“我的健康数据我做主”:欧洲健康数据空间运营的机理刻画、挑战分析及策略因应*

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  • (1.江苏省科学技术情报研究所(江苏省科学技术发展战略研究院)   江苏南京   210042)
    (2.南京师范大学国家安全与应急管理研究中心   江苏南京   210023)
    (3.中共湖南省委党校(湖南行政学院)   湖南长沙   410006)
    (4.陕西师范大学国家安全学院(政法与公共管理学院)   陕西西安   710119)
胡峰,江苏省科学技术情报研究所(江苏省科学技术发展战略研究院)研究员,南京师范大学国家安全与应急管理研究中心特约研究员;黎亮,中共湖南省委党校(湖南行政学院)硕士研究生;姚怡帆,陕西师范大学国家安全学院(政法与公共管理学院)讲师。
胡峰(hufeng@sti.js.cn)

收稿日期: 2025-07-21

  网络出版日期: 2025-11-04

基金资助

*本文系四川省哲学社会科学重点实验室“智慧应急管理重点实验室”2025年度课题:政府公共卫生应急信息公开质量评价维度研究(项目编号:2025ZHYJGL-15)研究成果之一。

"My Health Data, My Control": Mechanism Description, Challenge Analysis and Strategic Response of European Health Data Space Operation

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Received date: 2025-07-21

  Online published: 2025-11-04

摘要

健康数据空间对于保障健康数据高效合规流通、释放健康数据战略资源价值具有重要作用。文章以欧洲健康数据空间(EHDS)为案例,首先从要素结构和关键作用机制两方面对其运营机理进行解构。其次,重点从主体、制度、技术三个维度分析运营中存在的挑战,并提出破解策略。研究认为:数据源、平台、主体、制度、技术是EHDS运营的五大要素,要素间交互协同,以实现健康数据跨境高效流通与利用;面向主体可信的权责调适、面向规则可信的引导规约、面向生态可信的内外保障是EHDS运营的三大关键作用机制;建构基于价值共创理念的数据利益共同体、夯实遵循刚柔并济原则的制度基础、打造响应敏捷迭代需求的活跃生态,是EHDS中存在的利益分配不均、制度活性不足、技术设计短板问题的破解策略。EHDS的建设对中国健康数据空间建设具有启示作用。

本文引用格式

胡 峰 黎 亮 姚怡帆 . “我的健康数据我做主”:欧洲健康数据空间运营的机理刻画、挑战分析及策略因应*[J]. 图书与情报, 2025 , 45(05) : 133 -144 . DOI: 10.11968/tsyqb.1003-6938.2025065

Abstract

The health data space plays an important role in ensuring the efficient and compliant circulation of health data and releasing strategic resource value of health data .Taking the European Health Data Space (EHDS) as a case study, this article first deconstructs its operational mechanism from the perspectives of its element structure and key functional mechanisms. Secondly, it analyzes operational challenges from the perspectives of subjects, system, and technology, and proposes strategies to address them. Data sources, platforms, subjects, systems, and technologies are the five elements of EHDS operation. The elements interact and coordinate with each other to achieve efficient cross-border circulation and utilization of health data. The three key action mechanisms of EHDS operation are the adjustment of rights and responsibilities oriented toward subject trust, the guidance and norms oriented toward rule trust, and the internal and external guarantees oriented toward ecological trust. Building a data community of interests based on the concept of value co-creation, consolidating the institutional foundation that follows the principle of combining rigidity and flexibility, and creating an active ecosystem that responds to agile iteration needs constitute the solutions to uneven distribution of benefits, insufficient institutional vitality, and technical design shortcomings in EHDS. The construction of the EHDS has enlightenment significance for the development of China's Health Data Space.
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