The 5th Annual Community Engagement (CE) Forum took place September 15-18, 2014 in Johannesburg, South Africa. This cross-site engagement opportunity brings together individuals working with communities at clinical trial sites for learning, information exchange, and feedback to the TB Alliance and its partners.
This year’s event was exceptional, both in terms of attendance (given the growing number of sites involved in CE) as well as the content over the four-day event. Karl Hofmann, the President of the TB Alliance’s Stakeholders Association and the CEO of PSI, framed the importance of CE to future research efforts when he said, “The TB Alliance has an unprecedented number of clinical trials moving forward, but cannot complete them without your work.”
For participants, the Forum focused on communication objectives and strategies for sharing clinical trial results with their local constituents, as well as strategies to engage community members in new and upcoming clinical trials. The meeting was organized into different modules and included robust discussion and cross-learning opportunities to allow site-level CE coordinators to improve upon their strategies. Joanna Breitstein, Senior Director of Communications, conducted a communications and media training for participants to provide a framework for sharing trial results, as well as specific tools and language to help CE Coordinators execute their communications plans.
Willo Brock, Senior Vice President of External Affairs, also encouraged sites to work with the TB Alliance and one another to facilitate learning and scale-up of efforts.
The last two days of the workshop were devoted to training on a new monitoring and evaluation tools to help site-level teams measure the impact of the work they are doing. These tools will be critical in quantifying the impact of CE on the conduct of clinical trials and further instituting it as part of best practice for TB research and development. The CE Forum participants requested that, when future trials are completed and the results of this tool quantify the contribution of CE, that it be included as part of the methodology of future scientific papers.
Many thanks to the Community Advisory Board (CAB) of Alexandra, South Africa for hosting the TB Alliance and its guests for a full-day meeting prior to the CE Forum, which gave the organization a chance to understand the key issues facing the CAB and the local-level structures. It was particularly interesting to see how the CAB worked closely with traditional healers and other segments of the community to design strategies to involve a broad number of stakeholders in TB education and treatment. Special thanks to “Flash,” the DJ at local radio station AlexFM for leading the day’s events and also for facilitating an on-air radio segment dedicated to TB.
Stephanie Seidel, Program Manager of Community Engagement, expressed her appreciation for the tremendous progress and contribution of CE coordinators. “We want to thank everyone for their time and engagement in the CE Forum, but perhaps more importantly, their daily dedication to improving the lives of people with TB everywhere.”