shared their utmost excitement at being given an opportunity to learn to lead research and prevention advocacy activities as “community scientists”. They described their feelings of personal satisfaction and fulfilment as “local scientists” capable of engaging in community-driven indigenous science through anecdotal reporting from their project teams and during stakeholders’ workshops.

Table 3
Advocacy workshops results: Identified problems/barriers and prioritized prevention strategies and actions who’s responsible
Problems/Barriers	Country	Strategies/Solutions	Who?	How?	Was it done?
Poor perception and awareness on CVD in communities	Ethiopia(Rural/Urban)	Awareness campaigns in communities.	MoH, AHRI, schools, faith-based	Use IEC/BCC materials for campaigns	Done
	Malawi(Rural Urban)	Conduct NCDs awareness campaigns at community level by trained CHWs.	MoH, PHC Managers, HACs	Trained and deploy CHWs to support for community sensitization	Not done
	Rwanda (Rural & Urban)	Designing community-led participatory strategies to address knowledge gap.	MOH/RBC - District level; Health committees in Sector, cell & village levels	Sensitize local communities on CVD and risk factors.	Done
	South Africa (Townships)	Support awareness creation on CVD risk at schools, and townships.	Health committees, district-level DoH	Involve Western Cape on Wellness (WoW) hubs to support CVD prevention campaign	Not done yet.
Physical Inactivity (PA)	Ethiopia (Urban)	Promote and encourage physical activity in schools, workplace and community	Civil Service, community, PHCs, and village to support.	Arrange physical exercise (weekly) events at different workplaces and communities	Not done yet
	Rwanda (Rural & Urban)	Create awareness, and provide access and support for physical activity initiatives.	MOH, Health committees, volunteers, schools and religious centres	Organize PA events at work place, communities/village levels	This has been done.
	South Africa (Townships)	Promote and encourage physical activity in schools, workplace and community	NGOs, Western Cape on Wellness (WoW) hubs to support PA in communities	Arrange PA events at community-level. Support open streets townships	Partly done by NGOs
Limited access to community-level CVD prevention information & services	Ethiopia (Rural & Urban)	Implement NCD/CVD risk screening and care intervention	AHRI CEBHA+ & CDIA teams, in conjunction with MoH/NCD Unit	AHRI to train CHWs/HEWs to deliver CVD risk screening and referral to care	Done. Over 3000 persons screened
	Ethiopia (Rural & Urban)	Organizing training for CHWs/volunteers on NCD/CVD.	MoH, Regional Office, Zonal Office, and Town Health Offices, AHRI NCD Unit	1. MOH/NCD unit to re-train and deploy more HEWs to communities. 2) Use citizen science.	Done in collaboration with NCD unit (MoH)
	Malawi (Rural & Urban)	Community health promotion at community-level events	NCD Focal person, MOH, HAC. MOH	Build capacity and provide resources for NCD-related community health programmes	Not done yet
	South Africa (Townships 1&2)	Implement community-engaged CVD prevention health promotion & screening	DoH, WoW, Local health committees.	Undertake CHWs-led NCD risk screening and care intervention	Was pilot-tested in 2 townships previous.
	Rwanda (Rural & Urban)	CHW-led CVD risk screening and referral for care	Rwanda Biomedical center, primary health care stakeholders, project research team	Train & deploy CHWs for CVD risk screening, referral and care intervention in communities	Done
Poor diet /junk food (nutrition)	Ethiopia (Rural & Urban)	Community-based intervention targeting preparation of healthy diet from locally available food items	AHRI project team to support NCD unit with IEC/BCC materials on healthy food	MOH, NCD unit and AHRI CEBHA + team to support health promotion on health eating.	Awareness programme held
	Rwanda (Rural & Urban)		MOH, community leaders, volunteers, Citizen scientists, schools and religious centres	Train Citizen scientists /volunteers to support preparation of healthy diet from locally available food items.	Has been done
	South Africa (Townships)	Community-based intervention targeting healthy diet from locally available food	MOH, community leaders, volunteer, schools and religious centres	Train CHWs, and WoW members to support local training on food preparation and budget	Not done yet
Dumping of cheap poor quality vegetable oil	Malawi (Rural & Urban)	Facilitate access to good quality cooking oil, and ban inferior quality vegetable oil	Malawi Bureau of Standards, MOH, research and advocacy groups	Present/discuss Policy Briefs developed to Malawi Bureau of Standards	Policy brief developed
Litter: Poor sanitation/hygiene	Ethiopia (Rural & Urban)	Community health education to provide information on sanitation an hygiene.	MoH, MoE, AHRI CEBHA + team	Collaboration with MoE, and MOH to support community participation in waste management	Not done yet
	Malawi (Urban)	Community-level support for adequate waste management & clean environment	MoE, MOH, PHC, community-based organisations, HAC	Commission community sanitary committee to support clean environment and households.	Advocacy done with key stakeholders
	Rwanda (Rural & Urban)	Emphasising adequate litter and waste disposal	MOH, community leaders, volunteers, citizen scientists, schools, religious places.	Sensitization of community members support sewage system maintenance.	Has been done
	South Africa (Townships)	Support effective litter and waste disposal	Municipality to communities participatory, waste management initiatives	Sensitization of community members and villages to support weekly waste management	Not done yet
High rates of alcohol use, cigarette smoking & crime	Ethiopia (Urban)	Conduct community health education	Ministry of health, Regional health office,	Health information in the local languages.	Partly done in Adama
High rates of alcohol use, cigarette smoking & crime	South Africa (Townships)	Youth-driven community-based intervention targeting behaviour change	DoH- municipal and district; local health committees, local committee groups.	Engage early with young persons in schools, communities, on violence/crime prevention	Not done yet
* HEWs: Health extension workers; HAC: Health Action Committee; Citizen scientists : citizen scientists; MOH: Ministry of Health; PHC: Primary Health Centre; CEBHA+: Collaboration for Evidence-based Health Care and Public Health in Africa; CDIA: Chronic Disease Initiative for Africa; RBC: Rwanda Biomedical Centre; MoE: Ministry of Environment/Ministry of Works; IKT: Integrated knowledge translation

