#BCSM: 'Invaluable Tool' for the Breast Cancer Community

Veronica Hackethal, MD

October 27, 2020

Between COVID-19 and the US presidential election, social media has gotten a bad rap. Yet one Twitter group stands out from the fray as a source of positive social connection. The group is #BCSM, or Breast Cancer Social Media, and it's become a social movement.

"#BCSM has been an invaluable tool in my cancer survivorship," cofounder Alicia Staley told Medscape Medical News. "Twitter shrinks the world and connects breast cancer survivors. There's somebody who's always there. BCSM is a great example of what social media can do when you need help or you need to find a community."

Staley ― a three-time cancer survivor ― founded #BCSM in 2011 with Jody Schoger. The two had met serendipitously online and quickly became friends. Both had grappled with breast cancer diagnoses and both were drawn to social media to fill the gaps left by in-person patient support groups. After Staley and Schoger started following #HCSM (healthcare support media) together, they decided to start something similar but specific to breast cancer. #BCSM soon took off, becoming the first breast cancer support community on Twitter.

https://twitter.com/stales/status/86823032840134656

Ten Years and Going Strong

Almost 10 years later, the group is stronger than ever.

A study published on October 27 in the Journal of Patient-Centered Research and Reviews shows just how much #BCSM has gained in popularity.

In the study, Staley worked with senior author Deanna Attai, MD, FACS, a breast surgeon at the David Geffen School of Medicine at the University of California, Los Angelas, who acts as a co-moderator with Stanley for the regular Monday evening #BCSM online chats.

For the study, the team analyzed #BCSM Twitter data from January 2011 to January 2020.

The data came from Symplur, a Twitter database and analytics program that focuses on healthcare. The analysis included 75,685 unique users and 830,925 tweets with the #BCSM hashtag, of which 53.1% (n = 441,313) were unique, not retweets. It also included 4.2 billion impressions, an approximation of the number of people potentially reached and influenced by a tweet (an impression is calculated by multiplying the number of tweets by the number of followers of each chat participant).

Results showed rapid growth for #BCSM between 2011 and 2019. Over this time, the annual number of #BCSM participants increased overall by 3196% (from 602 in 2011 to 19,841 in 2019). The number of patient advocate participants increased by 387% (from 163 in 2011 to 794 in 2019), and the number of healthcare provider participants increased by 3043% (from 96 in 2011 to 3016 in 2019).

Attai said these results highlight the value of the #BCSM hashtag as a way to organize breast cancer–related information and show how it helps people find information very quickly. It also connects the global breast-cancer community with each other: patients, advocates, researchers, and clinicians.

Breast Cancer Professionals Learn from #BCSM

"#BCSM goes beyond healthcare professionals. Anyone and everyone who has breast cancer–related content is using #BCSM," Attai told Medscape Medical News.

"#BCSM has enabled collaborations that wouldn't have been possible before social media," she added.

Examples of these connections include bringing together professionals for panel discussions at scientific meetings; researchers who are writing manuscripts together; researchers and clinicians from across institutions; and patients partnering with researchers. In 2015, #BCSM partnered with the Metastatic Breast Cancer Project to engage in outreach across the United States and promote participation in this massive research project.

For researchers whose trials have been put on hold during COVID-19, #BCSM may also provide opportunities for dealing with challenges brought about by the pandemic.

"Medicine is notorious for working in silos. Social media can help break down some of those silos, especially in academic medicine," Attai said.

Beyond professional connections, #BCSM represents a "unique window" into the patient experience that doctors don't always get to see, she added.

https://twitter.com/Lex_in_CO/status/1318372698729246721

"Participating in the chats made me aware of this whole other life of our patients. Online, they share the good, the bad, and the ugly with their peers," Attai commented. "These messages may not come out in a routine clinic visit no matter how patient focused you are."

In an earlier study, Attai and colleagues showed that #BCSM seems to have a positive impact on patients' lives. That study included 206 #BCSM participants who responded to an online survey. Among these, 80.9% (n = 153/189) said that taking part in #BCSM increased their overall knowledge of breast cancer, and 31.2% (59/189) said that participation influenced them to seek a second opinion or bring new information to their medical team. Respondents also reported a lessening of anxiety; among those who reported high or extreme anxiety before participation, 67% (29 of 63) said they had low or no anxiety after participating (P < .001).

"#BCSM has led me to ask my questions differently," Attai said. "An important message to physicians is that participating in a patient support community shows us that we have a lot to learn from these patients and their communities."

Relationships in Online Communities Are Real

On May 18, 2016, #BCSM cofounder Jody Schoger died from metastatic breast cancer. That same day, another #BCSM member also died. It was Monday, and the weekly chat that evening focused on their memories. For at least 2 weeks afterward, #BCSM continued to provide support for community members who were grieving.

https://twitter.com/DrAttai/status/732924377725984771

"This was a transformational day in the online community when we realized Twitter could be a support mechanism for dealing with loss in our community," Staley said. "Relationships formed in online communities are in fact very real."

Along with support and education, online groups such as #BCSM provide a sense of community freed from transportation difficulties and scheduling conflicts, as well as immediate connection 24-7.

And when in-person patient support groups have been postponed or canceled because of concerns about exposure to COVID-19, patients may increasingly turn to online support groups such as #BCSM.

Focus on the Positive

Staley and Attai continue to co-moderate the weekly #BCSM chats at 9:00 PM ET on Monday nights. These chats still focus on support and education for participants while remaining grounded in the research evidence.

"My role at this point is to shepherd the community and keep it going. Deanna provides that support as well," Staley said.

She acknowledges that #BCSM has changed her life. In 2011, she was working in information systems technology. Now, she works as senior director of patient engagement for Medidata, a life sciences company. She has traveled widely to speak on behalf of #BCSM. She has been to Japan and has seen places she "never in a million years" thought she would visit.

Although social media can have negative aspects, such as abuse and trolling, Staley emphasizes focusing on the positive. During the past 10 years, #BCSM has inspired Twitter spinoffs for a wide range of other cancers: #LCSM for lung cancer, #BTSM for brain tumor, #CRCSM for colorectal cancer (CRCSM), #GYNCSM for gynecologic cancers (GYNCSM)...the list goes on.

"Twitter and FB have gone through the ringer in the last 2 years. There's so much negativity about it," Staley said. "But when you seek out the positive and you look for connection, I think you'll be pleasantly surprised about the kind of fulfilling nature a virtual community can provide."

Do you have other examples of positive forces on social media? If so, please tell us about them in the comments.

Staley and Attai have disclosed no relevant financial relationships. Study coauthor Matthew Katz reports stock ownership in US Physical Therapy, Inc, Dr Reddy's Laboratories Ltd, Mazor Robotics Ltd, and Healthcare Services Group, Inc.

J Patient Cent Res Rev. Published online October 22, 2020. Abstract

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