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

  • Di Hu
  • , Xi Lu
  • , Yunan Chen
  • , Michelle Keller
  • , An T. Nguyen
  • , Vu Le
  • , Tsung Ting Kuo
  • , Lucila Ohno-Machado
  • , Kai Zheng
  • University of California at Irvine
  • University of Southern California
  • Cedars-Sinai Medical Center
  • Yale University

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish
Pages (from-to)471-480
Number of pages10
JournalAMIA Annual Symposium proceedings
Volume2024
StatePublished - 2024

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