Abstract A005: The development of a bioethically sensitive education video: Addressing the barriers to African Americans’ and Hispanics’ participation in clinical and genomic research through digital animation
Authors: Churchill Victoria , Schoenberger Yu-Mei , Carter Vivian L , Dean-Colomb Windy , Matthews Roland , Rivers Desiree , Sodeke Stephen O , Chevrin Jamirah , Rivers Brian 
Published: December 2023

Introduction: Research advances on effective methods to prevent, diagnose and treat cancer continue to emerge through clinical and genomic research. To ensure the results from these research studies help those who need it most, a diverse population needs to enroll. Despite guidance from authorities, such as the National Institutes of Health, most clinical trial and genomic research participants identify as White. At the participant level, mistrust of research, unawareness of research opportunities and gaps in bioethical knowledge about clinical trials and genomic research remain proven barriers to participating, especially among African Americans (AA) and Hispanics. With the development and access to technology, digital delivery of salient and tailored health education may provide innovative pathways to increase representation of AA and Hispanics in research. Methods: Members from the NCI-funded Partnerships to Advance Cancer Health Equity (PACHE) including experts from the community, healthcare, biomedical research and public health, such as oncologists, cancer geneticists, behavioral scientists and bioethicists collaborated on all phases. A design lab with experience synthesizing complex health messages into brief animations was contracted. The goal was to utilize existing educational resources from the National Cancer Institute and the National Human Genome Research Institute to create a tailored message to address AA's and Hispanics’ beliefs, values and bioethical concerns related to participation in clinical and genomic research. Models of behavior change and communication theories were leveraged to frame key components of the message, which then informed the animated video. Results: Development of the video consisted of six iterative phases: 1) writing sessions; 2) storyboarding; 3) animating; 4) screening/revisions; 5) acceptability testing; 6) finalization. In the last two steps, the video was presented to family members of cancer patients, cancer survivors and community members who provided quantitative and qualitative feedback which informed further edits. The final animated video is approximately five minutes in length and covers several topics including the goal of clinical research, disparities in clinical trials and genomic research participation, genomic research regulations and the purpose of a biobank. Supporting imagery to emphasize specific concepts, such as racial disparities in research, was dispersed throughout the video. A voiceover emphasized key bioethical concepts, including how research participation is safe and voluntary. When possible, characters were designed to resemble the targeted viewing audience. Discussion: Increasing AA and Hispanic participation in clinical and genomic research is imperative to achieving health equity. Tailored messages via short videos may assist in addressing the barriers and facilitators towards research participation and increase intentions to enroll in trials. Future research will evaluate the efficacy of the video through a multi-level framework in real-world settings.

Citation Format: Victoria Churchill, Yu-Mei Schoenberger, Vivian L Carter, Windy Dean-Colomb, Roland Matthews, Desiree Rivers, Stephen O Sodeke, Jamirah Chevrin, Brian Rivers. The development of a bioethically sensitive education video: Addressing the barriers to African Americans’ and Hispanics’ participation in clinical and genomic research through digital animation [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A005.