iAgree: a Decentralized Consent Management Platform for Patient-Controlled Sharing of Electronic Health Records Data for Research

Presentation Time: 02:00 PM - 03:15 PM

Abstract Keywords: Patient Engagement and Preferences, Data Sharing, Interoperability and Health Information Exchange
Primary Track: Applications
Programmatic Theme: Clinical Research Informatics

In this panel, we plan to introduce iAgree: a decentralized management platform for patient EHR data sharing preferences for research. The moderator will provide an overview of the motivation and goals of the iAgree project. Each panelist will discuss a key developmental aspect and the results from various stages of the work and their impact on the project, including (1) decentralized patient consent and data usage agreement management systems; (2) key informant interviews, usability testing, and iterative design; (3) FHIR-based multi-site EHR integration; and (4) simulated studies of patient consent to share sensitive health data for research. This topic of decentralized management platform for patient EHR data sharing preferences for research is timely and critical to support and empower patients to participate in cross-institutional clinical research. We anticipate informaticians, biomedical researchers, and clinical researchers will be interested in this panel.

Moderator:
Mary Whooley, MD
University of California, San Francisco

Speakers:
Tsung-Ting Kuo, PhD
Yale University

Kai Zheng, PhD
University of California, Irvine

Andrey Soares, PhD
University of Colorado School of Medicine

An Nguyen, OTD, OTR/L
Cedars-Sinai Medical Center

Authors:
Tsung-Ting Kuo, PhD - Yale University; Kai Zheng, PhD - University of California, Irvine; Andrey Soares, PhD - University of Colorado School of Medicine; An Nguyen, OTD, OTR/L - Cedars-Sinai Medical Center; Mary Whooley, MD - University of California, San Francisco; Lisa Schilling, MD, MSPH - U of Colorado; Spencer SooHoo, PhD - Cedars-Sinai Health Systems; Jihoon Kim, PhD - Yale University; Michelle Keller, PhD, MPH - Cedars-Sinai Health System; Yunan Chen, PhD - University of California, Irvine; Harold Moyse, Ms - Cedars-Sinai Medical Center; Brad Morse, Ph.D., MA - University of Colorado Anschutz Medical Campus; Lucila Ohno-Machado, MD, PhD - Yale School of Medicine;

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