The New Patient Advocate: Sean Ahrens and Crohnology
We don’t really think about our gastro intestinal system until we’re hungry or we get a stomach bug. With a stomach bug, the pain, diarrhea, lethargy, and other symptoms make life miserable. Imagine having these symptoms as a constant in your life. Those who have Crohn’s Disease and ulcerative colitis live with this everyday.
So what’s going on? What causes Crohn’s and ulcerative colitis? We know that it starts with our immune system. The purpose of our immune system is to attack bacteria, viruses and other foreign microorganisms that invade our body. Normally, the gastro-intestinal system contains harmless bacteria that our body uses to help digestion and those bacteria are usually safe. Unfortunately in people with Crohn’s and ulcerative colitis, there’s a glitch. The immune system starts to attack these digestive bacteria causing an inflammation of the intestines. Now inflammation is a normal response of the immune system, except, in this instance, the inflammation goes on and on and starts to harm the intestines, causing ulcers, intestinal wall thickening and other symptoms.
How would a healthy active 12-year old child react to getting Crohn’s? “You’re an average, normal kid in school” and all of a sudden you start having problems with your digestive system. That’s Sean Ahrens’ story. “It was after a course of antibiotics for an ear-infection, which I got a lot of,” Ahrens remembers. “I’ve lived with Crohn‘s for 14 years now.”
But Ahrens hasn’t taken his diagnosis lying down. At age 26, he is a patient activist and creator of “Crohnology” a web-based patient community with attitude, and a lot of innovation. “I’m building as a new way for patients to share health information online,” Sean relates.
Crohn’s and ulcerative colitis are part of a larger group of disorders called “autoimmune conditions.” With these conditions, the immune system goes out of kilter, attacking the body. Rheumatoid arthritis, lupus, fibromyalgia and multiple schlerosis are just a few of these disorders. “Once diagnosed, I…realized I had a condition to which doctors had no solution. That was really scary.” In fact, 40 million Americans have heard those words from their physicians, “Autoimmune conditions—CATEGORICALLY have no cure.,“ Ahrens states.
Ahrens’s reaction was to look for help outside traditional medicine. “When your doctor doesn’t give you a solution to your problem, you don’t just say OK . You don’t just “trust” that we (conventional medicine) know everything. You search wide and far for things that will work,” Ahrens says. In his quest for answers, he turned to fellow sufferers. “I started the support group because it was connecting people that I found so valuable.”
Ahrens was at University of California-Berkley by then, studying computer science, “I was always really into programming.” At the same time his support group kept growing, “when the group got too big for every patient to remember each other’s health experience— I found it a good idea to build a solution that could scale… I saw things like Facebook, Wikipedia and realized maybe this model could apply to patients sharing knowledge, “ Ahrens says. “Crohnology” is the name of his creation.
Currently “Crohnology” has over 2,400 patients with Crohn’s and colitis from 40 different countries around the world.
So how should people go about finding solutions to what ails them? Ahrens is realistic about what is available on the web, “I still think the web is a bit of a wild west when it comes to health information,” he admits, which is why he’s trying a new approach, “I’m trying to program a better way to share this information — I think it requires a new platform. “
That platform is cutting edge, “The key parts of Crohnology are health-tracking, social network, and treatment knowledge-base. We have an online health tracking interface that lets patients update their health over time. That health tracking can take place on the patient’s mobile phone too. Over a simple web interface, or through SMS (text messaging). patients on Crohnology can also create a treatment “timeline”. That treatment timeline has what treatments (medicines, supplements, diets, or mind & body) taken and when.” In other words, patient can create their own abridged medical record online with current infographics.
Additionally, Ahrens is interested in people meeting people. “Patients can choose to go by just their first name and profile photo. But that’s the lowest you can go. I believe that real name and real photo thing is a requirement for real connection and engagement online.” So anonymity is not an option with Crohnology, “We give patients tools to “meetup” in person, and establish REAL relationships with other patients. This is key,” he believes.
From the data that has already been collected, Ahrens has found that patients who crohnology have 99% of their patient experience behind them, which means a lot of “story” telling vs. tracking. The web is better for constructing data-dense history.”
“My fundamental tenet is that patients are experts in their own experience, and that experience is VASTLY underappreciated.” Ahrens believes that patient advocacy is changing. “I think online communities are the new patient advocacy groups. It’s like the newspaper versus online news. The medium has changed, and so the advocacy needs to move here. If you think about patient advocacy groups, they are still, in a way, this old model of top down information. Patient communities allow for the social revolution that has happened everywhere else on the web to happen to advocacy. Why do we need an intermediary to connect to other patients? There is no need,” Ahrens believes.
If you are worried about patient privacy, Ahrens isn’t. “Patients can identify themselves by just their first name and profile picture. Patients own their data: they can download, port it to another service, or delete it completely at any time. As a result of this, I can literally tell you that crohnology, is the best corpus of patient knowledge that exists on the web. If you have Crohns or colitis, @crohnology is literally the best place you can go to learn about your options.” For people who have heard there’s no way to cure a condition, having that amount of information would be wonderful!
Ahrens’ work is being supported by angel investors like Esther Dyson. There is interest from others. “But what’s great about this is I’m not really interested in the money. Yeah I want to do well, but I’m trying to change medicine. I think that single fact radically changes what we’re able to accomplish. “
Physicians haven’t been quick to embrace patient communities. “I think it’s kind of like asking a teacher to engage in a student discussion group . They would help add insight, but the value is the exchange of peer experience,” Ahrens feels there is a place for physicians in patient communities, “but I’m not waiting around for them to join and get involved. I’m going right to patients to help them now.”
To learn about Sean Ahrens experience with Crohn’s Disease, a video by Larry Chu has been developed and posted here. To learn more about “Crohnology” and to stay abreast of news and updates on the site, add yourself to this site.
For a transcript of the November 29, 2012 twitter chat with Sean Ahrens go here.