我国罕见病多元保障政策经验和机制研究报告.pdfVIP

我国罕见病多元保障政策经验和机制建设——执行摘要 1 我国罕见病多元保障 政策经验和机制 研究报告 联合课题组 中国罕见病联盟 北京大学 中国外商投资企业协会药品研制和开发工作委员会（RDPAC） 我国罕见病多元保障政策 经验和机制建设 主 审： 张抒扬、李林康 主 笔：陶立波、王芳旭 咨询专家组（按姓氏拼音为序排列） 冯岚、冯鹏程、胡大洋、胡欣、贾方红、金春林、康琦、康韦、李顺平、刘军帅、李京帅、 刘丽、吕兰婷、毛姗姗、史录文、苏晞、隋宾艳、王军、王奕鸥、谢俊明、辛筱茗、姚岚、 于保荣、张爱华、张煜、赵琨、郑秉文、郑远秀、钟军、朱坤、地方医保局领导 项目办公室（按姓氏拼音为序排列） 李柯欣、苏沁凝、袁准、郑佳音、张宇 我国罕见病多元保障政策经验和机制建设 目 录 执行摘要 ················································································01 一、研究背景 ··························································01 二、研究方法 ··························································01 三、研究结果 ··························································01 四、政策建议 ··························································03 1. 研究背景 ·············································································04 2. 研究目的 ·············································································06 3. 研究方法 ·············································································07 3.1. 文献研究和综述 ·····················································07 3.2. 专家访谈 ···························································07 3.3. 地方试点经验调研 ····················································07 3.4. 研究路线图 ·························································08 4. 二次文献综述：罕见病保障的“三医联动” ····································09 4.1. 文献检索过程 ·······················································09 4.2. 重点文献综述 ·······················································09 5. 专家深度访谈：各种罕见病保障机制的优劣得失 ··························14 5.1. 访谈内容梳理 ·······················································14 5.1.1. 基本医保管理专家访谈 ···········································14 5.1.2. 商保管理专家访谈 ··············································15 5.1.3. 罕见病临床专家访谈 ············································15 5.1.4. 社会慈善组织访谈 ··············································