Data & Information Infrastructure

The goal of this project was to strengthen the coordinated registry network as a real-world data source for high quality, relevant, reliable, timely and actionable evidence to improve patient outcomes of medical devices, specifically for technologies affecting women’s health.

The 2022 Office of the Secretary Patient-Centered Outcomes Research Trust Fund (OS PCORTF) Annual Report and infographic highlights the accomplishments of 32 multi-agency projects that supports the four goals of the new strategic plan: 

This report provides information to state, tribal, and local child welfare and behavioral health agencies that are interested in linking their Medicaid and child welfare data.

ASPE recently published a narrative review in PLOS Digital Health exploring how synthetic data are being used. Researchers searched published literature and known, publicly available synthetic datasets.

This updated 2022 vignette provides examples of how a range of Office of the Secretary Patient-Centered Outcomes Research Trust Fund (OS-PCORTF) cross-agency projects are working to address the opioid overdose crisis by 1) Improving Timeliness and Quality of Outcomes Data 2) Building Capacity for Collection of Patient-Reported Outcomes 3) Building Linkages to Address Co-Morbidities

This updated 2022 vignette provides examples of how a range of the Office of the Secretary Patient-Centered Outcomes Research (OS-PCORTF) cross-agency projects are working to improve maternal health by 1) Enhancing Women’s Health Data for Research 2) Adding Electronic Health Records to the Suite of Maternal Health Data for Research 3) Linking Maternal Survey Data with Other Health Data.

This report and dataset inventory identifies federally funded data linkages that may facilitate patient-centered outcomes research (PCOR) on economic outcomes for Medicare fee-for-service (FFS) beneficiaries.

The Department of Health and Human Services (HHS) has several different policy groups such as the HHS Data Council, Data Governance Board, Evidence and Evaluation Policy Council, and the HHS AI Council that frequently use many terms related to data, but likely with inconsistent understanding of their definitions and how these terms should be used.

This report describes insights gained from key informant interviews and an ASPE-hosted listening session on short-term opportunities for improving patient-centered outcomes research (PCOR) data infrastructure that addresses the needs of individuals with intellectual and developmental disabilities (ID/DD). Related Products:

This posting includes a report prepared by the RAND Corporation, “State All Payer Claims Databases Understanding the Current Landscape and Challenges to Use,” which builds on a 2021 report “The History, Promise and Challenges of State All Payer Claims Databases.” The new report provides additional detail on the objectives of and use cases for APCDs, the current APCD landscape, and implementati