The Emerging Impact of Social Media on Cancer Patient Education in Japan.

In their recent article, Badihian et al. stated that the attitude towards cancer and patients with cancer among the general public in Iran is an important factor affecting the cancer control program [1]. Similar issues with perceptions of cancer exist in Japan. Here we describe the potential of social media as a means of improving cancer awareness in Japan.

In Japan, there are misconceptions and social stigma about cancer; despite treatment advances, common belief associates the word “cancer” with images of death. Historically, physicians sometimes did not inform patients directly of cancer diagnoses [2], [3]; this has changed since the 1990s with the spread of informed consent practice [4]. However, the stigma of death and the belief that many cancers are hereditary still exist in Japan, and it is typical for patients not to disclose their cancer diagnosis to others or talk about cancer in public.

Japan's social media is perhaps unique in the developed world in prevalence of use. According to statistics from December 2011, the number of Internet users in Japan was over 101 million, corresponding to about 80% of the population. These users spent an average of 2.9 hours per day on the Internet, which was longer than the time for users in the U.S. (2.3 hours). Facebook, with over 10 million active monthly users, and Twitter, with 30 million accounts, are the most popular microblogging sites. YouTube reaches almost 47% of the population [5], [6]. Because of this vast capability to reach the general population, we believe that social media can have a tremendous societal impact in Japan and, specifically, an impact on cancer patient education. Two examples illustrate the potential unique impact of social media.

The song “Fortune Cookie in Love” (Japanese title: “Koisuru Fortune Cookie”) was a hit in 2013 by AKB48, a popular all‐female group. The group itself has no association with cancer. Inspired by the easy and fun dancing style of the song, many videos that imitated AKB48's music video were posted on YouTube. In fall 2013, cancer health care providers in Japan and at MD Anderson Cancer Center in the U.S. created a dance video inspired by “Fortune Cookie in Love” [7], with the themes of a team approach to treatment of cancer and patient support. This video was accepted for posting on the official YouTube AKB48 channel. To date, the number of views has exceeded 600,000. Many patients and nonpatients have left comments, such as “This video encourages patients fighting cancer.” Although many of the fans of AKB48 are men, this video by cancer professionals was widely accepted regardless of gender or age. This video is a successful social media model of a non‐cancer‐related trend being used to create an impact among the cancer community in Japan.

Ms. Mao Kobayashi was a Japanese former newscaster who was diagnosed with breast cancer at the age of 32 years. She revealed her cancer on her blog (titled “KOKORO,” which means heart or inner mind), posted regularly about the process of fighting the disease, and even updated the blog until just two days before her death [8]. Ms. Kobayashi conveyed her “real life” as it happened. As the blog became known among people with the same illness and their families, it became a place where others could find comfort. The number of readers registered on the blog has reached over 2.7 million. Ms. Kobayashi was selected as one of the top 100 influential women of 2016 by the BBC [9]. Unfortunately, she passed away on June 22, 2017. She made a tremendous impact by disclosing her disease and describing and destigmatizing the medical care process.

These examples illustrate how social media can have a positive impact on cancer education in Japan. Such social media activities do not diminish the importance of face‐to‐face advocacy activities for patients. However, for those who prefer to maintain privacy about their cancer condition, social media can be a precious source of information and place to communicate. A problem is that the accuracy of the information available on social media varies, and it is very important for the general public to acquire health literacy on cancer information. Guidelines for social media use by health care providers have been developed, such as those by the American Society of Clinical Oncology [10], but there are no clear guidelines for the general public in Japan. Efforts to raise information literacy about cancer care in Japan are necessary, and social media guidelines for both health care providers and the general public would benefit this unique online society.