e-patient Archives | Page 2 of 6 | Rheumatoid Arthritis Warrior

Happy Birthday RAW! The Day I Could No Longer Stay Silent

May 17, 2013April 20, 2019 Kelly O'Neill 35 Comments Comprehensive RA Care, Cricoarytenoid arthritis, e-patient

This week the British Medical Journal published my article which they titled: Doctors’ understanding of rheumatoid disease does not align with patients’ experiences. But first, today is a very special day. Today begins year five of RAW Four years ago today, RA Warrior was born. I’d been studying, writing, and talking to patients for a few months....Continue reading 35 Comments » Read more

Words of Help From a Friend We’ve Never Met – Until We Do

May 2, 2013May 14, 2018 Kelly O'Neill 2 Comments e-patient, Living with chronic illness like RA

Isn’t life full of special coincidences? Some even call them “God-incidences.” Circumstances show know that life is not all random, but the right words are often there at the right time – no matter when they were written. A couple of special coincidences occurred in February when I was in Washington. As my friend Leslie and...Continue reading 2 Comments » Read more

Health Data Is Like Yogurt: Full of Possibilities

April 25, 2013May 14, 2018 Kelly O'Neill 3 Comments e-patient, Humira

Show me the data! Enjoy a laugh with this short adaptation of the legendary “Show me the money” scene from Jerry Maguire created by Dr. Eric Topol of Scripps Translational Science Institute. “Show me the money” has become a kind of motto that also reminds me of Wendy’s old “Where’s the beef?” ads. People want to...Continue reading 3 Comments » Read more

What Drives Patients to Get Engaged in Healthcare?

March 22, 2013May 14, 2018 Kelly O'Neill 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

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

October 27, 2012May 14, 2018 Kelly O'Neill 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 O'Neill 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