Heathy Info Plus: Feel Sick? Click Here

Deena Biengardo, 26, is always on the go. She's an energetic, slim New Yorker who walks just about everywhere. You'd never guess she was recently 70 pounds overweight or that she regularly pricks herself with a giant needle full of meds—or that she has multiple sclerosis (MS), an autoimmune disease that affects some 400,000 Americans. Thanks to her laptop, she has found what she calls her "miracle cure" and claims to show few symptoms.

After her diagnosis in 2005, Deena took to Google and landed at PatientsLikeMe.com, a new type of health site that lets members share very specific information about symptoms and treatments. There, she networked with other MS patients, who not only buoyed her emotionally but also offered the kind of advice her everrotating cast of neurologists couldn't: concrete tips on managing prescription side effects, from people who had real-life experience with the illness. "It was then that I realized I could take control," she says of reading other patients' success stories, especially those that involved managing the disease through exercise and diet adjustments. Inspired, Deena started to slim down. "The site changed the way I view my future," she says.

The Sharing Shift
Searching the Internet for medical info is hardly new; a recent Pew Research Center study found that 61 percent of Americans do it. But millions of women like Deena are taking their online activity to new levels. By flocking to free sites like PatientsLikeMe and HealthCentral.com, they're helping to grow Facebook-style social networking communities—but instead of trading birthday wishes, they're posting their private medical histories, tracking daily pain levels, powwowing about Rx reactions, and even volunteering to be guinea pigs for experimental drugs. And by openly sharing the kind of intimate medical details people used to shield, they're creating huge health databases.

Yup, it's Health 2.0, where medicine meets crowd sourcing. The idea? Sharing is good. Like, really good. A recent California HealthCare Foundation report confirmed that when patients swap health stories, their collective wisdom yields clinical insights far better than what they'd learn in a doc's office. That's no surprise to Thomas Goetz, author of The Decision Tree: Taking Control of Your Health in the New Era of Personalized Medicine. He points to a larger societal shift toward sharing—most of us now shrug at typing in credit card numbers or going viral with our relationship statuses, so why not divulge the results of a blood test?—and likens health info to currency. Publicly tracking your medical details online is like managing an investment account, says Goetz. Sure, it's riskier than a passive approach, but the rewards are exponentially greater. Ben Heywood, cofounder of PatientsLikeMe, puts it this way: "People are realizing that not sharing might be getting in the way of deeper understanding, and that privacy might actually be bad for your health."

Exploding Communities
Alexandra Carmichael, 34, is on the forefront of user-generated health care. Throughout her twenties, the Mountain View, California-based entrepreneur lived with searing vaginal pain that made having sex nearly impossible. She bounced from gyno to gyno, eventually finding relief for her condition, called vulvodynia, through hormone replacement therapy. Frustrated that it took her 10 years to get there—and that she could never find good enough info online—Alexandra in 2008 launched CureTogether.com, a free site that lets people share, review, and track their illnesses and treatments, informing one another about which factors, from diet to menstrual cycles to sleep patterns, most affect their symptoms.

At its inception two years ago, CureTogether focused on three illnesses. But users bombarded Alexandra with requests for more disease communities, and today the site holds data on about 500 conditions, everything from bipolar disorder to restless leg syndrome. And PatientsLikeMe has doubled in size in the past year, with the seemingly achievable goal of having 1 million members within the next two years. HealthCentral, which combines social networking with articles like those on WebMD.com, attracts some 13 million visitors a month. (WebMD, meanwhile, is still the most visited health site. Earlier this year, it launched its own networking forum, WebMD Health Exchange.)

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Last updated: September 11, 2010 Issue date: September 2010