"It's Better to be Grounded in Reality": a Speculative Exploration of Patient-Centered Digital Phenotyping for Neurological Conditions

Digital phenotyping in clinical research provides objective measures when evaluating neurological conditions, such as ataxias and Parkinson’s disease. While the clinical validity of digital phenotyping data is yet to be fully determined, individual research results are not reported back to participants due to apprehension about how complex data types should be represented, the manner in which results should be communicated to patients, and the possibility of uncertain results being misinterpreted. However, researchers are calling for individual results to be made available to participants, respecting participants’ ownership of their quantified selves and improving transparency of research practices. To investigate how patients with progressive conditions might value seeing their data, we are conducting an interview study with neurology patients who have participated in digital phenotyping. We report initial findings from four participants, who expressed interest in using digital phenotyping data to 1) motivate their care, 2) make perception of their condition concrete, 3) reduce labor in tracking and communicating their condition, and 4) perceive their contributions to clinical research. This work points to exciting potential of patient-centered digital phenotyping to benefit patients’ understanding of themselves, and push forward a paradigm of ethical data report-back.