Dr Jane Rahedi Ong’ang’o
Community Engagement Coordinator
Kenya Medical Research Institute (KEMRI), Nairobi, Kenya
In January 2010, the Phase III REMox TB clinical trial was initiated at Kibera Health Centre in Nairobi. To enhance enrollment of study participants and sustain their follow-up in the trial, Community Engagement (CE) activities were linked to the research study. A Community Advisory Board (CAB) was created with 20 representatives of various community stakeholders including religious leaders, local civil society leaders, youth representatives, women representatives, a study participant representative, a health worker of the community, and the district TB coordinator. The main purpose of the CAB was to facilitate dialogue between community members, study volunteers and researchers. This was achieved by the CAB actively being involved in the:
- dissemination of study information and voicing of community concerns
- participation in the implementation of recruitment and retention strategies for study participants
- discussion and management of public expectations regarding the study
- assessment of TB drug research knowledge using a research literacy tool kit
Enrollment in REMox TB has been completed, but research will continue until the final patients have completed treatment. This experience has helped build a partnership between the research team and the relevant community stakeholders. Through Community Engagement, community has gained a greater understanding of the value and process of scientific research. Research literacy among community members exposed to educational efforts has increased dramatically.
Retention of study participants at our site reached greater than 95%, an accomplishment due in part to community involvement in the trial and associated issues regarding TB. Most importantly of all, the clinical trial has empowered the community in the research process and educated them about TB disease. The community hopes that the outcome of this research will help future diagnosed TB patients too by simplifying treatment. In the long term, the community hopes that this trial will help make possible additional advances in treatment for TB and drug-resistant TB.
The REMox TB researchers learned valuable lessons in the process as well, including the importance of community involvement in research, especially for retention of study participants during follow-up, and the value that a community stakeholder has in advocating for such research to their local policy makers.
Today, the REMox TB researchers and the community members share the opinion that community involvement in population-based research is essential.