Using visual storytelling to share aggregate findings with families participating in clinical genomics research

Abstract

PurposeSharing aggregate results with research participants is a widely-agreed upon ethical obligation, yet there is little research on communicating study results to diverse populations enrolled in genomics research. This paper describes the co-creation of a visual narrative to explain research findings to families enrolled in a clinical genomics research study. MethodsThe design process involved researchers, clinicians, study participants, a physician-illustrator, and a health communications expert. Drawing on themes identified in interviews with participating families, the team developed a story and comic about a fictional family participating in genomic research in the hopes of finding an explanation for their child’s condition. ResultsDesign adjustments to improve the clarity and relatability of the story and accompanying images were prompted by feedback from study participants, who showed a high degree of interest in and support for the project. Spanish and English versions of the final comic book were distributed to study participants and feedback received was positive. ConclusionOur project highlights the feasibility of using visual storytelling to convey genomic research findings to socioeconomically diverse participants. A participatory design process enhances the relevance and relatability of results sharing materials and demonstrates respect for those who contribute to clinical genomics research.