JMIR Publications

ABSTRACT

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 healthcare settings and the separate realms of wellness tracking and disease self-monitoring is 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 contributes 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 heart patients experience activity data in relation to self-care and chronic illness?”.

Methods:

We conducted an explorative intervention study with patients with a heart arrhythmia (N = 27) who had an implanted cardioverter defibrillator, living in Denmark. The average age was 57,2 (twenty-five male and two female). Patients were invited to wear a wristband activity tracker for a minimum of three months and provide their perspectives on what experiences the data accentuate. Semi-structured interviews (N = 66) were conducted with patients 1–5 times and were analyzed iteratively in workshops using thematic analysis.

Results:

Eighteen out of twenty-seven patients related the heart rate, sleep, and step-count data directly to their heart disease. Wearable activity trackers actualized patients’ experiences across three 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 across all three dimensions, or they 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, it 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.