ArticleJournal of the American Medical Informatics Association : JAMIA2021
Comparison of family health history in surveys vs electronic health record data mapped to the observational medical outcomes partnership data model in the All of Us Research Program.
Article in Journal of the American Medical Informatics Association : JAMIA, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 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
12 citing papers in PubMed, 19 citations in OpenAlex.
- Perceptions of family health history in an East Baltimore community.Journal of community genetics · 2025Article
- Mental Health Disparities by Sexual Orientation and Gender Identity in the All of Us Research Program.JAMA network open · 2025Article
- A comparison of family health history of breast cancer, colorectal cancer, and diabetes in self-reported survey and electronic health records data, All of Us Research Program.Genetics in medicine open · 2025Article
- Family History of Arthritis, Osteoporosis, and Carpal Tunnel Syndrome and Risk of These Conditions Among US Adults.Arthritis care & research · 2024Article
- 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
- Usability, Engagement, and Report Usefulness of Chatbot-Based Family Health History Data Collection: Mixed Methods Analysis.Journal of medical Internet research · 2024Article
- Association Between a First-Degree Family History and Self-Reported Personal History of Obesity, Diabetes, and Heart and Blood Conditions: Results From the All of Us Research Program.Journal of the American Heart Association · 2023Article
- TheAnnual review of biomedical data science · 2023Review
- Observational
- Association of Disparities in Family History and Family Cancer History in the Electronic Health Record With Sex, Race, Hispanic or Latino Ethnicity, and Language Preference in 2 Large US Health Care Systems.JAMA network open · 2022Article
- Precision Medicine Landscape of Genomic Testing for Patients With Cancer in the National Institutes of Health All of Us Database Using Informatics Approaches.JCO clinical cancer informatics · 2022Observational
- Patients and consumers (and the data they generate): an underutilized resource.Journal of the American Medical Informatics Association : JAMIA · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
15 authors at 6 institutions in 1 country.
Funding
Abstract
objectiveFamily health history is important to clinical care and precision medicine. Prior studies show gaps in data collected from patient surveys and electronic health records (EHRs). The All of Us Research Program collects family history from participants via surveys and EHRs. This Demonstration Project aims to evaluate availability of family health history information within the publicly available data from All of Us and to characterize the data from both sources. MATERIALS AND
methodsSurveys were completed by participants on an electronic portal. EHR data was mapped to the Observational Medical Outcomes Partnership data model. We used descriptive statistics to perform exploratory analysis of the data, including evaluating a list of medically actionable genetic disorders. We performed a subanalysis on participants who had both survey and EHR data.
resultsThere were 54 872 participants with family history data. Of those, 26% had EHR data only, 63% had survey only, and 10.5% had data from both sources. There were 35 217 participants with reported family history of a medically actionable genetic disorder (9% from EHR only, 89% from surveys, and 2% from both). In the subanalysis, we found inconsistencies between the surveys and EHRs. More details came from surveys. When both mentioned a similar disease, the source of truth was unclear.
conclusionsCompiling data from both surveys and EHR can provide a more comprehensive source for family health history, but informatics challenges and opportunities exist. Access to more complete understanding of a person's family health history may provide opportunities for precision medicine.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.