Getting a diagnosis can feel lonely. Being able to find connection and information online from people who share your experience can be life changing.
We asked a Mayo Clinic expert what he thinks about online patient communities. Spoiler: He's all for them.
A Mayo Clinic expert explains why patients who engage in online communities do better
Farris Timimi, M.D., Cardiovascular Medicine: I was born and raised in rural Tennessee in a very small town. And in that era a child born with a congenital defect, their parents had no resource. How to find the correct car seat, what kind of diet to follow, what kind of therapy does my child need? Because they were the only person in that community suffering with that disease.
In the current era, the power for a patient to find someone else who faces the same challenges they face, to find connection, to find resources, to find education, to find peer to peer engagement. It's just breathtaking.
Social media creates community. I think an informed patient can express their understanding of their disease and direct the conversation in a fashion that advocates for themselves. The correct treatment, the correct diagnostic test. I cannot say this enough: An informed patient does better.
In my own clinical practice the most striking impact has been that if a patient comes to me having experienced their disease entity and done research online, found communities to help direct them, then instead of starting the conversation here, we begin at a much deeper level of engagement.
Mayo Clinic Connect is an online community with disease-specific communities within it, that are all moderated by volunteers. So any particular disease you face or challenge you have, there is a community within Mayo Clinic Connect with moderators that can help guide your question.
So I care for patients with a large number of unusual diagnoses. For example, amyloid cardiomyopathy. We have a Mayo Clinic Connect community that's just dedicated to that diagnosis. That's powerful.
The biggest value is just peer to peer connection. Knowing that you are not alone in facing that disease. Someone else has faced the same challenges you face and navigated through them. And you know what, you can do it too.
Dr. Timimi has helped thousands of patients find connection through online communities.
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