As My Joints Turn

My Autoimmune Soap Opera

I just attended my third American College of Rheumatology/Association of Rheumatology Health Professionals Annual Meeting in Washington DC.  I attended as a cofounder of IFAA (International Foundation for Autoimmune Arthritis).  While there, I had the opportunity to speak/interview researchers, industry leaders, and other member of non-profits as a part of ACT Live (learn more about A Community Team (ACT) here:  http://bit.ly/2faPBOA).  I was able to work alongside my amazing IFAA crew (Tiffany Westrich (CEO/Cofounder), Kerry Wong (Executive Assistant),  Laura Schaaf (Training Coordinator), and volunteers extraordinaire Deb Constien and Therese Humphrey.  We were also joined by Julie Cerrone (WegoHealth/It’s just a bad day, not a bad life), and Charis Hill (Being Charis- a voice for many).

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Tiffany Westrich-Robinson, Charis Hill, Julie Cerrone, Kelly Conway

An All-Star team, right?

 

The ACR/ARHP annual meeting is not a patient event.  It is for professionals in the field of rheumatology to link with each other while learning about the latest in cutting edge education, research, and advocacy.  Our attendance at this conference gave us an opportunity to meet and interview some of the top people in the rheumatology community as a part of our ACT project.  We at IFAA and ACT feel that patient-centered research is vital to the rheumatology community.  We want to ensure that the patient voice be heard throughout the research and development process, and  identify where in the process that patient inclusion could positively influence the outcomes. We spoke with researchers, doctors, and patients from all over the world on the pros and barriers of patients involvement in research. It was thrilling to be a part of this.  I have to say, it was  extra special to interview researchers who are also patients.

Please head to IFAA’s Facebook page to see all the interviews that have been posted thus far.  Thanks to IFAA for this amazing opportunity!  https://www.facebook.com/IFAutoimmuneArthritis/?fref=ts

I was only able to interview 2 people because I had to leave early to get back to work.  I’m far from a good interviewer, but I tried my best.

 

 

2 thoughts on “Patient-Centered Research and ACT Live!

  1. Rick Phillips says:

    I agree patient-centered research is important for a wide variety of reasons. I feel strongly about it and I hope you had a great time at ACR.

    Liked by 1 person

    1. I did, Rick. I look forward to it every year. Check out the videos. It’s really interesting hearing the researchers’ perspectives.

      Like

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