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

Health-focused websites have become an increasingly valuable information source for cancer patients in recent years, with such patients seeking details about treatment options for their specific condition as well as about general cancer information [1–3]. These websites provide a means of communication for patients and their families that is more convenient and less expensive than that provided by traditional face-to-face patient-serving health organizations [2]. In a previous study, we suggested that patient-authored web logs (or “blogs”) represent a unique form of information delivery as they provide useful personal insights about cancer treatment that are unlike the information often conveyed by healthcare providers through face-to-face interactions and standard media [1]. Such patient-centric sites are also becoming a valuable source of personalized health information for the increasingly “wired” cancer-patient communities across the globe.

Attendant to the continuing rise in social media (“Web 2.0”) participation and the resulting proliferation of user-generated online content, the public can thus potentially play a larger role in all stages of knowledge translation, including information generation, filtering and amplification. As with the Internet itself, social media outlets run the gamut of just about every imaginable scope and size, with Twitter, a free social-networking and micro-blogging service launched in 2006, taking the lead as a method of disseminating exceptionally brief online messages to a potentially global audience; Twitter enables its millions of users to send and read each other’s “tweets,” or short messages limited to 140 characters, with the users themselves determining whether their tweets can be read by the general public or restricted to preselected “followers.” Followers of a specific Twitter user can view or respond to tweets online or via smart phones and other handheld devices, allowing for a nearly instantaneous dialogue between the user and his or her followers. The service has more than 190 million registered users worldwide and processes about 55 million tweets per day [4]. The Twitter service started in Japan in 2008; at present, there are more than 10.2 million active Twitter accounts registered in the country [5].

A recent health-focused analysis of the American “Twitter stream” revealed that a substantial proportion of tweets contain general chatter, user-to-user conversations that are only of interest to the parties involved, links to interesting pieces of news or self-promotion or unwanted “junk” messages (i.e., spam) [4]. Yet despite its high level of noise, the Twitter stream does contain useful information. Many recent news events or scientific issues have been documented and discussed via Twitter directly from users at the site in real time [6].

As tweets are often sent on location via smart phones and other handheld platforms,they convey more immediacy with interactivity than other websites or blogs [4]. In addition, healthcare providers and medical researchers are increasingly using Twitter for a variety of purposes related to patient care and treatment, including sharing clinical news with patients and discussing case studies with fellow physicians [7–11]. A recent JAMA letter showed that physicians frequently use Twitter to share medical information, with nearly half of the studied tweets being devoted to the discussion of health topics; the authors found that physicians’ rapid and timely dissemination of such information via Twitter could potentially positively influence public health in a variety of ways [12].

Recent research has also shown that Twitter may also be a useful medium for patients, who use Twitter to exchange medical information and discuss various aspects of their individual illness; although detailed information about patients’ use of Twitter for such purposes has yet to be fully studied, it has been shown that some patients with breast cancer, chronic kidney disease, diabetes and inflammatory bowel disease have used Twitter for the purpose of sharing information about these conditions [13–18].

Twitter is an interactive, real-time medium that can be used at a relatively low cost in terms of users’ initial and ongoing monetary investment and in the time, effort and expertise required for use. Furthermore, as has been described above, Twitter has been effectively used in recent years for the dissemination of medical news and advice, as well as the delivery of “personal stories” related to a number of health topics. As a result, Twitter can be considered to have the potential to play an important role in modern social communities, including online communities consisting of “wired” cancer patients. However, the research conducted to date regarding the role of social media in influencing cancer patients remains very limited. In this study, we examine recent Twitter usage in Japan and evaluate its role in the lives of today’s “wired” cancer patients.

This study indicated that Twitter could be a valuable medium for sharing information among cancer patients. A total of 51 Japan-based cancer patients with Twitter accounts were determined by our study to be influential Twitter users as based on their having 500 or more Twitter followers. Although this study examined a considerably smaller sample of influential Twitter users (n=51) than did a previous United States-based study of the “power accounts” of influential tweeting physicians (n=260) [12], our research revealed that cancer patients can empower themselves by tweeting information about their own medical condition and treatment and by providing a forum for the discussion of specific topics.

