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

doi:10.1186/s40900-020-00246-x

. 2021 Feb 26;7(1):11.

doi: 10.1186/s40900-020-00246-x.

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

Kufre Joseph Okop^{1

2}, Kathy Murphy³, Estelle Victoria Lambert⁴, Kiya Kedir⁵, Hailemichael Getachew⁵, Rawleigh Howe⁵, Jean Berchmans Niyibizi⁶, Selemani Ntawuyirushintege⁶, Charlotte Bavuma⁷, Stephen Rulisa⁷, Stephen Kasenda⁷, Effie Chipeta^{8

9}, Christopher Bunn^{8

10}, Amelia C Crampin⁸, Gertrude Chapotera¹¹, Abby C King^{12

13}, Ann Banchoff¹³, Sandra J Winter¹³, Naomi S Levitt³

Affiliations

¹ Chronic Disease Initiative for Africa, Department of Medicine, University of Cape Town, Cape Town, South Africa. kufreokop@gmail.com.
² Centre for Social Science Research, University of Cape Town, Cape Town, South Africa. kufreokop@gmail.com.
³ Chronic Disease Initiative for Africa, Department of Medicine, University of Cape Town, Cape Town, South Africa.
⁴ UCT Research Centre for Health through Physical Activity, Lifestyle and Sport, Division of Exercise Science and Sports Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
⁵ Armauer Hansen Research Institute (AHRI), Addis Ababa, Ethiopia.
⁶ Single Project Implementation Unit, University of Rwanda, Kigali, Rwanda.
⁷ School of Medicine and Pharmacy, College of Medicine and Health Sciences, University of Rwanda, Kigali, Rwanda.
⁸ Malawi Epidemiology and Intervention Research Unit, Lilongwe, Malawi.
⁹ Centre for Reproductive Health, College of Medicine, University of Malawi, Blantyre, Malawi.
¹⁰ College of Social Sciences, University of Glasgow, Glasgow, UK.
¹¹ School of Public Health and Family Medicine, College of Medicine, University of Malawi, Zomba, Malawi.
¹² Department of Epidemiology and Population Health, Stanford University School of Medicine, Stanford, CA, USA.
¹³ Stanford Prevention Research Center, Stanford University School of Medicine, Stanford, CA, USA.

PMID: 33637131
PMCID: PMC7907793
DOI: 10.1186/s40900-020-00246-x

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

Kufre Joseph Okop et al. Res Involv Engagem. 2021.

. 2021 Feb 26;7(1):11.

doi: 10.1186/s40900-020-00246-x.

Authors

Affiliations

¹ Chronic Disease Initiative for Africa, Department of Medicine, University of Cape Town, Cape Town, South Africa. kufreokop@gmail.com.
² Centre for Social Science Research, University of Cape Town, Cape Town, South Africa. kufreokop@gmail.com.
³ Chronic Disease Initiative for Africa, Department of Medicine, University of Cape Town, Cape Town, South Africa.
⁴ UCT Research Centre for Health through Physical Activity, Lifestyle and Sport, Division of Exercise Science and Sports Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
⁵ Armauer Hansen Research Institute (AHRI), Addis Ababa, Ethiopia.
⁶ Single Project Implementation Unit, University of Rwanda, Kigali, Rwanda.
⁷ School of Medicine and Pharmacy, College of Medicine and Health Sciences, University of Rwanda, Kigali, Rwanda.
⁸ Malawi Epidemiology and Intervention Research Unit, Lilongwe, Malawi.
⁹ Centre for Reproductive Health, College of Medicine, University of Malawi, Blantyre, Malawi.
¹⁰ College of Social Sciences, University of Glasgow, Glasgow, UK.
¹¹ School of Public Health and Family Medicine, College of Medicine, University of Malawi, Zomba, Malawi.
¹² Department of Epidemiology and Population Health, Stanford University School of Medicine, Stanford, CA, USA.
¹³ Stanford Prevention Research Center, Stanford University School of Medicine, Stanford, CA, USA.

PMID: 33637131
PMCID: PMC7907793
DOI: 10.1186/s40900-020-00246-x

Abstract

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.

Keywords: Advocacy; Cardiovascular disease; Citizen science; Community engagement; Community-driven; Participatory learning; Risk perception; Sub-Saharan Africa.

