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

Mirro, Michael J.; Ghahari, Romisa Rohani; Ahmed, Ryan; Reining, Lauren; Wagner, Shauna; Lehmann, Gavin; Heller, Jaime; Omlor, Melissa; Toscos, Tammy

doi:10.1016/j.cardfail.2018.07.317

Cited by 6 publications

(5 citation statements)

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“…Previous research suggests patients are satisfied with receiving RM data, 13 , 18 but it requires more explanation and personalization to be meaningful. 16 , 17 The participants in this study generally appreciated having access to their data, but several expected the dashboard to include more information than it was designed to provide, either in terms of the amount of data or its implications. Some attempted to connect how they were physically feeling with their data at a specific date or time.…”

Section: Discussionmentioning

confidence: 99%

“… 15 Recent works demonstrating the feasibility of sharing these data with patients suggest that type, amount, and modality are highly personal, and the data require explanation, relevance, and personalization to be meaningful and actionable. 16 , 17 , 18 , 19 However, these works have not provided patients a specific data element on which to take action and instructions for doing so. When evaluating new technologies, it is important to conduct research naturistically to determine context and usage within daily life, 20 and a small sample is sufficient to identify most major usability problems.…”

Section: Introductionmentioning

confidence: 99%

“…The primary goals of this pilot study were to gain insight into individual patients’ interpretations of device data and visualizations and their responses to RM data in daily life, and to contribute these insights to an emerging field of health data sharing that ultimately aims to design and implement technologies to further engage patients safely and effectively in self-management. 16 , 23 , 24 , 25 …”

Section: Introductionmentioning

confidence: 99%

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Patient responses to daily cardiac resynchronization therapy device data: A pilot trial assessing a novel patient-centered digital dashboard in everyday life

Toscos

Daley

Wagner

et al. 2020

Cardiovascular Digital Health Journal

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BACKGROUND Heart failure (HF) is a growing public health problem in the United States. Implantable cardiac resynchronization therapy (CRT) devices reduce mortality and morbidity, and remote monitoring (RM) of these devices improves outcomes. However, patient RM adherence is low, due in part to lack of access to their RM data. Providing these data to patients may increase engagement, but they must be appropriately tailored to ensure understanding.OBJECTIVE The purpose of this study was to examine patients' experiences interacting with their RM data through a novel digital dashboard as part of daily life.METHODS In this mixed-methods pilot study, 10 patients with implantable CRT defibrillators were given access to a patientcentered RM data dashboard, updated daily for 6-12 months. Preand post-health literacy, engagement, electronic portal (MyChart, Epic Systems Corporation) logins, and RM adherence were measured; system usability scores were collected at exit; and dashboard views were tracked. Exit interviews were conducted to elucidate patients' experiences.RESULTS Participants (100% white; 60% male; age 34-80 years [mean 6 SD: 62.0 6 13.4]) had adequate health literacy, increased MyChart logins (P 5 .0463), and nonsignificant increase in RM adherence. Participants viewed their dashboards 0-42 times (mean 14.9 6 12.5). Interviews revealed participants generally appreciated access to their data, understood it, and responded to changes; however, questions and concerns remained regarding data interpretation and visualization.CONCLUSION Preliminary findings support potential future integration of a CRT RM data dashboard in the daily care of HF patients. With appropriate informational support and personalization, sharing RM data with patients in a tailored dashboard may improve health engagement.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Patient responses to daily cardiac resynchronization therapy device data: A pilot trial assessing a novel patient-centered digital dashboard in everyday life

Toscos

Daley

Wagner

et al. 2020

Cardiovascular Digital Health Journal

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“…Lessons learned from the two studies described in this paper are that patients are seeking tailored, meaningful ways of viewing and understanding their health data [12,13]. In follow up to the studies described in this paper, our lab has begun investigating patient needs using patient-centered design methods, including focus groups and participatory design towards building an actionable, patient-facing view of the data [18,19,20]. User-centered design methods are critical to develop a tool that meets patient needs and provides the necessary scaffolding for self-management.…”

