Earlier this year, members of the Community Advisory Board (CAB) for the STREAM Stage 2 site at the Makerere University Lung Institute in Kampala, took part in a radio show which focused on raising awareness about the prevention and treatment of tuberculosis (TB). During the discussion, the CAB members spoke about the importance of community engagement as part of the STREAM Clinical Trial.
CABs play an important role in implementing community engagement and act as a critical link between affected communities and trial staff, sharing community views on key implementation issues. Mary and Kasozi from the Kampala CAB, describe the CAB as a group of community members and organization representatives that provides community information and assistance to the research project, highlighting the needs of the trial participants. Furthermore, the CABs play an important role in dispelling myths surrounding TB and provide much needed information about the prevention, screening and treatment of TB for affected communities.
During the radio show, aired on Akaboozi Kampala FM, the CAB members explained that, in order to raise awareness and tackle issues of stigma, they use diverse approaches and channels to reach as many people as possible. Sometimes radio and television are used, and on occasion, individual home visits are carried out. “We also use community leaders like local council leaders to mobilize community members. We work with the small community health structures like Village Heath Teams and Community Health Extension Workers,” explained Kasozi, a CAB member. The STREAM CABs work collaboratively with the community so that community members are aware of the research that is being conducted and have the opportunity to contribute ideas.
Ivan Kimuli, Community Liaison Officer, talked about the importance of establishing a positive relationship between the CAB and the community in order to gather much needed insight into the affected community and its needs. “You could go to a community to research the effects of regularly eating pineapples, but you may not know that the area has no access to pineapples,” he explained. It is important to know and understand the context in which the trial is being implemented in order to address issues affecting the community that can “make or break” a clinical trial.
During regular meetings, members of the STREAM CAB provide feedback gathered from the community to the study team. The information the CAB gathers is crucially important for the success of the trial, for example, they could alert the research team about drugs that are not being taken by community members due to the size of the tablet, or a related side effect such as abdominal pain. By talking to community members, the CABs are able to understand the challenges faced by participants and convey that information to the trial team.
Some of the Makerere CAB members have first-hand experience of TB, as Mary Mpakibi explained, “I have had multidrug-resistant (MDR-TB) […] My treatment took two years but then I was cured. I am a living example of a TB survivor. TB is curable, even this one that is multi-drug resistant.” By including people with real experience of TB in the CABs, the communities benefit from their experience and are helped by informed support.
To read more about the work of the STREAM CABs, click here.