Organisation for Economic Co-operation and Development, 2, Rue André Pascal, 75775 Paris Cedex 16, France.
Health Policy. 2013 Sep;112(1-2):9-18. doi: 10.1016/j.healthpol.2013.06.006. Epub 2013 Jul 16.
Health data constitute a significant resource in most OECD countries that could be used to improve health system performance. Well-intended policies to allay concerns about breaches of confidentiality and to reduce potential misuse of personal health information may be limiting data use. A survey of 20 OECD countries explored the extent to which countries have developed and use personal health data and the reasons why data use may be problematic in some.
Countries are divided, with one-half engaged regularly in national data linkage studies to monitor health care quality. Country variation is linked to risk management in granting an exemption to patient consent requirements; in sharing identifiable data among government authorities; and in project approvals and granting access to data. The resources required to comply with data protection requirements is a secondary problem. The sharing of person-level data across borders for international comparisons is rarely reported and there were few examples of studies of health system performance.
Laws and policies enabling data sharing and data linkage are needed to strengthen national information infrastructure. To develop international studies comparing health care quality and health system performance, actions are needed to address heterogeneity in data protection practices.
在大多数经合组织国家,健康数据是一项重要资源,可以用于改善卫生系统绩效。出于减轻对数据泄露和潜在滥用个人健康信息的担忧的善意政策,可能会限制数据的使用。对 20 个经合组织国家的调查探讨了各国在多大程度上开发和使用个人健康数据,以及为何在某些情况下数据的使用可能会出现问题。
各国意见不一,有一半国家定期进行国家数据链接研究,以监测医疗保健质量。国家间的差异与风险管理有关,包括在豁免患者同意要求方面;在政府部门之间共享可识别数据方面;以及在项目审批和数据访问方面。遵守数据保护要求所需的资源是一个次要问题。跨境共享个人层面数据以进行国际比较的情况很少见,也很少有关于卫生系统绩效研究的例子。
需要制定能够促进数据共享和数据链接的法律和政策,以加强国家信息基础设施。为了开展国际比较医疗保健质量和卫生系统绩效的研究,需要采取行动解决数据保护实践方面的异质性问题。