Update: The research has now been published in JAMA Oncology
Katz MS, Utengen A, Anderson PF, et al. Disease-Specific Hashtags for Online Communication About Cancer Care. JAMA Oncol. Published online November 05, 2015. doi:10.1001/jamaoncol.2015.3960.
People deserve access to safe, reliable health information online. Doctors have an ethical obligation to help make the internet easier and safer. Will health hashtags help or not?
Analyzing 531,765 tweets from over 70,000 users through December 2014, we found that CTO use is increasing. 93% still come from tags with active chats. We didn’t do any formal statistical analysis, but it’s interesting to see how each tag has different stakeholders using them. The full poster is viewable and downloadable on Slideshare.
At the meeting, ASCO attendees from all backgrounds expressed interest and came to the poster: patients, advocacy organizations, doctors, industry. Beyond the scope of the study, I learned more from discussion with Symplur: as of early May, 62% of NCCN-designated cancer centers have used CTO tags at least 25 times. The five biggest users: Dana-Farber Cancer Institute, MD Anderson Cancer Center, Lurie Comprehensive Cancer Center, Memorial Sloan-Kettering Cancer Center, and UCSF Medical Center.
Despite the great response, we need more research on whether hashtags help. Originally, I focused on creating meaning and community-building by patients and advocates. Collaboration with doctors like Deanna Attai has worked great for #bcsm, but #pancsm was started by doctors. It has been active and useful, just different. What will work best?
When doctors and hospitals use disease-specific tags to share reliable health information online, patients can ‘tune in’ to an interactive radio station. You can listen, get information, or find others people with the same problem for support. The internet doesn’t have to be the ‘Wild West’ if we adopt standards that people value. That will require people, not organizations, using to provide some community immunity, defining what works and doesn’t. And more use will create new challenges.
In this study, we show that cancer hashtags can organize conversations on Twitter. Thousands of patients, doctors, nurses and institutions have found it worth using. We need more research to know if this system really helps patients, caregivers, and providers.
If this system works for cancer, something similar may help organize health online for other diseases. I have my own opinions. But more important than opinions are better data.
What do you think will work?