Patients’ online research may leave them wondering if they have a particular disease. Listen to their concerns, normalize their fears, and provide reputable resources. And remember, sometimes they’re right.
In the age of the internet, it’s a common occurrence for a patient to ask, “I’m wondering if this be (insert obscure disease.)” How do you respond? The phenomenon of searching symptoms has grown so common that the most popular search engine has earned the name, “Dr. Google.” A 2019 survey showed 89% of U.S. patients search their symptoms online before seeing a physician in an attempt to find out the severity of their condition. In the online world of self-diagnosis, everything from a headache to a cough could be cancer. Another 2019 survey found 74% of those who looked up symptoms felt more stressed afterwards and 40% of searches led to a misdiagnosis.
Given the high potential for increased stress and inaccuracy, patients must have strong motivations to keep returning online to search for answers. Internet information, in all its flaws, is free and immediately available 24/7. The U.S. healthcare system, in comparison, can be expensive and inaccessible, especially for marginalized communities. There’s still so much that medicine doesn’t have answers for and patients may use online research to fill in the gaps. Medicine has committed significant harm against marginalized communities leading to medical mistrust and a desire to find one’s own knowledge. Finally, as a physician, I can only imagine how unnerving it must be to experience a minor physical symptom, like a rash or a lymph node, and not immediately be able to reassure myself that nothing serious is wrong. Online research gives patients a feeling of control over their health in the face of that uncertainty.
Revisiting the opening question, “Could this be (insert obscure disease)?” here are some tips for responding:
1. Ask for more information and listen closely.
“That’s an interesting suggestion. Can you tell me where you learned about it and why you’re concerned you may have it?”
2. Normalize uncertainty and a desire for answers. “
Thank you so much for telling me. Many patients feel anxious when they don’t know what’s going on with them. It’s understandable that people look online for answers.”
3. Explain why or why not the mentioned condition is on your differential.
Describe your thinking and plan for work-up. “I see why you thought of this condition, but here’s how your current symptoms differ.” Or, “I’m not yet able to rule out that condition, but I’ll order these tests so we have more information.”
4. Offer reputable online websites and yourself as a future resource.
“That’s great that you want to find more information. Can I share with you some of my favorite websites? I like them because they are written or reviewed by healthcare professionals and give accurate information. Also, if you ever have questions or concerns about something you read, you can always reach out to me to talk.”
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.