Design and development of a disease-specific clinical database system to increase the availability of hospital data in China

Mimi Liu; Jinni Luo; Lin Li; Xuemei Pan; Shuyan Tan; Weidong Ji; Hongzheng Zhang; Shengsheng Tang; Jingjing Liu; Bin Wu; Zebin Chen; Xiaoying Wu; Yi Zhou

doi:10.1007/s13755-023-00211-4

Design and development of a disease-specific clinical database system to increase the availability of hospital data in China

Health Inf Sci Syst. 2023 Jan 30;11(1):11. doi: 10.1007/s13755-023-00211-4. eCollection 2023 Dec.

Authors

Mimi Liu¹, Jinni Luo², Lin Li¹, Xuemei Pan², Shuyan Tan², Weidong Ji¹, Hongzheng Zhang¹, Shengsheng Tang¹, Jingjing Liu¹, Bin Wu², Zebin Chen³, Xiaoying Wu², Yi Zhou¹

Affiliations

¹ Zhongshan School of Medicine, Sun Yat-Sen University, Guangzhou, Guangdong China.
² Gastroenterology Department, The Third Affiliated Hospital of Sun Yat-Sen University, Guangzhou, Guangdong China.
³ Center of Hepato-Pancreatico-Biliary Surgery, The First Affiliated Hospital, Sun Yat-Sen University, Guangzhou, Guangdong China.

Abstract

Purpose: In order to meet restrictions and difficulties in the development of hospital medical informatization and clinical databases in China, in this study, a disease-specific clinical database system (DSCDS) was designed and built. It provides support for the full utilization of real world medical big data in clinical research and medical services for specific diseases.

Methods: The development of DSCDS involved (1) requirements analysis on precision medicine, medical big data, and clinical research; (2) design schematics and basic architecture; (3) standard datasets of specific diseases consisting of common data elements (CDEs); (4) collection and aggregation of specific disease data scattered in various medical business systems of the hospital; (5) governance and quality improvement of specific disease data; (6) data storage and computing; and (7) design of data application modules.

Results: A DSCDS for liver cirrhosis was created in the gastrointestinal department of a 3A grade hospital in China and had more than nine data application modules. Based on this DSCDS, a series of clinical studies are being carried out, such as retrospective or prospective cohorts, prognostic studies using multimodal data, and follow-up studies.

Conclusion: The development of the DSCDS for liver cirrhosis in this paper provides experience and reference for the design and development of DSCDSs for other specific diseases in China; it can even expand to the development of DSCDSs in other countries if they have the demand for DSCDS and the same or better medical informatization foundation. DSCDS has more accurate, standard, comprehensive, multimodal and usable data of specific diseases than the general clinical database system and clinical data repository (CDR) and provides a credible data foundation for medical research, clinical decision-making and improving the medical service quality of specific diseases.

Supplementary information: The online version contains supplementary material available at 10.1007/s13755-023-00211-4.

Keywords: Clinical data aggregation; Clinical data repository; Clinical database; Disease dataset; Disease-specific clinical database system; Liver cirrhosis; Medical big data.