The Genomics of Schizophrenia in South African Xhosa People (SAX) study sought to identify genes or mutations underlying predisposition to schizophrenia in the South African Xhosa population. Engagement activities included a Community Advisory Board and a Mental Health Literacy Day.
This paper from BMC Medical Ethics explores how researchers and research centres can activtly involve children and young people in health research activities and in the development of research proposals. They used group discussions with community members and schools students in rural Kenya to explore views on the topic.
This study, which took place in the U.S, may be of interest to Mesh readers interested in the power of 'community voice' on decision-making in health policy and research.
Literature: Beginning community engagement at a busy biomedical research programme: Experiences from the KEMRI CGMRC-Wellcome Trust Research Programme (Kilifi, Kenya)by Mesh Editorial Team
An article published in Social Science & Medicine summarising the rationale for community engagement in research. The article draws upon published literature and local findings to outline the process of community engagement in Kilifi, Kenya and to describe issues emerging from its development and early implementation. It also briefly reviews literature on Community Advisory Boards and a range of related ethical, methodological and contextual issues related to developing effective methods for community engagement.