People are swapping medical histories, test results, and trial treatments online. WH goes inside a whole new form of group therapy
BRIGID SWEENEY, September 2010
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.”
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.)
The Drug-Company Connection
The online sharefest is providing medical researchers with a veritable goldmine of information. In fact, PatientsLikeMe makes money by anonymizing its content before selling it to drug companies—with member consent. Buyers receive spreadsheets of patients’ symptoms and drug reactions, and use the info when creating new products. Earlier this year, for example, pharma giant UCB helped PatientsLikeMe start an epilepsy site in order to learn more about what prescriptions might be most popular. PatientsLikeMe also offers users early opportunities to volunteer for pharma-sponsored clinical trials. In effect, the sites are creating a new health-care dynamic: Industry heavyweights pay for access to data that’s not available anywhere else, and in return, patients receive shortcuts to experimental drugs and, hopefully, have a voice in accelerating research. (After Novartis partnered with PatientsLikeMe in 2008 to find participants for a new MS medication study, interest was so huge that the trial was fast-tracked.)
And sometimes members of the virtual health community simply run their own versions of clinical trials. When a Proceedings of the National Academy of Sciences article suggested that lithium—generally used to treat bipolar disorder—might also help control the symptoms of ALS (a.k.a. Lou Gehrig’s disease), 400 PatientsLikeMe members with the disease began taking the drug under the supervision of their respective doctors. Within months, more than 2,000 members—all posting their reactions and blood-test results online—were in on the experiment, creating the world’s first grassroots, patient-driven drug trial. Four traditional clinic-based trials started soon after, and all five studies reached the same disappointing conclusion: Lithium doesn’t help ALS patients. Unlike the professional scientists, however, PatientsLikeMe shared its results right away, and millions of research dollars hadn’t been spent.
The Case for Discretion
Controlling your own health care is heady stuff. But privacy activists warn that the line between patient empowerment and exploitation can be razor thin. Though most sites are open about their partnerships, it’s hard to know whether patient data is really going toward cutting-edge research or being used for targeted marketing efforts, says Jeff Chester, director of the non-profit Center for Digital Democracy. Particularly worrisome, he notes, are “disease awareness” sites like CrohnsAndMe.com, a site that looks like a social networking community but is actually a sponsored marketing tool funded by a pharmaceutical company. Chester points out that health sites always list their drug-company affiliations somewhere, even if it’s not obvious, so do some digging into parent companies through the “About Us” and “Contact Us” links. And, says Chester, always employ healthy skepticism. Even if a marketing site seems helpful, it might minimize information about drug side effects.
Many doctors are also concerned that patients will use these health-sharing sites without the input of their physicians. Quasar Choudhury, M.D., an internist in New York City, oversaw Deena Biengardo’s MS treatment and talked her through the treatment options she found online. But without such sustained doctorpatient contact, he says, misinformation or data overload could be a problem. PatientsLikeMe’s Heywood agrees and stresses you should never use these sites as your sole source of guidance.
Still, Choudhury is impressed by the quality of research Deena was able to find online—and even more impressed by the psychological boost she got from the site’s social network. “The difference was unbelievable,” he says. “Her life changed far more dramatically than it would have through my treatment alone.”
These sites go several steps beyond the old online model.
1 PatientsLikeMe.com Founded by three MIT engineers in 2004. The site’s largest communities are dedicated to ALS, epilepsy, and fibromyalgia.
2 HealthCentral.com A solid general URL with more than 35 disease communities, plus a symptom checker that allows you to pinpoint your pain on an illustrated body diagram.
3 ACOR.org The Association of Cancer Online Resources’ site hosts OncoChat.org, a real-time chat room that lets cancer patients and survivors exchange information and support.
4 Keas.com This tracking site helps users set healthmanagement goals, especially those related to weight, depression, and diabetes. It also sends out test and checkup reminders, breaks down lab results, and runs Q&A’s in its community section.
5 CureTogether.com The two-year-old community website’s main focus is tracking and maintaining members’ health data, especially for conditions that affect women, such as endometriosis, vulvodynia, and irritable bowel syndrome.
Original article at http://www.womenshealthmag.com/health/medical-websites