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PCORI Workshop post 1: Kelly Young (@RAWarrior)


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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...

Beginning a series: SPM members’ thoughts on the PCORI workshop


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All: I’d like to collect a list of all blog posts about this PCORI weekend, from SPM members (our Society) and anyone else. Please write to blog@participatorymedicine.org, and disregard the auto-reply that you’ll get. __________________  This post started...

Save the Date: PCORI’s National Patient and Stakeholder Dialogue


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We encourage our readers to attend this February 27 event and help PCORI shape its agenda for clinical effectiveness research. You can find a link to their draft priorities by clicking to this page. Registration for the forum is required; please see the link in the...
Building Us Up, Not Tearing Us Down

Building Us Up, Not Tearing Us Down


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“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


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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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