Experience and reflection from China's Xiangya medical big data project.

Abstract

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.