While bouncing around on blogs, I came across one that mentioned Crohnology, an in-the-works resource for people with IBD (Inflammatory Bowel Disease – Crohn’s and colitis). I couldn’t describe it better than the site itself:
Crohnology is a project with one ultimate goal: to build a patient-centered information sharing network for people with chronic medical conditions. We envision a world in which every patient can instantly tap into the knowledge and experiences of every other, so that every patient can learn how well treatments have worked for others, whether they are alternative, experimental, or prescription.
People with medical conditions walk around generating an incredible amount of data about their health every second of every day, but we just let that data disappear. We don’t know how well most treatments actually work in the wild. Crohnology allow patients to collaborate, share health and treatment information with each other, and track and share their health. Patients learn from each other’s experiences in a massively scalable way. This turns the traditional medical model on it’s head. We think this is a better model for medicine for patients living with chronic conditions.
Genius, right? The website is in private beta (meaning it’s still being built and improved upon, and you need to be invited to be a user as of now), but I requested an invite, was “allowed in,” and have created a profile for myself that looks like this:
This site allows its users to track their health both privately (just for you to see – things like bowel movements and other details of that nature) and publicly (just for other Crohnology site-users to see). Users have a profile with a smiley-face scale at the top that can be adjusted according to how well they’re feeling, and they can list, rate, and explain their current and past diets and treatments. A key element of this website is that pretty much everything turns into a link; for example, under “Diet” on my profile, I can click on “no gluten” and will be brought to a page showing other users who are gluten-free or have been in the past, and I can see how they rate its effectiveness. Then maybe I’ll go to one of their profiles and see who they are and what else they’re doing for their IBD. Like on Facebook, you can write on other users’ walls and give status updates (generally health-related – what the site is for!)
In the description above, the part that really hits home for me is when they say, “People with medical conditions walk around generating an incredible amount of data about their health every second of every day, but we just let that data disappear.” Sharing what I’ve learned is one of the reasons I have this blog, and I’m really excited to have another resource to share my progress and learn from others, one that’s exclusively for others with IBD. Just as pretty much everyone is on Facebook, I see Crohnology being something that every IBDer will use once it’s up and running publicly, if I have anything to do with it…or even if I don’t have anything to do with it! – How could this not explode? Every medical condition should have a site like this. I’ve found that some forums are helpful, but I could see them being superseded by something like Crohnology, which is more focused and organized. My blog will stay, though; it serves different purposes than Crohnology. So do not fear. Read on.