Data & Information Infrastructure

Artificial intelligence (AI) tools, particularly those that use natural language processing (NLP), are becoming increasingly prominent in healthcare delivery. For these systems to operate safely and reliably in clinical settings, they require high-quality training datasets drawn from multiple sources, including electronic health record (EHR) data, that closely reflect real-world conditions.

The United States (U.S.) faces urgent health challenges, including poor maternal and childhood health outcomes, childhood obesity, opioid use disorder, cancer, and chronic conditions, which require personalized care tailored to each patient’s unique circumstances.

The overall goal of the project is to expand the utility of National Center for Health Statistics (NCHS) linked data resources to support patient-centered outcomes research (PCOR) through the development of publicly available synthetic linked data files.

This summary highlights key findings from this study. Readers are encouraged to download the full report for complete details and analysis.

In Fiscal Year 2025, OS-PCORTF projects and other OS-PCORTF initiatives collectively enhanced the data infrastructure available for patient-centered and comparative clinical effectiveness research (CER) across national and HHS health objectives.

This 2024 vignette provides examples of how a range of OS-PCORTF cross-agency projects are working to improve maternal health by 1)Reducing Preventable Pregnancy-Related Deaths and Improving Maternity Care 2) Studying Substance Use Treatment Outcomes for Pregnant Women 3) Representing all American Mothers and Children in Research Data

This report is to serve as a data source guide that helps policymakers and researchers understand the current data infrastructure landscape for SCD-focused health outcomes research. Specifically, the goals are to identify existing SCD data sources and data dashboards as well as key considerations to enhance data collection and use.

The U.S. Department of Health and Human Services (HHS) Office of the Assistant Secretary for Planning and Evaluation (ASPE) led the Multistate EMS and Medicaid Dataset (MEMD): A Linked Dataset for Patient-Centered Outcomes Research project which received funding in 2021 by the Office of the Secretary of HHS’s Patient-Centered Outcomes Research Trust Fund.

This brief describes how enhancing linked data infrastructure across health and human services programs can improve efficiency, increase transparency through strengthening outcomes research, and empower patients and families to make more informed choices.

The 2024 Office of the Secretary Patient-Centered Outcomes Research Trust Fund (OS-PCORTF) Annual Report highlights the data infrastructure accomplishments of over 40 multi-agency projects on topics of national importance such as maternal health, substance use disorder and intellectual and developmental disabilities.