Social Networking and Your Health

The digital social networking revolution that has brought us Facebook, YouTube and Twitter has found a new audience: health consumers.

Sites such as DailyStrength.org, MedHelp.org, PatientsLikeMe.com and Trusera.com give people with health conditions new ways to relay information, share personal stories, discuss treatments and chart their progress. They offer discussion boards, chat, photo and video sharing, diet and fitness plans, event listings, product reviews, blogs, wikis (collaborative content), webcasts, podcasts, diagnostic tools and treatment trackers.

Doctors are listening, too. "We have the opportunity to really make changes in health care," says Benjamin Heywood, co-founder and president of PatientsLikeMe. By helping doctors and patients improve diagnosis and treatment, and exploring new therapies quickly, the new sites may even help fight disease, he believes. No wonder CNN called PatientsLikeMe "one of 15 companies that will change the world."

But there are dangers, too. As the old saying goes, a physician who treats himself has a fool for a patient. Just because someone's symptoms sound familiar doesn't mean you have the same condition and should begin seeking the same treatment. And sharing your medical information on the Web may have privacy pitfalls. But by taking a few precautions, you may find the new online health communities beneficial.

What they offer

Some sites are broad, others narrow. At iVillage, for example, you'll find scores of communities ranging from fibromyalgia and compulsive overeating to diabetes and heart disease. Others have a specific focus, such as The Wellness Community (cancer), Depression Tribe, RealMentalHealth and DiabeticConnect. CaringBridge and CarePages help you create your own Web site to connect loved ones during an illness.

Even health agencies and organizations are logging on. The Centers for Disease Control and Prevention (CDC) has a MySpace page to publicize health campaigns that prevent sexually transmitted diseases and promote healthy choices.

Beyond support

Some sites go beyond promoting a sense of community--they give users a place to discuss new research and take a more active role in their own health care. Heywood says that several people came to PatientsLikeMe believing they had one form of depression only to learn they had bipolar disorder; they went to their doctors, got a new diagnosis and received different treatment. One multiple sclerosis patient, after reading about medication doses on the site, gained function after asking his doctor to increase his dosage.

Some site users are even joining together to investigate new treatments. About 200 patients with amyotrophic lateral sclerosis (ALS), for example, are getting prescriptions from their doctors for lithium (which had promising results for ALS in a small study but is not approved for the condition) and using tools on the site to track the drug's effect on them. "It's a very intriguing idea," says Lucie Bruijn, Ph.D., science director of the ALS Association, but "it couldn't stand alone. As a scientist, I think rigor is important in any study." Along with the National Institutes of Health, the ALS Association is launching a multi-year double-blind, placebo-controlled study of lithium to treat ALS.

Avoiding pitfalls

If you have a health condition and want to use one of these sites, do so with your eyes open:

Realize that communicating with others who have similar conditions is no substitute for a discussion with your doctor. Just because a treatment works for one person online doesn't mean it’s right for you.
Beware of unsound medical advice, such as sites that promote eating disorders or oppose vaccinations.
Watch out for sales pitches.
Learn how to guard your privacy, avoid discrimination and prevent identity theft.
Learn to use the Internet safely and elude predators and scams.

Above all, check with your doctor before taking advice. Online health communities can inspire and inform you, but leave diagnosis and treatment to the experts.

More: Here's how to give message boards a try.