LAUSR

Background Most commercial activity trackers are developed as consumer devices and not as clinical devices. The aim is to monitor and motivate sport activities, healthy living, and similar wellness purposes, and the devices are not designed to support care management in a clinical context. There are great expectations for using wearable sensor devices in health care settings, and the separate realms of wellness tracking and disease self-monitoring are increasingly becoming blurred. However, patients’ experiences with activity tracking technologies designed for use outside the clinical context have received little academic attention. Objective This study aimed to contribute to understanding how patients with a chronic disease experience activity data from consumer self-tracking devices related to self-care and their chronic illness. Our research question was: “How do patients with heart disease experience activity data in relation to self-care and chronic illness?” Methods We conducted a qualitative interview study with patients with chronic heart disease (n=27) who had an implanted cardioverter-defibrillator. Patients were invited to wear a FitBit Alta HR wearable activity tracker for 3-12 months and provide their perspectives on their experiences with step, sleep, and heart rate data. The average age was 57.2 years (25 men and 2 women), and patients used the tracker for 4-49 weeks (mean 26.1 weeks). Semistructured interviews (n=66) were conducted with patients 2–3 times and were analyzed iteratively in workshops using thematic analysis and abductive reasoning logic. Results Of the 27 patients, 18 related the heart rate, sleep, and step count data directly to their heart disease. Wearable activity trackers actualized patients’ experiences across 3 dimensions with a spectrum of contrasting experiences: (1) knowing, which spanned gaining insight and evoking doubts; (2) feeling, which spanned being reassured and becoming anxious; and (3) evaluating, which spanned promoting improvements and exposing failure. Conclusions Patients’ experiences could reside more on one end of the spectrum, could reside across all 3 dimensions, or could combine contrasting positions and even move across the spectrum over time. Activity data from wearable devices may be a resource for self-care; however, the data may simultaneously constrain and create uncertainty, fear, and anxiety. By showing how patients experience self-tracking data across dimensions of knowing, feeling, and evaluating, we point toward the richness and complexity of these data experiences in the context of chronic illness and self-care.