Brain Tumor Discussions on Twitter (#BTSM): Social Network Analysis

Abstract

Background The Brain Tumor Social Media (#BTSM) Twitter hashtag was founded in February 2012 as a disease-specific hashtag for patients with brain tumor. 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, 59,764 unique users participated in #BTSM, amassing 298,904 tweets. The yearly volume of #BTSM tweets increased by 264.57% from 16,394 in 2012 to 43,373 in 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 health care professionals and researchers.

How social are open-access debates: a follow-up study of tweeters' sentiments

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Use of Social Media in Health Care—Opportunities, Challenges, and Ethical Considerations

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Patients Are Knowledge Workers in the Clinical Information Space

“…62 Further, Riggare 63 writes about the need for and the value of persons with lived experiences with illness engaging in research. Twitter stakeholder communities, including patients and clinicians, such as #BTSM (brain tumor social media) 64 and #BCSM (breast cancer social media), 65 (among numerous other benefits) inform research ranging from bringing together ad hoc collaborations and developing research and operational questions, to disseminating research findings, not to mention serving as research mechanisms. Last but not least, using the term "patients marshaled epistemic authority," a recent publication highlights how it is patients, through social media, that shed research attention on "long-haul Covid."…”