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

Background: Patients are increasingly interested in data on the economic burdens and impacts of health care choices; caregivers, employers, and payers are also interested in these costs. Although there have been various federal investments into patient-centered outcomes research (PCOR), an assessment of the coverage and gaps in federally funded data for PCOR economic evaluations has not been produced to date. Objectives: To classify relevant categories of PCOR economic costs, to assess current federally funded data for coverage of these categories, and to identify gaps for future research and collection. Research Design: A targeted internet search was conducted to identify a list of relevant outcomes and data sources. The study team assessed data sources for coverage of economic outcomes. A technical panel and key informant interviews were used for evaluation and feedback. Results: Four types of formal health care sector costs, 3 types of informal health care sector costs, and 10 types of non-health care sector costs were identified as relevant for PCOR economic evaluations. Twenty-nine federally funded data sources were identified. Most contained elements on formal costs. Data on informal costs (eg, transportation) were less common, and non-health care sector costs (eg, productivity) were the least common. Most data sources were annual, cross-sectional, nationally representative individual-level surveys. Conclusions: The existing federal data infrastructure captures many areas of the economic burden of health and health care, but gaps remain. Research from multiple data sources and potential future integrations may offset gaps in individual data sources. Linkages are promising strategies for future research on patient-centered economic outcomes.