Browsing by Author "Daley, Carly"
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Item Clinician use of data elements from cardiovascular implantable electronic devices in clinical practice(Elsevier, 2023-01-20) Daley, Carly; Coupe, Amanda; Allmandinger, Tina; Shirazi, Jonathan; Wagner, Shauna; Drouin, Michelle; Ahmed, Ryan; Toscos, Tammy; Mirro, Michael; BioHealth Informatics, School of Informatics and ComputingBackground: Cardiovascular implantable electronic devices (CIEDs) capture an abundance of data for clinicians to review and integrate into the clinical decision-making process. The multitude of data from different device types and vendors presents challenges for viewing and using the data in clinical practice. Efforts are needed to improve CIED reports by focusing on key data elements used by clinicians. Objective: The purpose of this study was to uncover the extent to which clinicians use the specific types of data elements from CIED reports in clinical practice and explore clinicians' perceptions of CIED reports. Methods: A brief, web-based, cross-sectional survey study was deployed using snowball sampling from March 2020 through September 2020 to clinicians who are involved in the care of patients with CIEDs. Results: Among 317 clinicians, the majority specialized in electrophysiology (EP) (80.1%), were from North America (88.6%), and were white (82.2%). Over half (55.3%) were physicians. Arrhythmia episodes and ventricular therapies rated the highest among 15 categories of data presented, and nocturnal or resting heart rate and heart rate variability were rated the lowest. As anticipated, clinicians specializing in EP reported using the data significantly more than other specialties across nearly all categories. A subset of respondents offered general comments describing preferences and challenges related to reviewing reports. Conclusion: CIED reports contain an abundance of information that is important to clinicians; however, some data are used more frequently than others, and reports could be streamlined for users to improve access to key information and facilitate more efficient clinical decision making.Item Data Integration and Interoperability for Patient-Centered Remote Monitoring of Cardiovascular Implantable Electronic Devices(MDPI, 2019-03-17) Daley, Carly; Toscos, Tammy; Mirro, Michael; BioHealth Informatics, School of Informatics and ComputingThe 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.Item Impact of electronic personal health record use on engagement and intermediate health outcomes among cardiac patients: a quasi-experimental study(Oxford University Press, 2016-01) Toscos, Tammy; Daley, Carly; Heral, Lisa; Doshi, Riddhi; Chen, Yu-Chieh; Eckert, George J.; Plant, Robert L.; Mirro, Michael J.; Biostatistics, School of Public HealthObjectives: To determine the impact of tethered personal health record (PHR) use on patient engagement and intermediate health outcomes among patients with coronary artery disease (CAD). Methods: Adult CAD patients (N = 200) were enrolled in this prospective, quasi-experimental observational study. Each patient received a PHR account and training on its use. PHRs were populated with information from patient electronic medical records, hosted by a Health Information Exchange. Intermediate health outcomes including blood pressure, body mass index, and hemoglobin A1c (HbA1c) were evaluated through electronic medical record review or laboratory tests. Trends in patient activation measure® (PAM) were determined through three surveys conducted at baseline, 6 and 12 months. Frequency of PHR use data was collected and used to classify participants into groups for analysis: Low, Active, and Super users. Results: There was no statistically significant improvement in patient engagement as measured by PAM scores during the study period. HbA1c levels improved significantly in the Active and Super user groups at 6 months; however, no other health outcome measures improved significantly. Higher PAM scores were associated with lower body mass index and lower HbA1c, but there was no association between changes in PAM scores and changes in health outcomes. Use of the PHR health diary increased significantly following PHR education offered at the 6-month study visit and an elective group refresher course. Conclusions: The study findings show that PHR use had minimal impact on intermediate health outcomes and no significant impact on patient engagement among CAD patients.Item Involving patients as key stakeholders in the design of cardiovascular implantable electronic device data dashboards: Implications for patient care(Elsevier, 2020-05-11) Daley, Carly; Ghahari, Romisa Rohani; Drouin, Michelle; Ahmed, Ryan; Wagner, Shauna; Reining, Lauren; Coupe, Amanda; Toscos, Tammy; Mirro, Michael; BioHealth Informatics, School of Informatics and ComputingBackground: 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.Item Patient responses to daily cardiac resynchronization therapy device data: A pilot trial assessing a novel patient-centered digital dashboard in everyday life(Elsevier, 2020-09) Toscos, Tammy; Daley, Carly; Wagner, Shauna; Coupe, Amanda; Ahmed, Ryan; Holden, Richard J.; Flanagan, Mindy E.; Pfafman, Rachel; Ghahari, Romisa Rohani; Mirro, Michael; Medicine, School of MedicineBackground 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 