Community engagement in Genomics research; Challenges and lessons learnt in the AWI-Gen study at Dikgale Health and Demographic Surveillance System (HDSS) Site, South Africa

Abstract

As health research often requires consent from participants and permission from community gate keepers, community engagement is considered an integral process of health research. Community engagement is also important in building trust between the research team and participants, gathering information on the needs and expectations of the community with respect to the project and present the community with an opportunity to gain more information on the goals of the research. Although there are published guidelines on how to conduct community engagement activities, the concept itself and the way in which it is put into practice is highly contextual. In this paper we reflect on the community engagement strategy used in the AWI-Gen Phase 1 study at the Dikgale Health and Demographic Surveillance System (Dikgale HDSS) site, the challenges encountered throughout the research process and the lessons learnt. Lastly, we highlight possible improvements to the CE strategic framework for AWI-Gen Phase 2 in Dikgale HDSS that may enhance the participation of the community.