One year ago, I placed a stake in the ground. I decided I could no longer passively accept the current state of the healthcare system without doing something about it. I decided to quit my job and dedicate myself to producing a software network that gives unprecedented power and health information directly to patients, via a system of patient-to-patient sharing modeled after Wikipedia.
Many doctors, providers, and those in the healthcare industry told me that what I was doing was dangerous. That it wouldn't work out. That patients don't know what they are talking about. That medicine should be left in the hands of the "experts". And that, at best, patient anecdotes about their experiences with treatments were "cute".
From having an incurable immune condition called Crohn's for 13 years, I saw things differently. I told them that I believe our current medical system has it upside-down. I believe patients are the most valuable part of their care. I believe they walk around with great silos of knowledge and information that is of uncountable value to the medical system and to other patients. And, from my experience, I know these silos go completely untapped.
It is necessary for us to be connected to find a cure.
Patients with chronic conditions literally go through 99.999% of their lives outside of the doctor's office, but that data from them living with and treating their condition is effectively swept aside—it's "anecdotal" after all. Patients experiment with alternative treatments like diets, supplements, or activities, and learn whether they work or not. But the system doesn't support upstreaming of that data. That data just gets lost. Leaving newly diagnosed patients to start at square one, relearning things many patients have learned before. I think that system doesn't make any sense.
One thing I learned is that if I had listened to the traditional thinkers who repeatedly told me "no"—to those people who told me that patient-to-patient healthcare is "crazy", "dangerous", or blasphemous—I would never have gotten this far. I would not have a wall full of printed emails from patients all over the globe telling me that Crohnology has already made a huge difference in their lives.
Oftentimes I'm finding that hearing "no" means you're doing something right.
Another thing I learned is that if you're willing to bet everything on something radical you truly believe in, people will come help you out. For me, one of those people is Dr. Larry Chu, at Stanford. When I shared with him my vision and the software I had developed, he told me that he wanted to spread this message to the world. He produced the video embedded at the top of this blog post, which paints my story more vividly than I could ever have hoped to do on my own. (If you find it helpful, I'd love you to share it with your friends to help spread the message to patients across the globe.)
The other amazing thing about Dr. Chu is that he is the producer of the Stanford Medicine X Conference. He believes in the patient revolution—that is, that patients should no longer be disempowered and instead should be empowered to rise up and take control of their health. Patients should have access to their data, and they should be able to share that data with others. And most of all, their experiences and voice should play an integral part in their care and the search for answers.
This year, Dr. Chu is doing something completely unprecedented. As the producer of the upcoming Stanford Medicine X Conference, he is giving away 10% of the seats to patients themselves, in the form of scholarships (regular registration is $1,199). The deadline for submitting these scholarship applications is in just two days, Thursday. If you consider yourself an empowered patient, please apply (if you're accepted, I look forward to seeing you there!)
It seems now that more and more I'm meeting people that believe. Doctors, designers, and researchers like Bryan Vartabedian, Susannah Fox, Peter Margolis, Michael Seid, Jesse Dylan, Bertalan Meskó, and Dominique Pahud just to name a few. I've found that you've gotta fly through that low fog of dismissal and doubt before you can really hit the high climb of positivity where you find people who get it.
One last thing I learned is that doing something to legitimately help people is contagious—especially when those people are really in need of help. Will Cole, whom I became good friends with when studying computer science at UC Berkeley, was so floored about Crohnology and its potential to help people that he quit his job at Microsoft to come and join me. We got backed by Rock Health and are now working out of the drop-dead gorgeous Berkeley Skydeck overlooking the San Francisco Bay.
The wave of the patient revolution is building. You, as a patient living right now in this time and space, have an amazing opportunity to be out on the front of that wave—to literally help shape the future of how we practice medicine.
Can you imagine a world where every patient is instantly connected every other? Where the treatments that work (whether eastern, western, or in between) surface from the collective intelligence of patients distributed throughout the globe? The causes, cures, and treatments we can discover from the symphony of patient experiences going on in real-time throughout the world, to me, is a mind blowing proposition.
I'd be floored if you could forward this blog post (or the the video above) on to anyone you know who has chronic condition or considers him or herself an empowered patient. Many thanks.
In other news: We've begun opening up the Crohnology alpha. Accepted patients should be getting invites on a rolling basis.
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