Truveta releases largest mother–child EHR dataset for maternal and pediatric research

Truveta has released the largest mother–child electronic health record (EHR) dataset with over 1 million pairs, enabling comprehensive maternal and pediatric research while ensuring regulatory compliance.

CEO and co-founder of Truveta, Terry Myerson, emphasized the significance of this dataset in bridging the gap in research, stating,

“Perinatal women and their children have long been excluded from clinical trials and other retrospective data sources, and we can’t understand the full effects of medications, vaccines, and diseases on their connected health outcomes. Truveta now offers the largest mother–child EHR dataset, empowering researchers to advance care for all mothers and children with complete, timely, and representative data.”

Healthcare research faces challenges due to fragmented data sources and privacy concerns, impeding understanding of maternal and pediatric health outcomes. Truveta addresses this by connecting de-identified EHR data from millions of mothers to their children, facilitating meaningful improvements in health care. With over one million pairs, Truveta offers the largest mother–child EHR dataset, delivering regulatory-grade data including clinician notes, images, and more. Key features include:

1. Complete EHR data: Truveta provides comprehensive EHR data from over 30 health systems, linked with claims, social determinants of health (SDOH), and mortality data, with access to more than 100 million de-identified patients across the US, offering unparalleled depth for research.
2. Comprehensive mother–child data: Truveta accurately connects EHR records of more than one million mothers and their children, preserving critical data elements such as demographics, medical history, pregnancy outcomes, and more, including key delivery-related information.
3. Regulatory-grade compliance: Truveta ensures regulatory-grade compliance for privacy and security, meeting rigorous standards including HIPAA compliance. Their de-identification process is certified to meet HIPAA Privacy Rule standards, with additional security and privacy controls in place, earning completion of Type 2 SOC 2 examination and ISO 27001 certification with ISO 27018 and ISO 27791 extensions.

Dr Sarah Stewart, practicing pediatrician and Clinical Informaticist, Truveta, stated,

“Having the right data is not just essential, it’s the cornerstone of understanding maternal and pediatric health. Healthcare research has long been challenged by fragmented data sources and privacy concerns in connecting maternal and pediatric health records, limiting our ability to understand them in relation to one another. With the availability of the largest and most complete mother–child EHR dataset in Truveta, researchers will be able to identify trends, evaluate interventions, and make informed decisions that can profoundly impact the health and well-being of both mothers and children, from pregnancy through early childhood development.”

These features enable researchers to study mothers and children throughout the entire pregnancy journey and beyond, including:

• Understanding the connection between maternal health and neonatal outcomes such as preterm delivery, neurodevelopmental outcomes, and childhood conditions up to age 5.
• Monitoring post-market safety data for medications or vaccines received by mothers during pregnancy, identifying outcomes like conditions, hospitalizations, and deaths observed in children.
• Studying the effects of Category C medications during pregnancy on children, including assessing potential risks and benefits.
• Exploring correlations of pediatric conditions with birth mothers’ demographics, SDOH indicators, medical history, and pregnancy outcomes.

Comparable datasets often rely on claims data, which may lack detail on clinical outcomes and patient journeys. Truveta data addresses these challenges by providing a comprehensive, longitudinal view of patient care, empowering researchers to make significant strides in maternal and pediatric health care.

Dr Emily Garrett, obstetrician and gynecologist at Providence, highlighted the importance of prioritizing maternal research, saying,

“We are in the midst of a maternal health crisis in the United States. Prioritization of maternal research is essential to save the lives of mothers and ensure the best outcomes for their children. Truveta’s ever-growing dataset provides the data we need to advance our understanding. The more we understand, the more awareness it creates among fellow physicians, patients, and policy makers.”