The EHealth Program maintains a collaborative research partnership with the American Board of Family Medicine (ABFM) and Stanford University. The purpose of this collaboration is to conduct innovative data linkages between data derived from electronic health records (EHRs) and restricted Census Bureau microdata as a means of producing high-quality statistics and conducting health research that marries clinical and social indicators in novel ways.

Stanford University has shared American Family Cohort (AFC) data with the Census Bureau, consisting of EHRs collected as part of ABFM’s PRIME Registry which is the largest outpatient Qualified Clinical Data Repository (QCDR) open to all primary care clinicians in the U.S. The registry consolidates data from hundreds of primary care practices across the U.S. as a means of helping practices measure clinical quality. The AFC is a research dataset that is derived from the PRIME Registry and curated by Stanford University’s Center for Population Health Science and includes a variety of information such as patient demographics, diagnoses, treatments, medications, and other clinical indicators.

The first paper from this collaboration was published in JAMIA in November 2024 and evaluates the likelihood of linking AFC data to restricted-use individual-level American Community Survey (ACS) data based on patient health condition. We also have several ongoing projects as a part of this research collaboration that rely on linked AFC-Census Bureau data. First, we have evaluated how well area based measures of social risk, as compared to individual socioeconomic measures, predict health outcomes and mortality, overall, and by race, ethnicity, rurality, age, and gender. Second, we explore concordance of race and ethnicity reporting in AFC data relative to Census Bureau data (decennial census and the ACS) and how discordance impacts estimation of racial/ethnic health disparities across a variety of health outcomes. Third, we are leveraging the linked data to better understand health disparities in primary care settings for individuals with and without disabilities.