Patient advocacy Archives | Rheumatoid Arthritis Warrior

PCORI, Is It Worth It to Include Patients?

November 9, 2013May 14, 2018 Kelly Young 6 Comments e-patient, Patient advocacy, PCORI

The patients who read this blog are like dear brothers and sisters to me. I’ve met many in person and it’s like a family reunion. The RAW website and blog obviously speak to others as well – lay and professional caregivers, rheumatology industry, and sometimes the larger patient engagement movement. We’re working hard for change...Continue reading 6 Comments » Read more

We Must Celebrate! Your Voice Was Heard, Despite My Limitations

November 4, 2013May 14, 2018 Kelly Young 26 Comments American College of Rheumatology, Communicating about RA, Patient advocacy, Rheumatoid Patient Foundation

Months – actually years – of my life went into the last couple of weeks. It’s a peculiar feeling when it all comes together in a moment. While there are important points to dig into from the annual ACR meeting, we should pause for a moment to reflect on where we are. (A recent Spear...Continue reading 26 Comments » Read more

Sleepless in San Diego

October 25, 2013May 14, 2018 Kelly Young 12 Comments American College of Rheumatology, Living with chronic illness like RA, Patient advocacy

Each fall, Katie Beth and I travel to wherever the American College of Rheumatology (ACR) holds its annual scientific meeting. Last night, we arrived in San Diego. 1) This is huge. The Rheumatoid Patient Foundation (RPF) is presenting an exhibit in the Exhibit Hall. 2) I’m speaking with two other RPF volunteers in a session on Tuesday...Continue reading 12 Comments » Read more

Gatecrashing: The Story of Rheumatoid Patients at the ACR Meeting

October 14, 2013May 14, 2018 Kelly Young 24 Comments American College of Rheumatology, e-patient, Patient advocacy

It’s bedtime here. How about a bedtime story? Once upon a time in Philadelphia- ACR 2009 After being diagnosed with Rheumatoid Arthritis in 2006, I read some articles from reliable hospitals like Johns Hopkins. Sometimes I looked up symptoms online or read patient comments on large websites like Health Central or WebMD. Eventually I entered discussions with...Continue reading 24 Comments » Read more

An Absolutely Vile Disease, the “a” Word, & New RA Animated Video

October 12, 2013May 14, 2018 Kelly Young 17 Comments Patient advocacy, Rheumatoid Arthritis awareness, Video or podcast

RA Veterans animated video Last year, I got a call from a woman named Courtney floating a trial balloon on creating an animated video for RA patients. After some discussion, I agreed it could be interesting, but with a few “ifs” like if it’s positive, honest and realistic, and if its not insulting to patients. Courtney’s...Continue reading 17 Comments » Read more

What Drives Patients to Get Engaged in Healthcare?

March 22, 2013May 14, 2018 Kelly Young 15 Comments e-patient, Patient advocacy, Video or podcast

Did you ever forget what you were about to say? Last year when I testified at an FDA advisory hearing, I couldn’t even remember my name. I swear I could feel my heart leaping six inches in front of me. It was unexpected because I’d recited my five-minute speech dozens of times from memory. How...Continue reading 15 Comments » Read more

Helping the Healthcare World Understand Rheumatoid Disease

November 9, 2012May 14, 2018 Kelly Young 23 Comments American College of Rheumatology, Patient advocacy, Rheumatoid Patient Foundation

The “don’t-miss-the-plane” rush is on. My suitcase is half packed. I have a fever and I’m not washing my hair today because my wrist can’t muster it. Yet, I’m going to get on that plane to D.C.! Why all this bother? I’ve received messages from thousands of precious people telling their stories and how this website...Continue reading 23 Comments » Read more

PCORI – Creating a Culture for Patient-Centered Research

October 29, 2012May 14, 2018 Kelly Young 11 Comments Patient advocacy, Patient reported outcome measure, PCORI

Note! For more snapshots including the posters summarizing the PCORI workshop - click here. This weekend I attended a PCORI workshop called Transforming Patient-Centered Research: Building Partnerships and Promising Models. I’ve watched some PCORI meetings in the past since they use live stream webcasts to provide transparency. Here are some of my impressions regarding the weekend...Continue reading 11 Comments » Read more

Invisible Illness Awareness Video

October 29, 2012May 14, 2018 Kelly Young 6 Comments Invisible Illness, Patient advocacy, Rheumatoid Arthritis awareness, Video or podcast

Positively Real: Keeping the Discussion Real without Sugar Coating Everyone with an “invisible illness” owes such a debt to Lisa Copen, founder of Invisible Illness Awareness Week. She has done so much to provide support to people with “invisible illnesses” like Rheumatoid disease. I don’t know if she coined that term, but she certainly popularized it. This...Continue reading 6 Comments » Read more

Red Feet, Frankenstorm, Unexpected Sympathy, and Travel to PCORI Workshop

October 27, 2012May 14, 2018 Kelly Young 5 Comments e-patient, Patient advocacy, Patient reported outcome measure, PCORI

Tiger and I left home for the PCORI conference today in D.C. in spite of the fact that many in the D.C. are evacuating from the area! Schools were closed on the Space Coast due to Hurricane Sandy, dubbed #Frankenstorm. In Florida, Sandy wasn’t as big a deal as the half a dozen other hurricanes we’ve...Continue reading 5 Comments » Read more

We’re Warriors So Fighting On Is Just What We Do

October 19, 2012May 14, 2018 Kelly Young 14 Comments e-patient, Patient advocacy, PCORI, Rheumatoid Arthritis awareness, Rheumatoid Patient Foundation

August. We were exhausted and happy after a successful exhibit at the Rheumatology Nurses Society annual meeting. Five minutes later, I realized I was still buried in Rheumatoid Patient Foundation (RPF) projects preparations for the RPF’s next exhibit at the American College of Rheumatology Scientific Meeting in Washington, D.C. in November. And, then the hard drive...Continue reading 14 Comments » Read more

What If Rheumatoid Disease Were Recognized, Properly Funded & Medically Understood?

August 31, 2012May 14, 2018 Kelly Young 17 Comments Patient advocacy, Rheumatoid Arthritis awareness, Rheumatoid Patient Foundation

Just think. What if you told people you have RA and they actually knew what that meant instead of dismissing it? What difference would it make if Rheumatoid Disease had comparable NIH research funding to understand what causes RA? What if there were treatments that worked for all RA patients? What if newly diagnosed RA...Continue reading 17 Comments » Read more

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