公众对罕见病的网络关注特征分析

Analysis on the Characteristics of Public Attention to Rare Diseases on the Internet

目的/意义了解罕见病相关信息的公众关注特征,以期为今后研究及政策制定提供思路。方法/过程以“罕见病”为关键词,采集2012年以来搜索指数数据,按年份、月份汇总并进行二次分析;采集2022年9月人群画像、2013—2021年各年度罕见病网络关注度排名前10位的地区信息,并进行二次分析。结果/结论公众对罕见病关注度整体呈增长趋势,时间分布、性别、年龄和地区差异影响罕见病关注度,其中新闻媒体宣传、政策发布以及儿童占比高可增加罕见病关注度。为了增加公众对罕见病关注度,应加强罕见病相关宣传教育。

Purpose/Significance To understand the characteristics of public attention to rare diseases related information,in order to provide ideas for future research and policy formulation.Method/Process With“rare diseases”as the keyword,the search index data are collected from 2012,and summarized by year and month for secondary analysis.Population portraits are collected in September 2022,and the top 10 regions in terms of online attention to rare diseases are collected in each year from 2013 to 2021,and a secondary analysis is carried out.Result/Conclusion The public attention to rare diseases shows an increasing trend on the whole.The differences of time distribution,gender,age and region affect the attention to rare diseases,among which the publicity of news media,policy release and the high proportion of children can increase the attention to rare diseases.In order to increase the public attention to rare diseases,we should strengthen the publicity and education of rare diseases.