Patient-Centered Research and ACT Live!

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.

 

 

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

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