Patients online … making self-diagnoses … exchanging clinical information … what’s this world coming to? That’s not an exaggeration when compared to the way many physicians initially reacted to the advent of online health-focused patient Web exchanges about a decade ago. “When I first started off with this site [DailyStrength.org], I had the same fears that a lot of other physicians had; that people would be on these sites and exchanging misinformation,” recalls Sharon Orrange, MD, an assistant professor of medicine at the University of Southern California and a practicing internist. “Even when I joined as a medical advisor I was a little leery of it.”
Patients online … making self-diagnoses … exchanging clinical information … what’s this world coming to?
That’s not an exaggeration when compared to the way many physicians initially reacted to the advent of online health-focused patient Web exchanges about a decade ago. “When I first started off with this site [DailyStrength.org], I had the same fears that a lot of other physicians had; that people would be on these sites and exchanging misinformation,” recalls Sharon Orrange, MD, an assistant professor of medicine at the University of Southern California and a practicing internist. “Even when I joined as a medical advisor I was a little leery of it.”
Those fears haven’t completely melted away, but they’re close, as physicians—along with the millions of patients who regularly rely on these sites—have come to recognize their value.
Ten years ago, Dr. Sharon Langshur and her husband, Eric, discovered that their 5-day old son, Matthew, was born without a left ventricle in his heart and needed surgery. It was their first opportunity to use the Internet as a communication tool. “I remember thinking, ‘Who really uses the Internet that much?’” explains Langshur. But when her brother created a web page for them, it opened the door to a world of people who were only too eager to lend their support and prayers. Langshur and her husband looked at each other and said, “This is one of the best uses of the Internet we’ve ever seen.”
The couple created CarePages.com, and since then, more than three million members have used its free service to create personal web pages, join discussions, and more easily interact with others facing similar challenges.
Sites like CarePages.org, DailyStrength.org, StopAfib.org, and more recently PatientsLikeMe.com, are providing patients with virtual support groups and, according to Orrange, “are working out a lot better than any of us thought they would.” About 10 percent of patient exchange involves hard medical facts. The remaining 90 percent focuses on sharing information like “what was it like when your hair was falling out? What are these medication side effects like?” Orrange explains. “It’s exactly what we want patients to get from others who are going through the same thing. We [doctors] can’t provide that.”
Opportunities for physicians
At the same time that patients educate one another, physicians can learn from logging on to these web exchanges as well. Mellanie True Hills, founder and CEO of StopAfib.org, an atrial fibrillation patient resource, says she considers the site a bridge between patients and doctors. Because when it comes to afib, “Doctors don’t get it.”
“One patient said it best a while back,” recalls Hills. “If she had one wish, it would be to be cured of her afib. If she had two wishes, the second would be that every doctor could experience afib just once, because it would totally change the way they practice with their patients.” Doctors can get a free listing or a featured listing—which helps defer the site’s operating costs—where they can talk about what is unique about the services they provide. “It helps the patient know more about them and develop a comfort level to seek them out for a consultation.”
Orrange, who is now very active in the women’s health support groups on DailyStrength.org, has become a big believer in the benefits afforded by patient web exchanges. “I think we have to accept that social networks, whether real or virtual, are going to help us out as physicians,” she explains. “I think we have to embrace them.”
Langshur agrees. She explains that the birth of the Internet has meant that the same information is available to everybody with access to a computer. Physicians have an opportunity to help patients by directing them to sites that they know are credible and have confirmed information. “We have partnerships with more than 700 hospitals who have realized the same thing,” Langshur says. “If you want to differentiate yourself in an increasingly competitive market, one way to do it that is very meaningful to patients and their families is via the offer of emotional support.”
Studies Offer Support
Langshur says that emotional support is extremely valuable as a healing tool, and points to a recent study published in the Journal of the American College of Surgeons that quantitatively confirmed as much. The study looked at patients pre-op, measured the size of their social support network and the strength of that network, and looked at the outcomes for those patients. Researchers found that there was a direct correlation between those patients with a closer and larger social network and good outcomes.
“That’s an amazing thing,” says Langshur, “and enormously valuable, because we know that illness is very isolating. People really want to talk to other people who have gone through the same situation.”
Ed Rabinowitz is a veteran healthcare reporter and writer. He welcomes comments at firstname.lastname@example.org.