Gabriel Seidman and Ahmad AlKasir are with the Ellison Institute of Technology, Los Angeles, CA. Kate Ricker is with Amelia Mayme Consulting, Denver, CO. J. T. Lane is with the Association of State and Territorial Health Officials (ASTHO), Arlington, VA. Anne Zink is with the Alaska Department of Health, Anchorage, and ASTHO. Michelle Williams is with Harvard T. H. Chan School of Public Health, Boston, MA.
Am J Public Health. 2024 Feb;114(2):209-217. doi: 10.2105/AJPH.2023.307477. Epub 2024 Jan 11.
The COVID-19 pandemic highlighted the United States' lack of a nationwide infrastructure for collecting, sharing, and using health data, especially for secondary uses (e.g., population health management and public health). The federal government is taking several important steps to upgrade the nation's health data ecosystem-notably, the Centers for Disease Control and Prevention's Data Modernization Initiative and the Office of the National Coordinator for Health Information Technology's Trusted Exchange Framework and Common Agreement. However, substantial barriers remain. Inconsistent regulations, infrastructure, and governance across federal and state levels and between states significantly impede the exchange and analysis of health data. Siloed systems and insufficient funding block effective integration of clinical, public health, and social determinants data within and between states. In this analytic essay, we propose strategies to develop a nationwide health data ecosystem. We focus on providing federal guidance and incentives to develop state-designated entities responsible for the collection, integration, and analysis of clinical, public health, social determinants of health, claims, administrative, and other relevant data. These recommendations include a regulatory clearinghouse, federal guidance, model legislation and templated regulation, funding to incentive enterprise architecture, regulatory sandboxes, and a 3-pronged research agenda. ( 2024;114(2):209-217. https://doi.org/10.2105/AJPH.2023.307477).
新冠疫情凸显了美国在收集、共享和使用健康数据方面缺乏全国性基础设施，特别是在二次利用方面（例如，人群健康管理和公共卫生）。联邦政府正在采取几项重要措施来升级国家的健康数据生态系统——特别是疾病控制与预防中心的数据现代化倡议和国家卫生信息技术协调员办公室的可信交换框架和共同协议。然而，仍然存在重大障碍。联邦和州层面以及各州之间在法规、基础设施和治理方面的不一致，严重阻碍了健康数据的交换和分析。孤立的系统和资金不足阻碍了临床、公共卫生和社会决定因素数据在州内和州际之间的有效整合。在这篇分析性文章中，我们提出了建立全国性健康数据生态系统的策略。我们专注于为负责收集、整合和分析临床、公共卫生、健康社会决定因素、索赔、行政和其他相关数据的州指定实体提供联邦指导和激励。这些建议包括监管信息交换所、联邦指导、示范立法和模板法规、激励企业架构的资金、监管沙盒以及三管齐下的研究议程。（2024 年；114（2）：209-217。https://doi.org/10.2105/AJPH.2023.307477）。
