Data & Information Infrastructure

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

Provider directories are lists of in-network providers produced by health care plans. They are an important tool for individuals seeking health care providers, and for regulators who monitor the adequacy of health plans’ provider networks.

This brief describes progress in the Child Welfare and Health Infrastructure for Linking and Data Analysis of Resources, Effectiveness, and Needs (CHILDREN) Initiative, which is entering its second year. At this time, four jurisdictions have been selected for participation in the CHILDREN Initiative and are engaging in feasibility studies to determine readiness for linking data.

This report is the third in a series of reports commissioned by the Office of the Assistant Secretary for Planning and Evaluation (ASPE) from the RAND Corporation addressing state all payer claims databases (APCDs). APCDs include medical, pharmacy, and dental claims, as well as enrollment and provider files collected from private and public payers by states, usually as part of a State mandate.

This brief describes a joint project of the ASPE and the Office of Refugee Resettlement in the Administration for Children and Families to enhance the data infrastructure of agencies managing refugees and Medicaid services. This project is funded by the Patient-Centered Outcomes Research Trust Fund.