摘要
全国“两会”上的建议提案是对公众呼声的体现,也是罕见病等社会问题由系统议程转化为公共议程的重要渠道。基于2015—2021年235份全国“两会”罕见病相关建议提案答复函,研究发现相关建议提案数在2015年之后明显增加,它们对政策议程设置的影响具有周期性变化的特征,也与罕见病议题以及承办部门差异有关。整体上,罕见病医药研发与审批管理议题的“两会”呼声更能获得积极的部门回应和政策落实,而罕见病医疗保障、法规制度建设等复杂议题则需要与政治环境、焦点事件、公众情绪等多方要素相结合才能得到有效推进。除了医药问题,公共服务与社会支持体系的建设也需要逐步纳入我国罕见病公共政策议程之中。
Suggestions of NPC deputies and proposals of CPPCC members on rare disease at the Two Sessions are reflections of the public's voice and important opportunities for social issues to be transformed from the system agenda to the public agenda.Based on 235 response letters issued from 2015to 2021,the study found that suggestions of NPC deputies and proposals of CPPCC members on rare disease increased significantly in recent years,their impact on policy agenda setting changes periodically and varies by rare disease topics and government departments.In general,pharmaceutical issues of rare disease can get more positive departmental responses and policy implementation,while complex issues such as medical insurance,regulatory system construction need help from political environment,focus events,public sentiment and other forces.In addition to traditional medical issues,the construction of public services and social support systems should be gradually incorporated into the public policy agenda for rare diseases in China.
作者
石慧
周慧君
吴岩
Hui Shi;Huijun Zhou;Yan Wu
出处
《中国公共政策评论》
2022年第2期70-83,共14页
Chinese Public Policy Review
基金
国家社会科学基金项目“我国公共支出优先权的竞争及其协调机制研究”(19CGL046)的阶段性研究成果
关键词
“两会”
建议提案
政策议程
部门回应
罕见病
Two Sessions
Suggestion of NPC Deputies
Proposal of CPPCC Members
Policy Agenda Setting
Departmental Response
Rare Disease
