Supporting Patients in Managing Electronic Health Records and Biospecimens Consent for Research: Insights from a Mixed-Methods Usability Evaluation of the iAGREE Portal

October 31, 2025 Β· Declared Dead Β· πŸ› arXiv.org

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Authors Di Hu, Xi Lu, Yunan Chen, Michelle Keller, An T. Nguyen, Vu Le, Tsung-Ting Kuo, Lucila Ohno-Machado, Kai Zheng arXiv ID 2511.00207 Category cs.HC: Human-Computer Interaction Citations 0 Venue arXiv.org Last Checked 4 months ago
Abstract
De-identified health data are frequently used in research. As AI advances heighten the risk of re-identification, it is important to respond to concerns about transparency, data privacy, and patient preferences. However, few practical and user-friendly solutions exist. We developed iAGREE, a patient-centered electronic consent management portal that allows patients to set granular preferences for sharing electronic health records and biospecimens with researchers. To refine the iAGREE portal, we conducted a mixed-methods usability evaluation with 40 participants from three U.S. health systems. Our results show that the portal received highly positive usability feedback. Moreover, participants identified areas for improvement, suggested actionable enhancements, and proposed additional features to better support informed granular consent while reducing patient burden. Insights from this study may inform further improvements to iAGREE and provide practical guidance for designing patient-centered consent management tools.
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