A Patient-Centered Approach Towards Designing a Novel CIED Remote Monitoring Report

Background Individuals with cardiac implantable electronic devices (CIEDs) currently are not given access to their remote monitoring data. The information is managed by their cardiology clinic and each center receives a high-level notification if serious abnormalities are detected in CIED function or cardiac rhythm. The ability to access oneu0027s own health information can provide an opportunity for self-reflection, engagement and shared decision making with clinicians. Objective This study sought to identify key CIED data points that patients feel would be helpful for self-management and cardiac disease awareness. Methods We conducted four focus groups with CIED patients and caregivers: two for patients with implantable cardioverter defibrillators (ICDs) (N= 13, 9 patients and 4 caregivers) and two for patients with pacemakers (N = 14, 10 patients and 4 caregivers). First, participants were educated about the types of data collected through remote monitoring. Second, participants engaged in a card-sorting activity where they were presented with a deck of cards containing all possible reported remote monitoring data points (55 data points for ICDs and 37 for pacemakers). Participants selected and prioritized the cards based on what information they would like to receive from their device. Patients sorted the cards into one of three categories: most preferred (no more than 5 cards), moderately preferred (no limit), and not preferred/discarded (no limit). Participants also indicated how frequently they would like to be updated with a data report and if they would like to receive any additional supporting information to facilitate the interpretation of this data. Results Device activity (e.g., total shocks and ventricular pacing) and cardiac episodes (e.g., monitored and treated episodes) were the top selected data categories chosen by 80% and 72% of all participants, respectively. Device settings (programmed parameters) and device information (e.g., lead impedance) were the least selected data categories discarded by 58% and 48% of participants, respectively. Through discussion, we identified the emerging reasons for discarding specific content cards, which included: insufficient understanding, unclear relevance to health condition, information overload, and difficulty interpreting numbers. Conclusion In this presentation, we will share the user-centered design methodology and resulting patient preferences for CIED data, all used to shape a novel patient-centered remote monitoring report.