Pemmaraju Naveen, Utengen Audun, Gupta Vikas, Thompson Michael A, Lane Andrew A
Department of Leukemia, The University of Texas M.D. Anderson Cancer Center, Unit 428, PO BOX 301402, Houston, TX, 77230-1402, USA.
Symplur LLC, Los Angeles, CA, USA.
Curr Hematol Malig Rep. 2018 Dec;13(6):581-587. doi: 10.1007/s11899-018-0490-6.
Engagement on social media for professional, healthcare-related communication is rapidly rising around the world. We aimed to better understand the dynamics of a rare disease Twitter hashtag community.
Twitter has served as a platform for academic discussion, a method for knowledge dissemination directly from medical meetings, and a venue for patient caregiver and support groups. One example of a rare cancer that has seen an increase in available information via Twitter is blastic plasmacytoid dendritic cell neoplasm, or BPDCN. This field has recently experienced a new wave of interest from various healthcare stakeholders in light of key new scientific breakthroughs and novel clinical trials now starting to be available. In order to bring all relevant healthcare stakeholders together, the investigators of this article created a disease-specific Twitter community: #BPDCN = "blastic plasmacytoid dendritic cell neoplasm on social media" which has led to higher levels of engagement and discussion in the field. This article focuses on our analysis of advanced Twitter user-metrics in the second year of #BPDCN and discusses future directions for this rare cancer online disease community.
在全球范围内，通过社交媒体进行专业的、与医疗保健相关的交流活动正在迅速增加。我们旨在更好地了解罕见病推特主题标签社区的动态。
推特已成为学术讨论的平台、直接从医学会议传播知识的方法以及患者护理人员和支持团体的场所。通过推特可获取的信息有所增加的一种罕见癌症的例子是母细胞性浆细胞样树突状细胞肿瘤（BPDCN）。鉴于关键的新科学突破和新的临床试验现已开始，该领域最近受到了各医疗保健利益相关者的新一轮关注。为了将所有相关的医疗保健利益相关者聚集在一起，本文的研究人员创建了一个特定疾病的推特社区：#BPDCN = “社交媒体上的母细胞性浆细胞样树突状细胞肿瘤”，这导致了该领域更高水平的参与和讨论。本文重点分析了#BPDCN第二年的高级推特用户指标，并讨论了这个罕见癌症在线疾病社区的未来方向。
