A Novel Approach Using Social Media to Investigate Patient-Centric Data in Autoimmune Hepatitis

Abstract

Autoimmune hepatitis (AIH) is a rare liver disease characterized by immune-mediated destruction of hepatocytes. Despite adequate treatment, most patients experience severe extrahepatic symptoms that may reduce quality of life to date. The extent and impact of these symptoms remain poorly characterized as focused investigation in this realm has been deficient. In rare diseases, such as AIH, online support groups may provide the only environment where a sufficiently sized sample of patients can be examined for such issues. We aimed to electronically survey the text content of an AIH-affiliated online support group with over 1,000 users making over 18,000 communications. HYPOTHESIS: We hypothesized that we could use AIH-online support group text to identify key topics of clinically-related discussion and classify demographics and correlate these features to clinical topics, medications, and symptoms.