Alice Goes to Jacksonville: Mayo Clinic Center for Social Media | Rheumatoid Arthritis Warrior

Alice Goes to Jacksonville: Mayo Clinic Center for Social Media

What’s the Mayo Clinic Social Media Health Network?

Kelly TweetingI joked a lot about Alice in Wonderland this week as Katie Beth and I traveled to Jacksonville for the first meeting of the Advisory Board for the Mayo Clinic Center for Social Media (MCCSM). It was combined with a conference for members of Mayo Clinic’s new Social Media Health Network (SMHN). The SMHN provides instruction for the use of social media in the healthcare industry.

They lead their member organizations in the practical use of social media in medicine while upholding the philosophy of the Hippocratic Oath. The mission of the Mayo Clinic Center for Social Media from their about page: “Lead the social media revolution in health care, contributing to health and well being for people everywhere.” Visit that link to learn more.

This week’s conference included presentations and discussions, but it was nothing like attending ACR! SMHN attendees used laptops and smartphones to Tweet quotes and photos of the presentation in real time. Health Is Social created a transcript of the Tweets from the first two days of the SMHN conference that lets you share the experience.

You’ll be hearing more about MCCSM in the future and I’ll be sure to post some links to articles I write for their site.

What’s the Mayo Clinic Center for Social Media Advisory Board

Kelly speaking MCCSMThis is a board that Mayo Clinic has put in place to offer support and advice to the SMHN through writing articles and speaking at meetings like these. If you use Twitter, you can follow the daily discussions using the hashtag #MCCSM.

I had the opportunity to speak to the about the RA Warrior community and my philosophy of using social media, especially Facebook. Most you know well the atmosphere of respect and generosity shown by RA Warrior members in comments, Facebook, and Twitter as we focus on providing accurate information in an encouraging and non-threatening way.

Now for the fun part! More pictures!

The most exciting thing about the trip was seeing what Meredith Gould refers to as “avatars come to life” as we got to know people that we had read about or chatted with online.

Tour of Mayo Clinic JacksonvilleKatieBeth TweetsKatieBeth, Kelly & Meredith Lee Aase
Patchouli in hallway at Mayo Day 3 group  photo MCCSMBoard member Bob West Tweeting


Recommended reading:

Kelly O'Neill

Kelly O'Neill (formerly Kelly Young) has worked about 12 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over fourteen years with unrelenting RD. See also https:/

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11 thoughts on “Alice Goes to Jacksonville: Mayo Clinic Center for Social Media

  • March 17, 2011 at 7:50 pm

    Thanks for sharing! We live vicariously through your great experiences! We’ll look forward to hearing more–this “adventure” is energizing you even more than you usually are–you look so happy, and you’re a perfect spokesperson for all of us!

  • March 17, 2011 at 10:51 pm

    That would have been a really neat experience! I really need to learn Twitter better, I guess. Thanks for sharing what you have learned with us. That should make for some pretty interesting reading! 🙂

    • March 17, 2011 at 11:41 pm

      Danielle, it was only the first meeting – much more to come. I think it will be great! 🙂 & Twitter is amazing.

  • March 18, 2011 at 4:46 am

    You look very professional! Can’t wait to hear about the whole experience.

    • March 18, 2011 at 9:58 am

      You are so sweet! I have one pic where you can see the pillow on my lap – I kept my shoes off & feet up most of the time even when on the front row. I don’t think anyone was bothered by it – it was like “reality check: patient & human being first; writer & advocate second!”

  • March 18, 2011 at 8:33 pm

    It was great to meet you at the conference. Your presentation on Wednesday morning was great. I look forward to running into you at more SMHN events.


  • July 30, 2011 at 4:13 pm

    GOOOOO Kelly! You are awesome!

    • July 30, 2011 at 5:09 pm

      Thanks, Aimee. A lot of help made it possible which was obvious, but I think I’ll read this again since it makes me so happy to remember our first Mayo meeting w/ the social media advisory board.

  • September 5, 2013 at 12:43 pm

    In order to get an appointment at the Mayo the second time they needed 3 months, even if l had seen a RA doctor previously. I of course needed help much sooner. I was very disappointed.

  • October 23, 2013 at 8:02 am

    In the past, I traveled frequently for work. I purchased 2 of many things & left them in my suitcase so it was already about half packed. Included in my necessities was a heating pad, an extension cord. I began including a flashlight after being in a power outage. I was usually alone so each night, I laid out some sweats & shoes. I made sure my purse had a room key in it & was easy to locate. I began that routine after a late night fire alarm.


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