The lived experiences and data speculations of people with Parkinson’s disease using active tests for symptom-tracking

Keeping track of symptoms is a familiar yet often complex task for people living with chronic conditions. In the context of Parkinson's disease, sensor-based technologies are becoming more common to track motor symptoms. These technologies typically rely on passive monitoring but can also be combined with active tests, in which users intentionally perform measuring tasks like finger-tapping or drawing. In this paper, we explore how people with Parkinson's experienced using such active tests through a smartphone app over the course of eight weeks. Drawing on 26 semi-structured interviews, our findings indicate that active tests impact bodily awareness, come with frictions of integration into daily life and may be reframed as motivations for exercises. Speculations on the resulting data suggest that these are partly seen as a useful resource for self-care, but also as a potential cause for anxiety and ambivalence when facing worsening symptoms and decline.