Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Oct 25, 2022
Date Accepted: Mar 31, 2023
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
A summary of federal government, health-related data sources accessible to health researchers: A mapping review
ABSTRACT
Background:
Big data from large, government-sponsored surveys and datasets offers researchers opportunities to conduct population-based studies of important health issues in the U.S., as well as develop preliminary data to support proposed future work. Yet, navigating these national data sources is challenging. Despite expanding availability of national data, there is little guidance for researchers on how to access and evaluate the utility of these resources.
Objective:
Our aim was to identify and summarize a comprehensive list of federally-sponsored, health- and healthcare-related data sources that are accessible in the public domain in order to facilitate their use by researchers.
Methods:
We conducted a systematic mapping review of government sources of health-related data on U.S. populations and with active or recent (previous 10 years) data collection. 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.
Results:
Among 106 unique data sources, 57 met inclusion criteria. Data sources were classified as survey or assessment data (53%), trends data (47%), summative processed data (47%), primary registry data (30%), and evaluative data (19%). Most (68%) served more than one purpose. The population of interest included individuals/patients (70%), providers (26%), and healthcare sites/systems (25%). The sources collected data on demographic (77%) and clinical information (61%), health behaviors (42%), provider or practice characteristics (39%), healthcare costs (30%), and laboratory tests (14%). Most (75%) offered free datasets.
Conclusions:
A broad scope of national health data is accessible to researchers. These data provide insights into important health issues and the nation’s healthcare 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. Clinical Trial: None/not applicable.
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