Members of the ELF Community Advisory Group (CAG) attended the UNITE4TB Annual Meeting which brought together researchers, clinicians and community representatives to discuss progress in tuberculosis (TB) research and future clinical trials.
The CAG brings together representatives of the TB community to ensure that community perspectives are included in research and clinical trial design. At the meeting, Patrick Agbassi, Stephan Dressler, Blessina Kumar and Paul Sommerfeld from the CAG, contributed the perspectives of the TB community to discussions on how studies are designed and delivered, helping ensure they remain relevant and grounded in the realities of people affected by TB.
Current TB treatment can be long and difficult, often requiring people to take multiple medicines over several months. Discussions at the meeting focused on developing treatments that are shorter, safer and more effective, with the aim of improving outcomes and reducing the burden of disease.
Input from the CAG highlighted the importance of designing studies that work for people in real life. This includes clear communication, practical arrangements for appointments and follow-up and consideration of the everyday demands placed on people taking part in clinical trials.
A dedicated session explored community experience in TB clinical trials across different sites. It explored how early engagement with communities can improve how studies are delivered and experienced by participants.
CAG member Paul Sommerfeld chaired the session, with Patrick Agbassi, also a CAG member, contributing as a panellist. Trial site investigators at different stages of the trial process shared examples of how working closely with trial participants and local communities has helped strengthen communication and improve the practical delivery of studies. For example, current and former trial participants can act as peer educators, helping to reassure and embed trust in potential future participants.
Key takeaways from the session included the importance of embedding community engagement from the start of a trial, including a dedicated budget for engagement activities and ensuring strong communication between participants and researchers.
The inclusion of teenagers and young people in future TB research was an important topic of discussion during the meeting.
A Joint Advisory Board session involving scientific, ethical and community representatives explored why young people had not been included in current UNITE4TB clinical trials and what could be done to support their involvement in future studies.
Blessina Kumar, on behalf of the CAG, highlighted that teenagers and young people represent a large part of the population affected by TB and that future treatments must reflect their needs and circumstances.
Practical issues such as consent processes and balancing trial participation with school and family life were also discussed.
The meeting concluded with discussions on future directions for TB research and the importance of continuing to involve people affected by TB in shaping study design and delivery.
For the CAG, the meeting reinforced the value of participant and community involvement in ensuring that TB research remains relevant to those most affected by the disease and supports the development of better treatments in the future.
Blessina Kumar commented on her experience:
“The UNITE4TB Annual Meeting was successful, we were heard, our views and perspectives respected. CAG made a strong case for inclusion of children and adolescents in the trials. The Annual Meeting also provided an opportunity learning and sharing, we appreciate the opportunity to hear from the trial site PIs. We look forward to interacting with the local Community Advisory Boards across the trial sites in the next few months.”
Learn more about UNITE4TB: https://www.unite4tb.org/
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