| 引用本文：牟燕, 宋奎勐, 吴敏, 何有琴, 甄天民.基于政策工具视角的我国罕见病领域政策文本分析[J].中国卫生政策研究,2021,14(1):17-23 |
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| 基于政策工具视角的我国罕见病领域政策文本分析 |
| 投稿时间：2020-11-06 修订日期：2020-12-30 PDF全文浏览 HTML全文浏览 |
| 牟燕1,2, 宋奎勐1,2, 吴敏1,2, 何有琴1,2, 甄天民1,2 |
1. 山东第一医科大学(山东省医学科学院)医疗保障学院(山东省医疗保障研究院) 山东济南 250062;
2. 山东省医药卫生科技信息研究所 山东济南 250062 |
| 摘要:目的：总结我国罕见病领域相关政策的关键要素及不足，为我国罕见病领域后续政策的制定与完善提供参考。方法：采用内容分析法，构建“政策目标—政策工具”分析框架对我国32份国家层面的罕见病领域相关政策进行量化分析。结果：我国罕见病领域政策目标为提升罕见病药品可及性、提升罕见病诊疗水平和提高罕见病患者保障水平，应用于上述目标的政策工具比例分别为50%、44.87%和5.13%。讨论：我国罕见病领域政策目标集中在罕见病药品可及性及诊疗水平提升；相关政策工具的选择和使用存在一定失衡或缺失，环境型政策工具使用较多，需求型政策工具使用较少。建议：今后在政策设计上应加强罕见病防治与管理，促进罕见病药品的研发、上市与使用，健全罕见病保障机制，完善罕见病政策体系。 |
| 关键词:罕见病 政策分析 政策工具 文本分析 |
| 基金项目:山东第一医科大学学术提升计划；山东省医学科学院医药卫生科技创新工程；山东省医药卫生科技发展计划项目（2019WS191） |
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| Policy text analysis of rare disease in China based on the perspective of policy tools |
| MU Yan1,2, SONG Kui-meng1,2, WU Min1,2, HE You-qin1,2, ZHEN Tian-min1,2 |
1. Shandong First Medical University & Shandong Academy of Medical Sciences, School of Healthcare Security & Shandong Healthcare Security Research Institute, Jinan Shandong 250062, China;
2. Shandong Institute of Medicine and health Information, Jinan Shandong 250062, China |
| Abstract:Objective:To summarize the key factors and deficiencies of current rare disease policies of China, and to provide references for the formulation and consummation of follow-up policies. Methods:Content analysis method was used to build an analysis framework of "policy objectives and policy tools" for quantitative analysis of 32 current Chinese rare disease policies at national level. Results:The policy objectives were to improve the accessibility of rare disease drugs, improve the diagnosis and treatment of rare diseases. Policy tools used to them accounted for 50%, 44.87% and 5.13%. Discussion:The objectives of rare disease policies focus on the access to rare disease drugs and the improvement of diagnosis and treatment of rare diseases. There is a certain imbalance or deficiency in the selection and use of policy tools. Environment-oriented policy tools are used more and demand-oriented policy tools are seldom used. Suggestions:Future policy design strengthen the prevention and management of rare diseases, promote the R&D, commercialization and use of rare disease drugs, consummate the rare disease security mechanism and further improve the rare disease policy system. |
| Key words:Rare diseases Policy analysis Policy tools Text analysis |
| 摘要点击次数: 2082 全文下载次数: 1082 |
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