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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
Δ

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邰杨芳 ，郭 樱，王紫琼，王君慧，华国旻，杨慧丽，王晓洁，贺培风（山西医科大学管理学院，太原 030001）

中图分类号 R95；R197.1 文献标志码 A 文章编号 1001-0408（2023）07-0774-06
DOI 10.6039/j.issn.1001-0408.2023.07.02

摘 要 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 7 109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。
关键词 罕见病；潜在狄利克雷分布主题模型；情感分析；诺西那生钠；医药保障

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
TAI Yangfang，GUO Ying，WANG Ziqiong，WANG Junhui，HUA Guomin，YANG Huili，WANG Xiaojie，HE
Peifeng（School of Management， Shanxi Medical University， Taiyuan 030001， China）

ABSTRACT 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 7 109 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.
KEYWORDS rare diseases； latent Dirichlet allocation topic model； sentiment analysis； nosinasine； medical security

罕见病是指发病率低、患病人数相对较少的疾病，

Δ 基金项目 国家社会科学基金项目（No.21BTQ050）；山西医科 大多属于疑难病，涉及多病种，诊治困难，一直以来都是
大学教育教学改革一般研究项目（No.SXJ202078）；山西省软科学研究 一个棘手的医学难题。虽然罕见病的发病率较低，但由
计划项目（No.2019041046-4）
于我国人口基数大，截至 2022 年，中国罕见病患病人数
＊第一作者 副教授，博士。研究方向：医学知识挖掘、信息组织与
[1]
检索。E-mail：annabelchina@126.com 约2 000万 ，规模并不小。受罕见病专科医疗资源短缺

· 774 · China Pharmacy 2023 Vol. 34 No. 7 中国药房 2023年第34卷第7期