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

PCORI stakeholder workshop

Move your mouse to pause the slide show. [galleryview id=14 showPanels=true showCaptions=false showFilmstrip=true panelWidth=600 panelHeight=400 panelScale=nocrop transitionSpeed=800 transitionInterval=4000 fadePanels=true frameWidth=60 frameHeight=40 filmstripPosition=bottom pointerSize=8 frameScale=crop frameGap=5 frameOpacity=0.3 easingValue=swing navTheme=dark startFrame=1 pauseOnHover=true] << Back to 2012 << Back to Gallery ...Continue reading Make a Comment » 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

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

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