Providing Patients with Implantable Cardiac Device Data through a Personal Health Record: A Qualitative Study

Abstract

Background Patients at risk for sudden cardiac death or having suffered cardiac arrest may receive an implantable cardioverter defibrillator (ICD). This device provides monitoring and therapy for life-threatening heart rhythms. Remote monitoring of ICDs has decreased the time between abnormal heart rhythm events and clinic follow-up. Currently, the data transmitted from the device are reviewed and stored by the clinic, but patients do not have access to the data. While connecting patients directly with their ICD data has potential to enhance engagement in their care and improve health outcomes, patient attitudes and perceptions about receiving ICD data have not been explored. Objective This research is the first demonstration of delivering ICD data to patients through a personal health record (PHR) using a novel technical framework. The objective of this study was to use a PHR interface as a technology probe to explore patients' experiences with directly receiving their ICD data from remote monitoring. Methods We enrolled 21 patients with an ICD undergoing remote monitoring at a large outpatient cardiology clinic in Indiana, United States. Participants received their ICD data from remote monitoring through a PHR over 3 months. In-depth, semistructured interviews were conducted at 3 months and analyzed using thematic analysis. Results Participants were 36 to 86 years old, mean age (SD) of 67 (14) years, predominately male (76%), and white (95%). Key themes were ICD questions and concerns, experiences with remote monitoring, PHR use, and feedback about the ICD data summary. The findings showed that overall, patients desired information that provides reassurance, is easy to understand, and is presented in a meaningful way. Conclusion Sharing ICD data from remote monitoring requires adequate context and scaffolding to support patient understanding. Engaging patients with information that is useful and valuable to them through a PHR may require appropriate and individualized tailoring of information.

Patients' and Nurses’ Experiences and Perceptions of Remote Monitoring of Implantable Cardiac Defibrillators in Heart Failure: Cross-Sectional, Descriptive, Mixed Methods Study

“…Currently, patients do not receive information directly from their remote monitored device, which patients in this study pointed out as a downside. However, findings from a feasibility [ 42 ] and evaluation [ 20 ] study in the United States suggest that it is not only feasible to deliver data from remote monitoring directly to patients, but also that this data sharing does not adversely impact clinic workflow and that patients perceive a benefit from having access to their remote monitoring data. The same result was found by Mirro et al when evaluating the impact of sharing ICD data summaries through a patient portal.…”

Delivering remote monitoring data to patients with implantable cardioverter‐defibrillators: Does medium matter?

“…The ICD data summary (Appendix ) included two parts: the first part contained a brief summary of the patients’ device type, implant date, battery status, lead status, and therapies applied; the second part was the “detailed report” which was uncurated and included all of the data elements from the remote monitoring. Development of the ICD data summary system began in 2013, during deployment of a feasibility study on delivery of ICD data to a patient portal . This involved establishing a secure connection from the remote monitoring database to the hospital server and electronic health record (EHR) system.…”

“…Development of the ICD data summary system began in 2013, during deployment of a feasibility study on delivery of ICD data to a patient portal. 16,29 This involved establishing a secure connection from the remote monitoring database to the hospital server and electronic health record (EHR) system. The Implantable Device Cardiac Observation (IDCO) Interface Profile was used to securely transmit data from the device company proprietary server (HL7 message) into the large enterprise EHR.…”

Visualization of Cardiac Implantable Electronic Device Data for Older Adults Using Participatory Design

“…Once all the groups completed their designs (30 minutes), participants were encouraged to walk around and look at the other teams' dashboards, ask questions, and discuss for about 5 minutes. 4. Group consensus process (20 minutes): Following the design activity, all teams were invited to share their designs, with the goal of reaching group consensus toward a single design.…”

“…2 Patients with CIEDs desire more information and support related to their device postimplantation 3 ; currently, they do not directly receive the data generated by RM. [4][5][6] Patient advocates have expressed concern that they can track other health data (e.g., with fitness trackers or sleep monitors) but cannot directly monitor the device permanently implanted in their body. 7 Providing access to this data allows a feedback loop from transmission back to patient, 8 increasing awareness of device functioning and potentially promoting higher engagement in care, incentivizing continued RM adherence, and allowing patients to initiate contact with the clinic for a faster response to data, if necessary.…”