A new study from UCLA published in the Journal of Patient-Centered Research and Review suggests that social media can be a positive resource about cancer information for patients, physicians, and researchers. The study reviewed social media posts from the last nine years with the #BCSM, standing for breast cancer social media, which first surfaced on Twitter in 2011.
"We physicians have a lot to learn from the online patient communities," said lead author Dr. Deanna Attai, an assistant clinical professor of surgery at the David Geffen School of Medicine at UCLA. "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."
#BCSM was created by two cancer survivors in order to generate a weekly informational chat for people with breast cancer. However, since 2011, it has grown and is now a goldmine for people with breast cancer, their family members, patient advocates, physicians, researchers, journalists. Dr. Deanna Attai is one of the group's moderators.
According to the study’s analysis, more and more people were using #BCSM as a source of support and education. In the last nine years, #BCSM was used more than 830,000 times by more than 75,000 unique Twitter accounts; in 2019 alone, it was used 145,600 times. Importantly, notes Attai, This, explains Attai, the number of health care professionals who use the hashtag grew from 96 in 2011 to over 3,000 in 2019. Attai thinks that’s because #BCSM provides an opportunity for physicians to get an inside look at patients’ emotional and physical needs.
"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," said Attai, who is also a member of the UCLA Jonsson Comprehensive Cancer Center. "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."
Chat topics trending with the hashtag have included survivorship, metastatic breast cancer, death and dying, advocacy, and highlights from national breast cancer meetings, report the researchers. The online forum space offers both a broad depth of knowledge and resources as well as the possibility to find community in an isolating situation.