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Federal Data for Conducting Patient-Centered Outcomes Research on Economic Outcomes

Publication Date
Brown D, Srinivasan M, Arbulu L, Dullabh P, Curtis K, Zott C, and Smith SR.

The objective of this report is to assess the current landscape of federal and federally funded health care data relevant to PCOR and economic analysis to identify gaps for data stewards, researchers, and future collection efforts. A targeted internet search was conducted to identify a list of outcomes relevant to PCOR economic evaluations, and federal and federally funded data sources that contain information on identified economic outcomes. Information from the search was supplemented by semi-structured individual interviews with nine key informants representing researchers, data stewards, and patient representatives. The existing federal data infrastructure captures a limited range of the full economic burden of health and health care, when considering the perspectives of patients, caregivers, employers, and insurers. No single source exists that spans the full range and all perspectives, but research from multiple data sources, and potential future data integrations, can fill in important gaps. Data linkages appear to be an efficient and important strategy for improving PCOR-relevant economic burden studies. Further standardization of PCOR economic measures across data sources may also improve comparability and utility of research findings for patients, caregivers, employers, and insurers.

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