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Strategic Study of CAE >> 2020, Volume 22, Issue 4 doi: 10.15302/J-SSCAE-2020.04.012

Discussion on the Basic Principles for Health and Medical Data Sharing

1. Institute of Medical-care Information Technology, Hangzhou 311100, China;

2. The first Affiliated Hospital of Zhejiang University, Hangzhou 310003, China

Funding project:中国工程院咨询项目“‘互联网+’行动计划战略研究(2035)”(2018-ZD-02) Received: 2020-04-26 Revised: 2020-06-18 Available online: 2020-08-11

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Abstract

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.

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