Cancer patients on Twitter: a novel patient community on social media

Abstract

BackgroundPatients increasingly turn to the Internet for information on medical conditions, including clinical news and treatment options. In recent years, an online patient community has arisen alongside the rapidly expanding world of social media, or “Web 2.0.” Twitter provides real-time dissemination of news, information, personal accounts and other details via a highly interactive form of social media, and has become an important online tool for patients. This medium is now considered to play an important role in the modern social community of online, “wired” cancer patients.ResultsFifty-one highly influential “power accounts” belonging to cancer patients were extracted from a dataset of 731 Twitter accounts with cancer terminology in their profiles. In accordance with previously established methodology, “power accounts” were defined as those Twitter accounts with 500 or more followers. We extracted data on the cancer patient (female) with the most followers to study the specific relationships that existed between the user and her followers, and found that the majority of the examined tweets focused on greetings, treatment discussions, and other instances of psychological support. These findings went against our hypothesis that cancer patients’ tweets would be centered on the dissemination of medical information and similar “newsy” details.ConclusionsAt present, there exists a rapidly evolving network of cancer patients engaged in information exchange via Twitter. This network is valuable in the sharing of psychological support among the cancer community.

Dermatopathology and Social Media

“…[5][6][7][8] It has also been used by cancer patients to assemble support communities; some pathologists have interacted directly with cancer patients via these social media patient support groups. [9][10][11][12][13][14][15] Medical journals may use social media as a way of reaching a broader audience. One radiology journal used Twitter ''tweet chat'' sessions to increase its audience and expand readership.…”

Using Twitter for Data Collection With Health-Care Consumers

“…Users' profiles were also examined for context (Hewis, 2015) to clarify tweet content and increase accuracy. Studies also used predetermined criteria to aid decision-making, when deciding to include or exclude tweets as part of the data (Ahltward et al, 2014;Sugawara et al, 2012). While these novel solutions overcame some challenges, there were difficulties scaling these solutions to larger data sets using Twitter's search and stream functions.…”

“…Qualitative studies (n ¼ 7) were published within the last 3 years, with the exception of one study in 2012 (Sugawara et al, 2012). One article was from Australia (Hewis, 2015), three from Japan (Sugawara et al, 2012;Tsuya, Sugawara, Tanaka, & Narimatsu, 2014), three from the United States (Nakhasi et al, 2016;Nascimento et al, 2014;Shive, Bhatt, Cantino, Kvedar, & Jethwani, 2013), one from New Zealand (Henzell, Knight, Morgaine, Antoun, & Farella, 2014).…”

“…Four studies collected data prospectively (Henzell et al, 2014;Nascimento et al, 2014;Shive et al, 2013;Sugawara et al, 2012). All seven qualitative studies also used various tools and programs to search for and collect data in addition to tweets including key words, phrases, or geolocations attached to the Twitter post or profile (Henzell et al, 2014;Hewis, 2015;Nakhasi et al, 2016;Nascimento et al, 2014;Shive et al, 2013;Sugawara et al, 2012;Tsuya et al, 2014).…”

“…One article was from Australia (Hewis, 2015), three from Japan (Sugawara et al, 2012;Tsuya, Sugawara, Tanaka, & Narimatsu, 2014), three from the United States (Nakhasi et al, 2016;Nascimento et al, 2014;Shive, Bhatt, Cantino, Kvedar, & Jethwani, 2013), one from New Zealand (Henzell, Knight, Morgaine, Antoun, & Farella, 2014). Qualitative studies examined health focuses including patient safety (Nakhasi et al, 2016); infodemiology of self-reported migraine headache suffering (Nascimento et al, 2014); acne (Shive et al, 2013); orthodontics (Henzell et al, 2014;cancer (breast, leukemia, colon cancer, rectal cancer, colorectal, uterine, stomach, lung, and ovarian;Tsuya et al, 2014); magnetic resonance imaging patient's perspectives (Hewis, 2015); Twitter usage and its role in "wired" cancer patients (Sugawara et al, 2012).…”