MyWeekInSight: Designing and Evaluating the Use of Visualization in Self-Management of Chronic Pain by Youth

A teenager's experience of chronic pain reverberates through multiple interacting aspects of their lives. To self-manage their symptoms, they need to understand how factors such as their sleep, social interactions, emotions and pain intersect; supporting this capability must underlie an effective personalized healthcare solution. While adult use of personal informatics for self-management of various health factors has been studied, solutions intended for adults are rarely workable for teens, who face this complex and confusing situation with unique perspectives, skills and contexts. In this design study, we explore a means of facilitating self-reflection by youth living with chronic pain, through visualization of their personal health data. In collaboration with pediatric chronic pain clinicians and a health-tech industry partner, we designed and deployed MyWeekInSight, a visualization-based self-reflection tool for youth with chronic pain. We discuss our staged design approach with this intersectionally vulnerable population, in which we balanced reliance on proxy users and data with feedback from youth viewing their own data. We report on extensive formative and in-situ evaluation, including a three-week clinical deployment, and present a framework of challenges and barriers faced in clinical deployment with mitigations that can aid fellow researchers. Our reflections on the design process yield principles, surprises, and open questions.