Healthcare safety and regulatory systems are limited by the quality of the data used to guide decision making;
efforts to fully realize health equity across ethnicity, race, age, disability, and geography, will be accelerated by
data that best measures and captures the health of all Americans and the contexts in which they receive their
care. Similar to challenges in equitable clinical trial recruitment, minoritized populations, older populations, rural
populations and persons with disabilities have been underrepresented in the real-world data that are
increasingly used for studies of drug and device safety and efficacy. To address these challenges, as noted in
our application and in responding to the barriers to health equity addressed in U01 RFA-FD-23-009, our overall
research objectives are twofold. First, we will evaluate the delivery of guideline concordant care for COVID-19
using data obtained from the American Board of Family Medicine’s PRIME Registry. These include longitudinal
data since 2016 on nearly eight million primary care patients from small independent clinics across the U.S.
The patients are diverse geographically and socially, including patients living in all 50 states and over half of
the ZIP codes in the U.S. Our approach will build on a three-year collaboration between Stanford University
and the American Board of Family Medicine to curate the PRIME Registry data for regulatory use and
transform them into a research dataset, the American Family Cohort (AFC). Despite representing the bulk of
care, data from primary care is notably absent in much of the current real-world data landscape as much of the
data used for federally funded research comes from academic medical centers which focus on inpatient,
tertiary and quaternary care. Second, we propose to enhance the AFC data through the development and
application of methods to better capture data relevant to health equity analyses from electronic medical records
such as race, ethnicity, geography and social circumstances. We will apply these data to understanding health
inequalities in incidence of and treatment for COVID-19 and long-COVID in the primary care setting.
Aim 1: Compare the incidence of COVID-19, long-COVID, and guideline concordant treatment for COVID-19
by race, ethnicity and area based social deprivation in the primary care setting.
Aim 2: Estimate the effect of geography and area based social deprivation on the incidence of COVID-19 and
long-COVID and guideline concordant treatment for COVID-19 in the primary care setting.
Aim 3: Evaluate differences in summary statistics for COVID-19 and long-COVID diagnoses contrasting
estimates generated using different data types.
While our Specific Aims are to demonstrate the utility of this data for health equity research specific to COVID-
19 and long-COVID, this proposal will enable the development of these underlying data for more general use
examining equity for drugs, procedures and device safety for a variety of health conditions.