Lessons I've Learned as a Patient Building a Vision Most Said Was Crazy | Hacker News Reader

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

crohnology.com

65 pointsseanahrens18 comments

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.

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!

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...

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

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.

"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.

You're right - they aren't treating their condition, they are trying to discover how not to aggravate whatever it is that's wrong with their system. And this really is something which doctors should know about and be able to prescribe: "Here, try this diet and tell me if you have any symptoms." before giving them experimental drugs with nasty side-effects. It won't help us understand how the condition works, why it happens and indeed, won't cure a person, but it will let them live like most everybody else at a minimal cost.

"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.

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.

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

http://www.sciencebasedmedicine.org/index.php/lessons-from-h...

Good point, and neat link.

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

"homeopathy was derived from a theory"

Sure, if, by "theory" you mean "outlandish idea someone made up without any basis in fact and might as well have pulled it out of their ass" ("just a theory") instead of "systematic framework of ideas intended to account for, explain and relate together a wide amount of existing observational and experimental data, and to predict the outcome of similar results in the same field in the future" ("scientific theory").

"Like cures like, and weaker is stronger" was not a "theory". It was a wild-ass guess which also turned out to be fantastically wrong. The thing that made homoeopathy practitioners think it worked was bad (non-blinded) patient experimentation, where things like the observer effect, confirmation bias, the placebo effect, regression to the mean, and a whole bunch of other psychological biases, all came (and still come) into play.

"sure, if, by "theory" you mean "outlandish idea someone made up without any basis in fact and might as well have pulled it out of their ass"

I meant it in the sense of classical greek philosophy, since that's what it seems most similar to. E.g. it sounds like an idea out of Phaedrus or something.

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.

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!

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!

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.

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-...). 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.

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.

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