Turns out Twitter chats could be useful for people with certain conditions. An article published in the Journal of Medical Internet Research is arguing that participants in Twitter chats about breast cancer provided a “safe and welcoming forum for support and education.” Of the 206 respondents to the survey — 93 percent of whom were women — 63 percent said they “strongly agreed” with the “safe and welcoming” statement, while 24 percent “somewhat agreed.”
Significantly, more than a quarter of respondents became volunteers or advocates for patients with breast cancer as a result of the #BCSM (for “breast cancer social media”) tweet chats, which started in 2011.
Current tools for measuring patient experience have limitations because they require significant infrastructure and financial support for their use.“A novel finding of this study is the observation that many responders to our survey were motivated by #BCSM to participate in advocacy or volunteer efforts,” the researchers wrote. The geographically diverse research team came from quite a few places, including UCLA Health in Southern California, Gundersen Health System in La Crosse, Wis., and Allegheny Health Network in Pittsburgh, and included an independent advocate for women with cancer.
According to researchers, current tools for measuring patient experience such as Consumer Assessment of Healthcare Providers and Systems (CAHPS) have “limitations because they require significant infrastructure and financial support for their use.” In contrast, social media has the “ability to aid patient centeredness, report patient outcomes and provide breast specialists with patient perceptions of gap in care with limited financial and information technology investment.”
Among the survey pool, 69 percent had breast cancer themselves, while the remaining 31 percent were healthcare professionals, family, friends or advocates for the patients.