Policy evaluation of prevention and assurance of rare diseases in China based on PMC index model
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(0.21).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.
rare diseasessocial securitypolicy makingoutcome assessment,health carePMC index model
NETL
NSTL
万方数据
