健康医疗数据利用中数据权益保障的现实困境与完善对策——以欧盟健康数据空间为例  

On the Practical Dilemma and Perfecting Improvement of Data Rights and Interests Protection in the Utilization of Health and Medical Data--Take the European Health Data Space as an Example

作　　者：王雪[1] 夏义堃 Wang Xue;Xia Yikun

机构地区：[1]南京大学数据管理创新研究中心,江苏苏州215163

出　　处：《图书与情报》2024年第2期55-68,共14页Library & Information

基　　金：国家社会科学基金重大项目“基于数智融合的信息分析方法创新与应用研究”(项目编号:22&ZD326)研究成果之一。

摘　　要：从多主体数据权益保障的视角研究健康医疗数据利用对于充分释放数据价值,建立数据利用与数据保护和谐并存的稳定秩序至关重要。目前健康医疗数据利用仍面临自主权不足、数据泄露、互操作性差、收益权不确定、统筹监管力度薄弱等问题,欧盟健康数据空间的实践探索为各方权益保障的实现提供了可资借鉴的新思路。文章基于利益相关者理论,分析健康医疗数据利用中的利益相关者及其权益诉求,通过文献加工系统梳理原始数据提供者、数据控制者、数据处理者、数据使用者以及数据监管者在健康医疗数据利用中的现实困境。继而探讨和总结欧盟健康数据空间的应对方案。最后,提出我国应健全健康医疗数据权利保障的制度体系、保护患者隐私、强化技术标准建设、明确数据收益规则和监管体系的建议。It is important to study the utilization of health and medical data from the perspective of multi-subject data rights protection to fully release the value of data and establish a stable order of harmonious coexistence of data utilization and data protection.At present,the utilization of health and medical data still faces problems such as lack of autonomous control,data leakage,poor interoperability,uncertain income rights,and weak overall supervision.The practice exploration of the EU health data space provides a new idea for reference for the realization of the rights and interests of all parties.Based on the stakeholder theory,this paper analyzes the stakeholders and their rights and interests in the utilization of health and medical data,and comb through the literature processing system the realistic dilemma of the original data providers,data controllers,data processors,data users and data regulators in the utilization of health and medical data.Then we will discuss and summarize the response plan of the EU health data space.Finally,the paper puts forward some suggestions for improving the system of health care data rights protection,protecting patients'privacy,strengthening the construction of technical standards,and clarifying the rules and supervision system of data benefits.

关 键 词：数据空间 健康医疗数据 数据利用 数据权益 

分 类 号：G358[文化科学—情报学]