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

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.

Organizing Online Health Content: Developing Hashtag Collections for Healthier Internet-Based People and Communities.

Twitter use has increased among patients with cancer, advocates, and oncology professionals. Hashtags, a form of metadata, can be used to share content, organize health information, and create virtual communities of interest. Cancer-specific hashtags modeled on a breast cancer community, #bcsm, led to the development of a structured set of hashtags called the cancer tag ontology. In this article, we review how these hashtags have worked with the aim of describing our experience from 2011 to 2017. We discuss useful guidelines for the development and maintenance of health-oriented communities on Twitter, including possible challenges to community sustainability and opportunities for future improvement and research.

Family Discussions of Early Childhood Social Transitions.

OBJECTIVE: An increasing number of children are socially transitioning to live as their identified genders rather than their assigned sexes, yet little empirical work has examined the decision-making process surrounding social transitions. We aimed to understand (1) why parents and their gender nonconforming children do and do not consider social transitions and (2) whether families discuss social transitions both before and after initial social transitions. METHODS: Studies 1 and 2 involved telephone interviews of parents of socially transitioned transgender children (N=60) and gender nonconforming children who were not socially transitioned (N=60), respectively. Study 3 involved an online survey of 266 parents of socially transitioned transgender children. RESULTS: Parents of socially transitioned transgender children (Study 1) and parents of gender nonconforming children who are not socially transitioned (Study 2) often reported that their children had led the decision to transition or not. Most parents of gender nonconforming children who had not transitioned had discussed transitioning (Study 2) and most parents of socially-transitioned transgender children reported discussing the option of future re-transitions (Study 3). CONCLUSIONS: Parents often report that they and their children are discussing social transitions, a process that children are leading. In contrast to possible concerns about discussing transitions, our results suggest that many families openly discuss the possibility of their children transitioning (or re-transitioning), yet these discussion do not inevitably lead to an imminent transition.

Engaging Transgender Patients: Using Social Media to Inform Medical Practice and Research in Transgender Health.

Despite accelerated growth in the field of transgender health, mistrust between trans patients and their providers persists. Insufficient education for providers, research that overlooks patients' foremost concerns, and continued stigma and discrimination in medical settings are among the main barriers leading trans patients to delay or avoid care. Consequently, the transgender community often turns to social media as a self-serve resource for medical knowledge. This article discusses the benefits of directly engaging the trans community using social media to educate professionals, drive relevant research, and inform practice, to ultimately deliver higher quality care.