Tag: Long QT

Patient Voice in Health Care

Today I’m participating in an event for patients, family members and health care professionals at Mayo Clinic in Rochester. It’s called “The Voice of the Patient in Harmony with Care: Safety Through Patient and Provider Partnerships.” My presentation, which I’m giving at 9:30 a.m. and 12:45 p.m., is entitled, “The Internet and Partnership Communication Opportunities of the Future.”

I’m embedding the slides from my presentation here, and including some key links below. I would appreciate any comments, questions or other feedback from the participants, and of course if any want to become SMUGgles, you’re completely welcome.


Here is our Mayo Clinic Podcasts blog, including the posts on POTS and Niemann-Pick Disease Type C.
Here is our Mayo Clinic page in Facebook, and the Organ Transplant group, as well as the Mayo Clinic-sponsored CarePages service.

Here is our Mayo Clinic YouTube channel, as well as one of the patient story videos from Rhonda King.

[youtube=http://www.youtube.com/watch?v=AFYiaMuZY4g]

This is the link, I believe, to the Long QT group on Yahoo that she mentioned.

Those who want to learn more about social media can enroll in SMUG, or just start with the Core Courses or the Facebook curriculum.

Please feel free to engage here in the comments, and discuss how these powerful tools could help meet important communication needs in the patient/provider relationship.

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YouTube Deep-Linking Example

In yesterday’s highlights I called attention to a new feature from YouTube that allows deep-linking to a specific point within a video.

I decided to try it, because I wanted to show some key parts of a couple of videos during a presentation for which I had a limited time. The total time for the two videos is about eight minutes. I encourage you to watch the entire videos, but by deep linking to four separate spots I could show some highlights within the presentation.

This video is from an interview I did with Rhonda King, in which she explains how she used an online support group to gather information about her son Trevor’s condition. She later explained the decision she and her husband made to seek a second opinion for Trevor, and what happened when she sent an email to Michael Ackerman, M.D., Ph.D., a Mayo Clinic cardiologist who specializes in diagnosing and treating Long QT syndrome and other heart rhythm abnormalities. She also describes her experience in getting Trevor examined by specialists at Mayo for his other medical conditions.