Collaborative prioritization and implementation of locally-relevant solutions

Through advocacy workshops and IKT activities, stakeholders in each country were able to support the prioritization and implementation of locally-relevant solutions for CVD risk prevention. This approach helped empower communities to take action to improve their health and wellbeing by first taking a lead in exploring CVD risk, collecting and analysing data, identifying, and prioritising community-based strategies, and, finally, mobilizing support and advocacy for sustainable solutions (15). For example, in Ethiopia (rural and urban), following community advocacy workshops, the stakeholders in collaboration with the Ethiopian AHRI (Armeur Hansen Research Institute) project team supported the re-training of 12 health extension workers (HEWs) on blood pressure screening and CVD risk screening. The trained HEWs conducted a 4-week CVD risk screening intervention programme in 10 communities using a mobile app. The persons who were identified as high risk for CVD (124 out of 3000) were referred to designated clinics for care. Besides Ethiopia, CVD risk screening and referral to care interventions were successfully implemented in Rwanda and Malawi. In South Africa, community-engaged CVD risk prevention health promotion and screening programme were identified as an essential strategy for addressing CVD prevention in the townships.

The prioritized community-level prevention strategies included the following: i) nutrition-focused interventions (i.e., preparation of healthy diet from locally available food items); ii) maintenance of sanitation and hygiene; and iii) supporting regular physical activity mostly in urban communities through community-level physical activity events, building of recreational parks, and green spaces. It was a great achievement to see some of the suggested intervention strategies (i.e. nutrition, physical activity, and sanitation and hygiene) being followed through and implemented in Ethiopia and Rwanda following the stakeholders’ advocacy workshops in these countries. A recent systematic review had reported that community-based interventions had successfully improved knowledge and create awareness on CVD and risk factors and influence physical activity and dietary practices in the communities (5).

