Community engagement (CE) is an ethical obligation and an integral part of TB research. It can improve trial implementation and participant outcomes by building a relationship of trust between affected communities and trial implementers. It also allows affected communities to participate in all stages of the research cycle – from setting the research agenda through to evidence-based policy change based on research results.
STREAM Community Engagement
CE is an important part of the STREAM trial, which is being implemented by STREAM Community Advisory Boards (CABs) at all 13 STREAM sites. The STREAM CABs play an important role in raising awareness of TB and the trial, and make complex information accessible to affected communities. They also provide psychosocial support to trial participants and family members, which can help improve retention and adherence rates. Finally, they act as a critical feedback link between affected communities and trial staff, sharing community views on key implementation issues.
Dr Ezio Tavora Dos Santos Filho, the Global STREAM Community Engagement Coordinator from REDE–TB, emphasizes that community engagement is a “mechanism of accountability” to ensure trials and study teams are held accountable to governments, donors, and above all, trial participants.
STREAM is committed to building sustainable CE institutions and supporting CAB activities. As of December 2019, STREAM CAB members completed more than 115 trainings about TB, TB research and community engagement. These training sessions enable CE participants to deliver accurate information about TB and the STREAM trial, and equip them to participate in the research cycle. STREAM CABs also had held more than 633 meetings to plan their activities and provide feedback on the trial to the study team, as well as 333 outreach events with affected community members. STREAM outreach activities play an important role in raising awareness about TB, research and STREAM, and provide a venue for TB screening. STREAM CABs are also increasing their participation in the national and international policy-making process, helping to ensure the views of those most affected by TB are considered by decision makers. In the upcoming year, STREAM CABs will be very focused on planning for sustainability to ensure their impact can continue beyond STREAM.