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

Abstract

Patients with heart failure (HF) are commonly implanted with cardiac resynchronization therapy (CRT) devices as part of their treatment. Presently, they cannot directly access the remote monitoring (RM) data generated from these devices, representing a missed opportunity for increased knowledge and engagement in care. However, electronic health data sharing can create information overload issues for both clinicians and patients, and some older patients may not be comfortable using the technology (i.e., computers and smartphones) necessary to access this data. To mitigate these problems, patients can be directly involved in the creation of data visualization tailored to their preferences and needs, allowing them to successfully interpret and act upon their health data. We held a participatory design (PD) session with seven adult patients with HF and CRT device implants, who were presently undergoing RM, along with two informal caregivers. Working in three teams, participants used drawing supplies and design cards to design a prototype for a patient-facing dashboard with which they could engage with their device data. Information that patients rated as a high priority for the “Main Dashboard” screen included average percent pacing with alerts for abnormal pacing, other device information such as battery life and recorded events, and information about who to contact with for data-related questions. Preferences for inclusion in an “Additional Information” display included a daily pacing chart, health tips, aborted shocks, a symptom list, and a journal. These results informed the creation of an actual dashboard prototype which was later evaluated by both patients and clinicians. Additionally, important insights were gleaned regarding the involvement of older patients in PD for health technology.

Remote Patient Monitoring Program for Hospital Discharged COVID-19 Patients

“…RPM programs use various telecommunication channels to collect health datasuch as a symptom surveys, vital signs, or data from wearable sensors-and transmit these data to a healthcare provider in a different location. [15][16][17][18][19] RPM is an attractive care delivery strategy with promise for lower costs, improved convenience, closer monitoring capabilities, and potentially better outcomes. However, data supporting the use of RPM have so far been mixed, with variable results depending on condition and implementation.…”

The gap between what patients know and desire to learn about their cardiac implantable electronic devices

“…Previous studies have examined patient preferences and desires in obtaining information from their CIEDs. In one study of seven patients with CRT devices, patients with CRT were asked their preferences and similar to our study stated that they wanted to know about battery life, events, and abnormal pacing when creating a visual dashboard that patients could access . In another study similar to our cohort, the authors found that patients with CIEDs wanted to have information from their devices in electronic or paper form, and having that information did not increase the physician's work load .…”

Untold Stories in User-Centered Design of Mobile Health: Practical Challenges and Strategies Learned From the Design and Evaluation of an App for Older Adults With Heart Failure

“…Furthermore, designers should be judicious in the use of design techniques, such as personas, which can lead to oversimplification and encourage misleading assumptions about end users [ 82 ]. Other strategies to mitigate incorrect assumptions include conducting more frequent testing or including stakeholders on design teams to challenge assumptions during the design process [ 50 , 71 ].…”

“…In these scenarios, individuals were presented with hypothetical situations related to data from a fictitious CIED and asked to think aloud as they made decisions about how to respond. Other formative study methods were a brief observation of a device clinic, meetings with 2 cardiologists, and sharing of findings and design work from 2 recent similar studies on CIED data sharing [ 43 , 50 ].…”