以数智化驱动为导向的中国罕见病多重保障机制建设现状与挑战

Current Status and Challenges of the Development on Rare Disease Multi-Security Mechanisms Driven by Data Intelligence in China

  • 摘要: 当前中国医疗、医药、医保多部门决策的依据、目标和方法各异导致的决策不一致是罕见病保障设计优化的最大阻碍,亟需借助数智化驱动实现数据共享及数智赋能、顶层设计及系统决策、权责共担及奖惩考核,迫切需要将协同治理理论、数字治理理论和全生命周期理论纳入罕见病的患者分级诊疗、医疗救助、用药保障及医保基金管理等全过程,为三医联动、改善公共部门资源配置效率和公平性提供理论参考。

     

    Abstract: 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.

     

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