NPSF’s magnificent Universal Patient Compact
One of my personal pleasures in the first year of the Society for Participatory Medicine has been discovering people in other parts of the “patient culture” who’ve been doing wonderful, empowering, participatory things for years – and who’ve already been producing valuable results for years. Example: the patient safety movement.
On Paul Levy’s blog I learned about Linda Kenney, founder of MITSS; I met her and wrote about her here. Through her and others I met folks from the National Patient Safety Foundation, and especially its Lucien Leape Institute, which published a major report this month with a solid systemic look at cultural challenges in paternalistic medicine. Even got to be in a small group workshop with Lucien himself last fall. (Didn’t know who he was, but I thought “This guy knows his stuff!” Funny.)
Sometime this winter I got my hands on this magnificent NPSF document. Any of it sound familiar?
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ER tweet: “If my husband dies, I’m going to go [eff]ing ballistic”
When Benn Rosales had a heart attack in December, his wife Lani, a very active member of the Twitterati, tweeted throughout the experience. Afterward she thought to compile those tweets as a record of Benn’s e-patient experience: “this hospital is understaffed and we’re being sh*t on because of it. if my husband dies i’m going to go [eff]ing ballistic.” Here’s the story, told in tweets, largely unedited…
http://twitter.com/LaniAR/status/6752311191
dear ER, oh.em.gee.you.are.sooo.slow. please be less slow. love, lani.
9:10 PM Dec 16th, 2009 from web
http://twitter.com/LaniAR/status/6752565073
@jburslem @K2daV @matthew_parente thanks. you guys are wonderful 
hopefully we can go home tonight in time for jimmy fallon
9:19 PM Dec 16th, 2009 from TweetDeck
http://twitter.com/LaniAR/status/6753414164
RT @BennRosales: if i keel over tonight @laniar gets everything signed me will by tweet. [I'm putting TEN Realtor logos on ur grave!]
9:49 PM Dec 16th, 2009 from TweetDeck
http://twitter.com/LaniAR/status/6753425383
okay, finally in triage, @bennrosales being questioned.
9:50 PM Dec 16th, 2009 from TweetDeck
http://twitter.com/LaniAR/status/6754309460
oh jesus, it’s blood test and ct scan time. we should take bets on diagnosis so we can pay this damn ER bill…. who’s in? 
10:29 PM Dec 16th, 2009 from TweetDeck
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