Connecting with other patients online can make you healthierBy being an informed patient you can save money, and online medical communities will help you do just that, by putting you in touch with other patients and letting your pool your knowledge. What to do, what to avoid, and will keep you out of the hospital -- it's all there. As reported on Salon, patients suffering from Crohn's disease, like Sean Ahrens, have begun researching, collaborating, and tracking their symptoms -- which can include abdominal pain, vomiting, and diarrhea -- on Crohnology, a site connecting patients like Ahrens with up to 4,210 fellow patients in 66 countries. These patients, who share advice and feedback about Crohn's-specific remedies such as diets, acupuncture, meditation and even do-it-yourself infusions of intestinal parasites, are now forgoing the once-standard practice of waiting weeks or months to set up appointments with their doctors, instead collaborating as a community and receiving useful advice more quickly.
Crohnology, like similar medical Web sites, is part of the growing "e-patient" movement in which patients form online communities, often over social networks such as Facebook, and collaborate in ways that could possibly change America's $3 trillion health-care marketplace.
"Patients sharing data about how they feel, the type of treatments they're using, and how well they're working is a new behavior," said Malay Gandhi, chief strategy officer of Rock Health, a San Francisco incubator for health-care startups that is one of Crohnology's investors. "If you can get consumers to engage in their health for 15 to 30 minutes a day, there's the largest opportunity in
digital health care."
As lofty as it may seem, websites like Crohnology could appreciably change the face of health care in America, the conventional wisdom stating that patients who collaborate and learn from each other tend to get fewer tests, make fewer medical visits and demand a better level of medical care.
"It can lead to better quality, which in many cases will be way more affordable," says Bob Kocher, an oncologist and former adviser to the Obama administration on health policy.
Sean Ahrens, a 28-year-old Web developer who was diagnosed with Crohn's disease at age 12, says that he created the site out of frustration with the available testing, diagnostic, and treatment process he encountered.
"As a patient, it's extremely important to me to get the right information to treat my condition that's unbiased by economics," said Ahrens. "Unfortunately, that's not the world we live in." He built the site "to give the power to patients to study things that weren't currently studied."
Crohn's disease, which currently has no known cause or definitive cure, is typically treated with an array of drugs that can create their own barrage of side effects. Over on the Crohnology web site, patients begin by entering their diets, medical histories, and other information, then update their symptoms and treatments on a regular basis. The data is then presented as readily-accessible graphs. Users get points for answering questionnaires, and can also initiate site-wide studies.
In the case of Colorado-based data analyst Ken Spriggs, a dietary chart on Crohnology showed that beer was the food that triggered the worst symptoms of his Crohn's disease. "It's difficult to tell what you should and shouldn't eat when you have Crohn's," said Spriggs, who was diagnosed with Crohn's in 2001. "I always thought that beer was bad for me, but the survey results gave me a lot of confidence that this was causing a problem."
Spriggs, who stopped taking medication last year, uses the site to fine-tune his dietary restrictions. "The list is pretty long," he noted.
Crohnology is not alone among health care sites. The Endometriosis Research Center focuses on endometriosis -- a gynecological condition in which cells from the lining of the uterus appear and flourish outside the uterine cavity, often causing pain and infertility. Their site also allows patients to share symptoms and treatments, and has proven to be extremely valuable. They also maintain a strong Facebook presence, working to bring together patients and researchers, and together all of their users can push for additional research funding and efforts, especially considering the relatively new awareness of the disease and how to besttreat it.
Finally, while medical community Web sites have become more visible (and more prolific) they do have operating expenses to consider. If you're part of an online medical community or wish to become involved in one, remember that you can chip in via donation systems to help out. The contribution -- especially if it helps someone who couldn't find other information on their illness -- will be extremely valuable.