Challenges and lessons learnt

This research, the first of its kind in exploring CVD risk perception and co-developing prevention strategies and advocacy in SSA settings, adds value to citizen science research globally. There were, however challenges encountered in the study. While the initial meetings of the research teams and consultations with stakeholders in each country took place before the pandemic, the COVID-19 restrictions heightened the challenge of meetings timely in all the countries during the co-designing and implementation of projects. It was expected that much of the collaborative citizen science research activities needed to be facilitated by the beneficiaries (citizen scientists and stakeholders) but, due to COVID-19, we experienced delays in scheduling timely consultation meetings with the stakeholders. As a result, the project team had to exercise a great deal of patience in re-scheduling meetings and being able to work with the citizen scientists and stakeholders at the times they were available. In addition, there were delays in some settings (particularly in the rural communities) in getting the citizen scientists (after data collection) to support organizing the narratives and photos, data analysis and results interpretation. We also observed that 2–3 days of training of the citizen scientists was not sufficient to build their capacity to support the data collection, organization and analysis, and presentation as expected. In some countries, we had to organise additional training sessions for the citizen scientists to further enhance their skills. Future studies of this type will need to pay particular attention to such constraints and continue to work on creative ways for mitigating them. The key lessons learnt include: i) ensuring active participation of citizens in exploring CVD perceptions, co-designing and implementing research can support participatory engagement for inclusive learning, co-designing, and co-creation intervention actions to address CVD prevention. ii) the process of producing reliable knowledge can be developed and enacted by citizens themselves with support from researchers; iii) importantly, working with teams across multiple countries and settings to support efficient research implementation and intervention sustainability requires dedicated resources, time allocated for team building and co-learning from the planning to evaluation stage.

Study strengths and limitations

This study used robust systematic and community-engaged processes to support participation of multi-level stakeholders in participatory research towards addressing local health problem with community-specific solutions. The collaborative methods supported active and productive citizen-led participatory research engagements. The study has some limitations. It was conducted only in selected communities in four countries in SSA, and therefore, the findings may imply in each individual project country, but may, however, not be generalizable in the SSA region. However, findings of this study can be utilised to support CVD prevention programmes in similar settings in SSA. It is also important to state that, the views of the citizen scientists, as well as their list of prioritized health problems and prevention strategies may be based on their indigenous learning, and exposure.

The study findings indicate that the collaborative and community engagement methods deployed were able to build capacity and relationships among citizen scientists, researchers, and the targeted stakeholders at multiple levels and in the rural and urban settings. The collaborative citizen science and co-creation approaches employed indicate one way to support effective and efficient enquiry into community health issues while facilitating and supporting community-engaged solutions and advocacy. Such participatory methods can, in the long run, provide the appropriate tools and interactions to enable programme implementers and governments to actualise effective implementation of sustainable CVD or NCD prevention programmes in LMICs. We advocate for the use of collaborative citizen science to foster learning and co-designing of community-based prevention and actionable advocacy strategies to address important health problem (such as CVD and NCDs) in SSA settings.

CVD: Cardiovascular disease

SSA: sub-Saharan Africa

LMICs: Low- and Middle-income countries

CHWs: Community health workers

PAR: participatory action research

CEBHA+: Collaboration for Evidence-based Health Care and Public Health in Africa

NCDs: Non-communicable diseases

SES: Socio-economic status

HEWs: Health Extension workers

FGD: Focus group discussion

CDIA: Chronic Disease Initiative for Africa

Ethics approval and consent to participate

The authors confirmed that the research activities and methods were carried out in accordance with the Declaration of Helsinki, and the relevant international guidelines and regulations including GDPR (General data processing regulation), as well as the POPI (Protection of personal information) Act which governs data protection and privacy in South Africa. Ethics approvals were obtained from the respective country national and or institutional ethics review committees. In Malawi, the College of Medicine Research Ethics Committee (ref: P.01/19/2582); and in Ethiopia, Armeur Hansen Research Institute (AHRI) Research Ethics Committee (ref: P011/19) approved the study. For Rwanda, approval was given by both the Ministry of Health Research Committee and National Research Ethics Committee. Ethics approval for South Africa study was obtained from the Human Research Ethics Review Committee (HREC) of the University of Cape Town (ref: 437/2022). Each Citizen Science survey participant was enrolled after voluntarily providing signed or verbal informed consent to participate in the study. Trained research assistants explained the study to each participant using the study information sheet. The data collected were stored in secured repositories approved by the ethics committees of each country. We chose a free and easy-to-use mobile data-gathering platform (EpiCollect) as (https://five.epicollect.net/) which has secured server and storage system that is GDPR (General Data Protection Regulation) compliant (40). Only data with participants’ personal identifiers carefully removed were shared for joint analysis.

