基于公众关注主题及情感视角的我国罕见病医药保障策略研究——以诺西那生钠为例

Study on the strategy of medical security for rare diseases in China from the perspective of public concern and emotion:taking nosinasine as an example

目的挖掘网络大众关于罕见病的关注焦点和情感态度,为相关部门对罕见病医药保障相关政策、制度及策略的制定与实施提供决策参考。方法利用潜在狄利克雷分布(LDA)主题模型和情感分析方法分析Bilibili网站上与“天价药”诺西那生钠纳入医保事件相关的高播放量短视频的评论文本,挖掘文本的主题和情感倾向,并提出相应策略建议。结果共获得8个播放量上万的视频,获得7109条文本数据。根据LDA分析提取出网络公众关注罕见病相关的9个主题(罕见病药的价格、罕见病药入医保、罕见病药的研发现状、医保范围与医疗保障体系、罕见病患者群体的困境、罕见病的预防与筛查、罕见病药入医保的价值、罕见病的中西医疗法、罕见病药的供需现状),按关注对象概括为4大类(罕见病药物类、罕见病医疗保险类、罕见病医疗卫生服务类和罕见病患者群体类)。公众对各主题的情感总体呈现出低积极性和高消极性的倾向。结论公众对罕见病药的价格、研发和供需问题关注度最高,并对我国当前罕见病的医疗现状深感担忧。建议加强和完善对罕见病患者的医药保障,如积极开展罕见病公共卫生服务,加强罕见病诊疗合作与罕见病药的研究;我国医药卫生相关部门可从医疗卫生服务、药品供应保障、医疗保障和其他社会保障等方面协同努力。

OBJECTIVE To mine the focus and emotional attitude of the public on rare diseases,and to provide decision-making reference for relevant departments to formulate and implement relevant policies,systems and strategies for medical security of rare diseases.METHODS Latent Dirichlet allocation(LDA)topic model and sentiment analysis method were used to analyze the comment text of short videos related to the“nosinasine”medical insurance admission event on the Bilibili video website,mine the theme and sentiment tendency of the text,and put forward relevant strategy suggestions.RESULTS A total of 8 videos with tens of thousands of playback and 7109 text data were obtained.According to the LDA analysis,online public paid attention to 9 topics related to rare diseases(the price of rare disease drugs,the inclusion of rare disease drugs in medical insurance,the status quo of research and development of rare disease drugs,the scope of medical insurance and the medical security system,the plight of rare disease patients,the prevention and screening of rare diseases,the value of rare disease drugs in medical insurance,the Chinese and western medical methods of rare diseases,and the supply and demand status of rare disease drugs),which could be summarized into 4 categories according to the objects of concern(rare disease drugs,rare disease medical insurance,rare disease medical and health services and rare disease patient groups).On the whole,the emotional tendency of the Internet public towards each topic showed a low positive and high negative tendency.CONCLUSIONS The public paid more attention to the price,research and development,supply and demand of rare disease drugs,and was deeply worried about the current medical status of rare diseases in China.To strengthen and improve the medical security for patients with rare diseases,such as actively carrying out public health services for rare diseases,strengthening cooperation in the diagnosis and treatment of rare diseases,and researching rare disease drugs,etc.Chinese medical and health departments can make concerted efforts in medical and health services,drug supply security,medical security and other social security.