Physicians investigate Reddit to better understand self management of inflammatory bowel disease

Reddit’s popularity as a tool for self-managing inflammatory bowel disease highlights opportunities for improvements in clinical care, according to a paper published in Journal of Medical Internet Research.

Inflammatory bowel disease is a category of conditions that includes Crohn’s disease and ulcerative colitis and affects over three million people in the United States.

Sufferers deal with this chronic condition in their day-to-day lives — not just when they’re in a doctor’s office.

That’s why gastroenterologists take an interest in self management, or their patients’ abilities to manage their own symptoms.

One window into self management habits is social media, where people with IBD might discuss their challenges with fellow sufferers, or seek tips for symptom management.

To better understand the role of social media in self management of IBD, researchers studied 659 posts on Reddit, from three IBD-specific “subreddit” sites: “r/IBD,” “r/UlcerativeColitis” and “r/CrohnsDisease.”

They preselected certain keywords based on prior research on self management principles.

The selected posts were then analyzed for those keywords before being sorted into five main categories.

“These findings support what we already know about self-management needs in IBD and, in particular, the importance of tracking symptoms, managing medications, and coping with stress,” said Shirley Cohen-Mekelburg, M.D., M.S., assistant professor of internal medicine at the University of Michigan Medical School and senior author on the article.

“What is quite interesting is that Reddit social media data allowed us to not only examine individual people’s needs and preferences but interactions between people, which is often missing from traditional data sources such as interviews or surveys.”

This analysis aligns with previous IBD-related research into other social media sites, such as Facebook.

The paper concludes that Reddit is a “multifunctional tool” for IBD sufferers that provides practical advice alongside empathy and community.

Researchers believe Reddit’s popularity for these purposes also reflects a gap in what’s provided to patients from clinical practices.

Social media as a self management tool has limitations, including an inability to guard patient privacy and the possibility of unreliable medical advice.

Physicians hope that the study of these social media will help them in developing self-management tools that address patient’s most pressing concerns with the reliability of data-driven interventions.

“There are no widely available evidence-based programs to comprehensively support patients with IBD in the day-to-day management of their disease,” Cohen-Mekelburg said.

“We hope that insights from this study will help us to develop targeted patient-centered interventions to better support patients with IBD.”

Additional authors: Tosin Adeyemi, M.D., Brian Gutermuth, M.D., Gal Hodish, M.P.H., Jeffrey Berinstein, MS.c., M.D., Kira Newman, M.D., Ph.D., Sarah Hawley, M.P.H., Ph.D., Minal Patel, M.P.H., Ph.D., Peter Higgins, M.S., M.D., Ph.D., Ken Resnicow, Ph.D., Sarah Krein, R.N., Ph.D.

Funding/disclosures: National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health under Award Number K23DK136928. TA is supported by 5T35HL007690. SK is supported by a Department of Veterans Affairs (VA) research career scientist award (RCS 11-222). KLN is supported by a career development award from the American College of Gastroenterology. 

Paper cited: “Reddit as a Social Media Self-Management Tool for Inflammatory Bowel Disease: Qualitative Analysis,” Journal of Medical Internet Research. DOI: 10.2196/75137

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