Last month, STREAM Community Advisory Boards (CABs) from across Africa, Asia, and Europe joined REDE-TB, SMIT and Vital Strategies to explore how CABs can best support trial participants. The webinar was a great venue for STREAM CABs to continue defining their role in clinical trials and showcase the important role they are already playing.
Dr. Ezio Tavora began the webinar by presenting a summary of evidence regarding the positive impact that CAB member support can have. Each CAB was then invited to outline the support they provide to trial participants. CAB support ranges from economic, to spiritual, to psychosocial, to educational – all with the aim of ensuring trial participants have everything they need to complete their difficult treatment. Vicky Chili, Durban STREAM CAB member summarized her view of the CAB’s role as follows: “CAB members should primarily be study participants’ advocates; act as liaison between researchers and participants; provide information about the trial; and ensure that participants understand the trial process.”
A particularly thorny issue discussed by participants was whether and how CABs should provide psychosocial support to trial participants. Dr. Francesca Conradie presented the results of a small internal survey indicating that STREAM study team members and CAB members alike believe the benefits of CAB member-trial participant psychosocial support outweigh the risks. However, a small number of sites reported CAB member-trial participant psychosocial support is not occurring at their sites, primarily due to overriding concerns about patient confidentiality and the risk that technical information of MDR-TB and/or the trial might be miscommunicated by CAB members. It was agreed that this is an excellent area for CAB member/study team collaboration in order to develop a model for peer-to-peer support that addresses the concerns identified.
The Mongolian CAB discussed their experience with patient and family support meetings as an excellent model for supporting trial participants. Those meetings, which started in 2015, help to educate participants and close family members through discussions about TB and MDR-TB, the STREAM trial, former patient experiences, and spiritual healing or meditation. There have been more than 20 patient and family support meetings at the Mongolian site since 2015, helping to foster close connections between CAB members and trial participants and encouraging participants to complete their treatment.
Additionally, Sister Mary Josephinal Francis, CAB Coordinator for the NIRT CAB, discussed the importance of empathy. In her words, the CAB must “[l]ook at the world with the eyes and the heart of the trial participant.”
Sister Mary went on to discuss the three aspects of a CAB’s duty to trial participants. The CAB’s first role is to act as the “voice of the participants,” as well as a “mechanism of accountability.” The CAB’s second role is to improve understanding of tuberculosis for trial participants. Their third role is as advocates on the behalf of patients.
These are just a few examples of the many ways the STREAM CABs are continuously supporting trial participants. The CABs will continue to share experiences and work to better-define their roles and responsibilities through the ongoing all-CAB webinar series started earlier this year.
To read more about the STREAM CABs, please click here.