Optimizing Hashtags to Organize Health Information on Twitter

While social media can be an information overload, applying a scientific method to organize the evidence can be a big boost to disseminating healthcare information. New research, published in JAMA Oncology, presents evidence of how the use of disease-specific hashtags on Twitter, by patients, caregivers, and healthcare professionals, can help those with common interests collectively share information.

The authors based their experiment on 2 pioneer hashtags in the field of cancer, #bcsm (breast cancer social media) and #btsm (brain tumors social media), to develop 23 novel cancer-specific tags that were disease specific, short, unique or not common on Twitter, and ending in “sm.” Called the cancer tag ontology (CTO), the list was initially proposed in July 2013 and can be found here. It was posted on Symplur in November 2013, following public engagement and commentary, to gather data on hashtag use every quarter (between April 2011 and June 2015). Top 100 users were classified as patients, caregivers/advocates, physicians, non-physician providers, individuals, hospitals, and other healthcare organizations.

The authors identified #bcsm (323,720) and #lcsm (143,089, lung cancer) as the most commonly used hashtags among the 762,103 tweets sent out by 117,064 users. Organized live chats were marked for #ayacsm, #gyncsm, #lcsm, #mmsm, and #pancsm after mid-2013. Top hashtag users, the authors discovered, were patients (34%), caregivers/advocates (17%), physicians (14%), and hospitals (14%). A big jump in hashtag use for all 25 CTOs was seen between the third quarter of 2011 (13,778) and the second quarter of 2015 (87,319).

Of the well-reputed organizations, Dana-Farber Cancer Institute, MD Anderson Cancer Center, the National Cancer Institute, and the American Society of Clinical Oncology were the most active users of these hashtags.

The authors write that the CTO is a practical way to facilitate patient, clinician, and institutional access to health information and engagement, and it may improve patient knowledge and reduce their anxiety as well. They conclude that while organized cancer information is feasible, additional studies could be conducted to evaluate impact on health literacy and patient outcomes.