Consent for publication: The individual details, images or videos are not included in this articles, and hence no need for con Consent for publication.

Availability of data and materials

The datasets used and analysed during the current study are available from the corresponding author on reasonable request.

Competing interests

The authors declare that they have no competing interests" in this section.

Funding

Funding for the larger study (CEBHA+) for which this study is part of was obtained from the German Ministry of Education and Research (BMBF) – the funding number is 66.3010.7-002.12. The funder was not involved in the writing of this manuscript.

Authors' contributions

KJO, NSL, EVL, KM conceptualised the study, drafted and revised the manuscripts; EVL KK, HG, RH, JB, SN, CB, SR, SK, EC, CB, ACC, GC, ACK, TP, AB, KS, SW supported study design, drafting and revision of the manuscript. All authors read and approved the final manuscript.

Acknowledgement

We acknowledge the research teams, and support staff in each country for their support during the engagement and consultations. We are grateful for Dr Jacob Burns at Ludwig Maximilian University, Munich, who provided methodological insights throughout the study, as well as supported manuscript development.

Walli-Attaei M, Joseph P, Rosengren A, Chow CK, Rangarajan S, Lear SA, et al. Variations between women and men in risk factors, treatments, cardiovascular disease incidence, and death in 27 high-income, middle-income, and low-income countries (PURE): a prospective cohort study. Lancet (London, England). 2020 Jul 11 [cited 2023 Feb 14];396(10244):97–109.
WHO (World Health Organization). Cardiovascular diseases - Key Facts. Geneva, Switzerland; 2021.
Boateng D, Wekesah F, Browne JL, Agyemang C, Agyei-Baffour P, De-Graft Aikins A, et al. Knowledge and awareness of and perception towards cardiovascular disease risk in sub-Saharan Africa: A systematic review. PLoS One. 2017;12(12):1–21.
Ndejjo R, Nuwaha F, Bastiaens H, Wanyenze RK, Musinguzi G. Cardiovascular disease prevention knowledge and associated factors among adults in Mukono and Buikwe districts in Uganda. BMC Public Health. 2020 Jul 22 [cited 2023 Jan 23];20(1):1–9.
Ndejjo R, Hassen HY, Wanyenze RK, Musoke D, Nuwaha F, Abrams S, et al. Community-Based Interventions for Cardiovascular Disease Prevention in Low-and Middle-Income Countries: A Systematic Review. Vol. 42, Public Health Reviews. Frontiers Media S.A.; 2021. p. 1–26.
Surka S, Steyn K, Everett-Murphy K, Gaziano TA, Levitt N. Knowledge and perceptions of risk for cardiovascular disease: Findings of a qualitative investigation from a low-income peri-urban community in the Western Cape, South Africa. African J Prim Heal Care Fam Med. 2015;7(1).
Okop KJ, Mukumbang FC, Mathole T, Levitt N, Puoane T. Perceptions of body size, obesity threat and the willingness to lose weight among black South African adults: a qualitative study. BMC Public Health. 2016;16(1):365.
Gillum RF. The Burden of Cardiovascular Disease in Sub-Saharan Africa and the Black Diaspora. J Racial Ethn Heal Disparities. 2018;5(6):1155–8.
Tulu SN, Al Salmi N, Jones J. Understanding cardiovascular disease in day-to-day living for African people: a qualitative metasynthesis. BMC Public Health. 2021;21(1):1–14.
King AC, King DK, Banchoff A, Solomonov S, Natan O Ben, Hua J, et al. Employing participatory citizen science methods to promote age-friendly environments worldwide. Int J Environ Res Public Health. 2020;17(5).
Morton Ninomiya M, George N, George J, Linklater R, Bull J, Plain S, et al. A community-driven and evidence-based approach to developing mental wellness strategies in First Nations: A program protocol. Res Involv Engagem. 2020;6(1):1–12.
