The Community Research Advisors Group (CRAG) is an international, community-based advisory body that works to ensure the meaningful participation and engagement of affected communities in research conducted by the U.S. Centers for Disease Control and Prevention’s (CDC’s) Tuberculosis Trials Consortium (TBTC). This group of research-literate advocates supports a robust and innovative TBTC research agenda that reflects both community needs and scientific priorities. TAG coordinates the CRAG and supports CRAG members as they engage in advocacy at a number of levels—among TB-affected communities, individual TBTC trial sites, the TBTC consortium, and national and international policy makers—and work to raise awareness of TB and TB research in their communities. CRAG members actively participate in TBTC working groups and advise TBTC researchers on protocol development, informed consent administration, community research priorities, and dissemination of study findings back to communities.
Recent accomplishments of CRAG members include:
- The CRAG, together with the U.S. CDC Department of TB Elimination, has developed a monitoring and evaluation (M&E) framework to measure the impact of CRAG member activities. This is one of the first M&E systems designed to capture the social and scientific value of community engagement in TB clinical research. These simple M&E tools will be available online to other interested research consortia soon.
- CRAG co-chair Laia Ruiz Mingote and TAG’s Erica Lessem coauthored an article, “Engaging Communities in Tuberculosis Research,” published in Lancet Infectious Diseases.
- CRAG co-chair Dorothy Namutamba published an article on TB research in New Vision, Uganda’s leading daily newspaper. Dorothy also organized the first TB community advisory board (CAB) at her TBTC site in Kampala, Uganda. Her work establishing the CAB was profiled in TB Notes, a publication of the U.S. CDC’s Department of Tuberculosis Elimination. [TB Notes forthcoming]
- Natalie Nelson Skipper, a survivor of multidrug-resistant TB, was profiled in Exposed: The Race Against Tuberculosis, a film series on TB research and development produced by the TB vaccine developer Aeras. Natalie also published an article about her four-year treatment experience in the Huffington Post. In the past year, she has shared her story with audiences including the TBTC, the National Tuberculosis Controllers Association, and state and national congress members.
- Barbara Seaworth organized a 5K Fun Walk/Run on World TB Day, March 24, 2013, in San Antonio, Texas. She presented a poster about the event at the National Tuberculosis Controllers Association annual meeting, where it won first prize. A practicing TB clinician, Barbara also initiated a PhotoVoice project among TB patients at her hospital so that they can visually document their lives while on TB treatment.
- Carmen Contreras and her colleagues at Socios en Salud (Partners In Health’s sister organization in Peru) founded the first TB CAB in Lima, Peru. The CAB was inaugurated on March 23, 2013, and includes 11 members selected from a large pool of applicants.
- Francis Apina observed World TB Day 2013 in Washington, D.C., where he conducted advocacy to support TB programming and research with U.S. congressional representatives as part of a delegation organized by USAID.
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