Prior research has shown that many IBD patients have an incomplete understanding of biologic risk-benefit profiles and carry misconceptions about treatment. For example, patients tend to overestimate the benefits and underestimate the risks of infliximab.²² In another study, more than three-quarters of participants did not know anything about the safety of biologics.²³ While these studies provide valuable insights, their survey-based methodology and small sample sizes raise concerns as to whether these findings are generalizable to the larger IBD population.

To address this gap in knowledge, social netnography was used in a recent study to examine the perceptions, attitudes, knowledge, and beliefs of individuals with IBD on the Internet.²⁴ Specifically, social media data was collected to examine IBD patients’ understanding of the risks and benefits associated with biologic therapies and how this affects treatment decision-making.

Although qualitative in nature, social netnography offers broad insights into patient perceptions about their disease and treatment. When performed in IBD, the results generate insights about how IBD patients and their caregivers navigate the risks and benefits of biologics, and inform a conceptual framework around therapeutic decision-making.