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.

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

• Positive Signs for Rheum Patient Activism
• The Next Three Days: a Movie Review with a Twist
• A classic: So Glad Your Rheumatoid Arthritis Is Cured