Visual ODLs: Co-Designing Patient-Generated Observations of Daily Living to Support Data-Driven Conversations in Pediatric Care

Teens with complex chronic illnesses have difficulty understanding and articulating symptoms such as pain and emotional distress. Yet, symptom communication plays a central role in clinical care and illness management. To understand how design can help overcome these challenges, we created a visual library of 72 sketched illustrations, informed by the Observations of Daily Living framework along with insights from 11 clinician interviews. We utilized our library with storyboarding techniques, free-form sketching, and interviews, in co-design sessions with 13 pairs of chronically-ill teens and their parents. We found that teens depicted symptoms as being interwoven with narratives of personal and social identity. Teens and parents were enthusiastic about collaboratively-generated, interactive storyboards as a tracking and communication mechanism, and suggested three ways in which they could aid in communication and coordination with informal and formal caregivers. In this paper, we detail these findings, to guide the design of tools for symptom-tracking and incorporation of patient-generated data into pediatric care.