Society for Participatory Medicine
e-patients.net blog
medical records
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 Morehc's problem list, medical records, reforming hc
Medical Devices: Another take on “We want Access to our Damm Data”
Another potent guest post by SPM member Alexandra Albin, @MsAxolotl. If this doesn’t give you a sense of who is “the ultimate stakeholder” in health matters, nothing will. Remember, “patient” is not a third person word. Your time will come. A conversation on the SPM listserve was started by Joleen Chambers, @JjrkCh, a patient advocate [...]
Read Moree-patient stories, medical records
Hugo Campos on NPR’s “On The Media”
Read to the end… Our man Hugo Campos (see Friday’s post) is becoming a media star! TEDx, then MIT Technology Review, now NPR’s ”On The Media”! From SPM co-founder Joe Graedon, of People’s Pharmacy, on the SPM listserv – see also the items below …
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Hugo Campos at TEDx Cambridge: “Gimme My Damn Data,” Defibrillator Edition
We often say here “Gimme my damn data,” referring to our sentiment that data about our health is our data, about us, created for our well-being. And as the saying goes, “Nothing about me without me.” And where, we might ask, is that more vital than in the heart? SPM member Hugo Campos (Twitter @HugoOC) [...]
Read Moree-pts resources, medical records
OpenNotes helps me prep for a visit
My annual physical is this Friday. Since my doctor and I were among the guinea pigs participants in the OpenNotes project, I just got this reminder email: Message Date/Time: 1/17/2012 10:00:06 AM Read Date/Time: 1/18/2012 7:19:08 AM From: OpenNotes, Study To: deBronkart, Richard Davies Cc: Subject: Reminder: Review your doctor’s notes before your next visit! Dear Patient, You have a [...]
Read Moremedical records, practice variation, pts as teachers, reforming hc, shared decision making, Why PM
HBR blog: “The trouble with treating patients as consumers”
Edited a few minutes after the original post. Over on the Harvard Business Review blog a post yesterday is stirring up discussion. I hope well-informed SPM members can help shed some light in the comments there, citing as many specifics as you can. (As I compiled the paste-ins for this post, I was struck again [...]
Read Morefound on the net, medical records
Epic tale of Gimme My Son’s Damned Data! – by a doc *at his own hospital*
Followers of our “gimme my data” series will get a rough-edged refresher about current reality by the well-written and raw story of @WilliamDale_MD’s Sunday post Medical Health Record: A Personal Journey Down the Rabbit Hole. A great narrative by a physician who simply needed vaccination records for his son’s school – and who refused to use [...]
Read Moregeneral, hc's problem list, medical records, policy issues, reforming hc, understanding statistics
Fred Trotter: Data, damn data, and statistics
Why does this blog use the word “damn” so often? A search produces a whopping 38 hits, such as: Fools! Damn fools! And Medical Science (Right, Santa??) Atlantic: Lies, Damned Lies, and Medical Science “Gimme my damn data!” The stage is being set to enable patient-driven disruptive innovation Lies, Damn Lies And Statistics: Collective Statistical [...]
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Rookie e-patient @Xeni helps the docs view her data
Update 6:33pm ET: the Storify feed wasn’t working. Should be fixed now. What a rocket ride it’s been for Xeni. Tuesday morning we reported on the BoingBoing co-editor’s unexpected breast cancer diagnosis 12/9, and her odyssey reading her scan data. (CDs didn’t come with software; in a few hours with Twitter help she’d downloaded OsiriX [...]
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 [...]
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