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Developing a Multi-State Network of Linked Pregnancy Risk Assessment Monitoring System (PRAMS) and Clinical Outcomes Data for Patient-Centered Outcomes Research

Enrich Maternal and Infant Health Research through Linkage of Multi-faceted Patient Data
Agency
  • Centers for Disease Control and Prevention (CDC)
Start Date
  • 11/01/2020
Functionality
  • Linking of Clinical and Other Data for Research
  • Use of Enhanced Publicly-Funded Data Systems for Research

 

STATUS: Active Project

BACKGROUND

Research on programmatic and clinical interventions to improve maternal and infant health requires rich data sets that link data from multiple sources. In particular, it is crucial that data sets have sufficient information to facilitate analyses that account for the social context and social determinants that influence maternal and infant health outcomes. The Pregnancy Risk Assessment Monitoring System (PRAMS) is a state-specific, population-based survey of women with a recent live birth that is conducted in 47 states, the District of Columbia, New York City, and Puerto Rico, representing approximately 83% of births each year. The survey collects data on maternal attitudes and experiences related to their pregnancies including information about chronic conditions, mental health, health behaviors and use of health and social services. While PRAMS is an essential data resource on maternal and infant health, linking these self-reported responses with other maternal and infant health data would provide fuller context of the complex system under which outcomes occur.

This project addresses this gap by building on PRAMS infrastructure, linking its survey data with clinical outcomes such as hospital discharge, Medicaid claims, intervention services, and more. Linking these data will allow for a more robust exploration of maternal and infant health outcomes by disentangling the factors that contribute to varying results. Gaining a deeper understanding of these interrelated factors enables experts to conduct well-informed, patient-centered research, clarify health priorities, and translate evidence-based findings into relevant federal and state health policy.

PROJECT PURPOSE & GOALS

This project will link PRAMS to clinical outcomes data and other data to create a research database that includes a wide range of factors related to maternal and infant health outcomes.

This project will address the following objectives:

  • Launch a coordinating center to assist a multi-state learning community in connecting PRAMS and clinical outcome data and catalog project activities to support replication and sustainability.

  • Create standardized methodology for developing linked data sets and offer technical assistance to participating states in utilizing the methodology to link data.

  • Carry out priority analyses for patient-centered outcomes research, using the linked data set, to improve maternal and infant health.

  • Develop a process to host linked data and allow external researchers’ access to these data sets.