Stroke Investigative Research and Education Network: Public Outreach and Engagement.

Singh A,Jenkins C,Ovbiagele B,Sarfo S,Uvere E,Calys Tagoe B,Melikam S,Mayowa O,Arulogun Os,Akpalu A

doi:10.4172/2161-0711.1000518

Abstract

Stroke is becoming a leading cause of disability and death, and a major public health concern in Sub-Saharan Africa (SSA). The Stroke Investigative Research and Education Network (SIREN) seeks to comprehensively characterize the genomic, sociocultural, economic, and behavioral risk factors for stroke and to build effective teams for research to address and decrease the burden of stroke and other non-communicable diseases in SSA. One of the first steps to address this goal was to effectively engage the communities that suffer high burdens of disease in SSA. This paper describes the process of SIREN project's community engagement activities in Ghana and Nigeria. The aims of community engagement (CE) within SIREN are to: i) elucidate information about knowledge, attitudes, beliefs, and practices (KABP) about stroke and its risk factors from individuals of African ancestry in SSA; ii) educate the community about stroke and ways to decrease disabilities and deaths from stroke; and iii) recruit 3000 control research subjects to participate in a case-control stroke study. CE focused on three-pronged activities-constitution and interaction with Community Advisory Board (CABs), Focus Group Discussions (n=27) and community education and outreach programs (n=88). FGDs and outreach programs indicate that knowledge of stroke, as well as risk factors and follow-up evidence-based care is limited and often late. Almost all indicated that genetic testing could help health provider’s better treat stroke and help scientists better understand the causes of stroke. Over 7000 individuals have received education on cardiovascular risk factors and about 5,000 have been screened for cardiovascular risk factors during the outreaches. The CE core within SIREN is a first of its kind public outreach engagement initiative to evaluate and address perceptions about stroke and genomics by patients, caregivers, and local leaders in SSA and has implications as a model for assessment in other high stroke risk populations.

Highlights

Over 80% of stroke deaths occur in all Low and middle income countries (LMICs) including in Sub Saharan Africa [1]
Guided by two main principles: Principles of Community Engagement for the Human Heredity and Health in Africa initiative (H3Africa) [9] and Principles of Community Engagement for National Institute of Health (NIH) [10], the community engagement (CE) component of Stroke Investigative Research and Education Network (SIREN) focused on the development and implementation of a Community Advisory Board (CAB), an exploration of the knowledge, attitudes and practices related to stroke, stroke risk factors, genetic testing, public outreach and engagement and dissemination of the results to relevant authorities and community members
We considered the CAB linkages to the community including their representation, technical expertise, leadership and cultural insight that each member brings to the CAB and to assure that most segments of the population are represented

Summary

Introduction

Over 80% of stroke deaths occur in all Low and middle income countries (LMICs) including in Sub Saharan Africa [1]. Guided by two main principles: Principles of Community Engagement for the Human Heredity and Health in Africa initiative (H3Africa) [9] and Principles of Community Engagement for National Institute of Health (NIH) [10], the CE component of SIREN focused on the development and implementation of a Community Advisory Board (CAB), an exploration of the knowledge, attitudes and practices related to stroke, stroke risk factors, genetic testing, public outreach and engagement and dissemination of the results to relevant authorities and community members This CE core within SIREN is a novel kind of public outreach engagement initiative to evaluate and address perceptions about stroke and genomics by patients, caregivers, and local leaders (as well as health professionals) in SSA. This article describes how the SIREN project engaged eight sites in Ghana and Nigeria over the past three years (2014–2016), describing the community engagement activities that have arisen since inception

Objectives of the CE process

Findings

Conclusion