“Data Is One Thing, But I Want To Know The Story Behind”: Designing For Self-Tracking and Remote Patient Monitoring In The Context Of Multiple Sclerosis Care

We report on design-focused inquiry into future multiple sclerosis (MS) healthcare; including a multi-stage design process with experienced MS clinicians, and formative evaluations with people living with MS. MS is a chronic, progressive, and unpredictable inflammatory neurological disease of the central nervous system that affects at least 2.8 million people worldwide. Walking impairments affect up to 85% of people diagnosed with MS. Responding to this, our focus is on design for longitudinally monitoring mobility, and in particular using wearable sensors that generate data on gait metrics to support clinical and self-care decision-making. We contribute to HCI research in three ways: (1) a detailed case study design process, including artifacts; (2) metaphorical framing concepts, with associated use cases illustrated through design scenarios; and (3) understanding of virtual-first practices in rehabilitation medicine that can be translated beyond MS care.