Webinars

Physicians, Patients & Rare Diseases on Social Media

Physicians, Patients & Rare Diseases on Social Media

Tue, Jul 26, 2016
2:30pm to 3:30pm CT

Description

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.

Location

In Person

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.

Questions? Contact:

For more information, email socialmediacenter@mayo.edu

Posted by @colleenyoung, Jul 26, 2016

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/

Posted by @colleenyoung, Jul 26, 2016

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.

Posted by @colleenyoung, Jul 26, 2016

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.

Posted by @Margaret_Marie, Jul 26, 2016

Hi, @jillc. If you try refreshing your window, the stream should start again.

Posted by @colleenyoung, Jul 26, 2016

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/

Posted by @Margaret_Marie, Jul 26, 2016

Hi, Jenn. Feel free to reply to the questions you’d like answered or to post the question again.

Posted by @Margaret_Marie, Jul 26, 2016

Hi, Nadia. Yes! Once Cynthia is done presenting, we will have a Q&A session.

Posted by @colleenyoung, Jul 26, 2016

Yes. Nadia. Q&A will start shortly. Please post your question here.

Posted by @colleenyoung, Jul 26, 2016

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/

Posted by @colleenyoung, Jul 26, 2016

Facebook page is patient education led by Dr. Dearani, surgeon.
HCM group is a patient-to-patient support group, sharing information and experience.

Posted by @colleenyoung, Jul 26, 2016

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.

Posted by @colleenyoung, Jul 26, 2016

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/

Posted by @colleenyoung, Jul 26, 2016

The mentors are trained and receive ongoing coaching and support. They are also connected to one another through a private moderator and mentors group.

Posted by @colleenyoung, Jul 26, 2016

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.

Posted by @colleenyoung, Jul 26, 2016

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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