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中国医药导刊 ›› 2024, Vol. 26 ›› Issue (1): 73-76.

• 精准医疗良好实践案例:数据共享与利用 • 上一篇    下一篇

瑞士个性化健康网络的数据共享经验

章颖   

  1. 中国政法大学数据法治研究院, 北京 100088
  • 收稿日期:2024-01-04 出版日期:2024-01-28 发布日期:2024-01-28
  • 基金资助:

    国家重点研发计划资助项目,科技部重点研发计划“政府间国际科技创新合作”重点专项[项目编号:2021YFE0192400;项目名称:中国-欧盟国际精准医疗领域合作支持计划(IC2PerMed)]

Experience on Data Sharing of Swiss Personalized Health Network

  1. Institute of Data Law China University of Political Science and Law Beijing 100088, China
  • Received:2024-01-04 Online:2024-01-28 Published:2024-01-28

摘要:

瑞士在个性化医疗领域享有很高的声誉。“瑞士个性化健康网络”(Swiss Personalized Health NetworkSPHN)以其高效率、高私密性、高技术以及卓越的服务质量而著称,常被视为全球医疗服务的典范。本研究聚焦于SPHN 对瑞士个性化医疗的重要支撑作用,调研了瑞士个性化医疗的战略动向、政策法律支撑和组织机构运营,并且认为以下3个方面是瑞士个性化医疗长期在欧洲维持创新高地的关键因素:①SPHN组织的高效运营;患者数据共享的特别保护机制;可操作性极强的数据共享基础设施。在自上而下和自下而上的资金支持基础上,SPHN实现了大学附属医院、大学、技术平台、患者和其他数据生产机构等多方利益主体的平衡,搭建了高度发达的数据互操作性框架,并在中央数据协调中心(DCC)负责下建设了BioMedIT等一系列重大数据共享基础设施,以便实际支撑研发计划的科研项目,适应机器学习、人工智能算法以及多组学分析技术的进一步应用。未来,瑞士还计划在个性化医疗发展的“顶层设计”中,逐步强化个性化医疗数据共享以完善全生命周期纵向数据,加强数据共享对多重慢病诊断的支持,这在一定程度上代表了欧洲个性化医疗发展的最新动向。

关键词: 瑞士, 个性化健康网络, 个性化医疗, 患者数据共享, 全生命周期纵向数据, 多重慢病

Abstract:

Switzerland has an excellent reputation in the field of personalized medicine. Swiss Personalized Health Network SPHN is known for its high efficiency privacy high technology and excellent quality of service and is often regarded as a model for global healthcare services. Focusing on the important role of SPHN in supporting personalized medicine in Switzerland this study investigates the strategic trends policy and legal support organizational structure and operation of personalized medicine in Switzerland and points out three key factors for the development of Swiss personalized medicine ①efficient operation of the SPHN organization②special protection mechanisms for patient data sharing and ③highly interoperable data sharing infrastructure. Based on top-down and bottom-up financial support SPHN has achieved a balance of multiple stakeholders including university hospitals universities technology platforms patients and other data-generating institutions and constructed a series of major data-sharing infrastructures e.g. BioMedIT under the operation of the Data Coordination Center DCC), in order to practically support the R&D program and accommodate the further application of machine learning artificial intelligence and multi-omics analysis techniques. In the future Switzerland plans to gradually strengthen personalized medical data sharing in its "top-level design" in order to improve the lifelong longitudinal data and to strengthen the support of data sharing for the diagnosis of multimorbidity which to a certain extent represents the latest trend in the development of personalized medicine in Europe.


Key words: Switzerland , SPHN , Personalized medicine , Patient data sharing , Lifelong longitudinal data , Multimorbidity

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