Abstract A26: Developing a network of community research councils to promote and facilitate clinical prevention trial participation in medically underserved populations
Authors: Ashley-Gordon Atalie , Sneed Kevin , Baldwin Julie , Standifer Maisha Kambon 
Published: June 2012

If we are to statistically represent the US population (CIA World Factbook), approximately 20% of all clinical trial participants should be composed of racial and ethnic minorities. However, it is a well documented public health concern that minority participation in clinical trials is minimal at best, namely among cancer trials. The American Cancer Society expects 1.6 million persons to be diagnosed with cancer in 2011 (Cancer Facts and Figures 2011, 1) and in order to develop and evaluate sustainable treatments, clinical trials are a necessity. It is estimated that 3–5 percent of eligible cancer patients will participate in clinical trials (Gotay, C.C., 569). Less than one percent will represent a racial or ethnic minority (npr.org). The purpose of this study is to determine whether or not a Community Research Council can increase minority participation in clinical trials.

The Center for Equal Health, a partnership between the University of South Florida, H. Lee Moffitt Cancer Center, and the Tampa Bay Community is committed to increasing minority participation in clinical trials for the purpose of enhancing the current treatment options and research surrounding ailments that directly affect minority communities. The Community Research Council (CRC) was established to advocate for and oversee clinical and translational research activities in the Tampa Bay region. Synthesized by examining examples from several Tribal Nations, this governing body serves to: 1) Strengthen the relationship of the research institutions with the community; 2) Provide oversight, protection, and advocacy of community participants involved in clinical and translational research activities performed by academic and clinical institutions; 3) Create and enhance clinical trial opportunities for underrepresented communities; 4) Empower underrepresented communities with decision-making opportunities concerning research activities that involve their members; and 5) Enhance and expand trust between academic and clinical institutions and the communities that they serve. Within 12 months of formation, the council will expand into at least one other geographical area to build upon existing relationships with other research institutions (i.e., Florida A&M University). This will lead to the development of Minority Clinical Research Networks (MCRN) that will serve as the link between the CRC, clinical practitioners, members of the community, research institutions, and pharmaceutical companies.

Long term goals of the CRC include lobbying pharmaceutical companies and private investors to provide more clinical research opportunities in the defined region (i.e., the Florida Counties of Hillsborough, Pasco, and Pinellas). Once clinical trials are created or identified in the region, we will develop a plan to monitor minority participation in these trials over time. We expect to see self-reported increases in clinical research knowledge within one year of CRC implementation in the region. We believe that when clinical practitioners, research institutions, members of the community, and pharmaceutical companies are provided with a central organization that provides education, ethical guidelines, and an opportunity for networking, the long term result will be an increase in minority participation in clinical trials.

Citation Information: Cancer Epidemiol Biomarkers Prev 2011;20(10 Suppl):A26.