Representative CABs

Research will be more responsive to community needs if CAB membership is representative.

Good research is relevant and acceptable to the community where it is conducted, and CE mechanisms – like CABs – are an effective way to ensure researchers hear and understand the views of the local community and those affected by the research. However, this will only be true when CAB membership is representative of the community where a study takes place. CAB members should therefore be drawn from and chosen by the community they represent. 

At all but one site (where a CAB already existed before STREAM began), STREAM supported the establishment of representative CABs through the following process. The trial’s CE Technical Advisor/Coordinator worked with the trial site to identify (or “map”) community-based organizations, faith-based organizations, NGOs, patient support groups, activists, advocates, government officials/offices, and other civil society and government organizations that were likely to be key stakeholders in the trial’s CE activities. The initial stakeholder mapping was completed in-person at STREAM research sites. Once a preliminary list of stakeholders was developed, the trial’s CE Advisor often held one-on-one meetings with pivotal potential CAB members to confirm the output from the initial mapping exercise.

Since the CAB is multidisciplinary and diverse, the CAB was the eyes and ears of the community.

STREAM CAB Member

A workshop for potential CAB members was then held, with the goal of establishing a representative CAB with members chosen from the workshop participants. These workshops were designed to be inclusive (often involving 50+ participants) and participant-led in the local language to enhance the CAB’s legitimacy within the community. Following the workshop, a final stakeholder meeting was held to introduce the CAB to the research team and other key stakeholders with the aim of ensuring the CAB was recognized as a legitimate participant in the STREAM research process.

In general, the STREAM process was very effective to ensure representative STREAM CABs at inception. However, ensuring CABs remain representative throughout the trial requires active intervention. CAB members are volunteers, and competing personal and professional priorities can lead to turnover. In addition, in comparison to HIV, a TB survivor may become less engaged in the CAB over time because TB (and TB treatment) are not lifelong.

Recommended best practices

Invest the time and resources to ensure CABs are and remain representative through the following measures:

  • When forming a new CAB, systematically map stakeholders to ensure CAB make up is representative of the community, legitimate and supported by its constituency

  • Ensure formation of a CAB takes place through a community-led process

  • Encourage CABs to review membership on an annual basis and to fill membership gaps from key community stakeholders