Who is saying what about Inflammatory Bowel Disease on Twitter?

Background: With about 330 million active users and its growing media attention globally, Twitter is a powerful tool for conveying information to the general population. There is limited data on the utilization of Twitter for disseminating medical information. This study evaluated messages on Twitter regarding Inflammatory Bowel Disease (IBD). Methods: Social Feed Manager (SFM; version 1.10.0; GW University, 2017), a software that mines social media platforms, was used to extract information regarding IBD-related tweets and their accounts over a 10-day period. We queried Twitter for terms related to IBD and categorized messages by geographic origin, type of user, and message content. Only tweets in English were included. Statistical analysis was conducted using a two-tailed Fisher’s Exact Test with a significance set at p\u3c 0.05. The study was approved by the university IRB. Results: Our study analyzed 629 consecutive IBD-related messages worldwide. The vast majority of tweets came from the USA (41.7%) and UK (35.7%), with fewer from Canada (9.9%), South America (8.5%), Asia (3.2%), and Australia (0.9%). These messages were posted by 578 distinct users, with patients (20.9%) and clinicians (21.1%) being the most common. General disease information was discussed by patients and support groups more than by clinicians, industry, foundations, and advocates (39.2% vs. 23.6%; p=0.0002), with symptoms being discussed by patients more than all other groups (23.1% vs. 8.0%; p=0.0001). Disease management was discussed by clinicians, industry, and foundations more than by patients, advocates and support groups (52.9% vs. 28.5%; p=0.0001). Direct recommendations were made more by clinicians and industry than other groups (5.6% vs. 0.8%; p=0.0018), with industry making more recommendations than clinicians (13.2% vs. 3.3%; p=0.0353). Conclusions: This study reveals that Twitter is utilized by a variety of people and provides diverse messaging about IBD. Patients and support groups tweeted more about general disease information, while clinicians, industry, and foundations tweeted more about disease management. Patients alone discussed symptoms in their messages. Clinicians and industry made more management recommendations than any other group, while industry made more direct recommendations than clinicians. It is critical that users are aware that Twitter messaging provides unfiltered medical information and that the validity of message content always should be considered