#BCSM brings breast cancer survivors, clinicians closer together

BY SARA FREEMAN


Since it was first used in 2011, the Twitter hashtag #BCSM – an abbreviation for “breast cancer social media” – has created an online community of patient advocates, clinicians, and researchers.

Now, research published in the Journal of Patient-Centered Research and Reviews tracks the history of the hashtag, highlighting how #BCSM’s use in tweets has increased dramatically over the past 9 years and helped to form the first Twitter-based breast cancer support community.

“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 [Twitter] platform,” said study author Deanna Attai, MD, an assistant clinical professor of surgery at the University of California, Los Angeles.

Dr. Attai has been part of the #BCSM community from the beginning and still comoderates the weekly Monday night conversations that started it all.

“The hashtag has really come to represent not only the weekly chats, but also a way to find and filter breast cancer information,” Dr. Attai said in an interview. “People tend to now tag any information that they’re posting at whatever time of the day or night that’s related to breast cancer with #BCSM.”


Dr. Deanna Attai

 


#BCSM and the #BCSM community

The BCSM hashtag was the idea of two U.S.-based breast cancer survivors, Jody Schoger and Alicia Staley, who had met online through their participation in another Twitter chat group that used #HCSM (health care communications and social media).

#HCSM covered health care and cancer generally, but Ms. Schoger and Ms. Staley felt there was a need for a more specific Twitter channel for those affected by breast cancer.

Following the #HCSM format, Ms. Schoger and Ms. Staley decided to use #BCSM and moderated their first Twitter chat on breast cancer on Monday, July 4, 2011. Since then, the hashtag has grown into a large #BCSM community that exists outside of the 1-hour designated chat time-slot.

As of Jan. 1, 2020, #BCSM has been included in 830,925 tweets from 75,685 different accounts and made 4.2 billion impressions (a measure of potential tweet views).

#BCSM might not be an intuitive hashtag, acknowledged Dr. Attai, but it’s one that has come to represent the community that uses it.

“#Breastcancer is a very broad hashtag,” she said. “#BCSM has a little bit different meaning.”

She observed that the intention from the start had been to ensure that the #BCSM chats only covered evidence-based information that had been vetted.

“I think that is one of the advantages of some of these cancer-specific communities now that have really taken ownership of the hashtag. You’re not going to find a lot of fluff or ‘snake oil’ type of information,” Dr. Attai said.

Keeping Twitter chats in check might seem like a challenge, but the community is really good at policing itself, Dr. Attai said, noting that there was an etiquette to participating and that it was perfectly fine for people to “lurk and listen” and participate only when they felt they wanted to.

Image credit: In Green/Shutterstock


Large increase in #BCSM use in tweets

There has been a large increase in the use of #BCSM over the years, Dr. Attai and coauthors noted in their paper tracking the history of the hashtag. In 2019 alone, the hashtag was used 145,619 times, versus 27,781 times in 2011. 

Symplur Signals was used to evaluate use of the hashtag by selected stakeholder groups, such as patient advocates, caregivers, doctors, and other health care professionals. User locations were examined alongside the weekly tweet chat activity and topics covered. 

Topics that have been covered include survivorship concerns, metastatic breast cancer, death and dying, advocacy, and highlights from national breast cancer meetings, such as the upcoming San Antonio Breast Cancer Symposium.

Beyond #BCSM 

Being part of the #BCSM community makes you a better clinician and researcher, Dr. Attai asserted. This view was echoed by one of her coauthors, Matthew Katz, MD, a radiation oncologist at Lowell (Mass.) General Hospital.

“I learned a tremendous amount,” Dr. Katz said in an interview. “I had insights as a clinician as to what people similar to my patients were struggling with, in a way that gave me a way to help my own patients. It was a very supportive environment, very active and engaged.”

Dr. Katz said #BCSM gave him a better understanding of patients’ concerns about body image, fear of recurrence, or dealing with continued stress despite finishing treatment for their cancer. 

“By hearing people describe their fears and concerns, I was able to ask more careful questions when I was seeing my own patients for follow-up visits after their treatment was complete,” Dr. Katz observed. 


Dr. Matthew Katz

As well as writing the #BSCM paper together, Dr. Katz and Dr. Attai have collaborated with several others on a project to create a set of cancer-specific hashtags. From #ADCSM (adrenal cancer social media) through to #TSCSM (testicular cancer social media), there are now hashtags for most cancer types. Of these, #LCSM (lung cancer social media), #GYNSM (gynecologic cancers social media), and #BTSM (brain tumors social media) have perhaps the most active communities behind them that hold regular online chats.

Using Twitter may not be for everyone, Dr. Katz conceded, but, for those who are already online and using it, Twitter can be a very powerful way to find information and connect with others. Finding the right information then becomes important, which these very specific hashtags allow. When people use these purposefully, “it is more like tuning into a radio station and a channel for information that maybe you can rely upon a little bit more,” said Dr. Katz.

“Our patients are online, and we really need to pay attention to these conversations,” Dr. Attai said. “Social media kind of levels the playing field, and we get a different conversation when we listen in the online space than we do in our exam rooms.”

Dr. Attai and Dr. Katz had no relevant conflicts of interest to disclose.