Epilepsy diagnosis and treatment relies heavily on patient self-reporting for informing clinical decision-making. These self-reports are traditionally collected from handwritten patient journals and tend to be either incomplete or inaccurate. Recent mobile and wearable health tracking developments stand to dramatically impact clinical practice through supporting patient and caregiver data collection activities. However, the specific types and characteristics of the data that clinicians need for patient care are not well known. In this study, we conducted interviews, a literature review, an expert panel, and online surveys to assess the availability and quality of patient-reported data that is useful but reported as being unavailable, difficult for patients to collect, or unreliable during epilepsy diagnosis and treatment, respectively. The results highlight important yet underexplored data collection and design opportunities for supporting the diagnosis, treatment, and self-management of epilepsy and expose notable gaps between clinical data needs and current patient practices.
Part of the book: Seizures