Circulation. 2023 Sep 26;148(13):1061-1069. doi: 10.1161/CIR.0000000000001173. Epub 2023 Aug 30.
The evolution of the electronic health record, combined with advances in data curation and analytic technologies, increasingly enables data sharing and harmonization. Advances in the analysis of health-related and health-proxy information have already accelerated research discoveries and improved patient care. This American Heart Association policy statement discusses how broad data sharing can be an enabling driver of progress by providing data to develop, test, and benchmark innovative methods, scalable insights, and potential new paradigms for data storage and workflow. Along with these advances come concerns about the sensitive nature of some health data, equity considerations about the involvement of historically excluded communities, and the complex intersection of laws attempting to govern behavior. Data-sharing principles are therefore necessary across a wide swath of entities, including parties who collect health information, funders, researchers, patients, legislatures, commercial companies, and regulatory departments and agencies. This policy statement outlines some of the key equity and legal background relevant to health data sharing and responsible management. It then articulates principles that will guide the American Heart Association's engagement in public policy related to data collection, sharing, and use to continue to inform its work across the research enterprise, as well as specific examples of how these principles might be applied in the policy landscape. The goal of these principles is to improve policy to support the use or reuse of health information in ways that are respectful of patients and research participants, equitable in impact in terms of both risks and potential benefits, and beneficial across broad and demographically diverse communities in the United States.
电子健康记录的发展，结合数据管理和分析技术的进步，越来越能够实现数据共享和协调。健康相关和健康代理信息分析的进步已经加速了研究发现并改善了患者护理。本美国心脏协会政策声明讨论了广泛的数据共享如何通过提供数据来开发、测试和基准创新方法、可扩展的见解以及数据存储和工作流程的潜在新范例，成为推动进展的有利驱动因素。随着这些进步，人们对一些健康数据的敏感性、关于历史上被排除在外的社区参与的公平性考虑以及试图规范行为的法律的复杂交叉问题感到担忧。因此，数据共享原则对于包括收集健康信息的各方、资助者、研究人员、患者、立法机构、商业公司以及监管部门和机构在内的广泛实体都是必要的。本政策声明概述了与健康数据共享和负责任的管理相关的一些关键公平和法律背景。然后，它阐述了将指导美国心脏协会参与与数据收集、共享和使用相关的公共政策的原则，以继续为其在整个研究企业中的工作提供信息，并提供了这些原则在政策领域可能应用的具体示例。这些原则的目标是改善政策，以支持以尊重患者和研究参与者的方式使用或重复使用健康信息，在风险和潜在利益方面公平影响，并在美国广泛和人口多样化的社区中受益。
