The Centers for Disease Control and Prevention (CDC) awarded scientists from Advocate Aurora Research Institute funding for a cooperative agreement over four years to contribute data from electronic health records for public health surveillance of long-term links between prenatal exposures and early childhood outcomes.
The scientists will harness the substantial amount of patient health information from pairings of pregnant people and their infants who receive care at Advocate Health Care sites in Illinois and Aurora Health Care sites in Wisconsin. The Research Institute, Advocate and Aurora are all part Advocate Health.
The overall goal of the cooperative agreement is to enhance the CDC’s national health monitoring efforts by tracking pregnant person-infant pairings in hopes of improving health outcomes for pregnant people, infants and children.
“Advocate Aurora Research Institute is uniquely positioned to assist with this data collection, since Advocate and Aurora together make up the largest integrated health system in the Midwest and one of the largest single instances of Epic’s electronic health record in the world,” said Marybeth Ingle, PhD, MPH, principal investigator for the study. “Our patient population is also one of the most diverse in the Midwest in terms of race, ethnicity, geography and socioeconomic status.”
The research team has already identified existing linkages between more than 4,500 pregnant people and their children from birth through at least six years of age.
“We know that prenatal exposures, whatever they may be, have a definite effect on a child’s health and developmental outcomes after birth,” said Veronica Fitzpatrick, DrPH, co-investigator for the study. “But we do not always understand what those outcomes are and why they happen, largely because we lack the long-term data that links pregnant people and their children all the way through early childhood.”
Historically, the national data for pregnant person-infant pairings is poor quality, includes errors in patient identifiers or is missing entirely.
Additionally, this gap in national data disproportionately affects people of color, as differences in what information is missing or incorrect can produce biased results, limit the generalizability of research findings, and contribute to the widening health gaps between White people and people of color.
The Research Institute’s scientists and data analytics team will begin by evaluating the health system’s current data landscape for pregnant people-infant pairings and then work to improve the quality of that data by documenting patterns of missing or incomplete information. They will then seek to improve the future collection and dissemination of this data by expanding coordination with the health system’s community partners.
“Enabling long-term monitoring of pregnant people and their children through early childhood is essential for our country’s ability to improve health outcomes for these populations, identify and address disparities, and positively impact public health,” said Denise Angst, PhD, RN, Vice President of Academic Research and Strategic Partnerships. “The Research Institute is proud that our scientists and our health system are leaders in this essential work.”
This project is supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $480,272 in year one with 100% funded by CDC/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, CDC/HHS, or the U.S. Government.
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