PDF(Pubmed)
Abstract：
The Nordic countries are, together with the United States, forerunners in online record access (ORA), which has now become widespread. The importance of accessible and structured health data has also been highlighted by policy makers internationally. To ensure the full realization of ORA\'s potential in the short and long term, there is a pressing need to study ORA from a cross-disciplinary, clinical, humanistic, and social sciences perspective that looks beyond strictly technical aspects. In this viewpoint paper, we explore the policy changes in the European Health Data Space (EHDS) proposal to advance ORA across the European Union, informed by our research in a Nordic-led project that carries out the first of its kind, large-scale international investigation of patients\' ORA-NORDeHEALTH (Nordic eHealth for Patients: Benchmarking and Developing for the Future). We argue that the EHDS proposal will pave the way for patients to access and control third-party access to their electronic health records. In our analysis of the proposal, we have identified five key principles for ORA: (1) the right to access, (2) proxy access, (3) patient input of their own data, (4) error and omission rectification, and (5) access control. ORA implementation today is fragmented throughout Europe, and the EHDS proposal aims to ensure all European citizens have equal online access to their health data. However, we argue that in order to implement the EHDS, we need more research evidence on the key ORA principles we have identified in our analysis. Results from the NORDeHEALTH project provide some of that evidence, but we have also identified important knowledge gaps that still need further exploration.
摘要：
北欧国家是,与美国一起，在线记录访问(ORA)的先行者，现在已经变得普遍了。国际上的决策者也强调了可获取和结构化健康数据的重要性。为了确保在短期和长期内充分实现ORA的潜力，迫切需要从跨学科的角度研究ORA，临床,人文,和社会科学的观点，超越严格的技术方面。在这篇观点论文中，我们探讨了欧洲健康数据空间（EHDS）提案中的政策变化，以在整个欧盟推进ORA，我们在一个由北欧领导的项目中进行了首次此类研究，对患者\'ORA-NORDeHEALTH（北欧患者健康：未来的基准和发展）的大规模国际调查。我们认为，EHDS提案将为患者访问和控制第三方访问其电子健康记录铺平道路。在我们对提案的分析中，我们已经确定了ORA的五个关键原则：(1)访问权，（2）代理访问，(3)病人输入自己的数据,(4)错误和遗漏纠正，（5）访问控制。今天的ORA实施在整个欧洲都是分散的，EHDS提案旨在确保所有欧洲公民都能平等地在线访问其健康数据。然而,我们认为，为了实施EHDS，我们需要更多关于我们在分析中确定的关键ORA原则的研究证据.NORDeHEALTH项目的结果提供了一些证据，但我们也发现了仍需要进一步探索的重要知识差距。
