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Curr Hematol Malig Rep. 2017 Dec;12(6):598-604. doi: 10.1007/s11899-017-0421-y.

Rare Cancers and Social Media: Analysis of Twitter Metrics in the First 2 Years of a Rare-Disease Community for Myeloproliferative Neoplasms on Social Media-#MPNSM.

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Department of Leukemia, The University of Texas MD Anderson Cancer Center, Unit 428, PO Box 301402, Houston, TX, 77230-1402, USA.
Symplur LLC, Los Angeles, CA, USA.
The Elizabeth and Tony Comper MPN Program-Princess Margaret Cancer Center, Toronto, Ontario, Canada.
CIC (Clinical Investigations Center INSERM CIC 1427), Hôpital Saint-Louis and Université Paris Diderot, Paris, France.
University of Texas Health San Antonio Cancer Center, San Antonio, TX, USA.
Aurora Research Institute, Aurora Health Care, Milwaukee, WI, USA.



The use of social media has now become a standard means of communication for many individuals worldwide. The use of one specific form of social media, Twitter, has increased among healthcare providers, both as a means of information gathering and as a conduit for original content creation. Recently, major efforts by users have been put forward to help streamline the unprecedented amount of information that can be found on Twitter. These efforts have led to the creation of diseasespecific hashtag (#) medical communities and have greatly enhanced the ability to understand and better categorize the available data on Twitter. Specifically, for those involved in rare cancer fields, adhering to organically designed and consistently used hashtags has led to the rapid, reliable dissemination of information and the ability to efficiently discuss and debate topics of interest in the field. For the field of myeloproliferative neoplasms (MPNs), the creation of #MPNSM (myeloproliferative neoplasms on social media) in 2015 has facilitated interactions among healthcare stakeholders from all over the world in the MPN field.


In order to better understand the trends and topics of interest to Twitter users of this novel medical community, we conducted the present analysis which focuses on Twitter analytics from the first two years of #MPNSM. In this analysis, we observed a sustained increase in the number of Twitter users, number of tweets, number of impressions, and number of retweets over time, demonstrating the feasibility of creating and maintaining a disease-specific hashtag for a rare cancer over time.


Disease-specific hashtag; Essential thrombocytosis; MPN; Myelofibrosis; Myeloproliferative neoplasm; Polycythemia vera; Social media; Twitter

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