Demographic differences in willingness to share electronic health records in the All of Us Research Program.

ABSTRACT:

Objective

Participant willingness to share electronic health record (EHR) information is central to success of the National Institutes of Health All of Us Research Program (AoURP). We describe the demographic characteristics of participants who decline access to their EHR data.

Materials and methods

We included participants enrolling in AoURP between June 6, 2017 and December 31, 2019 through the Trans-American Consortium for the Health Care Systems Research Network (TACH). TACH is a consortium of health care systems spanning 6 states, and an AoURP research partner.

Results

We analyzed data for 25 852 participants (89.3% of those enrolled). Mean age = 52.0 years (SD 16.8), with 66.5% White, 18.7% Black/African American, 7.7% Hispanic, 32.5% female, and 76% with >a hig

SUBMITTER: Joseph CLM 

PROVIDER: S-EPMC9196689 | biostudies-literature | 2022 Jun

REPOSITORIES: biostudies-literature