Current Status and Challenges of the Development on Rare Disease Multi-Security Mechanisms Driven by Data Intelligence in China
The major obstacle to optimizing the design of rare disease coverage is the fragmented decision-making process among medical services, pharmaceuticals, and medical insurance departments. There is an urgent need to realize data sharing and digital empowerment, as well as to adopt top-level design and...
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| Format: | Article |
| Language: | zho |
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Editorial Office of Journal of Rare Diseases
2025-01-01
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| Series: | 罕见病研究 |
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| Online Access: | https://jrd.chard.org.cn/article/doi/10.12376/j.issn.2097-0501.2025.01.001 |
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| author | ZHAN Siyan ZHANG Shuyang |
| author_facet | ZHAN Siyan ZHANG Shuyang |
| author_sort | ZHAN Siyan |
| collection | DOAJ |
| description | The major obstacle to optimizing the design of rare disease coverage is the fragmented decision-making process among medical services, pharmaceuticals, and medical insurance departments. There is an urgent need to realize data sharing and digital empowerment, as well as to adopt top-level design and systematic decision-making. It is also crucial to establish mechanisms, facilitated by digital intelligence, for sharing power and responsibilities, and assessing rewards and punishments. Furthermore, there is an urgent need to incorporate the theories of collaborative governance, digital governance, and the full life cycle into the entire process, which includes patient classification, diagnosis and treatment, medical assistance, medication protection, and health insurance fund management for rare diseases. This integration aims to provide theoretical reference for the effective linkage of medical services, pharmaceuticals, and medical insurance, and to improve the efficiency and equity of resource allocation in the public sector. |
| format | Article |
| id | doaj-art-8fc2ac3dc1c548abb4d98bad46c4651f |
| institution | OA Journals |
| issn | 2097-0501 |
| language | zho |
| publishDate | 2025-01-01 |
| publisher | Editorial Office of Journal of Rare Diseases |
| record_format | Article |
| series | 罕见病研究 |
| spelling | doaj-art-8fc2ac3dc1c548abb4d98bad46c4651f2025-08-20T01:50:33ZzhoEditorial Office of Journal of Rare Diseases罕见病研究2097-05012025-01-01411610.12376/j.issn.2097-0501.2025.01.001Current Status and Challenges of the Development on Rare Disease Multi-Security Mechanisms Driven by Data Intelligence in ChinaZHAN SiyanZHANG ShuyangThe major obstacle to optimizing the design of rare disease coverage is the fragmented decision-making process among medical services, pharmaceuticals, and medical insurance departments. There is an urgent need to realize data sharing and digital empowerment, as well as to adopt top-level design and systematic decision-making. It is also crucial to establish mechanisms, facilitated by digital intelligence, for sharing power and responsibilities, and assessing rewards and punishments. Furthermore, there is an urgent need to incorporate the theories of collaborative governance, digital governance, and the full life cycle into the entire process, which includes patient classification, diagnosis and treatment, medical assistance, medication protection, and health insurance fund management for rare diseases. This integration aims to provide theoretical reference for the effective linkage of medical services, pharmaceuticals, and medical insurance, and to improve the efficiency and equity of resource allocation in the public sector.https://jrd.chard.org.cn/article/doi/10.12376/j.issn.2097-0501.2025.01.001data intelligencerare diseasesmulti-security mechanisms |
| spellingShingle | ZHAN Siyan ZHANG Shuyang Current Status and Challenges of the Development on Rare Disease Multi-Security Mechanisms Driven by Data Intelligence in China 罕见病研究 data intelligence rare diseases multi-security mechanisms |
| title | Current Status and Challenges of the Development on Rare Disease Multi-Security Mechanisms Driven by Data Intelligence in China |
| title_full | Current Status and Challenges of the Development on Rare Disease Multi-Security Mechanisms Driven by Data Intelligence in China |
| title_fullStr | Current Status and Challenges of the Development on Rare Disease Multi-Security Mechanisms Driven by Data Intelligence in China |
| title_full_unstemmed | Current Status and Challenges of the Development on Rare Disease Multi-Security Mechanisms Driven by Data Intelligence in China |
| title_short | Current Status and Challenges of the Development on Rare Disease Multi-Security Mechanisms Driven by Data Intelligence in China |
| title_sort | current status and challenges of the development on rare disease multi security mechanisms driven by data intelligence in china |
| topic | data intelligence rare diseases multi-security mechanisms |
| url | https://jrd.chard.org.cn/article/doi/10.12376/j.issn.2097-0501.2025.01.001 |
| work_keys_str_mv | AT zhansiyan currentstatusandchallengesofthedevelopmentonrarediseasemultisecuritymechanismsdrivenbydataintelligenceinchina AT zhangshuyang currentstatusandchallengesofthedevelopmentonrarediseasemultisecuritymechanismsdrivenbydataintelligenceinchina |