Data & Information Infrastructure

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.

The U.S. behavioral health (BH) workforce faces significant shortages and distribution disparities, hindering access to quality care and worsening health outcomes. A comprehensive, centralized database of BH providers is vital for advancing patient-centered outcomes research (PCOR), comparative effectiveness research (CER), and evidence-based policymaking.

This report outlines a feasibility study focused on obtaining identifiers for self-directed Home and Community-Based Services (HCBS) users within Medicaid claims data. Financial Management Services (FMS) entities assist individuals in managing the financial aspects of self-directed care, including payroll and billing.

The 2023 Office of the Secretary Patient-Centered Outcomes Research Trust Fund (OS-PCORTF) Annual Report highlights the accomplishments of 36 multi-agency projects that supports the four goals of the strategic plan:

On April 25, 2024, HHS and DoL released recommendations, in the form of an Issue Brief, to improve data infrastructure on the workforce delivering home and community-based services (HCBS) in response to President Biden’s