myWeekInSight: visualizing personal data for chronic pain management through youth-centered design (2022)
Chronic pain is a common and costly condition in youth. 20-30% report recurrent pain that is not disabling, but still interferes with academic, social, and recreational functioning, and has significant effects on mental health (e.g. higher rates of anxiety, depression, and post-traumatic stress symptoms). Existing digital applications to help patients self-manage chronic pain often report low engagement and typically focus narrowly on either symptom tracking (emphasis on user providing data), or intervention delivery (translating an in-person intervention into a digital format).We hypothesize that if youth with chronic pain could actively explore data from their lived experiences, they could better relate their symptoms to other areas of their lives and improve their general functioning. Our approach novelly uses interactive visualization of self-reported data as an intervention. We contribute design principles for engaging youth-centered visualizations of personal health data, and discuss metrics that can be used to measure their efficacy. Both were derived through the development of myWeekInSight, a visualization-based web application for teens to interactively explore personal health data, using data collected via thrice-daily surveys (Ecological Momentary Assessments) to capture in-the-moment a youth’s everyday circumstances, symptoms and experiences. We developed these visualizations iteratively with guidance from pediatric chronic pain clinicians, a patient partner, and experts in information visualization and human-computer interaction. We evaluated them in two phases, both with members of the target population: (1) design evaluation (N=10): assessment of comprehensibility, usability, and engagement through semi-structured interviews and questionnaires, followed by a qualitative analysis using affinity diagramming; and (2) utility evaluation (N=50): through a 2-week clinical deployment of a fully-functioning prototype developed in collaboration with a health tech firm, followed by semi-structured interviews and questionnaires with a subset of the participants (N=10) analyzed using affinity diagramming. Youth found the visualizations to be reflective of their experiences, interesting and useful, and were able to extract actionable insights; they also confirmed their interest in using the application in their daily lives, and described possible usage scenarios. We close by discussing our learnings from the evaluation studies, and implications for next steps.