King AC, Odunitan-Wayas FA, Chaudhury M, Rubio MA, Baiocchi M, Kolbe-Alexander T, et al. Community-based approaches to reducing health inequities and fostering environmental justice through global youth-engaged citizen science. Int J Environ Res Public Health. 2021;18(3):1–29.
Springer M V., Skolarus LE. Community-based participatory research: Partnering with communities. Stroke. 2019 Mar 1;50(3):E48–50.
Pedersen M, Wood GER, Fernes PK, Goldman Rosas L, Banchoff A, King AC. The “Our Voice” Method: Participatory Action Citizen Science Research to Advance Behavioral Health and Health Equity Outcomes. Int J Environ Res Public Health. 2022;19(14773):1–16.
Marks L, Laird Y, Trevena H, Smith BJ, Rowbotham S. A Scoping Review of Citizen Science Approaches in Chronic Disease Prevention. Front Public Heal. 2022 May 9;10(743348):1–16.
Abayneh S, Lempp H, Hanlon C. Participatory action research to pilot a model of mental health service user involvement in an Ethiopian rural primary healthcare setting: Study protocol. Res Involv Engagem. 2020;6(1):1–14.
Slattery P, Saeri AK, Bragge P. Research co-design in health: a rapid overview of reviews. Heal Res Policy Syst. 2020;18(17):1–13.
Vargas C, Whelan J, Brimblecombe J, Allender S. Co-creation, co-design and co-production for public health: a perspective on definitions and distinctions. Public Heal Res Pract. 2022;32(June):1–7.
Kim Y, Lee H, Lee MK, Lee H, Jang H. Development of a Living Lab for a Mobile-Based Health Program for Korean-Chinese Working Women in South Korea: Mixed Methods Study. JMIR mHealth uHealth. 2020 [cited 2022 Aug 24];8(1).
Palozzi G, Antonucci G. Mobile ‑ Health based physical activities co ‑ production policies towards cardiovascular diseases prevention : findings from a mixed ‑ method systematic review. BMC Health Serv Res. 2022;1–26. Available from: https://doi.org/10.1186/s12913-022-07637-8
Wallerstein N, Duran B, Oetzel JG, Minkler M. Community-based participatory research for health: Advancing social and health equity. John Wiley & Sons; 2017. 19–29 p.
Den Broeder L, Devilee J, Van Oers H, Schuit AJ, Wagemakers A. Citizen Science for public health. Health Promot Int. 2018 Jun 1;33(3):505–14.
Okop KJ, Murphy K, Lambert EV, Kedir K, Getachew H, Howe R, et al. Community-driven citizen science approach to explore cardiovascular disease risk perception, and develop prevention advocacy strategies in sub-Saharan Africa: a programme protocol. Res Involv Engagem. 2021 Dec 1;7(1):1–14.
Macdonald CD. Understanding Participatory Action Research: A Qualitative Research Methodology Option. Can J Action Res. 2012;13(2):34–50.
Vollman AR, Anderson ET, McFarlane J. Canadian community as partner: Theory and multidisciplinary practice. First. (ESP). WKHA, editor. Canadian Community As Partner: Theory and Multidisciplinary Practice. 2016. 1–908 p.
Kemmis S, Wilkinson M. Participatory action research and the study of practice. In: (Eds.) D& YSL, editor. Action research in practice; partnership for social justice in education. 1998. p. 336–96.
Abayneh S, Lempp H, Hanlon C, Branquinho C, Tomé G, Grothausen T, et al. Community-based Youth Participatory Action Research studies with a focus on youth health and well-being: A systematic review. J Community Psychol. 2020;6(December 2019):1–14.
Pfadenhauer LM, Grath T, Delobelle P, Jessani N, Meerpohl JJ, Rohwer A, et al. Mixed method evaluation of the CEBHA+ integrated knowledge translation approach: a protocol. Heal Res Policy Syst. 2021 Dec 1;19(1).
Jessani NS, Rohwer A, Schmidt BM, Delobelle P. Integrated knowledge translation to advance noncommunicable disease policy and practice in South Africa: application of the Exploration, Preparation, Implementation, and Sustainment (EPIS) framework. Heal Res Policy Syst. 2021 Dec 1;19(1).
