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健康医疗数据共享基本原则探讨
Discussion on the Basic Principles for Health and Medical Data Sharing
我国健康医疗数据共享尚处于初级阶段，隐私安全、数据权属不清与利益分配不明等关键问题阻碍了健康医疗数据共享的发展。健康医疗数据共享基本原则的建立可为科学开展健康医疗数据共享活动提供指导，促进健康医疗数据共享及价值变现。本文整理归纳了43项国际健康医疗数据共享基本原则内容，从法律、伦理道德和实践的角度出发，分析了国际上开展健康医疗数据共享活动时普遍关注和遵循的关键原则。研究发现，国际健康医疗数据共享中普遍重视价值、尊重、信任、公平与公正、安全、可评估与评估、规范性以及问责制原则的设定和体现。本文优化构建了高共识性健康医疗数据共享基本原则，有助于指导健康医疗数据共享活动的实施，促进我国健康医疗数据合理、合法、合规共享，推进大数据时代背景下“互联网 +”在健康医疗领域的深化应用。
Health and medical data sharing in China is in its infancy. Key issues such as privacy security, unclear data ownership, and unclear distribution of benefits have long hindered the health and medical data sharing in China. Basic principles for the sharing can guide and promote the health and medical data sharing and help realize the values of these data. In this paper, 43 typical principles followed in international health and medical data sharing are summarized, of which the key principles that are generally concerned and followed by the international community are analyzed from the perspectives of law, ethics, and practice. The study reveals that value, respect, trust, fairness and justice, security, evaluability and evaluation, normativeness, and accountability are the primary principles that are generally appreciated in the international health and medical data sharing activities. Based on this, the basic principles with the highest consensus are established for health and medical data sharing. They may better guide and promote the reasonable and legal sharing of health and medical data in China and deepening the application of the Internet Plus mode in the health and medical field.
data sharing / healthcare / data sharing behavior / basic principle
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