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 firstname.lastname@example.org
Sue, patients can share their experiences and connect with one another on Mayo Clinic Connect https://socialmedia.mayoclinic.org/discussion/physicians-patients-rare-diseases-on-social-media/
Mayo Clinic Connect is for Mayo patients and non patients alike. Here is the Heart group https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/ Cynthia is an active mentor in this group.
Begonya – individual patient information is not shared on the Facebook page. Dr. Dearani’s department shares patient education information to help prepare for appointments, choose a facility, etc.
Hi, @jillc. If you try refreshing your window, the stream should start again.
Connect is monitored by a community management team (community director and moderators). Patient mentors participate in the discussions. Mayo medical experts participate in a variety of ways: webinars, Q&As and blogs. When necessary expert opinion will be brought into the patient-to-patient discussions, such as here: https://connect.mayoclinic.org/discussion/my-37-yr-old-son-will-need-a-liver-im-64-could/
Hi, Jenn. Feel free to reply to the questions you’d like answered or to post the question again.
Hi, Nadia. Yes! Once Cynthia is done presenting, we will have a Q&A session.
Yes. Nadia. Q&A will start shortly. Please post your question here.
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/
Facebook page is patient education led by Dr. Dearani, surgeon.
HCM group is a patient-to-patient support group, sharing information and experience.
Cynthia has done an outstanding job at establishing and maintaining a supportive and welcoming group in the HCM Mayo Facebook group. The group is well-informed and the knowledge exchange is remarkable.
The Moderator and Mentor roles are on Mayo Clinic Connect (not facebook). Here’s the description of the roles, as well as why and how we moderate https://connect.mayoclinic.org/about-our-moderators-and-mentors/
The mentors are trained and receive ongoing coaching and support. They are also connected to one another through a private moderator and mentors group.
The short answer was: discussions about alternative therapies are happening off and online, better to have them in vetted, moderated communities where expert opinion and educated peers can correct misinformation than not to participate in them.
Research shows that active online support groups are “self policing” Esquivel A, Meric-Bernstam F, Bernstam EV. Accuracy and self correction of information received from an internet breast cancer list: content analysis. BMJ 2006 Apr 22;332(7547):939-942 http://www.bmj.com/cgi/pmidlookup?view=long&pmid=16513686
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