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

STATUS: Completed Project

BACKGROUND 
The Pregnancy Risk Assessment Monitoring System (PRAMS) was 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 collected 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 addressed 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 allowed 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. 

PURPOSE

This project linked 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 by: 

• Launching 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. 
• Creating standardized methodology for developing linked data sets and offer technical assistance to participating states in utilizing the methodology to link data. 
• Carrying out priority analyses for patient-centered outcomes research, using the linked data set, to improve maternal and infant health. 
• Developing a process to host linked data and allow external researchers’ access to these data sets.

KEY IMPACTS 
Enhancing analytical resources: Framework to support data linkages with administrative data 
State agencies can use the Framework for Linking PRAMS with Administrative Data to plan for and implement sustainable linkages, including processes for cleaning, standardizing, and linking PRAMS data with other administrative data sources, such as vital records or T-MSIS data.

Addressing national priorities for health: Timely data on maternal and infant health outcomes 
By providing technical assistance to states, this project increased the amount of relevant comprehensive maternal health data available to conduct patient-centered outcomes research. The project assisted 11 states in successfully linking Pregnancy Risk Assessment Monitoring System (PRAMS) survey data with clinical and/or administrative data, which can be used for future analyses on maternal and child health outcomes (e.g., maternal morbidity and mortality).

Providing more relevant and comprehensive data: Establishment of multi-state data linkage learning network 
This project established a coordinating center that supports a PRAMS Data Linkage Learning Community, whose goal was to create a network of states as they build capacity to link PRAMS data and clinical and administrative datasets (e.g., birth certificates, hospital discharge, Medicaid claims, all payer claims data bases). The learning community aimed to provide technical assistance to help states link PRAMS and clinical outcomes data and catalog project activities to support replication and sustainability of the linkages.

PUBLICATIONS  
Overcoming Common Barriers to Data Linkage. This brief outlines lessons learned in data linkage for public health, focusing on partnerships, data matching, and sustainability.

Linking Datasets to Address Racial Equity in Maternal and Child Health Outcomes. This brief highlights the use of PRAMS data across Massachusetts, Georgia, and California. 

Leveraging Data Linkage to Address Adverse Childhood Experiences. This blog post explores the use of surveillance data to allow public health practitioners and researchers to track changes in the burden of ACEs.

Strengthening Material and Infant Health Data in Territories. This brief highlights the work of maternal and infant health surveillance using PRAMS in Puerto Rico and Commonwealth of the Northern Mariana Islands, as well as the potential to gain further insights into maternal and infant health outcomes using data linkage methods.

Project Final Report. This report highlights data linkage activities from each state, capacity building and technical assistance offerings from the project, lessons learned, and future recommendations.