Virtual Community, Real Support for Breast Cancer
Member News
19 Jun 2014 1:50 PM
Deanna J. Attai, MD, on the rewards of co-moderating a popular chat group on Twitter
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#bcsm is not a typical cancer support group. It has no physical office, no dedicated funding, and no full-time staff. However, it does have regular meetings; every Monday at 9:00 PM EST, hundreds of people affected by breast cancer share their stories, ask questions, and discuss the disease with experts, and it all happens on Twitter. #bcsm stands for "breast cancer social media," and from this pithy hashtag has grown an enormous online community devoted to evidence-based medicine, open discourse, and compassionate support for everyone touched by breast cancer.
ASCO member and breast surgeon Deanna J. Attai, MD, of the Center for Breast Care, Inc., in Burbank, CA, and President-Elect of the American Society of Breast Surgeons, serves as co-moderator of the weekly #bcsm chats, with writer/cancer advocate Jody Schoger and cancer survivor Alicia Staley. Together, the three volunteers plan discussion topics, recruit expert guest tweeters, and keep chats on track. Their innovative approach to cancer advocacy and community-building earned them a coveted presentation slot at the tech conference South by Southwest in March 2014.
#BCSM ChatJun 9
Thank you @jrgralow for a great update on breast cancer research from #ASCO14 #bcsmwww.bcsmcommunity.org/ breast-cancer-updates-from asco-by-dr-julie-gralow/…
Jun 5
(Reasonable) Fear Prompts "Extra" Mastectomy Decision - An Opinion by@DrAttai and @MikeCowherwww.bcsmcommunity.org/reasonable-fear-prompts-extra... #bcsm
May 19
Tonight's #BCSM chat - Improving Quality and Outcomes Through Collaborationwww.bcsmcommunity.org/improving-quality-and-outcomes-through-collaboration/... cc @DrAttai @stales@jodyms
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Sexual Wellness after Cancer Therapywww.bcsmcommunity.org/sexual-wellness-after-cancer-therapy/...#BCSM
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Check out the growing list of #BCSMresource links.bcsmcommunity.org/resources/
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AC: How did you get started with Twitter?
Dr. Attai: When I first joined Twitter in 2010, I wasn't really sure where I belonged, but I saw right away that women were talking on Twitter about things that they should be discussing with their doctors, and clearly they weren't getting the information they needed. So I found myself doing online what physicians do every day, offering advice to people who aren't our own patients but want our guidance— friends, neighbors, people you run into in the grocery store—suggesting questions the person should be asking their doctor, or reinforcing the need for a second opinion. I also disseminate information about new studies and dispel myths, especially when there's a blockbuster headline about a new drug in the news but the reality for patients is very different.
I'm always very aware that I'm on Twitter representing not just myself, but also the leadership roles that I hold, so I keep it professional. I might occasionally tweet a picture of my garden or talk about sports—topics I would discuss casually with a patient are fair game, but I don't share private things that I would talk to my friends about. It's good to draw some boundaries.
AC: What was your first experience with the #bcsm community?
Dr. Attai: I missed the first chat. Jody and Alicia won't let me forget it, although they purposefully launched it with very little fanfare. The first chat was on July 4, 2011, which was the Monday of a holiday weekend, and I try not to spend too much time online during weekends. On Tuesday, a few people I knew on Twitter asked why I wasn't on the #bcsm chat, and it was because I didn't know about it! I started participating in the chats the following week.
Initially the chats were focused almost exclusively on survivorship issues. I learned so much from listening to these women talk. As the chats branched out to include information from medical meetings and focused on specific medical aspects of breast cancer, I played a larger role in the discussions. In October 2011, I was asked to come on as a co-moderator.
AC: Aside from its home on Twitter, what distinguishes #bcsm from other breast-cancer support groups?
Dr. Attai: There are a lot of breast surgeons, medical oncologists, radiation oncologists, and psychologists who have made themselves available to the group, even when the chats aren't taking place. They're an incredible resource for patients. Jody and Alicia were very passionate from the start that this space would not perpetuate myths or bad science, and we focus on making sure that any medical information we discuss is evidence based and accurate. It's not okay for someone in the chat to make snake-oil claims about breast cancer treatment. This is why we've been so successful in getting other doctors involved in the chats—they see we're having constructive discussions and that patients are clamoring for legitimate medical guidance.
AC: What did it mean for #bcsm to be featured at such a high-profile event as South by Southwest, which highlights the latest innovations and most creative ideas in technology?
Dr. Attai: It was incredible. We never expected this kind of attention. Our goal is to help educate and empower the breast cancer community, which is a huge community, so it was an amazing opportunity to get our message out.
Jody, Alicia, and I gave the presentation, with [journalist and activist] Xeni Jardin as the moderator. We talked about how #bcsm started, what we're doing now, and how we're a different type of community that can engage, support, and be medically accurate all at the same time. It was very well received, and we got great questions and great feedback.
AC: What's next for #bcsm?
Dr. Attai: We're only reaching a small number of patients on Twitter. Branching out to a website (bcsmcommunity.org) has helped widen our audience, and we have some ideas for taking it even further. For example, we'd like to help create opportunities for patients and patient advocates to attend medical meetings, like the American Society of Breast Surgeons Annual Meeting and the Breast Cancer Symposium.
The organization is just the three of us, working on our own time. #bcsm evolved very organically from the beginning, really from the ground up, so now we're starting to sit down and plan what's next. It can be hard to find the time and resources to make it work, but we're extremely committed to this community and we're moving forward.
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