Niyibizi JB, Okop KJ, Nganabashaka JP, Umwali G, Rulisa S, Ntawuyirushintege S, et al. Perceived cardiovascular disease risk and tailored communication strategies among rural and urban community dwellers in Rwanda: a qualitative study. BMC Public Health. 2022;22(1):1–14.
Okop, Kufre, Murphy, Catherine Estelle Lambert, Victoria, Bunn, Christopher, Kedir, Kiya Getachew, Hailemichael, Howe, Rawleigh, Crampin, Mia, Kasenda, Stephen, Levitt N. Empowering sub-Saharan African communities to learn about cardiovascular disease, risk perception and communication, and to develop strategies for cardiovascular disease prevention: A citizen science and public engagement approach. In: International Journal of Behavioral Medicine. New York, NY, United States: Springer.; 2021. p. S168–S168.
Implementing a mobile app for field global health research: Successes, challenges, and future directions. J Investig Med. 2019;67(1):195.
Niyibizi JB, Nganabashaka JP, Ntawuyirushintege S, Tumusiime D, Umwali G, Rulisa S, et al. Using Citizen Science Within an Integrated Knowledge Translation (IKT) Approach to Explore Cardiovascular Disease Risk Perception in Rwanda. Front Trop Dis. 2021 Oct 13 [cited 2022 Mar 1];2(752357):1–11. A
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.
Kedir K, Mesfin F, Getachew H, Hailu B, Geremew B, Levitt N, et al. P61 High rates of health clinic attendance following identification of high cardiovascular disease risk using a health extension worker mediated community screening pilot study in Ethiopia. J Epidemiol Community Heal. 2022 Aug 1 [cited 2023 Jul 1];76(Suppl 1):A73–4.
Niyibizi JB, Ntawuyirushintege S, Nganabashaka JP, Umwali G, Tumusiime D, Ntaganda E, et al. Community Health Worker-Led Cardiovascular Disease Risk Screening and Referral for Care and Further Management in Rural and Urban Communities in Rwanda. Int J Environ Res Public Health. 2023 May 1 [cited 2023 Jun 20];20(9).
Tembo D, Hickey G, Montenegro C, Chandler D, Nelson E, Porter K, et al. Effective engagement and involvement with community stakeholders in the co-production of global health research. BMJ. 2021;372:1–6.
Wood GER, Pykett J, Banchoff A, King AC, Stathi A. Employing citizen science to enhance active and healthy ageing in urban environments. Heal Place. 2023;79(102954):1–9.
Leask C, Sandlund M, Skelton D, Altenburg T, Cardon G, Chin A Paw M, et al. Principles and recommendations for the application and reporting of participatory methodologies in the development and evaluation of public health interventions. Res Involv Engagem. 2019;5(2):1–16.
Aanensen DM, Huntley DM, Feil EJ, Al-Own F, Spratt BG. EpiCollect: Linking smartphones to web applications for epidemiology, ecology and community data collection. PLoS One. 2009 Sep 16;4(9).

No competing interests reported.

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

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Project implementation and adaptations

Data preparation and analysis

RESULTS

Project outputs and outcomes

Co-designing and integrated knowledge translation

Perceived risk factors for cardiovascular diseases (photo-voices)

i) Substance abuse and crime:

ii) Food-related factors:

iii) Poverty, crime and violence:

iii) Litter (poor sanitation and hygiene):

Perceived positive factors for cardiovascular health

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Identified barriers, and prioritized CVD prevention strategies and actions

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Perceived CVD causes and mitigating factors by setting

Citizen Scientists facilitated collaboration, co-learning and co-creation

Collaborative prioritization and implementation of locally-relevant solutions

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