Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) on Social Media: #BPDCN—Increasing Exposure over Two Years Since Inception of a Disease-Specific Twitter Community
Purpose of Review
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.
KeywordsSocial media Twitter Blastic plasmacytoid dendritic cell neoplasm BPDCN Disease-specific hashtag Rare disease Rare cancer
The authors thank Dr. Matthew Katz and the creators of the Cancer Ontology Tag (CTO) Program for their inspiration, and the founders and members of Symplur, and the Healthcare Hashtags Project for their continued analysis and support.
This research is supported in part by the MD Anderson Cancer Center Support Grant P30 CA016672.
Compliance with Ethical Standards
Conflict of Interest
Naveen Pemmaraju has received Honorarium/Consulting and/or Research/Grant & Clinical trial support from Novartis, LFB, Incyte, Stemline, Cellectis, Abbive, Affymetrix, Celgene, Samus, Plexxikon, Daiichi Sankyo, MustangBio, SagerStrong Foundation. Audun Utengen is a Co-founder of Symplur. Vikas Gupta received research grants from Novartis, Incyte, through his institution; served on scientific advisory board of Novartis and received honorarium from Novartis. Michael A. Thompson has been on Advisory Boards for: AIM Specialty Health. Andrew A. Lane has received funding from Stemline (research support and consulting), N-of-one (consulting).
Human and Animal Rights and Informed Consent
This article does not contain any studies with human or animal subjects performed by any of the authors.
Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance
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