Brown School, Washington University in St. Louis, St. Louis, MO.
Health Care Evaluation, NORC at the University of Chicago, Bethesda, MD.
Med Care. 2023 Jul 1;61(7):462-469. doi: 10.1097/MLR.0000000000001862. Epub 2023 May 22.
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.
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.
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.
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.
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.
患者越来越关注医疗保健选择的经济负担和影响数据；护理人员、雇主和付款人也对这些成本感兴趣。尽管联邦政府在以患者为中心的结果研究（PCOR）方面进行了各种投资，但迄今为止尚未对联邦资助的数据在 PCOR 经济评估中的覆盖范围和差距进行评估。
对 PCOR 经济成本的相关类别进行分类，评估当前联邦资助数据对这些类别的覆盖范围，并确定未来研究和收集的差距。
进行了有针对性的互联网搜索，以确定相关结果和数据源列表。研究小组评估了数据源对经济结果的覆盖范围。技术小组和关键意见访谈用于评估和反馈。
确定了 4 种正规医疗保健部门成本、3 种非正规医疗保健部门成本和 10 种非医疗保健部门成本，这些成本与 PCOR 经济评估相关。确定了 29 个联邦资助的数据源。大多数包含正规成本要素。关于非正式成本（例如，交通）的数据较少，非医疗保健部门成本（例如，生产力）则最少。大多数数据源都是年度、横断面、全国代表性的个人层面调查。
现有的联邦数据基础设施涵盖了健康和医疗保健经济负担的许多方面，但仍存在差距。来自多个数据源的研究和潜在的未来整合可能会弥补单个数据源的差距。链接是未来以患者为中心的经济结果研究的有前途的策略。
