Department of Medical Information, Information Security and Big Data Institute, Central South University, Changsha 410013, Hunan, China.
Department of Medical Information, Information Security and Big Data Institute, Central South University, Changsha 410013, Hunan, China; North China Electric Power University, Beijing, China.
J Biomed Inform. 2019 May;93:103149. doi: 10.1016/j.jbi.2019.103149. Epub 2019 Mar 14.
The construction of medical big data includes several problems that need to be solved, such as integration and data sharing of many heterogeneous information systems, efficient processing and analysis of large-scale medical data with complex structure or low degree of structure, and narrow application range of medical data. Therefore, medical big data construction is not only a simple collection and application of medical data but also a complex systematic project. This paper introduces China's experience in the construction of a regional medical big data ecosystem, including the overall goal of the project; establishment of policies to encourage data sharing; handling the relationship between personal privacy, information security, and information availability; establishing a cooperation mechanism between agencies; designing a polycentric medical data acquisition system; and establishing a large data centre. From the experience gained from one of China's earliest established medical big data projects, we outline the challenges encountered during its development and recommend approaches to overcome these challenges to design medical big data projects in China more rationally. Clear and complete top-level design of a project requires to be planned in advance and considered carefully. It is essential to provide a culture of information sharing and to facilitate the opening of data, and changes in ideas and policies need the guidance of the government. The contradiction between data sharing and data security must be handled carefully, that is not to say data openness could be abandoned. The construction of medical big data involves many institutions, and high-level management and cooperation can significantly improve efficiency and promote innovation. Compared with infrastructure construction, it is more challenging and time-consuming to develop appropriate data standards, data integration tools and data mining tools.
医学大数据的建设包括几个需要解决的问题，如许多异构信息系统的集成和数据共享、具有复杂结构或低结构程度的大规模医学数据的高效处理和分析、以及医学数据的应用范围狭窄。因此，医学大数据的建设不仅是简单地收集和应用医学数据，而且是一个复杂的系统工程。本文介绍了中国在构建区域医学大数据生态系统方面的经验，包括项目的总体目标；制定鼓励数据共享的政策；处理个人隐私、信息安全和信息可用性之间的关系；建立机构间的合作机制；设计多中心医学数据采集系统；以及建立大数据中心。从中国最早建立的医学大数据项目之一中获得的经验，我们概述了在其发展过程中遇到的挑战，并提出了克服这些挑战的方法，以更合理地设计中国的医学大数据项目。项目的清晰和完整的顶层设计需要提前规划和仔细考虑。必须营造信息共享的文化，促进数据开放，观念和政策的变化需要政府的引导。数据共享和数据安全之间的矛盾必须谨慎处理，这并不是说要放弃数据开放。医学大数据的建设涉及到许多机构，高层管理和合作可以显著提高效率并促进创新。与基础设施建设相比，开发适当的数据标准、数据集成工具和数据挖掘工具更具挑战性和耗时。
