Community-Building: Better than Chemo

#sxsw #BuildBCSM

On Independence Day 2011, the first-ever #BCSM tweetchat for those affected by breast cancer took place. Less than two years later, the group had attracted thousands of participants, spawned a website and a YouTube channel and earned an extensive feature in USA Today. Not bad for a group of tech novices in a space hardly wanting for pink-ribboned advocates.
#BCSM isn't a prototypical breast cancer organization. It's not your usual support group. And it's not the kind of online community that makes headlines at Mashable.
Instead, the group has been, since its founding, focused on attracting a diverse and inclusive group who shared not only cancer, but a set of shared values -- particularly a commitment to evidence -- that created a sense of authority even as it built community.
Those are lessons that can and should be adopted by those looking to connect with similarly isolated communities, and the founders of #BCSM look forward to sharing what they have learned.

Presenters

Alicia Staley

CEO

The Staley Foundation

Alicia is a three-time cancer survivor committed to making a difference in the health care community. She started the Staley Foundation, a non-profit organization based in Boston, MA, in October 2007. The Foundation serves as a way to provide education, advocacy, and assistance for those affected by cancer as patients, caregivers, family, or friends. She shares her passion and enthusiasm for helping the cancer community by contributing to Awesome Cancer Survivor and the BCSM community.

With an engineering background and MBA/MS degrees in information systems, Alicia applies her technical knowledge in creative ways to bring different healthcare communities together to leverage knowledge, solutions, and support in efficient, effective ways. In May 2013, Alicia was appointed to the ONC’s Health Information Technology Policy Committee (HITPC) for a three year term.

Deanna Attai

Breast Surgeon

Center For Breast Care

Dr. Deanna Attai is a breast surgeon practicing in Southern California, and co-moderates the #BCSM chats with Jody Schoger and Alicia Staley. She currently serves on the Board of Directors and the Executive Committee of the American Society of Breast Surgeons. In addition to her surgical practice, she has an interest in social media, specifically how physicians can educate and empower patients and through online interactions.

Jody Schoger

Writer & Blogger

Jody Schoger is a writer, blogger and epatient advocate currently living with metastatic breast cancer. She co-founded #BCSM, breast cancer social media, a weekly tweet chat for those affected by breast cancer, in 2011. #BCSM has been featured in USA Today and Forbes. Schoger's work has been featured in Oncology Times as well as Cure Magazine. Schoger is a graduate of NBCC's Project Lead, an Alamo Breast Cancer Foundation Scholar, and a two-time patient scholar at Stanford's MedX. She is passionate about breast cancer and epatient adovacy from preventation through targeted treatments for metastatic disease.

Xeni Jardin

Co-Editor & Founding Partner

boingboing.net

Journalist, adventurer. Founding partner & co-editor of award winning blog BoingBoing.net. Host of Webby-honored "Boing Boing Video," online and in-flight on Virgin America. Contributor, present or past, to NPR, Wired, NYT, LAT, Guardian, CNN, MSNBC, and others. Founding board member, Freedom of the Press Foundation. Diagnosed with breast cancer in 2011. Status: Alive.