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

Naveen Pemmaraju, Audun Utengen, Vikas Gupta, Jean-Jacques Kiladjian, Ruben Mesa, Michael A. Thompson

The use of social media has now become a standard 13 means of communication for many individuals worldwide. 14 The use of one specific form of social media, Twitter, has 15 increased among healthcare providers, both as a means of 16 information gathering and as a conduit for original content 17 creation. Recently, major efforts by users have been put for- 18 ward to help streamline the unprecedented amount of infor- 19 mation that can be found on Twitter. These efforts have led to 20 the creation of diseasespecific hashtag (#) medical communi- 21 ties and have greatly enhanced the ability to understand and 22 better categorize the available data on Twitter. Specifically, for 23 those involved in rare cancer fields, adhering to organically 24 designed and consistently used hashtags has led to the rapid, 25 reliable dissemination of information and the ability to effi- 26 ciently discuss and debate topics of interest in the field. For the 27 field of myeloproliferative neoplasms (MPNs), the creation of #MPNSM (myeloproliferative neoplasms on social media) in 28 2015 has facilitated interactions among healthcare stake- 29 holders from all over the world in the MPN field. In order to 30 better understand the trends and topics of interest to Twitter 31 users of this novel medical community, we conducted the 32 present analysis which focuses on Twitter analytics from the 33 first two years of #MPNSM. In this analysis, we observed a 34 sustained increase in the number of Twitter users, number of 35 tweets, number of impressions, and number of retweets over 36 time, demonstrating the feasibility of creating and maintaining 37 a disease-specific hashtag for a rare cancer over time.