Mayo Clinic Social Media Network
In this webinar, Dr. Dearani and Cynthia Burstein Waldman share their stories about using social media and discuss how they have found social media helpful from a physician and patient point-of-view.
View the webinar on July 26th here: https://socialmedia.mayoclinic.org/discussion/physicians-patients-rare-diseases-on-social-media/
This webinar is free for basic and premium members of the Mayo Clinic Social Media Network.
For more information, email email@example.com
Is there a way to “like” or “vote up” some of these comments?
Jump to this post
Hi, Jenn. Feel free to reply to the questions you’d like answered or to post the question again.
I do not use facebook . Can I just join the Mayo HCM group on facebook and nothing else?
You can join Mayo Clinic Connect’s Heart group where many HCM patients are sharing, including Cynthia https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/
How do you address misinformation and stop it from spreading and potentially affecting patient adherence to their medical regimens?
@jillc You have to have a FB account to do anything in FB but you could join and just do the one thing – if the group accepts you.
Thank you…Janet and Colleen
Here is Dr. Dearani’s Facebook page about Ebstien’s Anomoly https://www.facebook.com/ebsteinsmc/?fref=ts&ref=br_tf
This is Cynthia’s Mayo HCM closed group https://www.facebook.com/groups/MayoClinicHCM.Patients/
Facebook page is patient education led by Dr. Dearani, surgeon.
HCM group is a patient-to-patient support group, sharing information and experience.
My feed stalled out…not sure if others are having the same issue!
My feed is freezing, even though I’ve refreshed the screen a few times.
Oh – now it’s back.
I am having the same issue. My video just returned. But it stalled for a long time
The community leaders and first followers set the tone and culture of the community. Model the behavior you wish to maintain by the members and it is usually respected.
Do you have a job description for the patient mentors on Mayo Clinic Connect and/or admin/moderator of FB Group? Do they complete your regular volunteer training?
Here’s wonderful blog by Mayo Clinic employee using social media as an HCM patient. https://socialmedia.mayoclinic.org/discussion/health-care-superheroes-can-stop-patients-from-peeing-blue/
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