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#BCSM: Breast Cancer Social Media

Author: Diana Price

With more than 30 years’ experience as a communications and public relations professional, Jody Schoger recognized early what a powerful communication tool social media, and specifically Twitter, could be.

In 2008 Jody, a breast cancer survivor, launched a personal blog related to her survivorship and also began using Twitter. As she began following individuals and groups discussing health-care topics, Jody was intrigued and impressed by the breadth and the depth of information available, and she became aware of the opportunity for connection that social media could provide cancer survivors. “What was amazing to me is how quickly you could get to know people in various areas of cancer,” Jody says. “From nonprofit organizations to people who are writing about health care to doctors who are writing about it—it was just a phenomenal thing to me.”

It was through Twitter that Jody connected with Alicia Staley, a three-time cancer survivor and advocate who was similarly interested in the way social media could benefit the breast cancer community. Jody and Alicia began discussing how breast cancer, specifically, was featured on Twitter, and they noted the lack of conversation among survivors. Both women felt that the format provided a valuable opportunity to reach patients with critical information and support at pivotal points along their journeys. After many discussions about the way a dynamic conversation could help patients, Jody and Alicia decided to take the leap themselves and create a regular Twitter chat focused on breast cancer topics.

The pair launched their first #BCSM (Breast Cancer Social Media) chat on July 4, 2011, hoping that the holiday would mean a smaller crowd for their first attempt. “We thought, Well, a lot of people will be on vacation,” Jody says, “but we got 90 people for that first chat!” So much for a soft launch—#BCSM was off and running. Soon after the initial chat, breast surgeon Deanna Attai, MD, began attending regularly and expressed interest in joining Jody and Alicia in their effort. Dr. Attai’s participation as a moderator provided welcome clinical expertise. “Having a physician as part of the community adds a quality of expertise that elevates the chat to another level,” Jody says. “Support is a very essential component, but so is accurate information.”

In the two years since that initial chat, Jody, Alicia and Dr. Attai have each week welcomed breast cancer survivors (ranging from those newly diagnosed to long-term survivors), experts and advocates to discuss a broad range of topics. Discussions have covered everything from current research to emotional issues and coping strategies. Whatever the topic, Jody says, the mission is clear: to remain focused on the participants’ needs and on providing valuable evidence-based information.

Despite the large number of breast cancer organizations and online communities providing resources to survivors, Jody says that the #BCSM chats provide a unique vehicle for connection and education. One of the major benefits, she says, is “the basic simplicity” of the Twitter chat format. “You don’t have to sign up for a password or share personal info,” Jody says. “We’re not trying to sell you anything. We’re not trying to get you to support an organization. We’re not making money from your participation.”

In addition, the authenticity and the transparency that are hallmarks of the chats create a quick bond between moderators and participants and develop trust among community members. “Our voices are now known to them; they like our voices,” Jody says. “And we all contribute different things: I write about symposia I attend. Alicia shares things she’s involved with. Dr. Attai shares her expertise. Our voices provide a range of experience.”

As the #BCSM community continues to evolve, participants have expressed their desire for more opportunities to connect with one another and the moderators. To that end the group launched a website (bcsmcommunity.org), is planning an online radio show and is considering planning an event to enable community members to meet one another in person. “We have people from all over the U.S. and from around the world,” Jody says. “They all want to get together—they want more.” Though Jody, Alicia and Dr. Attai all work day jobs in addition to the time they contribute to #BCSM, they want to continue to expand to meet the community’s needs. “We want to provide more, and we’re working with these growth issues to ensure that the organic, authentic part of the community remains consistent,” Jody says.

As Jody reflects on the growth of #BCSM and the benefit the group has provided, she is grateful for the opportunity to meet a clear need among survivors. “This experience has just been electric for me; it’s just wonderful to hear two or three months down the road how a discussion impacted someone’s life,” she says. “I never in my wildest dreams would have seen this kind of thing happening; the fact that it happened on its own accord by my being in this place at this time tells me that this is exactly what I’m meant to be doing; it’s what people need and how I can help people in this forum.”

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