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EPatientDave
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Libby and all, I'm VERY sorry, but I've had to cancel my attendance at AMIA this year. I thought I'd communicated it to the right people but I hadn't - my fault - so it just came to light a couple of days ago, when I got a note from Dr. Safran. I feel terrible. I was so looking forward to reuniting with last year's panel plus Sally!
I'm not disagreeing, of course, but I wonder, are they aware of it? Which century's methods are they being taught? In any trade school (not that medicine's a "trade" like that), students are taught what's on the horizon, so they'll be prepared for it. I'm really interested in this subject - it's a new idea for me. Intriguing.
Toggle Commented Apr 23, 2011 on Thinking Beyond Health 1.0 at Docnotes
Great to meet you, Jacob! I hope the Albany Med students are being taught post-2010 reality as well as pre-2000 reality. I respect pre-2000 reality! The treatment that saved me was FDA-approved in the mid-90s. I'm just saying that these students will be practicing in 2050, so they better not ONLY be getting taught things from last century. For instance, do they know that American Well is a thriving company - growing like a weed, even? Adopted by two states, and the whole Department of Defense (if I recall correctly)? I'm intentionally not including a link, nor why I ask, because if the answer's no, it frankly means they're being trained in an outdated world. And if I were them, I'd raise havoc. :-) And if they DO know American Well is growing like a weed, then good, they'll completely understand why Eva's question is not goofy - people are DOING IT already! And it's not just good technology, it's a completely radical business model, which its *physician* users love too. Changing this profession isn't nearly as difficult as it seems. Just need to let fast innovators in, and make everyone listen more the to users (docs & patients) than to the establishment. Keep in touch!
Toggle Commented Apr 22, 2011 on Thinking Beyond Health 1.0 at Docnotes
Wow, that "flower" graphic on slide 13 is a head trip all by itself - never seen that. I don't pay close enough attention to you on Twitter - I only noticed this post via @Berci's blog! Great stuff, David. We gotta make a practice of carrying a digital voice recorder so we can marry the soundtrack with the slides. I want to know what you SAID on some of these.
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Thanks for finding that, Dianne. I'm glad they're not restricting it to degreed people, as Medpedia does. (Clearly, as my kidney cancer example shows, that's no inherent guarantee.) But I do wonder how they vet applicants - and I wonder if they go back and check the expert's advice.
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fwiw, I don't care who sponsors a site if the info is what patients frickin' NEED in their hour of crisis. But to hang out a single "Git yer red hot experts here" without being responsible for whether said experts are actually reliable... hm. I'm also puzzled by the claim that they make it much easier to find what you need. Searching for "stage IV kidney cancer treatments" lists lots of other Stage IV cancers, but doesn't find what "stage 4..." does. Etc. The corker for me was the "expert" advice (from Johns Hopkins no less) that immunotherapy for kidney cancer (the treatment I got) is described as "has been shown to have activity, but the effect has been very modest." Right: at a specialist center like Beth Israel Deaconess 25% of patients respond, and half have a complete response (i.e. are essentially cured) in three months. Mild. Now let's see how long it takes them to update the info. I'm writing this at 7 ET on 10/20/2010.
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From the Participatory Medicine standpoint, there seems to be a huge hole in the ShareCare model: where's the voice of the patients? Are our experiences and observations irrelevant? Where is the vetting by people with real world experience? I'm all in favor of expert advice, but it's got to be reliable, and as far as I know, no single category of advisor is reliable (including patients, and including "experts"). I'm no doctor - I only have an inkling about one subject - my own disease, stage IV renal cell carcinoma - and one treatment, HDIL-2. Their content on this subject is crap: total, feeble, incomplete, out of date crap. And is there any way to comment? Not that I can see. Strikes me as a dangerously broken model for assessing quality of content - anything but "expert." BUT, maybe I'm missing something - can someone prove me wrong?
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Ho boy. I'm with you, sister. I've just been reviewing my CaringBridge journal, including the equally sudden discovery of my own disease. I'll check in here for updates. Beaming love and support your way.
Toggle Commented May 18, 2010 on A turning for J&J at Endless Knots
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May 17, 2010