Linking the Boston Birth Cohort and Pregnancy to Early Life Longitudinal Data System to Assess Patient-Centered Maternal and Infant Health: A Longitudinal Cohort of Mother-Child Dyads

BACKGROUND

The U.S. pregnancy-related mortality ratios (PRMRs) and severe maternal morbidity (SMM) remain high and varied between populations. In 2021, the highest PRMRs were among non-Hispanic American Indian/Alaska Native, non-Hispanic Native Hawaiian and Other Pacific Islander, and non-Hispanic Black women. PRMRs were also high among women living in rural areas. Many factors contribute to these PRMRs, including community factors, which are key drivers of poor maternal health outcomes as well as women’s health in later life.

A variety of data sources have been used to study maternal health, such as data from birth certificates, surveys, surveillance systems, registries, electronic health records, medical claims, hospital discharge records, and clinical trials. Researchers have also linked some of these data sources to provide a more expansive dataset for exploring these important issues. However, there is a lack of long-term longitudinal data, including data on maternal and pregnancy characteristics, community factors that impact a person’s health, health care factors, health services utilization, and environmental measures to adequately explore the associations between a mother’s health, her future health, and her offspring’s health.

PURPOSE

This study aims to fill these gaps by linking data from the Boston Birth Cohort (BBC) and Pregnancy to Early Life Longitudinal Data System (PELL); two longitudinal cohorts with mother-child dyads, and census tract-level data from the Agency for Healthcare Research and Quality (AHRQ) captures additional information, including community factors. This will generate a longitudinal data resource for assessing patient-centered maternal and infant health outcomes. 

The primary goals and objectives of this project are to:

1. Analyze the data governance process, obtain approval and authorization for record linkage, link BBC and PELL data, and add other data sets, environmental exposures and neighborhood characteristics;
2. Explore and establish a process to maximize sharing of the linked BBC-PELL data set with other federal/state partners and researchers;
3. Test the data access and sharing processes and experiences with end users;
4. Conduct research to advance maternal health priorities such as:
   1. How housing and the surrounding community contribute to maternal health outcomes.
   2. What factors contribute to maternal stress and their impact on maternal health outcomes.
   3. What factors impact the risk and management of maternal hypertensive disorders and to what these disorders affect future CVD risk.
   4. Whether and how different factors impact postpartum health.
   5. Whether and how environmental factors affect maternal health risk factors and outcomes.

KEY IMPACT

• Enhanced data capacity for patient-centered maternal and infant health outcomes research by linking and making available BBC-PELL dataset with rich, complex, multi-dimensional, and multi-sectional data, including data on at least two generations from surveys, biomarkers including genome data, hospital discharge records, vital statistics, program data, and other data sources.
• Increased access to these data for researchers conducting patient centered outcomes through a data repository that will ensure the data are “FAIR” (Findable, Accessible, Interoperable and Reusable)
• Protected data sharing by complex government and Institutional Review Board (IRB) regulations, patient consent, and confidentiality considerations. By exploring and developing the process to maximize data sharing for the linked BBC-PELL, this project can inform other data linkages with data resources with similar IRB and patient consent challenges.
• Expanded utility of the BBC data by making available the linkage methodology, thereby facilitating its application to other birth cohorts in the future.