Department of Pathology and Laboratory Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
Department of Pediatrics, Division of Hematology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
Haemophilia. 2022 Mar;28(2):247-253. doi: 10.1111/hae.14510. Epub 2022 Feb 15.
The haemophilia community on Twitter is diverse, consisting of advocacy groups, patients, physicians, researchers and other users. However, the scope of this community is uncharacterized, and limited data is available regarding effective participation in this community.
To assess the types of users active in the haemophilia community on Twitter, as well as major themes present in haemophilia-related tweets.
Forty-nine thousand five hundred and twelve tweets between September 2019 and September 2021 were classified using regular expressions. A subset of the classified tweets was manually analysed to identify prevalent discussion themes.
Among the top 250 users by post count, the largest categories of users were support and advocacy groups, people with bleeding disorders and healthcare providers. The largest thematic categories of tweets were gene therapy, contaminated haemophilia blood products, haemophilia research, clinical management of haemophilia and COVID-19. While misinformation was rare, negative and incorrect perceptions of haemophilia were present among the general public.
Our results demonstrate patterns of effective Twitter usage for patient care, research and advocacy purposes among the haemophilia community.
Twitter 上的血友病社区多种多样，其中包括宣传团体、患者、医生、研究人员和其他用户。然而，该社区的范围尚未确定，并且关于在该社区中有效参与的相关数据有限。
评估在 Twitter 上活跃的血友病社区的用户类型，以及与血友病相关推文的主要主题。
使用正则表达式对 2019 年 9 月至 2021 年 9 月期间的 49512 条推文进行分类。对分类推文的子集进行手动分析，以确定常见的讨论主题。
在按发帖数排名前 250 的用户中，最大的用户类别是支持和宣传团体、有出血性疾病的人和医疗保健提供者。推文的最大主题类别是基因治疗、受污染的血友病血液制品、血友病研究、血友病的临床管理和 COVID-19。虽然错误信息很少，但公众对血友病存在负面和不正确的看法。
我们的结果表明，血友病社区在患者护理、研究和宣传方面有效利用了 Twitter。
