Informatics Consideration on the Hierarchical System of Rare Diseases Clinical Care in China
The diagnosis and treatment resources for rare diseases in China are highly imbalanced. The basic diagnosis and treatment capabilities are weak, the diagnosis period for patients is long, and the rates of missed diagnosis and misdiagnosis are relatively high. The establishment of a hierarchical diag...
Saved in:
| Main Authors: | , , , , , , , |
|---|---|
| Format: | Article |
| Language: | zho |
| Published: |
Editorial Office of Journal of Rare Diseases
2024-10-01
|
| Series: | 罕见病研究 |
| Subjects: | |
| Online Access: | https://jrd.chard.org.cn/article/doi/10.12376/j.issn.2097-0501.2024.04.017 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1841555696242393088 |
|---|---|
| author | GONG Mengchun GUO Yanying ZHENG Xihong FAN Junkang LIU Peng NIU Ling YANG Yining ZOU Xiaoguang |
| author_facet | GONG Mengchun GUO Yanying ZHENG Xihong FAN Junkang LIU Peng NIU Ling YANG Yining ZOU Xiaoguang |
| author_sort | GONG Mengchun |
| collection | DOAJ |
| description | The diagnosis and treatment resources for rare diseases in China are highly imbalanced. The basic diagnosis and treatment capabilities are weak, the diagnosis period for patients is long, and the rates of missed diagnosis and misdiagnosis are relatively high. The establishment of a hierarchical diagnosis and treatment system is the inevitable approach to enhancing the diagnosis and treatment standards of rare diseases. Currently, the implementation of the domestic hierarchical diagnosis and treatment system for rare diseases still confronts numerous challenges, such as ambiguous referral standards and processes of primary medical institutions, and ineffective information interaction among institutions at all levels. Thus, it is essential to facilitate high-level information construction for the hierarchical diagnosis and treatment of rare diseases. This paper explores the process of constructing a multidisciplinary joint remote diagnosis and treatment platform and a health management platform through informatization, with the hope of establishing two closed loops of digital diagnosis and treatment services and health follow-up management for patients with rare diseases, as well as achieving timely diagnosis and lifelong health management for patients. It integrates and optimizes auxiliary diagnostic tools, promotes the rapid dissemination of rare disease diagnosis and treatment experiences to the grassroots, enhances the information construction level of the hierarchical diagnosis and treatment system, and endeavors to address the practical predicament of weak diagnosis and treatment capabilities of rare diseases in grassroots medical institutions. Additionally, this paper proposes an essential approach for multi-dimensional independent innovation to guide the popularization of efficient and high-quality rare disease diagnosis and treatment services. By encompassing innovating the rare disease diagnosis and treatment collaboration network and multidisciplinary diagnosis and treatment model, facilitating the application of the latest biomedical and informatics technologies to the grassroots, and constructing a national intelligent data platform for rare disease innovation, a new model for rare disease services with Chinese characteristics will be established. This will significantly enhance the medical treatment level of rare diseases in China and strive for more benefits for patients. |
| format | Article |
| id | doaj-art-a9de4ed1fef04b3a908fdf81548b3186 |
| institution | Kabale University |
| issn | 2097-0501 |
| language | zho |
| publishDate | 2024-10-01 |
| publisher | Editorial Office of Journal of Rare Diseases |
| record_format | Article |
| series | 罕见病研究 |
| spelling | doaj-art-a9de4ed1fef04b3a908fdf81548b31862025-01-08T05:23:34ZzhoEditorial Office of Journal of Rare Diseases罕见病研究2097-05012024-10-013452753410.12376/j.issn.2097-0501.2024.04.017Informatics Consideration on the Hierarchical System of Rare Diseases Clinical Care in ChinaGONG MengchunGUO Yanying0ZHENG Xihong1FAN Junkang2LIU Peng3NIU Ling4YANG Yining5ZOU Xiaoguang6The People′s Hospital of Xinjiang Uygur Autonomous Region, Urumqi 830001, ChinaDigital Health China Technologies Co., LTD, Beijing 100080, ChinaDigital Health China Technologies Co., LTD, Beijing 100080, ChinaPeking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College, Beijing 100730, ChinaThe People′s Hospital of Xinjiang Uygur Autonomous Region, Urumqi 830001, ChinaThe People′s