
Lessons I've Learned as a Patient Building a Vision Most Said Was Crazy - seanahrens
http://crohnology.com/blog/12-believing-in-the-patient-revolution
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AznHisoka
I admire what you are doing, I really do.

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.

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.

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.

~~~
seanahrens
Yup, working with limited resources initially to test the concept and get
where we want to as a team, but you've got the right idea!

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tuxguy
Great job.

Just curious, I have had similar ideas, but saw this NYT article about sites
like CureTogether.com and PatientsLikeMe.com, & decided it was a _met need_.

[http://www.nytimes.com/2010/05/30/business/30stream.html?pag...](http://www.nytimes.com/2010/05/30/business/30stream.html?pagewanted=all)

I am passionate about using tech to improve healthcare & would love to talk
over email/IM about your idea in detail

All the best & keep up the great work

~~~
seanahrens
Tuxguy, thanks a bunch for the comment. Yeah CureTogether and PatientsLikeMe
exist, but they didn't seem to fill the specific vision for a complete product
I had -- which was THE location for people with a specific chronic condition
to go. In order to do that, you kind of have to make a place more than a
product. And my hypothesis is that making a _place_ for this purpose requires
the perfect balance of social elements, health tracking, and knowledge sharing
(q&a). I can dig into it more, but the basic essence that as hard as some of
the other players have tried, they still have yet to capture any Facebook-
esque stickiness to their services. I believe that there is room for health
software that does have this property. That patients really identify with, and
will come back and use.

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Karellen
"Patients experiment with alternative treatments like diets, supplements, or
activities, and learn whether they work or not."

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.

"patient-to-patient healthcare is "crazy", "dangerous", or blasphemous"

"Blasphemous" - uh, WTF? "Crazy" - maybe, although I'd have gone with
"foolishly optimistic disregarding the brain's ability to fool itself".
"Dangerous" - definitely.

"Oftentimes I'm finding that hearing "no" means you're doing something right."

"They laughed at Columbus, they laughed at Fulton, they laughed at the Wright
brothers. But they also laughed at Bozo the Clown." -- Carl Sagan.

Oftentimes when you hear "no", it actually means you're just fucking wrong.
Not always, it's true. But mostly.

~~~
Alex3917
"they learn how every non-scientific "modality" of "treatment" which doesn't
work gets started."

You do realize this process is the foundation of the scientific method, right?
It's not like new drug ideas come from the science fairy.

And also you are wrong on your history. E.g. homeopathy was derived from a
theory, not from patient experimentation.

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jtheory
Well, from a hypothesis. Not a theory, really, because it didn't really have a
body of evidence supporting it.

Also worth pointing out, to anyone who might wonder if the ideas behind
homeopathy might actually make sense -- that this was pre-germ-theory. I.e.,
he didn't know microorganisms existed, or that they might have something to do
with illness.

~~~
Karellen
OTOH, people have been debunking homoeopathy for over 160 years, also arguably
pre-germ-theory:

[http://www.sciencebasedmedicine.org/index.php/lessons-
from-h...](http://www.sciencebasedmedicine.org/index.php/lessons-from-history-
of-medical-delusions/)

~~~
jtheory
Good point, and neat link.

So let's go with "easily-invalidated hypothesis even at the time."

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lunchbox
This looks like PatientsLikeMe (<http://www.patientslikeme.com/>), 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.

~~~
seanahrens
You know, that is the number one comparison people make. I should probably
work on incorporating into these blog posts a little sentence or two to
address the question more when it comes up. PatientsLikeMe has done a great
job at building comprehensive tools for symptom and lab value tracking. Where
they fall short however is providing a real palatable and compelling reason
why people should do this.

And that compelling reason--it is our hypothesis--comes from community, and
knowing that what you do on the site can very directly help others. And PLM is
a quantitative system, not a community place. It is our belief that instead of
feeling like a hospital's electronic health record system, successful software
would feel more like a Facebook -- where it is the real relationships, your
real ability to help others, that compel you to share your knowledge and what
treatments have worked for you.

And yes, while Crohn's & Colitis are our first network, you are on the right
track knowing that our heads are churning on ways to make software that helps
people with one or more of many other chronic conditions.

I hope that is helpful!

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phil303
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.)

I wish you all the best of luck in your endeavor and keep up the good work!

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troymc
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.

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).

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.

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bluekeybox
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"
([http://www.forbes.com/sites/davidwhelan/2012/01/27/spending-...](http://www.forbes.com/sites/davidwhelan/2012/01/27/spending-
other-peoples-money-what-professors-and-doctors-have-in-common/)). 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.

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lorenzsell
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.

