Abstract
INTRODUCTION: Patients with primary glomerular disease (GN) have unique management needs. We describe the design of a user-centered, patient-facing electronic health (eHealth) tool to support GN management. METHODS: We surveyed patients and GN expert nephrologists on disease management tasks, educational needs, and barriers and facilitators of eHealth tool use. Results were summarized and presented to patients, nephrologists, engineers, and a behavioral and implementation science expert in stakeholder meetings to jointly design an eHealth tool. Key themes from the meetings are described using rapid qualitative analysis. RESULTS: Sixty-six patients with minimal change disease, focal segmental glomerulosclerosis, IgA nephropathy, and membranous nephropathy responded to the survey, as well as 25 nephrologists from the NIH-funded Cure Glomerulonephropathy study network. Overall, patients performed fewer management tasks and acknowledged fewer informational needs than recommended by nephrologists. Patients were more knowledgeable about eHealth tools than nephrologists. Nine patient stakeholders reflected on the survey findings and noted a lack of awareness of key recommended management tasks and receiving little guidance from nephrologists on using eHealth. Key themes and concepts from the stakeholder meetings about eHealth tool development included the need for customizable design, trustworthy sources, seamless integration with other apps and clinical workflow, and reliable data tracking. The final design of our eHealth tool, the UrApp System, has 5 core features: "Profile" generates personalized data tracking, educational information, facilitation with provider discussions and inputting other preferences; "Data Tracking" displays patient health data with the ability to communicate important trends to patients and nephrologists; "Resources" provides trusted education information in a personalized manner; "Calendar" displays key events and generate reminders; and "Journal" facilitates information documentation using written or audio notes. CONCLUSION: Our theory- and evidenced-based, stakeholder-engaged design process created designs for an eHealth tool to support the unique needs of patients with GN, optimized for effectiveness and implementation.