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Conflict of interest statement

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

Figures

**Fig. 1**
Effects of citizen science on health, health governance and knowledge system [19]. Adapted from Den Broeder et al. 2018, page 511

**Fig. 2**
Project design and activity workflow

See this image and copyright information in PMC

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References

1. Yusuf S, Rangarajan S, Teo K, Islam S, Li W, Liu L, et al. Cardiovascular risk and events in 17 low-, middle-, and high-income countries. N Engl J Med. 2014;371(9):818–827. doi: 10.1056/NEJMoa1311890. - DOI - PubMed
1. Keates AK, Mocumbi AO, Ntsekhe M, Sliwa K, Stewart S. Cardiovascular disease in Africa: Epidemiological profile and challenges. Nature Reviews Cardiology. 2017;14:273–293. doi: 10.1038/nrcardio.2017.19. - DOI - PubMed
1. Cooney MT, Cooney HC, Dudina A, Graham IM. Total cardiovascular disease risk assessment: a review. Curr Opin Cardiol [Internet] 2011;26(5):429–437. doi: 10.1097/HCO.0b013e3283499f06. - DOI - PubMed
1. Lim SS, Gaziano TA, Gakidou E, Reddy KS, Farzadfar F, Lozano R, et al. Prevention of cardiovascular disease in high-risk individuals in low-income and middle-income countries: health effects and costs. Lancet. 2007;370(9604):2054–2062. doi: 10.1016/S0140-6736(07)61699-7. - DOI - PubMed
1. 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. doi: 10.1371/journal.pone.0189264. - DOI - PMC - PubMed

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[1] Yusuf S, Rangarajan S, Teo K, Islam S, Li W, Liu L, et al. Cardiovascular risk and events in 17 low-, middle-, and high-income countries. N Engl J Med. 2014;371(9):818–827. doi: 10.1056/NEJMoa1311890. - DOI - PubMed

[2] Yusuf S, Rangarajan S, Teo K, Islam S, Li W, Liu L, et al. Cardiovascular risk and events in 17 low-, middle-, and high-income countries. N Engl J Med. 2014;371(9):818–827. doi: 10.1056/NEJMoa1311890. - DOI - PubMed

[3] Keates AK, Mocumbi AO, Ntsekhe M, Sliwa K, Stewart S. Cardiovascular disease in Africa: Epidemiological profile and challenges. Nature Reviews Cardiology. 2017;14:273–293. doi: 10.1038/nrcardio.2017.19. - DOI - PubMed

[4] Keates AK, Mocumbi AO, Ntsekhe M, Sliwa K, Stewart S. Cardiovascular disease in Africa: Epidemiological profile and challenges. Nature Reviews Cardiology. 2017;14:273–293. doi: 10.1038/nrcardio.2017.19. - DOI - PubMed

[5] Cooney MT, Cooney HC, Dudina A, Graham IM. Total cardiovascular disease risk assessment: a review. Curr Opin Cardiol [Internet] 2011;26(5):429–437. doi: 10.1097/HCO.0b013e3283499f06. - DOI - PubMed

[6] Cooney MT, Cooney HC, Dudina A, Graham IM. Total cardiovascular disease risk assessment: a review. Curr Opin Cardiol [Internet] 2011;26(5):429–437. doi: 10.1097/HCO.0b013e3283499f06. - DOI - PubMed

[7] Lim SS, Gaziano TA, Gakidou E, Reddy KS, Farzadfar F, Lozano R, et al. Prevention of cardiovascular disease in high-risk individuals in low-income and middle-income countries: health effects and costs. Lancet. 2007;370(9604):2054–2062. doi: 10.1016/S0140-6736(07)61699-7. - DOI - PubMed

[8] Lim SS, Gaziano TA, Gakidou E, Reddy KS, Farzadfar F, Lozano R, et al. Prevention of cardiovascular disease in high-risk individuals in low-income and middle-income countries: health effects and costs. Lancet. 2007;370(9604):2054–2062. doi: 10.1016/S0140-6736(07)61699-7. - DOI - PubMed

[9] 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. doi: 10.1371/journal.pone.0189264. - DOI - PMC - PubMed

[10] 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. doi: 10.1371/journal.pone.0189264. - DOI - PMC - PubMed

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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

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