23 October 2020
A History of #BCSM and Insights for Patient-Centered Online Interaction has just been published!
The Twitter hashtag #BCSM (breast cancer social media) was first used in July 2011, by patient advocates Alicia Staley and Jody Schoger, when they started a weekly breast cancer-focused chat. The hashtag is currently used not only for the weekly chats, which focus on education and support, but also to tag any information related to breast cancer.
We evaluated the use of the #BCSM hashtag from 2011 – 2019, and the findings included:
- 7500 unique users tweeted using the #BCSM hashtag 830,000 times
- 440,000 tweets were unique (not retweets or quoted tweets)
- There were 4.2 million impressions, an indicator of potential reach or views
Looking at the annual statistics:
- There was an increase in unique users from 602 in 2011 to 19,800 in 2019
- Patient advocate accounts increased from 163 in 2011 to 1018 in 2016 (peak) to 794 in 2019
- Doctor / Healthcare provider accounts increased from 96 in 2011 to 3016 in 2019
Additional statistics are provided in the (open access) manuscript. In the paper, we also discuss some of the challenges to community sustainability, including patients desiring a more focused support community (such as exclusively for Stage 4 or lobular breast cancer, or groups focusing on a specific racial / ethnic group), increasing “noise” due to increased numbers of participants, and moderator burnout. These will be important to address going forward not only for #BCSM, but for other online patient support communities.
#BCSM was the first cancer-specific chat, and has inspired the formation of other communities including for lung cancer, brain tumors, and gynecologic cancers. The hashtag and the community that has developed around it serve as a way to connect patients with each other and with physicians and researchers. Despite the challenges going forward, we have demonstrated that social media can be used as an important source of education and support for anyone impacted by breast cancer.