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PCORI Workshop post 1: Kelly Young (@RAWarrior)

As noted in today’s earlier post, we’re starting a series of posts by SPM members who participated in last weekend’s PCORI workshop. Kelly Young (@RAWarrior) is one of the smartest e-patients I’ve ever seen anywhere. Aside from her technical...
Building Us Up, Not Tearing Us Down

Building Us Up, Not Tearing Us Down

“Lack of effort and persistence”  Those words cut like a knife, leaving a deeper wound than any facet of illness my daughter has faced. A provider used those words to describe my 19-year-old daughter Sara, who has lived her entire life with chronic complex medical...
Creating Your Own Self-Advocacy Style

Creating Your Own Self-Advocacy Style

We cannot always choose what happens to us in life, but we can choose how we respond and handle it. Take for example, the time that I had a physical examination with my relatively new primary care physician. They did blood work and I received a report, along with a...

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