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Lessons I've Learned as a Patient Building a Vision Most Said Was Crazy

65 pointsby seanahrensabout 13 years ago

8 comments

AznHisokaabout 13 years ago
I admire what you are doing, I really do.<p>That said, just putting my business hat on.. you haven't really proved your vision isn't crazy. The question is: how do you intend to generate traction + revenue? Just having an unique model, and a centralized community isn't going to be enough. As they say: build it and they won't necessarily come. In my eyes, you will need to rely on SEO a lot. The good news is that your site/model is unique in a field filled with a lot of spam. So it shouldn't be too tough to get high quality links.<p>The other good thing is you don't need a gazillion users since people (drug companies) will pay a lot for a very focused set of users with a specific disease.<p>But 50 pages indexed in Google right now isn't going to cut it. Not suggesting you go pull off a Demand Media, but you're gonna need some content.
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tuxguyabout 13 years ago
Great job.<p>Just curious, I have had similar ideas, but saw this NYT article about sites like CureTogether.com and PatientsLikeMe.com, &#38; decided it was a <i>met need</i>.<p><a href="http://www.nytimes.com/2010/05/30/business/30stream.html?pagewanted=all" rel="nofollow">http://www.nytimes.com/2010/05/30/business/30stream.html?pag...</a><p>I am passionate about using tech to improve healthcare &#38; would love to talk over email/IM about your idea in detail<p>All the best &#38; keep up the great work
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Karellenabout 13 years ago
"Patients experiment with alternative treatments like diets, supplements, or activities, and learn whether they work or not."<p>No, they learn whether they experience pareidolia or not, and that's how shit like homeopathy, cupping, rebalancing the humours, and, oh, every other non-scientific "modality" of "treatment" which doesn't work gets started.<p>"patient-to-patient healthcare is "crazy", "dangerous", or blasphemous"<p>"Blasphemous" - uh, WTF? "Crazy" - maybe, although I'd have gone with "foolishly optimistic disregarding the brain's ability to fool itself". "Dangerous" - definitely.<p>"Oftentimes I'm finding that hearing "no" means you're doing something right."<p>"They laughed at Columbus, they laughed at Fulton, they laughed at the Wright brothers. But they also laughed at Bozo the Clown." -- Carl Sagan.<p>Oftentimes when you hear "no", it actually means you're just fucking wrong. Not always, it's true. But mostly.
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lunchboxabout 13 years ago
This looks like PatientsLikeMe (<a href="http://www.patientslikeme.com/" rel="nofollow">http://www.patientslikeme.com/</a>), but specialized in Crohn's disease. I wonder how this site differentiates itself, and what aspects of it are unique to Crohn's vs. what could be generalized for other health conditions.
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phil303about 13 years ago
Hey Sean, a certain mutual friend of ours led me to your site a few months back and I've been checking up on it every once in awhile because I think it's a pretty amazing idea (and I'm a little jealous.)<p>I wish you all the best of luck in your endeavor and keep up the good work!
troymcabout 13 years ago
It's easy to guess why there has been a lot of skepticism towards this approach to doing the science, i.e. gathering data from a bunch of people in different situations doing different things... it's just so unlike the standard approach of doing double-blind studies with placebos and lots of participants.<p>That said, if you gather enough data... maybe some sound conclusions or inferences can be drawn. Such is the hope of all "big data" projects. I sincerely hope this project has some folks who know how to analyze all the data (i.e. rigorously).<p>Edit: "Big data" may be a buzzword right now, but it's not a new approach. Astronomers can't experiment with planets, stars or galaxies; they "just" make boatloads of observations --- and they've been able to draw many conclusions.
bluekeyboxabout 13 years ago
Good luck. I was thinking of something very similar when I was reading this Forbes article on why medical drugs and college textbooks are expensive, called "Spending Other People's Money: What Professors And Doctors Have In Common" (<a href="http://www.forbes.com/sites/davidwhelan/2012/01/27/spending-other-peoples-money-what-professors-and-doctors-have-in-common/" rel="nofollow">http://www.forbes.com/sites/davidwhelan/2012/01/27/spending-...</a>). I remember that article got me pondering all kinds of things, including the role of experts in the networked world and von Mises' economic calculation problem. Good to see someone working on this.
lorenzsellabout 13 years ago
Sean - love the new video and love the work that you're putting so much of your story into this. i have no doubt you will realize you're "crazy" dream.