What is Crohnology?
Crohnology is a network of patients, connected by the internet, that empowers them in a democracy of distributed, real-time medical research contribution. It is a website at Crohnology.com, and mobile solution (over SMS and in-the-works app), initially targeted at patients with the conditions Crohn’s & Colitis.
Crohn’s & Colitis, like most autoimmune diseases, are poorly understood. The autoimmune response in these diseases cause patients to experience serious flare ups of inflammation in the digestive tract. Current medicine has failed to find a cure, and since the symptom management drugs are unreliable, patients are left around the globe to fend for themselves on concocting their own solutions to keep the disease in check. Having Crohn’s myself is why I decided to build Crohnology, and the word Crohn’s is where its name comes from.
In the short couple years since I launched the first version online in 2011, Crohnology has attracted thousands of patients from every continent of the world to collectively band together and advance medical knowledge through individual contributions of patients. The patients record things such as the treatments they are taking, when they started and stopped those treatments, and how their health is doing over time. These health reports aggregate into a collective database of knowledge that is, in my vision, freer to be used for medical knowledge (and of higher data count and quality) than any electronic medical record (EMR) system.
Beyond medical knowledge, is connection. Patients can discover other patients living in their same cities and meet up in order to learn from one another.
Why did I start it?
From my personal experience and struggles over the years to treat my Crohn’s with many different treatments (many non-conventional, or non-approved), I’ve learned a few things.
Patients are walking around with a vast wealth of data in their head that—up until now—we have been simply letting disappear. For the first time ever in the history of the world, patients have in their pocket the computing power to continually contribute their experience to research. This will fundamentally change medical research. This will fundamentally change what it means to be a patient.
Out of the entire possibility space of treatments that exist, the ones that make economic sense to bring to market are only a tiny fraction–we’re almost exclusively studying the treatments that make multi-billion dollar returns. This means that the playbook that doctors are treating patients off of is a subset of what actually works. That means things that can’t be patented—like diets, natural therapies, many things that patients find effective outside the doctor’s office—don’t get the clinical evidence they need for a doctor to prescribe them.
It’s a very real possibility that the cure for the world’s worst diseases exists outside of what our economic system is studying.
A full-length interview with me on Crohnology’s origins.
A heart touching voice-over of me going about my day.
Coverage & Filming
Crohnology has is being filmed as a subject of a couple upcoming documentaries. “In Our Own Hands” is a documentary by Gabriella Rosen Kellerman on how technology is democratizing medicine, by enabling patients to become active contributors towards research for their own condition. Raw in-the-works footage of that documentary is below. “WANTED: Crohn’s End” is a film by Reid Bryant Kimball on the extreme (often self-administered) treatments that patients living with Crohn’s will do when nothing else is working. Crohnology has been covered by Inc. Magazine, Fast Company, and was featured on UK National Television (that video is on the right).
Raw footage from an upcoming documentary
A TV Spot Broadcast in the UK
Present and Future
Crohnology continues to sign up thousands of patients around the globe in a network where patients are actively contributing to advance research. This grant will advance the research findings from Crohnology into testable, mainstream medical knowledge.