patient-centered RM data dashboard, updated daily for 6–12 months. Pre- and 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 ± SD: 62.0 ± 13.4]) had adequate health literacy, increased MyChart logins (P = .0463), and nonsignificant increase in RM adherence. Participants viewed their dashboards 0–42 times (mean 14.9 ± 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.Item Patient-centered Design Grounded in User and Clinical Realities: Towards Valid Digital Health(Sage, 2019-09) Cornet, Victor P.; Daley, Carly; Bolchini, Davide; Toscos, Tammy; Mirro, Michael J.; Holden, Richard J.; Medicine, School of MedicineValid design of patient-centered digital health or health information technology (IT) systems is based on a thorough and accurate understanding of both “user reality” and “clinical reality.” Type 1 Design Error (User-Reality Error) occurs when designers do not accommodate user characteristics, tasks, context of use, needs, or preferences. Type 2 Design Error (Clinical-Reality Error) occurs when designers do not accommodate the clinical reality, including biomedical knowledge, clinical workflows, and organizational requirements. Both types of errors can invalidate the design, leading to products being rejected by patient end-users or their healthcare delivery systems, product non-use or inappropriate use, and risk of harm. This paper describes our attempts to achieve valid health IT design and avoid the two design errors. We performed iterative, patient-centered design to prototype a mobile application, Power to the Patient (P2P), supporting heart failure self-care management. Our multidisciplinary team of human factors, cardiology, and design experts developed and iteratively refined requirements based on data collection, review, and testing with patient research participants, a patient advisory board, a clinical advisory board, and experts on the team. We describe our process and reflect on working with multiple stakeholders toward the goal of valid health IT design.Item Uncertainty Management Among Older Adults with Heart Failure: Responses to Receiving Implanted Device Data using a Fictitious Scenario Interview Method(Sage, 2019) Daley, Carly; Cornet, Victor; Patekar, Gauri; Kosarabe, Swapnil; Bolchini, Davide; Toscos, Tammy; Mirro, Michael; Wagner, Shauna; Martin, Elizabeth; Ghahari, Romisa Rohani; Ahmed, Ryan; Miller, Amy; Holden, Richard J.; Medicine, School of MedicineHeart failure (HF) is a complex chronic illness that affects the older adult population, requiring medical therapy and day-to-day management to prevent worsening and exacerbation. Patients with HF are often treated with cardiac implanted electronic devices (CIEDs) which capture diagnostic and predictive parameters for HF. In this work we explore how patients would respond to receiving data from an implanted device, using a fictitious scenario interview method with 24 older adults with HF. We applied an uncertainty management lens to better understand how patients face uncertain outcomes and integrate novel data into their decision making. The findings provide insight into how patients would engage and respond to a technology which provides an indicator of their HF status from an implanted device.Item 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(JMIR Publications, 2020-07-21) Cornet, Victor Philip; Toscos, Tammy; Bolchini, Davide; Ghahari, Romisa Rohani; Ahmed, Ryan; Daley, Carly; Mirro, Michael J.; Holden, Richard J.; Medicine, School of MedicineBackground User-centered design (UCD) is a powerful framework for creating useful, easy-to-use, and satisfying mobile health (mHealth) apps. However, the literature seldom reports the practical challenges of implementing UCD, particularly in the field of mHealth. Objective This study aims to characterize the practical challenges encountered and propose strategies when implementing UCD for mHealth. Methods Our multidisciplinary team implemented a UCD process to design and evaluate a mobile app for older adults with heart failure. During and after this process, we documented the challenges the team encountered and the strategies they used or considered using to address those challenges. Results We identified 12 challenges, 3 about UCD as a whole and 9 across the UCD stages of formative research, design, and evaluation. Challenges included the timing of stakeholder involvement, overcoming designers’ assumptions, adapting methods to end users, and managing heterogeneity among stakeholders. To address these challenges, practical recommendations are provided to UCD researchers and practitioners. Conclusions UCD is a gold standard approach that is increasingly adopted for mHealth projects. Although UCD methods are well-described and easily accessible, practical challenges and strategies for implementing them are underreported. To improve the implementation of UCD for mHealth, we must tell and learn from these traditionally untold stories.Item Visualization of Cardiac Implantable Electronic Device Data for Older Adults Using Participatory Design(Thieme, 2019-09-18) Ahmed, Ryan; Toscos, Tammy; Ghahari, Romisa Rohani; Holden, Richard J.; Martin, Elizabeth; Wagner, Shauna; Daley, Carly; Coupe, Amanda; Mirro, Michael; BioHealth Informatics, School of Informatics and ComputingPatients 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.