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

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 high school diploma. Overall, 2.3% of participants declined to share access to their EHR data (range across TACH sites = 1.3% to 3.5%). Younger age, female sex, and education >high school were significantly associated with decline to share EHR data, odds ratio (95% confidence interval) = 1.26 (1.19-1.33), 1.74 (1.42-2.14), and 2.44 (1.86-3.21), respectively. Results were similar when several sensitivity analyses were performed. DISCUSSION: AoURP seeks a dataset reflecting our nation's diversity in all aspects of participation. Those under-represented in biomedical research may be reluctant to share access to their EHR data. CONCLUSION: In our data, race and ethnicity were not independently related to participant decision to decline access to their EHR information. Results suggest that the value of the AoURP dataset is unlikely to be constrained by the size or the racial/ethnic composition of this subgroup.

Response to survey directed to patient portal members differs by age, race, and healthcare utilization.

Health care systems are increasingly utilizing electronic medical record-associated patient portals to facilitate communication with patients and between providers and their patients. These patient portals are growing in recognition as potentially valuable research tools. While there is much information about the response rates and demographics of internet-based surveys as well as the demographics of patients who are portal members, not much is known about the response rate of internet-based surveys directed to a group of patient portal members or the demographics of which portal members respond to internet-based surveys issued within that specific population. The objective of these analyses was to determine the demographics of patient portal users who respond to an internet-based survey request. We hypothesized that respondents would more likely be: (1) older (65+), (2) European American, (3) married, (4) female, (5) college educated, (6) have higher medical care utilization, (7) have more comorbidities, and (8) have a private practice primary care physician (as opposed to a salaried group practice primary care physician). We found that our respondents tended to be older, of European geographic ancestry, and more frequent users of healthcare. While patient portal members are an easily identifiable and contactable group that are potentially valuable participants for research, it is important to understand that respondents to surveys solicited from this sampling frame may not be entirely representative. It will be important to develop strategies to more fully engage populations that represent the target population in order to increase overall and subgroup response rates.