The breakdown of influential accounts was found to be in the order of breast cancer, leukemia, colon cancer, cancer of the uterus and malignant lymphoma; this differs significantly from the order of cancer prevalence in Japan, in which the top 5 types of cancer are, in descending order: stomach cancer, lung cancer, colon cancer, breast cancer and liver cancer [19]. We found it interesting that the cancer prevalence of our influential users and the general population were so dissimilar. We expect that this discrepancy is associated closely with the widespread Internet usage of the younger population, which made up a disproportionate percentage of our studied Twitter users. Compared with other cancers in our study, breast cancer was seen most in women in their late 30s to early 40s. The Internet usage rate of Japanese women in this age range is as high as 95% [24]; we believe that this high Internet literacy confirms our findings.

Furthermore, while malignant lymphoma or leukemia is a disease with lower numbers of affected people, we found users with these types of cancer to be highly influential in terms of their Twitter connections. This may be a result of the background in which the treatments for leukemia or malignant lymphoma are mainly centered on chemotherapy, with a long treatment period, indicating that treatment for the disease affects the daily life of these patients for a prolonged period. These patients are thus also more likely to have more opportunities over an extended period of time to engage in timely discourse about their individual conditions and treatment.

To better understand how cancer patients influence their followers via Twitter, direct investigation involving the use of a survey of cancer patients with Twitter accounts may be necessary in the future. Examining the distribution of user activities did not reveal any significant differences among the different types of cancer noted in users’ profiles. On the other hand, our study showed that a smaller number of extremely active accounts existed for each type of cancer examined (Figure 3). Under the hypothesis that such small numbers of active users serve as the center of the patients’ networks on social media, we investigated the connections related to the most active users. As a result, we were able to demonstrate that information was exchanged in real time among patients (Figure 4). Based on this finding, we were able to demonstrate for the first time that an information exchange network among patients via social media had already been established.

Of further interest to us is the content of the tweets exchanged among patients. Most of the examined tweets included details of daily life such as greetings or messages concerning treatments, and it was found that almost no medical information concerning cancer was exchanged; this went against our initial expectation that cancer patients would use Twitter to primarily discuss specific cancer-related news and medical information.

Our findings demonstrate that patients use Twitter as a tool of psychological support by being connected among patients, even though it is not a standard or face-to-face method of discussing such information. This observation may support the notion that Twitter plays a unique role that is different from similar-seeming Internet tools such as hospital websites in which patients primarily obtain medical information [2] or blogs in which patients can share their experiences [1]. We expect that as Twitter usage becomes more widespread in the coming years, there will be an attendant rise in the medium’s importance to maintaining—and perhaps improving—public health [25]. However, the dissemination of Twitter among patients in the future may generate various methods of usage, making it necessary to continue careful observation in the future.

Twitter can be used not only with real names but also anonymously, which is often controversial. In our study, 53% of the accounts included the users’ real names, and 41% of the accounts included personal pictures. Investigation into the Twitter accounts of physicians revealed that 78% of these accounts displayed the users’ real names and personal pictures [12], indicating that anonymity is more preferred among patients than physicians. We expect that this discrepancy can be correlated to the fact that information about individuals’ medical conditions is considered personal and confidential, and that revealing a Twitter account user’s name could lead to the disclosure of potentially private medical details. Many people consider it necessary to maintain anonymity when sharing information through Twitter and other social media; such anonymity may be linked to Twitter’s ability to maintain its relevance among the patient populations that use it.

Twitter users with a variety of types of cancer have proved influential on their followers, as demonstrated through the information exchange engaged in by account owners and their followers. Twitter represents a timely and low-cost medium for cancer patients and others seeking information about specific medical conditions, but our study found that the majority of the tweets posted by the 51 users with “power accounts” focused on conversational details (e.g., greetings, cancer treatments) and psychological support rather than the expected medical news and information. Furthermore, Twitter will need to evolve further in order for patients to fully embrace the power of this social medium, as many people are reluctant to reveal personal details via their Twitter accounts. Our study has demonstrated that Twitter is a powerful medium capable of connecting cancer patients via the establishment of a patient network.