Hospital of Xinjiang Uygur Autonomous Region, Urumqi 830001, ChinaKashgar-Guangdong Research Institute, Kashgar 844099, ChinaThe diagnosis and treatment resources for rare diseases in China are highly imbalanced. The basic diagnosis and treatment capabilities are weak, the diagnosis period for patients is long, and the rates of missed diagnosis and misdiagnosis are relatively high. The establishment of a hierarchical diagnosis and treatment system is the inevitable approach to enhancing the diagnosis and treatment standards of rare diseases. Currently, the implementation of the domestic hierarchical diagnosis and treatment system for rare diseases still confronts numerous challenges, such as ambiguous referral standards and processes of primary medical institutions, and ineffective information interaction among institutions at all levels. Thus, it is essential to facilitate high-level information construction for the hierarchical diagnosis and treatment of rare diseases. This paper explores the process of constructing a multidisciplinary joint remote diagnosis and treatment platform and a health management platform through informatization, with the hope of establishing two closed loops of digital diagnosis and treatment services and health follow-up management for patients with rare diseases, as well as achieving timely diagnosis and lifelong health management for patients. It integrates and optimizes auxiliary diagnostic tools, promotes the rapid dissemination of rare disease diagnosis and treatment experiences to the grassroots, enhances the information construction level of the hierarchical diagnosis and treatment system, and endeavors to address the practical predicament of weak diagnosis and treatment capabilities of rare diseases in grassroots medical institutions. Additionally, this paper proposes an essential approach for multi-dimensional independent innovation to guide the popularization of efficient and high-quality rare disease diagnosis and treatment services. By encompassing innovating the rare disease diagnosis and treatment collaboration network and multidisciplinary diagnosis and treatment model, facilitating the application of the latest biomedical and informatics technologies to the grassroots, and constructing a national intelligent data platform for rare disease innovation, a new model for rare disease services with Chinese characteristics will be established. This will significantly enhance the medical treatment level of rare diseases in China and strive for more benefits for patients.https://jrd.chard.org.cn/article/doi/10.12376/j.issn.2097-0501.2024.04.017rare diseaseshierarchical medical systeminformatization |
| spellingShingle | GONG Mengchun GUO Yanying ZHENG Xihong FAN Junkang LIU Peng NIU Ling YANG Yining ZOU Xiaoguang Informatics Consideration on the Hierarchical System of Rare Diseases Clinical Care in China 罕见病研究 rare diseases hierarchical medical system informatization |
| title | Informatics Consideration on the Hierarchical System of Rare Diseases Clinical Care in China |
| title_full | Informatics Consideration on the Hierarchical System of Rare Diseases Clinical Care in China |
| title_fullStr | Informatics Consideration on the Hierarchical System of Rare Diseases Clinical Care in China |
| title_full_unstemmed | Informatics Consideration on the Hierarchical System of Rare Diseases Clinical Care in China |
| title_short | Informatics Consideration on the Hierarchical System of Rare Diseases Clinical Care in China |
| title_sort | informatics consideration on the hierarchical system of rare diseases clinical care in china |
| topic | rare diseases hierarchical medical system informatization |
| url | https://jrd.chard.org.cn/article/doi/10.12376/j.issn.2097-0501.2024.04.017 |
| work_keys_str_mv | AT gongmengchun informaticsconsiderationonthehierarchicalsystemofrarediseasesclinicalcareinchina AT guoyanying informaticsconsiderationonthehierarchicalsystemofrarediseasesclinicalcareinchina AT zhengxihong informaticsconsiderationonthehierarchicalsystemofrarediseasesclinicalcareinchina AT fanjunkang informaticsconsiderationonthehierarchicalsystemofrarediseasesclinicalcareinchina AT liupeng informaticsconsiderationonthehierarchicalsystemofrarediseasesclinicalcareinchina AT niuling informaticsconsiderationonthehierarchicalsystemofrarediseasesclinicalcareinchina AT yangyining informaticsconsiderationonthehierarchicalsystemofrarediseasesclinicalcareinchina AT zouxiaoguang informaticsconsiderationonthehierarchicalsystemofrarediseasesclinicalcareinchina |