Sociodemographic Disparities in Family Health History Survey Access and Electronic Health Records Data

Strategic Insights -

New research conducted by the Centers for Disease Control and Prevention (CDC) and other organizations has highlighted significant sociodemographic disparities in the access to family health history (FHH) survey and electronic health records (EHR) data, which could exacerbate inequities in access to FHH-based interventions. The study, published in the Genetics in Medicine Open journal, utilized data from the All of Us Research Program to examine the differences in FHH survey access, availability of EHR data, FHH knowledge, and concordance of FHH in survey and EHR data for breast cancer, colorectal cancer, and diabetes. The study found significant disparities in accessing the survey and reporting no FHH knowledge across various sociodemographic subgroups, with most FHH reported in the survey not captured in the EHR data.

Key Takeaways:

  • The study used data from the All of Us Research Program to examine sociodemographic differences in FHH survey access, availability of EHR data, FHH knowledge, and concordance of FHH in survey and EHR data for breast cancer, colorectal cancer, and diabetes.
  • Significant disparities were found in accessing the survey and reporting no FHH knowledge across almost all sociodemographic subgroups, including age, race and ethnicity, sex, sexual orientation, household income, employment status, education level, marital status, and health insurance status.
  • Most FHH reported in the survey was not captured in the EHR data, with the most significant disparities found among participants aged 20 to 29, students, those who did not graduate high school, those who were never married, and those with no health insurance.
  • The study found significant sociodemographic disparities in FHH survey access, FHH knowledge, and FHH captured in EHR structured data, which could widen inequities in access to FHH-based interventions.
  • Additional research is needed to address the disparities in FHH survey access and EHR data, which can impact the effectiveness of FHH-based interventions.

Statistics:

  • 20-29 years old: most FHH reported in the survey was not captured in the EHR data.
  • Students: most FHH reported in the survey was not captured in the EHR data.
  • Did not graduate high school: most FHH reported in the survey was not captured in the EHR data.
  • Never married: most FHH reported in the survey was not captured in the EHR data.
  • No health insurance: most FHH reported in the survey was not captured in the EHR data.

Sources:

  • 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, 2025,3():103439.
  • Centers for Disease Control and Prevention. (2025, July 28). Centers for Disease Control and Prevention Researchers Highlight Research in Colon Cancer (A comparison of family health history of breast cancer, colorectal cancer, and diabetes in self-reported survey and electronic health records data, All ...). Managed Care Weekly Digest, p 265.
  • NewsRx. (2025, July 28). Centers for Disease Control and Prevention Researchers Highlight Research in Colon Cancer (A comparison of family health history of breast cancer, colorectal cancer, and diabetes in self-reported survey and electronic health records data, All ...). Managed Care Weekly Digest.