Carmen Radecki Breitkopf1, Karen Patricia Williams2,3, Jennifer L Ridgeway4, Monica W Parker3,5, Alice Strong-Simmons3, Sharonne N Hayes6, Michele Y Halyard3,7. 1. 1 Department of Health Sciences Research, Mayo Clinic , Rochester, Minnesota. 2. 2 College of Nursing, The Ohio State University , Columbus, Ohio. 3. 3 The Links, Incorporated, Washington, Distict of Columbia. 4. 4 Kern Center for the Science of Health Care Delivery, Mayo Clinic , Rochester, Minnesota. 5. 5 Department of Neurology, Emory University , Atlanta, Georgia . 6. 6 Department of Medicine, Division of Cardiovascular Diseases, Mayo Clinic , Rochester, Minnesota. 7. 7 Department of Radiation Oncology, Mayo Clinic , Scottsdale, Arizona.
Abstract
BACKGROUND: Underrepresentation of African American women as research participants contributes to health disparities. Contemporary studies have focused on clinical trial (CT) participation; epidemiologic and genetic studies utilizing medical records and/or biological samples have received less attention. In partnership with The Links, Incorporated (The Links), a national service organization of professional African American women, this study sought to examine attitudes regarding chart review (CR) studies, genetic studies/biobanking (GEN), and CTs; develop; and evaluate an online education-to-action program. METHODS: In phase 1, focus groups were convened with members of The Links to inform the content and format of the program. Phases 2 and 3 involved designing and evaluating the program, respectively. RESULTS: Thirty-four women across three focus groups shared attitudes and perceptions regarding research and provided guidance for program development. Subsequently, 244 women completed the program (77% response rate), including pre- and post-assessments. Participants indicating that they "definitely" or "probably" (responses combined) intend to participate in research increased from 36.5% to 69.3% (pre/post-program). Agreement with the statement "research in the U.S. is ethical" increased (52.9% to 74.4%) as did factual knowledge regarding each of the study types. There was a decrease in reporting "little or no understanding" of study types (Pre/Post: GEN: 66%/24.9%, CR: 62.9%/18.4%, CTs: 40.7%/15.5%). Pre-program, few were "very positive" about the study types (14.3% GEN, 15.0% CR, 28.6% CTs); post-program ratings increased and equalized (42.8% GEN, 43.0% CR, 42.5% CTs). CONCLUSIONS: An online education-to-action program targeting professional African American women improved knowledge, perceptions of ethics, and intent to participate in biomedical research.
BACKGROUND: Underrepresentation of African American women as research participants contributes to health disparities. Contemporary studies have focused on clinical trial (CT) participation; epidemiologic and genetic studies utilizing medical records and/or biological samples have received less attention. In partnership with The Links, Incorporated (The Links), a national service organization of professional African American women, this study sought to examine attitudes regarding chart review (CR) studies, genetic studies/biobanking (GEN), and CTs; develop; and evaluate an online education-to-action program. METHODS: In phase 1, focus groups were convened with members of The Links to inform the content and format of the program. Phases 2 and 3 involved designing and evaluating the program, respectively. RESULTS: Thirty-four women across three focus groups shared attitudes and perceptions regarding research and provided guidance for program development. Subsequently, 244 women completed the program (77% response rate), including pre- and post-assessments. Participants indicating that they "definitely" or "probably" (responses combined) intend to participate in research increased from 36.5% to 69.3% (pre/post-program). Agreement with the statement "research in the U.S. is ethical" increased (52.9% to 74.4%) as did factual knowledge regarding each of the study types. There was a decrease in reporting "little or no understanding" of study types (Pre/Post: GEN: 66%/24.9%, CR: 62.9%/18.4%, CTs: 40.7%/15.5%). Pre-program, few were "very positive" about the study types (14.3% GEN, 15.0% CR, 28.6% CTs); post-program ratings increased and equalized (42.8% GEN, 43.0% CR, 42.5% CTs). CONCLUSIONS: An online education-to-action program targeting professional African American women improved knowledge, perceptions of ethics, and intent to participate in biomedical research.
Entities:
Keywords:
African Americans; clinical trials; ethics; genetic research; research participation
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