There’s something seriously wrong with a health care system that makes patients wait a month or more just to get a doctor’s appointment. Fed up with this information bottleneck all too common in the U.S., a new breed of "ePatients" is crowdsourcing treatment databases online and using mobile technology to access and share health information.
"People are recognizing that they can and need to take an active role in managing their health instead of just sitting by and going to doctor’s appointments," says Sean Ahrens, a leader of the ePatient movement who was diagnosed with the inflammatory condition known as Crohn’s disease at age 12. His startup, Healthy Labs, launched a site called Crohnology last year that lets people with Crohn’s and ulcerative colitis record and share treatments—including medications, dietary changes, even alternative medicine—in a structured database.
"We are building what we think is a new way to practice medicine. We think software is going to supplant the traditional health care systems," says Ahrens, who has received $167,000 in funding from Y Combinator and Start Fund. Unlike Web 1.0 patient forums and message boards, in which useful data is often buried in lengthy, free-form posts, Crohnology presents treatment reviews in a structured format that makes it easy to see how others are managing their condition and how well it’s working. The site’s 2,000 members can also rate via text message how they’re feeling every day on a scale of 1 to 100, in order to create their own personal health graph. In the question and answer area of the site, people pose questions like, "Are you the first person in your family to have Crohn’s or colitis?" and "What has been the greatest gift of having Crohn’s and colitis?"
Other ePatient networks are well under way. MyHealthTeams and DiabetesMine provide similar information-sharing services for people with autism and diabetes, respectively. The personal genomics firm 23andMe, which is seeking FDA approval for its $299 gene screens, lets people learn about health risks they may have inherited. Meanwhile, Healthy Labs plans to launch communities in the future for people with multiple sclerosis and fibromyalgia.
"In 10 years, the idea of going down to your doctor’s office for a visit is going to feel as foreign as going to the video store to get a VHS tape," says Ahrens, who adds, "A doctor’s skill level is pretty highly correlated with the number of cases they have seen. What if you could have a system that has seen a million cases? We are building a superdoctor."
Ahrens and other ePatients will share their stories at the MedicineX conference on September 29 at the Stanford School of Medicine. Sharing their health data, on the other hand, is an ongoing endeavor.