Lessons I've Learned as a Patient Building a Vision Most Said Was Crazy
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Re: Lessons I've Learned as a Patient Building a Vision Most Said Was Crazy
#2Great 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
Re: Lessons I've Learned as a Patient Building a Vision Most Said Was Crazy
#3Great 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.
Re: Lessons I've Learned as a Patient Building a Vision Most Said Was Crazy
#4I 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.
Re: Lessons I've Learned as a Patient Building a Vision Most Said Was Crazy
#5Hey 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!
Re: Lessons I've Learned as a Patient Building a Vision Most Said Was Crazy
#6This 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.
Re: Lessons I've Learned as a Patient Building a Vision Most Said Was Crazy
#7I 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 si…
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!
Re: Lessons I've Learned as a Patient Building a Vision Most Said Was Crazy
#8This 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!
Re: Lessons I've Learned as a Patient Building a Vision Most Said Was Crazy
#9It'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.
Re: Lessons I've Learned as a Patient Building a Vision Most Said Was Crazy
#10Good 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.