ArticleJournal of the American Medical Informatics Association : JAMIA2022
Demographic differences in willingness to share electronic health records in the All of Us Research Program.
Article in Journal of the American Medical Informatics Association : JAMIA, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
7 citing papers in PubMed, 9 citations in OpenAlex.
- Bioethics and medical oversight in multi-site observational neuroimaging studies with children and adolescents: 10 years of ABCD experience.Developmental cognitive neuroscience · 2026Article
- Characteristics of Participants Who Consented to Share Data with a Public Health Registry After an Environmental Disaster.International journal of environmental research and public health · 2025Article
- Returning value to communities from the All of Us Research Program through innovative approaches for data use, analysis, dissemination, and research capacity building.Journal of the American Medical Informatics Association : JAMIA · 2024Article
- Family History of Arthritis, Osteoporosis, and Carpal Tunnel Syndrome and Risk of These Conditions Among US Adults.Arthritis care & research · 2024Article
- Prediction of Readmission Following Sepsis Using Social Determinants of Health.Critical care explorations · 2024Article
- Enabling Health Data Sharing with Fine-Grained Privacy.Proceedings of the ... ACM International Conference on Information & Knowledge Management. ACM International Conference on Information and Knowledge Management · 2023Article
- Consideration of bias in data sources and digital services to advance health equity.Journal of the American Medical Informatics Association : JAMIA · 2022Article
Corrections and comments
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Authors and funding
10 authors at 6 institutions in 1 country.
Funding
Abstract
objectiveParticipant 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
methodsWe 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.
resultsWe 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.
conclusionIn 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.
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Registered trials
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