基于PMC指数模型的我国罕见病防治与保障政策评价

Policy evaluation of prevention and assurance of rare diseases in China based on PMC index model

目的对我国现有的罕见病防治与保障政策进行量化评价,为政策的制定和完善提供参考。方法对2009年1月—2023年9月我国国家层面发布的62项罕见病防治与保障政策进行文本挖掘,建立政策一致性(PMC)指数模型,通过10个一级变量和41个二级变量对具有代表性的罕见病防治与保障政策进行量化评价。结果共选取36项政策,其中优秀级有4项,良好级有32项。政策总体的PMC指数均值为5.80。在各变量中,政策评价的PMC指数均值最高,为0.90;激励方式的PMC指数均值最低,为0.21。结论目前我国罕见病防治与保障政策尚处初级阶段,罕见病防治与保障政策总体呈现良好态势,但在发布机构、政策内容、激励措施与政策工具上还有较大提升空间。

AIM To quantitatively evaluate the existing policies of prevention and assurance of rare diseases,and to provide reference for policy formulation and improvement.METHODS Text mining was conducted for 62 rare disease prevention and assurance policies released at the national level from January 2009 to September 2023,and policy modeling consistency(PMC)index evaluation model was established to quantitatively evaluate representative rare disease prevention and assurance policies with 10 first-level variables and 41 second-level variables.RESULTS A total of 36 policies were selected,of which 4 were rated excellent and 32 were rated good.The average PMC index of the overall policy was 5.80.Among the variables,the average PMC index of policy evaluation was the highest(0.90),while the average PMC index of incentive mode was the lowest(O.21).CONCLUSION At present,rare disease prevention and assurance policy in our country is still in the initial stage,it is found that rare disease prevention and assurance policies present a good trend on the whole.However,there is still much room for improvement in issuing agency,policy content,incentives and policy tools.