背景:来自大型的大数据,政府赞助的调查和数据集为研究人员提供了对美国重要健康问题进行基于人群的研究的机会,以及开发初步数据以支持拟议的未来工作。然而,导航这些国家数据源具有挑战性。尽管国家数据广泛可用,对于研究人员如何访问和评估这些资源的使用,几乎没有指导。
目的:我们的目的是确定并总结一份完整的联邦赞助清单,可在公共领域访问的与健康和医疗保健相关的数据源,以方便研究人员使用它们。
方法:我们对美国人口健康相关数据的政府来源以及积极或最近(前10年)的数据收集进行了系统的绘图审查。关键措施是政府赞助,数据的概述和目的,感兴趣的人口,采样设计,样本量,数据收集方法,数据类型和描述,以及获取数据的成本。使用聚合合成来汇总发现。
结果:在106个独特的数据源中,57符合纳入标准。数据源被分类为调查或评估数据(n=30,53%),趋势数据(n=27,47%),求和处理数据(n=27,47%),主要注册表数据(n=17,30%),和评估数据(n=11,19%)。大多数(n=39,68%)服务于1个以上的目的。感兴趣的人群包括个人/患者(n=40,70%),提供者(n=15,26%),以及医疗保健场所和系统(n=14,25%)。来源收集了人口统计学(n=44,77%)和临床信息(n=35,61%)的数据,健康行为(n=24,42%),提供者或实践特征(n=22,39%),医疗保健费用(n=17,30%),和实验室测试(n=8,14%)。大多数(n=43,75%)提供免费数据集。
结论:研究人员可以获得广泛的国家健康数据。这些数据提供了对重要健康问题和国家医疗保健系统的见解,同时消除了主要数据收集的负担。数据标准化和统一性在政府实体中并不常见,强调需要提高数据一致性。对国家数据进行二次分析是可行的,解决国家健康问题的成本效益方法。
Big data from large, government-sponsored surveys and data sets offers researchers opportunities to conduct population-based studies of important health issues in the United States, as well as develop preliminary data to support proposed future work. Yet, navigating these national data sources is challenging. Despite the widespread availability of national data, there is little guidance for researchers on how to access and evaluate the use of these resources.
Our aim was to identify and summarize a comprehensive list of federally sponsored, health- and health care-related data sources that are accessible in the public domain in order to facilitate their use by researchers.
We conducted a systematic mapping
review of government sources of health-related data on US populations and with active or recent (previous 10 years) data collection. The key measures were government sponsor, overview and purpose of data, population of interest, sampling design, sample size, data collection methodology, type and description of data, and cost to obtain data. Convergent synthesis was used to aggregate findings.
Among 106 unique data sources, 57 met the inclusion criteria. Data sources were classified as survey or assessment data (n=30, 53%), trends data (n=27, 47%), summative processed data (n=27, 47%), primary registry data (n=17, 30%), and evaluative data (n=11, 19%). Most (n=39, 68%) served more than 1 purpose. The population of interest included individuals/patients (n=40, 70%), providers (n=15, 26%), and health care sites and systems (n=14, 25%). The sources collected data on demographic (n=44, 77%) and clinical information (n=35, 61%), health behaviors (n=24, 42%), provider or practice characteristics (n=22, 39%), health care costs (n=17, 30%), and laboratory tests (n=8, 14%). Most (n=43, 75%) offered free data sets.
A broad scope of national health data is accessible to researchers. These data provide insights into important health issues and the nation\'s health care system while eliminating the burden of primary data collection. Data standardization and uniformity were uncommon across government entities, highlighting a need to improve data consistency. Secondary analyses of national data are a feasible, cost-efficient means to address national health concerns.