Section: Discussionmentioning

confidence: 99%

Data Integration and Interoperability for Patient-Centered Remote Monitoring of Cardiovascular Implantable Electronic Devices

2019

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The prevalence of cardiovascular implantable electronic devices with remote monitoring capabilities continues to grow, resulting in increased volume and complexity of biomedical data. These data can provide diagnostic information for timely intervention and maintenance of implanted devices, improving quality of care. Current remote monitoring procedures do not utilize device diagnostics to their potential, due to the lack of interoperability and data integration among proprietary systems and electronic medical record platforms. However, the development of a technical framework that standardizes the data and improves interoperability shows promise for improving remote monitoring. Along with encouraging the implementation of this framework, we challenge the current paradigm and propose leveraging the framework to provide patients with their remote monitoring data. Patient-centered remote monitoring may empower patients and improve collaboration and care with health care providers. In this paper, we describe the implementation of technology to deliver remote monitoring data to patients in two recent studies. Our body of work explains the potential for developing a patent-facing information display that affords the meaningful use of implantable device data and enhances interactions with providers. This paradigm shift in remote monitoring—empowering the patient with data—is critical to using the vast amount of complex and clinically relevant biomedical data captured and transmitted by implantable devices to full potential.

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“…In the second phase, patients’ preferences for the presentation (icon and label) of data elements were explored. Building on our previous report of findings, 28 the primary aims of this design study were to (1) identify which RM data elements are of high priority to patients with PMs and ICDs; (2) identify which supplemental information can help with interpreting the data and how frequently patients would like to receive the data; and (3) gather patients’ feedback on a visual display of the highest prioritized data elements, including icons, data labels, and descriptions.…”

Section: Introductionmentioning

confidence: 99%

Involving patients as key stakeholders in the design of cardiovascular implantable electronic device data dashboards: Implications for patient care

et al. 2020

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Background Data from remote monitoring (RM) of cardiovascular implantable electronic devices (CIEDs) currently are not accessible to patients despite demand. The typical RM report contains multiple pages of data for trained technicians to read and interpret and requires a patient-centered approach to be curated to meet individual user needs. Objective The purpose of this study was to understand which RM data elements are important to patients and to gain design insights for displaying meaningful data in a digital dashboard. Methods Adults with implantable cardioverter–defibrillators (ICDs) and pacemakers (PMs) participated in this 2-phase, user-centered design study. Phase 1 included a card-sorting activity to prioritize device data elements. Phase 2 included one-on-one design sessions to gather insights and feedback about a visual display (labels and icons). Results Twenty-nine adults (mean age 71.8 ± 11.6 years; 51.7% female; 89.7% white) participated. Priority data elements for both ICD and PM groups in phase 1 (n = 19) were related to cardiac episodes, device activity, and impedance values. Recommended replacement time for battery was high priority for the PM group but not the ICD group. Phase 2 (n = 10) revealed that patients would like descriptive, nontechnical terms to depict the data and icons that are intuitive and informative. Conclusion This user-centered design study demonstrated that patients with ICDs and PMs were able to prioritize specific data from a comprehensive list of data elements that they had never seen before. This work contributes to the goal of sharing RM data with patients in a way that optimizes the RM feature of CIEDs for improving patient outcomes and clinical care.

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

Cited by 6 publications

References 0 publications

Patient responses to daily cardiac resynchronization therapy device data: A pilot trial assessing a novel patient-centered digital dashboard in everyday life

Patient responses to daily cardiac resynchronization therapy device data: A pilot trial assessing a novel patient-centered digital dashboard in everyday life

Data Integration and Interoperability for Patient-Centered Remote Monitoring of Cardiovascular Implantable Electronic Devices

Involving patients as key stakeholders in the design of cardiovascular implantable electronic device data dashboards: Implications for patient care

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