Research on Medical Data Sharing Path in Clinical Research Scenarios

Zhang Meng; Mu Dongmei; Deng Jun; Wang Yue; Wang Changcong

doi:10.13266/j.issn.0252-3116.2025.14.008

Library and Information Service >

2025 , Vol. 69 >Issue 14: 91 - 100

DOI: https://doi.org/10.13266/j.issn.0252-3116.2025.14.008

RESEARCH PAPERS

Research on Medical Data Sharing Path in Clinical Research Scenarios

Zhang Meng ,
Mu Dongmei ,
Deng Jun ,
Wang Yue ,
Wang Changcong

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1 School of Public Health, Jilin University, Changchun 130021;
2 The First Hospital of Jilin University, Changchun 130021;
3 School of Business and Management, Jilin University, Changchun 130021

Zhang Meng, doctoral candidate; Mu Dongmei, professor, PhD, corresponding author, E-mail: moudm@jlu.edu.cn; Deng Jun, professor, PhD; Wang Yue, Big Data Center experimentalist, master’s degree; Wang Changcong, doctoral candidate.

Received date: 2024-07-04

Revised date: 2024-10-31

Online published: 2025-07-14

Supported by

This work is supported by the National Natural Science Foundation of China project titled “Research on the Organization Model and Application of Multi-Modal Electronic Medical Record Data Driven by ‘Knowledge-Data’” (Grant No. 72374081), and Jilin Provincial Department of Science and Technology project titled “Development and Application of Personal Diagnosis and Treatment Information Platform for Health Self-Management” (Grant No. 20240304164SF).

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Abstract

[Purpose/Significance] By analyzing the overall structure and path of medical data sharing in clinical research scenarios, the theoretical framework of medical data sharing is constructed and improved to provide guidance for the full utilization of medical data resources. [Method/Process] Based on the theory of data value chain, the overall framework of medical data sharing in clinical research scenarios was constructed. Combined with the theory of value co-creation, this paper explored the data sharing path of medical data controllers, users, processors, and regulators, and then compared multiple cases at home and abroad. [Result/Conclusion] It has created an overall plan from “data capitalization” to “data commercialization” and then to “data capitalization”, forming a shared path of “controller data release - processor data transmission - user data acquisition - regulators shared supervision”. This paper analyzes and puts forward an improved strategy for the openness and limitations of data sharing, data security and privacy protection, as well as data sharing process and efficiency.

Key words： medical data; data sharing; clinical research scenario; data value chain; path research

Cite this article

Zhang Meng , Mu Dongmei , Deng Jun , Wang Yue , Wang Changcong . Research on Medical Data Sharing Path in Clinical Research Scenarios[J]. Library and Information Service, 2025 , 69(14) : 91 -100 . DOI: 10.13266/j.issn.0252-3116.2025.14.008

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