Williams, Karen Patricia

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.

Abstract Addressing underrepresentation of minorities and women as research participants has largely focused on clinical trials, while little is known about attitudes and knowledge regarding other types of biomedical research, e.g., epidemiologic and genetic studies. These types of studies are essential for advances in cancer research, including development of targeted therapies for women and minorities. As part of an academic/community partnership between Mayo Clinic and The Links, Incorporated, a national volunteer service organization of professional African American women, this study sought to: (1) examine attitudes regarding participation in research involving access to the medical record, genetic studies/biobanking, and clinical trials; and (2) develop and evaluate a novel, targeted online educational program addressing these 3 types of biomedical research. Initial qualitative inquiry via 3 focus groups (n=34) found that most women associated health-related research with clinical trials; few women were familiar with other study types. Women expressed more concerns about how information is collected, used, and shared by investigators than with personal mistreatment in research regardless of study type (genetic research (GEN), chart review (CR), clinical trial (CT)) or the kind of information (social, health, genetic) collected. The importance of investigator transparency regarding the significance of the disease in African Americans, research funding source, the investigator’s agenda, and commitment to the population being studied was emphasized. Qualitative results informed development of the educational program. A total of 244 Links members completed the program (77% response rate) and answered pre- and post-assessments of intentions, attitudes and knowledge. The percent of women indicating that they “definitely” or “probably” intend to participate in research increased from 9.4% to 19.5% and 27.1% to 49.8%, respectively, after program completion. Agreement with the statement “research in the U.S. is ethical” increased from 52.9% to 74.4%. Factual knowledge related to each of the 3 study types also increased. Prior to completing the program many women reported “little or no understanding” of the 3 types of studies (66% GEN, 62.9% CR, 40.7% CT) whereas after program completion, these numbers decreased to 24.9%, 18.4%, and 15.5%, respectively. While few women rated their opinion of the study types as “very positive” prior to beginning the program (14.3% GEN, 15.0% CR, 28.6% CT), upon completion these proportions increased and equalized (42.8% GEN, 43.0% CR, 42.5% CT). Two-month follow-up will evaluate longer-term impact including knowledge dissemination, visiting clinicaltrials.gov, and enrolling in ResearchMatch. An online education-to-action program targeting professional African American women improved knowledge, perceptions of research ethics, and intent to participate in biomedical research. Citation Format: Carmen Radecki Breitkopf, Karen P. Williams, Jennifer L. Ridgeway, Alice L. Strong Simmons, Monica W. Parker, Michele Y. Halyard, Sharonne N. Hayes. Linking education to action: A program to increase research participation among African American women [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2017; 2017 Apr 1-5; Washington, DC. Philadelphia (PA): AACR; Cancer Res 2017;77(13 Suppl):Abstract nr 4233. doi:10.1158/1538-7445.AM2017-4233