Visualization Co-Design with Prostate Cancer Survivors who have Limited Graph Literacy

Visualizing patient-reported outcomes overtime has become a common strategy to help patients track their health. However, traditional line graphs and bar charts might be less accessible to people with limited numeracy and graph literacy. Although patient-reported outcomes (PRO) among prostate cancer survivors may be collected with extant validated instruments, such as the Expanded Prostate Cancer Index (EPIC-26), survivors with limited numeracy and graph literacy may not find traditional charts and graphs accessible. The Graphical Representation of Symptoms of Prostate Cancer (GRASP) research team embarked on a 4-stage design process with prostate cancer survivors with limited graph literacy to investigate design considerations for timeline visualizations, including preferences, acceptability, and understandability. Through focus groups, surveys, and the recurring engagement of a community-based Patient Advisory Board, we identified 3 design approaches that reflect the needs of low graph literacy patients as well as show promise to increase acceptance and comprehension. We are developing these designs into interactive prototypes for evaluation through user testing. Findings from our design process provide insight into effective strategies for engaging vulnerable patients for visualization co-design using in-person and remote methods. Finally, the design considerations we identified for prostate cancer survivors with limited graph literacy that may provide insight for visualizations of PROs for other vulnerable groups.