Society for Participatory Medicine
e-patients.net blog
Diagnosis
key people, news & gossip, policy issues
“Father Knows Best”: Vint Cerf on what innovation really is
For those who like to look deep into the structure and causes of change, something fun is in process: an interview with Vint Cerf, with an explicit e-patient component. Cerf is acknowledged as one of the fathers of the internet. In my lifetime few people, if any, have contributed more to ground-breaking, earth-shaking change. The interview [...]
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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 [...]
Read Morept/doc co-care, Why PM
Unleash the Hot Talent: A Letter from a Patient
This is a guest post from Christine Kraft, Twitter friend @ChristineKraft. She’s a pensive, musey blogger at CocoVillage, and “wicked smaht,” as we say in Boston. She’s also the one who introduced us to Regina Holliday last year. She recognizes talent when she sees it – and here, she plays the role of patient as ingenue, [...]
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The Pew Internet/Health FAQ
A big part of my job, and one I love, is answering questions, mostly from reporters. Sometimes I have just the data or insight someone needs, often I recommend someone else. Here is a sample of frequently-asked questions and my current answers. Please add your questions and answers in the comments: What are you curious [...]
Read Moregeneral, hc's problem list, medical records, policy issues
Dx: Revolting. Rx: Revolt.
Tuesday night, endorsement #906 on HealthDataRights.org came from a Judy Beckman, who says: “I agree all the way I cannot get MY records unless I pay for MY records $1.00 per page WHY WHY these are MINE???????????” Indeed, why? Whose data is it, anyway? This spring I’ve been learning (slowly) about HIPAA – the immense [...]
Read Moree-patient stories, others' e-patient stories
E-patient Interview: Sheryl Stein
Sheryl Stein, known to many as “wrekehavoc,” dispenses her wisdom and humor on a 6,000-member online community of parents (using good old listserve technology) and on her blog. In this third edition of our e-patient interviews, Sheryl talks about the power of community and how “reaching out via the internet is now an ingrained habit [...]
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