Society for Participatory Medicine
e-patients.net blog
news & gossip
medical records, news & gossip, positive patterns
“I have a right to my damn data”: Hugo Campos in the Mercury News
Well, SPM’s resident ICD patient is getting quite a lot of attention these days! First a feature in MIT Technology Review in November, then his TEDx video was released this month, leading to a spot on NPR’s On The Media on 1/20, and now he’s on the front page of Silicon Valley’s newspaper – a 900 [...]
Read Morenews & gossip, positive patterns
e-Patient hits the mass media: WBZ Radio and Angie’s List magazine
It’s one thing when we “talk amongst ourselves” in our own circles; it’s a whole different thing when the message starts popping up in *mass media*, where it reaches people who had no idea. So it’s big news that we’ve had TWO mass-media developments this week with almost identical titles: Fabulous article in the January [...]
Read Moree-patient stories, e-pts resources, medical records, news & gossip
Gimme My Damn Data: cancer patient Xeni finds a “ghost penis” in her bone scan
This post contains street language about body parts, harvested from Twitter last night with Xeni’s permission. This is a story of a non-medical person getting it in gear when she finds herself in need, and what happens when she does. A famous blogger/journalist is discovering healthcare the hard way. At a time when she says [...]
Read Morefound on the net, news & gossip, policy issues
Daniel Carpenter in NY Times: Move the FDA out from under politicians
I’m no expert on the FDA but my science antennas are twitching nervously about this, so I’ll post and invite discussion. In a surprising move last week, President Obama and HHS Secretary Sebelius overrules (basically, vetoed) the FDA’s recommendation to make “Plan B” morning-after contraceptives more easily available. This was widely agreed to be purely [...]
Read Moreend of life, general, key people, news & gossip, others' e-patient stories
Steve Jobs’ Cancer Denial
The 60 minutes interview with Steve Jobs’ biographer is an intriguing piece that gives us a few insights into Steve Jobs and his battle with pancreatic cancer. But the most disturbing part of the interview for me was watching Walter Isaacson, a former editor of TIME Magazine, talk about how Jobs was in complete denial [...]
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Invitation to Connected Health Attendees, 2011
Please join us for the 2nd Annual Society for Participatory Medicine Cocktail Reception, taking place on Thursday, October 20, 2011 at the Liberty Hotel in Boston (http://www.libertyhotel.com/) from 6:00 – 8:00 pm. If you’re attending the Connected Health Symposium in Boston this week, we invite you to share your ideas and enjoy a wine bottle service, [...]
Read Moremedical records, news & gossip, policy issues, Why PM
Australian Consumer Health Forum flips from opt-in to opt-out for EHR enrollment
Big news from Down Under: the Sydney Morning Herald reports that a group of fifty consumer health advocates has unanimously backed an “opt-out” process for enrollment in electronic health records, reversing their previous position. The issue is whether by default all patients have an EHR. “Opt-out” means you’re in by default – your records will be [...]
Read Moregeneral, news & gossip, research issues, trends & principles, understanding statistics
Why Sometimes Health Reporting Should be Done By Journalists
I’m all for citizen journalism, and can even stand the content mills like LiveStrong, who have pimped out their name and brand in order to make a quick buck. But I draw the line with bad reporting and worse, biased representation of the data to prove a point. Case in point — the blood test [...]
Read Morekey 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 [...]
Read Morefound on the net, news & gossip, positive patterns
Would Your Doctor Pay for Wasted Time? (CNN.com)
Strictly speaking this isn’t about participatory medicine, but it is about being an empowered consumer of care. There are several dimensions to empowerment, including (but not limited to): Knowing what you want Recognizing whether you’re getting it When you’re not, speaking up about it – courteously, when you can. You know real change is happening [...]
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