Energizing E-patient Engagement – Collaborations that Count

This blog is not about me because it’s always been much more than a way to share my own journey. This blog tells OUR story – the true story of Rheumatoid disease, the people who live with it, the fight to cure it, and the process that patients have entered to participate in improving our own lives by improving care. Here’s one small chapter from last week. That’s right – I’m behind. That’s a common part of our journey with this disease.
Kelly Young & Cherise Shockley
Susan at WEGO Health called last week to invite me to attend the annual meeting of the American Academy of Nurse Practitioners. You know I’m not a nurse practitioner of course, so why attend? WEGO is working to increase the presence of health activists at medical meetings. Sound familiar?

Susan said the nurse practitioners wanted to hear from e-patient leaders about the work we’re doing with patients. Packing, resting, and catching up from the norovirus, I could only spare one day. So, Friday morning Katie Beth and I drove over to the Orlando Convention Center to attend the AANP conference.

It was a tough long day, but a blessing. Here are some high points.

We spent a lot of time with another health activist, Cherise Shockley, the creator of DSMA (Diabetes Social Media Advocacy). Why should it matter to you and to our community what a gem Cherise is? Because… over and over again as I heard Cherise speak about her disease, the patients she works with, or her experiences as an advocate, I smiled because I’ve said the very same words. Spending time with Cherise was valuable and encouraging. Believe it or not, fighting RA while trying to reform the system can be disheartening at times. How heartening it is to see others fighting the same battles. We all need that kind of support and I hope many of you find it in the RA Warrior community.

The other big positive on Friday: the nurse practitioners themselves.

I’ve always been a fan, but I never thought about why. Nurse practitioners care for patients, often doing the same work that doctors do, but their approach is usually very different. They are good listeners who expect patients to give intelligent input and become educated about their health conditions.

We especially appreciate Michelle Litchman, an NP who reached out to WEGO Health to invite patient health activists to attend in the first place. Kudos to Michelle for also bringing more NP’s into social media. How promising for the NP community – and those patients who count on them – to see growth in such key ways.

Take heart! We in this community are not alone. There are other communities in healthcare who have our best interests at heart. Repeatedly, I heard last week, “What can we do to help your community?” How would you answer that? Please give us your input on the comments tab!

Postblog: I’m posting this blog from San Francisco! Katie Beth and I arrived yesterday at about midnight to speak at a digital health conference this week. More on that asap. If you’re on Twitter, you can follow the hashtag #digpharm this week to follow Tweets (posts) from this conference.

Recommended reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

6 thoughts on “Energizing E-patient Engagement – Collaborations that Count

  • June 26, 2012 at 2:18 pm
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    We are so happy to hear about your positive experience at the nurse practitioner conference! It is so nice that you received such support and validation from not only the nurse practitioners but also from other advocates! This type of event seems so uplifting, and the progress shown must help you to know that your tough task as an RA advocate has been worth the difficulties you have gone through! Kudos, kudos, and lots of hugs, Kelly!

    Reply
    • June 26, 2012 at 3:11 pm
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      Thank you so much Vi. It’s one of the most valuable things we could do – to make health care professionals more aware of our disease. Imagine how the NP’s could help diagnose people earlier or help them manage their disease better – my own pediatrician is an NP and she’s always behind me in trying to get the best care for my kids.

      Reply
  • June 28, 2012 at 9:37 am
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    Hi Kelly,
    I’ve often told you about how much I love “my” medical team. The NP at my pain specialist and at my rheumy’s office are amazing. They always take the time to talk to me, to listen to me, to get to know me… They are rare gems, indeed. They ask me follow up questions about things we talked abou the previous visit, a month or more later. They can look at me, look me in the the eye and they can tell how I feel from that… I came in to my rheumy’s once in the middle of a terrible flare. I hurt so bad, I could barely move. My NP took a long look at me, and with tears in her eyes she started the conversation I hate having. “this is not good, José. We need to…”… My NP at my pain specialist told me once that it isn’t just about listening what the patients tell you. “for instance, I know you don’t like complaining, but I can see by the way you walked in and sat down… You’re back hurts, it looks like your hips and knees are bothering you by the way you crossed your legs and holding yourself off the seat back and stiffly”… I can honestly say that I love them both. They are like dear llife-long friends. They know me in ways few people in my life do. Me. Not just my symptoms but them too… Wish everyone’s medical team was just like mine…

    Be well, Kelly. Keep up the good fight. Thank you for all you do for all of us. I really and truly admire you. I rarely hear you complain about your condition, I strive to do and be likewise…

    Reply
    • June 28, 2012 at 11:45 am
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      Would you mind just mentioning what state you live in? I’m sure it’s not mine, but I am curious!

      Reply
      • June 29, 2012 at 12:09 pm
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        Sure. I live in Scottsdale, Arizona. Part of the beautiful Valley of the Sun.

        Reply
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