Inflammatory Bowel Disease Patient Leaders' Responsibility for Disseminating Health Information Online

Medical professionals have long been concerned about the lack of accurate information in some online spaces. People with inflammatory bowel disease (IBD) have a great need for health information, and with the rise of social media platforms, patients are going online to share and receive health information from other patients. This study aimed to uncover how patient leaders of online IBD communities share health information, and how they conceive their responsibility to provide accurate information. To answer these questions, a digital ethnography of 14 online IBD communities was conducted. Analysis showed that online community leaders take their responsibility for providing accurate health information seriously and often supplement the information they provide with caveats, disclaimers, and appeals to their audience to consult with their doctors. Audience members appreciate this information and often consider patient communities to be credible sources of information. Community leaders expressed that they desired not to usurp medical professionals' authority but rather to supplement the health information professionals provide with patient stories. These findings may help bridge the gulf that often exists between patients and medical professionals regarding who has authority over health information in online environments.