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.
Data
ASPE uses and produces data as key components of its work. ASPE studies and assesses data and how it is captured, managed, analyzed and protected, including the interplay of the sources, systems, standards for data that support policy, practice and research.
ASPE also co-chairs the HHS Data Council, which is the principal internal advisory body to the Secretary on health and human services data policy. The Council coordinates data policy activities in HHS, including the development and implementation of an HHS data strategy, and conducts research to improve long-term collection and use of HHS data.
ASPE’s work involves many types of data produced by HHS and other governmental programs and other partners. For example:
- Through its Foundations for Evidence-Based Policies Act of 2018 (“Evidence Act”) and Data Council responsibilities, ASPE leads HHS efforts to improve the quality and accessibility of its data assets.
- Through its investments under the aegis of the Office of the Secretary Patient-Centered Outcomes Research Trust Fund (OS-PCORTF), ASPE supports interoperability through such products as linked datasets involving mortality data, HL7 implementation guides in support of FHIR for research use of electronic health records, claims and other data, and natural language processing approaches.
- Through the use of ASPE-developed supplemental data tables, ASPE has developed issue brief series examining options before and after the passage of the American Rescue Plan Act of 2021 (ARP).
- Through its issue briefs such as this brief on Medicare Telehealth utilization trends, ASPE provides unique and timely data and analyses on important policy issues.
- Pursuant to the Social Security Act, ASPE annually calculates and publishes the Federal Medical Assistance Percentage (FMAP), enhanced Federal Medicaid Assistance Percentage (e-FMAP), and disaster-recovery FMAP for all states, the District of Columbia, and territories. The FMAP is used to determine federal funding for Medicaid/CHIP, Temporary Assistance for Needy Families (TANF) Contingency Funds, and other public programs. The FY 2022 FMAP notice was published in the Federal Register on November 30, 2020.
Noteworthy
Reports
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Advanced SearchASPE Issue Brief
Opportunities for Technology-Enabled Care: Economic and Payment Issues
This Issue Brief explores opportunities that technology-enabled care (TEC) offers to help meet patient and provider needs for high-valued coordinated care to improve health outcomes. It explores literature surrounding existing available TEC options, as well as economic and payment issues that influence whether this is taken up.
Report to Congress, Visualization
Welfare Indicators and Risk Factors, Twenty-Fourth Report to Congress
The Welfare Indicators Act of 1994 (Public Law 103-432) requires the Secretary of the Department of Health and Human Services to prepare an annual report to Congress on indicators and predictors of “welfare dependence.” That Act requires the report to include three programs: Temporary Assistance for Needy Families (TANF) program (which replaced the Aid to Families with Dependent Children (AFDC)
Report
Multistate EMS and Medicaid Dataset (MEMD): A Linked Dataset for Patient-Centered Outcomes Research: Final Report
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.
Report
2026 HHS Evaluation Plan
The Fiscal Year (FY) HHS 2026 Evaluation plan includes four (4) evaluations reflecting evidence-building activities in different Operating and Staff Divisions across the U.S. Department of Health and Human Services (HHS). The selected evaluations highlight activities that will generate actionable evidence in FY 2026 on priority topics.
Report
Engaging Patients to Enhance Data for Health Outcomes Research
To help patients make informed choices about their care, the United States Department of Health and Human Services (HHS) is improving the quality and accessibility of data needed to determine which treatments and care options work best.
ASPE Issue Brief, Policy Brief
Linking Health and Human Services Data Can Empower Patient Decisions and Increase Efficiency
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.
ASPE Issue Brief, Fact Sheet
Health Care and Child Care Costs Contribute to the Unsustainable and Growing Cost of Raising a Family in America
The cost of raising a family in America is high and continues to rise, with inflation rising by 23 percent between 2020 and 2025. For working families, some of the largest nondiscretionary expenses continue to be health care and child care.
ASPE Data Point
HHS Standard Values for Regulatory Analysis
The U.S. Department of Health and Human Services (HHS) analyzes the benefits, costs, and other impacts of significant proposed and final rulemakings, consistent with the requirements of several executive orders and statutes. HHS develops these analyses according to technical guidance published by the U.S.
ASPE Issue Brief
Postpartum Health Care Use in Medicaid During the COVID-19 Public Health Emergency: Implications for Extending Postpartum Coverage
This Issue Brief provides a descriptive analysis of postpartum health care use among the Medicaid population before and during the PHE, when the continuous enrollment condition was in effect.