How to recognize and avoid misinformation about IBD
Published: September 29, 2021
When you were diagnosed with inflammatory bowel disease (IBD), you probably went on the internet to research your disease. Within seconds, you had a vast web of information about symptoms, treatments, and other resources at your fingertips.
According to the Pew Internet Project, over 50% of Americans living with a chronic illness have gone online for health-related information. This ease of access comes with several benefits: you can easily connect yourself to helpful information, healthcare professionals, and fellow patients with Crohn’s disease or ulcerative colitis.
However, not all search engine results are created equal. Lurking among trusted studies, reports from accredited institutions, and properly cited news articles are links to misinformation. Whether it be a blog, website, or a social media account, there are several places where false information about IBD is provided to patients under the guise of earnest advice. And when you come across something that seems suspicious, we urge you to exercise caution with what information you trust.
It is not always easy to determine whether what you’re looking at is quality information, but here are some red flags to look out for, especially on social media, from a recent article published in Inflammatory Bowel Diseases:
- Echo chambers. Do all the commenters agree with and support the original post? You may have found an echo chamber - a setting where people only encounter beliefs that align with their own and do not consider opposing ideas. Echo chambers reinforce pre-existing beliefs without testing them against others and can lead to the spread of misinformation.
- So how can you avoid echo chambers? Do not seek out information solely to confirm a personal hunch. This makes you more likely to interpret the information you find as evidence that supports your original thought, instead of objectively scrutinizing the claim. Acting on confirmation bias, or the tendency to search for information that favors your original hunch, may land you in an echo chamber that reinforces false information.
- Promised cures. Unfortunately, there are no cures for IBD. If an online source promises a cure for Crohn’s disease or ulcerative colitis, it is spreading false information.
- How can you avoid promised cures? Pay careful attention to the language used promoting any treatment for IBD and remember that any treatment described as a “cure” does not exist. Some questions to consider: is the treatment clinically proven to work, or is there only anecdotal evidence to support its efficacy? What were the clinical trial results? Is a medical professional recommending this treatment? Answering these questions before reading further can help you avoid consuming misinformation, but regardless of the answers to these questions, do not adjust your treatment regimen without speaking with your doctor first.
- Lack of credentials. Is this information coming from a trusted medical professional or healthcare institution? If not, that is an automatic cause for questioning the validity of the claims presented.
- How can you avoid misinformation from non-medical professionals? While a claim is not automatically made true if it is stated by a doctor, medical credentials are a great place to start when protecting yourself from false information. This does not mean that everything you consume online about IBD needs to come from a healthcare provider – in fact, patients and caregivers sharing their stories with one another has several benefits. However, it is important to remember that people who are not healthcare professionals are not qualified to provide medical advice.
While plenty of claims on social media are outright false, IBD patients may also encounter more complicated instances of fact and fiction mixed. For example, complementary medicine is often discussed among patients on social media; however, it is important to remember that complementary medicine does not have the same evidence-based principles as conventional therapies for IBD and should not be used on its own to treat Crohn’s or colitis.
It can be difficult to separate evidence-based guidance from misinformation. That is why it is critical to speak with your healthcare provider before heeding advice found online. We recommend you sharing any articles of interest that you find with your doctor and asking their opinion about the information in them. In addition, our IBD Help Center is available to answer any questions you may have about Crohn’s disease or ulcerative colitis. You can access our IBD Help Center by emailing [email protected], or calling 1-888-MY-GUT-PAIN (888-694-8872, extension 8).
Michelle Lampariello is the social media and content manager for the Crohn's & Colitis Foundation.