In this study, we aimed to reveal the characteristics of accounts posting cancer-related information on the Twitter social media platform. This was the first study to describe the characteristics of major cancer-related tweets in Japan. Among three types of cancer investigated, the most tweets were related to breast cancer. For three types of cancer, a relatively low proportion of tweets originated from health care providers or public organizations. However, user backgrounds varied depending on the type of cancer, with breast cancer topics mainly tweeted by breast cancer survivors and lung cancer topics mostly tweeted by Survivor’s
family members. Our study suggested that the user demographics and purposes of using social media differ depending on the type of cancer. We also analyzed which account types were most likely to have an impact, finding that tweets from health care providers or public institutions did not rank highly. We found that tweets from news accounts were likely to receive more attention, and for breast cancer in particular, survivors were highly represented among the top 50 most liked tweets.
According to a survey by Israeli Stop Cancer, an online social media platform with more than 20,000 registered members, the most common diagnoses were breast cancer (31%), lymphoma (24%), leukemia (10%), and colon cancer (8%) 21,22. Consistent with these previous reports, we demonstrated that breast cancer was the most prevalent type of cancer, followed by lung and colon cancers. The age of onset of the disease is believed to be a crucial factor contributing to the high number of tweets related to breast cancer. Compared with lung and colon cancer, patients with breast cancer include a higher proportion of adolescents and young adults (AYAs). AYAs undergoing cancer treatment tend to use social media platforms in distinctive ways. Social media can potentially facilitate social support for AYAs, thereby helping them overcome the challenges posed by traditional in-person support groups 6,21. Additionally, social media can aid in connecting patients with similar diagnoses or in maintaining friendships formed during the course of treatment6. According to patient-reported outcomes in a Twitter survey for patients with breast cancer, participation in the Twitter #BCSM (Breast Cancer Social Media Twitter support community) reduced perceived anxiety related to breast cancer23. Some AYAs with cancer have reported the establishment of new and strong connections with peers met through social media platforms, leading to a less stigmatizing form of support.
Caregivers are acknowledged as a susceptible group that offers vital psychosocial assistance to patients with cancer, but caregivers are at higher risk of elevated psychological distress and unaddressed needs24. In particular, for pediatric cancer, creating a network of support on social media has been reported to assist parents in accepting their child’s diagnosis and coping with the situation25. Although we did not focus on pediatric cancer in our study, the proportion of accounts held by Survivor’ family members varied according to the type of cancer, with relatively high numbers observed for lung cancer related tweets. The degree of symptoms endured by patients with lung cancer has been documented to be more severe than those of other cancer types26, leading to compromised functionality with an accompanying detrimental effect on overall quality of life27. A systematic review reported that stress among caregivers of patients with lung cancer is influenced by factors such as the patient’s disease stage, the relationship with the patient, social support, and coping methods24. Given these backgrounds, our results suggest that families of patients with lung cancer may be more likely to seek support networks on social media.
A previous survey reported that the motivation among patients with cancer for using social media was for emotional coping in 74% of patients, and social media was used to obtain medical information in 45% of patients21. However, current regulations regarding the dissemination of such information are deemed inadequate. Patients and their family members must take responsibility for selecting the information to focus on, which can be challenging with a non-professional background. Because information that is accessible through social media can considerably affect the decisions made by patients, providing medically accurate and helpful information via social media is crucial. The dissemination of evidence-based information by governments, medical institutions, and professionals is of great importance. However, our study indicated that there were few cancer-related messages on Twitter from public institutions and health care providers, and these messages did not receive much attention. In Japan, hospitals and clinics are unlikely to use social media platforms like Twitter for health promotion purposes, and more than half of these institutions only post notifications or hospital and clinic news12. Although we did not analyze the specific characteristics of tweet content, our findings indicated that health-related information from public organizations on Twitter in Japan is limited. Social media platforms offer a valuable opportunity for oncology professionals to disseminate reliable and evidence-based information, making it a vital teaching platform. Physicians using social media can be classified into three groups: those involved in professional education or continuing professional development, public health messaging or education, and direct interaction with individual patients for clinical purposes28. By leveraging social media, awareness about clinical trials in oncology can be enhanced and participation rates can be increased. Furthermore, social media platforms can be used by physicians to distribute and exchange information with other health care professionals, making it an invaluable tool. However, our data indicate that health care providers and public organizations have not been very active in disseminating information about cancer, suggesting that medical professionals in Japan may not be effectively using social media to improve the informational environment surrounding cancer.
In the evaluation of follower count among the top 50 accounts, News accounts had a high number of followers and accounted for a considerable proportion of retweets and likes. This observation suggests that news accounts possess the ability to exert a substantial influence on a large number of people. A study of frequently accessed news articles about breast cancer indicated that 13% of news items, which were classified as rumors with low confidence levels, were shared 3.29 times more often than news with verified content29. The implications of that study are far-reaching as news stories that were classified as rumors were reportedly shared over 5,700,000 times. There were no dissimilarities in the quantity of followers across cancer types within Survivor, Health care provider, Public organization, and Private institution account types. However, the number of followers among Survivor’s family accounts was significantly greater for colon cancer, although the rationale behind this discrepancy is unclear. These findings indicate that the dissemination capacity according to account category did not vary significantly across the various types of cancer investigated.
This study had some limitations. First, the data collection period was short and limited because the regulations of the Twitter API only allowed us to search up to the 7 days prior to the search date. Although it is unclear whether the distribution of accounts throughout the year was the same, the search period did not coincide with any cancer-related academic conferences or international awareness events; therefore, the effect of the limited search period is likely to be small. Second, the Other account group may have potentially included accounts that were classified incorrectly because we manually classified the account categories based on the user name or texts in profiles and posted tweets.