Could ePatient Networks Become the Superdoctors of the Future?

As technology allows patients to pool their knowledge, can the collective experience of the sick create better care?

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.

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  • Dr. Xylem G.

    Interesting - but why is there absolutely no date anywhere on this page?  That would be *highly* useful to any reader.  Why would you leave off such a fundamental detail about an article..?

  • @drsuzyyhall

    In addition to the benefits that e-mobile health provide for the resourceful patient burdened by chronic medical health issues, my hope is in these modern technologies (social media, e-mobile health, and health care blogging) also becoming useful resources for those seeking answers to common medical/health concerns.

    Time constraints and/or unease at the 'doctor's visit' may limit a patients ability to ask, or get (sometimes even basic) questions amply answered. 80% of internet users head to the web in search of health-related information. As an Ob/Gyn physician active in social/digital media for Women's Health, my aim is in improving access and understanding of basic health information, in an effort to improve health literacy, for the public at large. 


  • Ian M

    As a doctor, I understand the need, but I'm not sure this will be the answer.  It runs into the same problem as any other information on the 'net: quality.  For example, if the site owner doesn't understand the problems with alternative medicine, then I wish his readers the best of luck- they might need it.  Much information on the internet is driven by vested interests where you have little chance of pulling them up for inaccuracy, and I'm curious how he plans to verify his contributors.  The cynical amongst us would suspect big pharma is going to subvert any effort like this fairly quickly to their own profit.

    The art of medicine is not in straightforward cases.  This man appears to have Crohns, with no complications.  Even with that, there are books written on the subject, and more books written on the treatments available.  Once he gets a bit older and has heart disease/ complications from his Crohns, it stops being a "if this, then that" and becomes a weighing of probabilities involving the side effects of doing vs the risk of not doing.

    Computer- aided decision making has been done, and continues to be worked on.  Human decision making is said to be worse than computers once there are more than 7 pieces of information to integrate; however, the reason an experienced doc makes the right decision is they know which 7 pieces to base the decision on, and we aren't there yet with computers.  I'll be interested to see how this gets on, but a structured interview runs the same risk- "to the man with a hammer everything looks like a nail", and on a Crohns questionnaire everything will tend to become Crohns.

  • Anita Hamilton

    Hi Ian, I agree that it is still very early days, and there are many unanswered questions as to how this will all shake out. But as a lay person who has often been frustrated by the existing medical system, I am excited by the possibility of being able to learn and do more without the long wait. Thanks for your insights.