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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 reviewed 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.
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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.
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- Award ID(s):
- 1652302
- PAR ID:
- 10055128
- Date Published:
- Journal Name:
- ACM conference on human factors in computing systems
- Format(s):
- Medium: X
- Sponsoring Org:
- National Science Foundation
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