JMIR Publications

ABSTRACT

Background:

The Brain Tumor Social Media (#BTSM) Twitter hashtag was founded in February 2012 as a disease-specific hashtag for brain tumor patients.

Objective:

To understand #BTSM’s role as a patient support system we describe user descriptors, growth, interaction, and content sharing.

Methods:

We analyzed all tweets containing #BTSM from 2012 to 2018 using the Symplur Signals platform to obtain data and to describe Symplur-defined user categories, tweet content, and trends in use over time. We created a network plot with all publicly-available retweets involving #BTSM in 2018 to visualize key stakeholders and their connections to other users.

Results:

From 2012 to 2018, 59764 unique users participated in #BTSM, amassing 298904 tweets. The yearly volume of #BTSM tweets increased by 264% from 2012 to 2018 with #BTSM constantly trending in the top 15 list of disease hashtags, as well the top 15 list of tweet chats. Patient advocates generated the most #BTSM tweets (33.13%) while advocacy groups, caregivers, doctors, and researchers generated 7.01%, 4.63%, 3.86%, and 3.37%, respectively. Physician use, although still low, has increased over time. The 2018 network plot of retweets including #BTSM identifies a number of key stakeholders from the patient advocate, patient organization, and medical researcher domains and reveals the extent of their reach to other users.

Conclusions:

From its start in 2012, #BTSM has grown exponentially over time. We believe its growth suggests its potential as a global source of brain tumor information on Twitter for patients, advocates, patient organizations as well as healthcare professionals and researchers.