广西医学

目的探讨政策工具与利益相关者视角下我国血友病相关政策的侧重点及不足，为未来我国血友病相关政策编制与优化提供参考。方法梳理我国2000—2023年颁布的与血友病相关的政策文件，基于政策工具与利益相关者理论，构建政策工具（X维度）⁃利益相关者（Y维度）二维分析框架，采用内容分析法对我国血友病相关政策文本进行分析。结果最终纳入政策文件24份，主要集中在诊疗制度、医疗保障、信息建设等宏观层面。X维度中，供给型、环境型、需求型政策工具的占比分别为42.7%、34.7%、22.7%；Y维度中，涉及政府、患者、医疗机构、公司的条目占比分别为38.7%、32.0%、25.3%、4.0%。结论我国的血友病政策在各个政策工具和利益相关者之间的分布不平衡，需求型政策工具和公司这一利益相关者在血友病政策中的关注度不足。建议在相关政策设计上应平衡各政策工具的使用，尤其应加强需求型政策工具的运用，注重患者的需求导向；重视提升患者的治疗效果和生活质量；提高公司这一利益相关者在血友病政策中的关注度，积极促使各利益相关者协调联动，形成支撑血友病诊疗的整体服务体系。

Objective To explore the focus and gaps in China's hemophilia⁃related policies from the perspectives of policy tools and stakeholders, providing references for the formulation and optimization of future hemophilia⁃related policies in China. Methods Policy documents related to hemophilia issued in China from 2000 to 2023 were reviewed. Based on the policy tool and stakeholder theories, a two⁃dimensional analytical framework of policy tools (X⁃dimension) and stakeholders (Y⁃dimension) was constructed, and content analysis method was applied to analyze the policy texts of hemophilia⁃related policies in China. Results A total of 24 policy documents were included, primarily focusing on macro⁃level aspects such as the diagnosis and treatment system, healthcare security, and information infrastructure. In the X⁃dimension, the proportions of supply⁃type, environment⁃type, and demand⁃type policy tools were 42.7%, 34.7%, and 22.7%, respectively. In the Y⁃dimension, the proportions of policy items involving the government, patients, medical institutions, and companies were 38.7%, 32.0%, 25.3%, and 4.0%, respectively. Conclusion China's hemophilia policies exhibit an imbalanced distribution across policy tools and stakeholders, with insufficient attention given to demand⁃type policy tools and corporate stakeholders. It is recommended that relevant policy designs should balance the use of various policy tools, particularly by strengthening the application of demand⁃type policy tools and focusing on patient demand orientation. Emphasis should be placed on improving treatment outcomes and quality of life for patients. Additionally, greater attention should be paid to corporate stakeholders in hemophilia policies, and active efforts should be made to promote coordination and collaboration among all stakeholders to establish a comprehensive service system supporting hemophilia diagnosis and treatment.

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