Honoring patient preferences for sharing their electronic health records in a way that meets institutional requirements for adoption is a challenge. From our past experience with contacting patients to participate in research studies, we have gained valuable knowledge and lessons, including the following: Patients are unaware that their “de-identified” data can be shared for research purposes without consent, and most patients do not know their data are being shared for research and who may have accessed their data for what type of research. Even when identifiable data that involve an approval process are involved, e.g., genomes, the granting of consent waivers is highly variable among institutions. Patients are satisfied when given the opportunity to choose when and with whom to share which portions of their data, and their participation levels in research did not have an adverse effect with this opportunity.
This project aims to find a solution for honoring patient preferences while meeting institutional requirements. The proposed solution will result in a system that authenticates patients, allows them to make sharing choices, and change sharing choices based on each study’s parameters. This platform will be deployed at the seven institutions participating in this project. The proposed aims are as follows:
Principal Investigator (PI): Lucila Ohno-Machado (UCSD)
Site PIs: Michelle Keller (Cedars-Sinai), Yunan Chen (UCI), Daniella Meeker (USC), Lisa Schilling (University of Colorado Denver), Spencer SooHoo (Cedars-Sinai), Mary Whooley (UCSF), Kai Zheng (UCI)
UCSD team: Natalie Gonzalez, Tsung-Ting Kuo, Anh Pham
Grant: NHGRI R01 HG011066
Contact Email: iagree@health.ucsd.edu
Start Date: May 2020
Expected Duration: 5 years
Find out more about the project through NIH RePORTER.