1 July 2019
July 4th 2019 marks 8 years for the #bcsm (breast cancer social media) community on Twitter. #bcsm was started by two breast cancer patient advocates, Alicia Staley and Jody Schoger. They initially met on Twitter while participating in weekly tweet chats that focused on healthcare and social media (#hcsm). Sensing a need in the breast cancer patient community for a forum to discuss their unique issues and concerns, they held the first #bcsm chat on 7/4/11, and the rest is history.
#bcsm is the first and longest-running cancer support community on Twitter. Alicia and Jody were very clear from the start that they wanted the chats to be open to all and to cover both survivorship topics as well as the latest science. That mission continues today.
I actually missed the first chat (it was a holiday!) but joined in on the 2nd one and was asked to participate as co-moderator a few months later. I have been honored with a front-row seat to the patient experience all these years. Women and men participating in the chats share their experiences in a way that is different from what oncologists usually see in the exam room – the conversations are often less guarded and more raw. These women and men have made me a better physician.
Jody died due to metastatic breast cancer in 2016 at the age of 61. The weekly chats continue, and serve as a living testament to the vision of two women who prior to 7/4/11 had never met in person. There are now several other cancer-specific patient communities on Twitter, including for gynecologic and lung cancers and for brain tumors. Alicia and Jody were brought together in the online space by shared interests, experiences and passion – what has resulted from their initial discussions is nothing sort of amazing.