A review of posts with the hashtag #BCSM on Twitter has found that the social media site could be a more useful resource both for patients seeking support and for physicians and researchers, according to a recent study.

The hashtag, an abbreviation for “breast cancer social media,” first appeared on Twitter in 2011, and was created by 2 cancer survivors. It was originally used to curate a weekly informational chat for patients with breast cancer. Deanna Attai, MD, lead author of the study and an assistant clinical professor of surgery at the David Geffen School of Medicine at the University of California, Los Angeles, became a moderator soon after the weekly chats began.

“We physicians have a lot to learn from the online patient communities,” Attai said in a press release. “Tapping into this gold mine of experience will ensure that when we design research studies, we are asking questions that are actually relevant and important to patients.”

Between the hashtag’s inception and January 1, 2020, the authors found that #BCSM was used more than 830,000 times by more than 75,000 unique Twitter accounts, generating 4 billion impressions. It was used 145,600 times in 2019 alone, an increase of 424% since 2011, when it was used 27,700 times.

According to a press release, the study is intended to help researchers understand the impact of the community that developed around the Twitter chat. It reveals that the growing popularity of #BCSM paralleled the rise of social media in everyday life, demonstrating that many people with breast cancer are turning to online communities for support and education. Since 2011, the hashtag has made it easy for patients to find support and useful content, and for family members, caretakers, physicians, researchers, and others to find reliable information.

“The #BCSM online community has experienced tremendous growth since its inception because it has helped fulfill a need among patients who were searching for information and support on the platform,” Attai said. “But it has also helped us physicians gain insight into the patient perspective and has given us a better understanding of their many issues. We often see patients in a much different setting. Compared to our exam room interactions, online is a more raw, unvarnished look into what patients are really going through.”

The investigators said the inclusive nature of the hashtag may have also contributed to its popularity because it is not restricted by gender or by patients’ stage of disease. However, its breadth may also limit how sustainable the community will be, because as cancer therapy becomes more personalized, people may increasingly seek out support groups aligned with their own clinical situations.

Pharmacists and other medical experts also have a great opportunity to use social media to correct misconceptions, provide guidance, and steer patients toward credible sources, according to Attai. The investigators found that the number of health care professionals using the hashtag has grown significantly, from 96 at the end of 2011 to more than 3000 in 2019.

REFERENCE
How a Twitter hashtag provides insights for doctors and support for people with breast cancer [news release]. UCLA; October 22, 2020. https://newsroom.ucla.edu/releases/bcsm-twitter-breast-cancer-support. Accessed October 27, 2020.