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.

BACKGROUND: 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.

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

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.

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

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.

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

BACKGROUND: This study presents findings on the impact of providing patients with their implantable device data on patients' satisfaction, engagement, healthcare utilization, and provider's perceptions of this practice. Remote monitoring of implantable cardioverter defibrillators (ICDs) improves patient care through timely delivery of ICD data to the clinic. However, patients usually do not receive their ICD data. Providers are concerned that messaging patients with their device data could increase clinical workload. METHODS: To evaluate the impact of sharing ICD data summary through the patient portal, 128 patients were randomized into two groups. Group A and B received their data through the patient portal and postal mail, respectively. Data were collected through surveys and medical record reviews. Forty-eight providers also completed a survey. RESULTS: At the end of the study, at least two-thirds of patients were satisfied with the amount of information received through the electronic or paper ICD data summary. Additionally, providing patients with their device data did not increase ICD-specific clinical workload (e.g., calls or messages to provider). While providers did not foresee the provision of ICD data to patients as decreasing or improving clinical workload, they did see potential value in it for patients. CONCLUSIONS: Providing patients with their ICD data (through paper or electronic means) might have the potential to improve patient satisfaction and enhance shared-decision making without adversely impacting clinical workload.