The Current Dilemma of Health Care Data Sharing in China and Its Legal Responses

Abstract

Promoting the circulation and sharing of health care data is not only a practical necessity for the advancement of the digital economy, but also a key to achieving the strategic goals of China's health care development. However, the sharing and utilization of China's health care data still face a series of challenges, including unclear allocation of rights and interests of data, breaches of personal privacy, misuse of personal information, and an underdeveloped collaborative mechanism. To overcome these barriers in the era of big data, firstly it is necessary to clarify the rights and interests’ allocation of health care data. Health care data involves three categories of stakeholders: patients, medical institutions, and the public. It is essential to appropriately allocate the rights and interests to health care data among patients, medical institutions, and public health management agencies. From the perspective of effectively utilizing health care data, the rights and interests of patients to their personal health care data are merely an extension of their individual rights and do not include the right to use the data in terms of resource utilization. The rights and interests to use health care data for resource utilization should be granted to medical institutions that actually own or control the health care data. For public health management agencies serving the public interest, only necessary rights and interests should be granted when meeting the needs of the public interest. Secondly, it is necessary to balance the inherent contradiction between sharing and privacy. This requires improving the means by which patients can exercise control over their personal information, establishing a tiered protection mechanism based on the type and sensitivity of health care data, and enhancing the enforcement of health care data regulations to ensure the protection of personal privacy and data security. Ensuring efficient sharing of health data, while respecting individual privacy. Lastly, strengthening the collaborative mechanism for health care data, accelerating the compilation of a health care data resource catalog, and developing universal standards for health care data. From both technical and institutional perspectives, this lays the foundation for the orderly and secure sharing of health care data.
 
 促进健康医疗数据的流通、共享，既是推动数字经济发展的现实需要，也是实现中国健康医疗发展战略目标的关键。然而，中国健康医疗数据共享利用仍然面临数据权益配置不明、个人隐私泄露、个人信息被滥用、协作机制不健全等一系列问题。为了破解大数据时代健康医疗数据共享利用的现实壁垒，首先是要明晰健康医疗数据的权益配置。健康医疗数据涉及患者个人、医疗机构、社会公众三类利益主体，需要妥当配置患者个人、医疗机构和公共卫生管理机构对健康医疗数据的权益。从有效利用健康医疗数据的角度来看，患者对其个人健康医疗数据的权益只是个人权利的延伸，并不包括健康医疗数据资源化利用意义上的使用权。健康医疗数据资源化利用的使用权，应该赋予实际上拥有或控制健康医疗数据的医疗机构。而对服务于公共利益的公共卫生管理机构而言，只应赋予其必要的权益以满足公共利益的需要。其次，还需平衡共享与隐私的内在矛盾，需完善患者个人信息自决的行使途径，健全基于医疗健康数据类型及其敏感性的分级保护机制，并且通过加强健康医疗数据的执法进一步让个人隐私、数据安全得到保证。确保医疗健康数据高效共享的同时，又让个人隐私得到应有的尊重。最后，强化医疗健康数据的协作机制，加快编制医疗健康数据资源目录，制定医疗健康数据通用标准。从技术、制度层面，进一步奠定医疗健