Federal Data for Conducting Patient-centered Outcomes Research on Economic Outcomes.

Area of Science:

• Health Economics
• Health Services Research
• Patient-Centered Outcomes Research (PCOR)

Background:

• Growing patient, caregiver, employer, and payer interest in the economic impact of health care decisions.
• Federal investments in patient-centered outcomes research (PCOR) have occurred, but a comprehensive assessment of data for economic evaluations is lacking.
• Need for systematic evaluation of federally funded data supporting economic analyses in PCOR.

Purpose of the Study:

• To categorize economic costs relevant to PCOR.
• To evaluate the coverage of these costs within existing federally funded data sources.
• To identify gaps in data collection for future PCOR economic evaluations.

Main Methods:

• Conducted a targeted internet search to identify relevant economic outcomes and data sources.
• Assessed 29 federally funded data sources for their coverage of identified economic cost categories.
• Utilized a technical panel and key informant interviews for expert evaluation and feedback.

Main Results:

• Identified 17 categories of economic costs relevant to PCOR (4 formal, 3 informal, 10 non-health care sectors).
• Most federal data sources captured formal health care costs, with less coverage for informal (e.g., transportation) and non-health care costs (e.g., productivity).
• The majority of assessed data sources were annual, cross-sectional, nationally representative individual-level surveys.

Conclusions:

• Federal data infrastructure partially addresses the economic burden of health and healthcare for PCOR, but significant gaps persist.
• Integrating data from multiple sources and exploring data linkages are crucial strategies to fill identified gaps.
• Future research focusing on patient-centered economic outcomes can be strengthened by addressing these data limitations and leveraging linkage opportunities.