Integrating Patient-Generated Observations of Daily Living into Pediatric Cancer Care: A Formative User Interface Design Study

Patient-generated data, such as recorded Observations of Daily Living (ODL) and Patient-Reported Outcomes (PRO) data, are valued sources of information in oncology care. However, prior work largely focuses on capturing clinician-defined, patient-generated data in adult oncology care. Emerging research at the intersection of human–computer interaction and medical informatics suggests that visual narratives of patients' observations of daily living (Visual ODLs) could better support multi-party review of patients' everyday symptoms and quality of life, potentially improving patient–clinician communication. In this paper, we build on a prior study of Visual ODLs by describing a formative, two-phase study with 15 pediatric oncology clinicians. In Phase I, we analyzed data from ethnographic interviews in a pediatric oncology setting to capture the needs of nurses, nurse practitioners, and oncologists. In Phase II, we constructed two low-fidelity dashboard display prototypes, populated with Visual ODLs contributed by actual adolescent oncology patients, and we subsequently interviewed pediatric oncology clinicians who re-viewed each dashboard design. Findings from our study contribute four key design objectives for presenting interactive Visual ODL dashboards in pediatric oncology, along with three use cases for using these dashboards for symptom tracking and communication.