Navigating Online Health: Bright Stars and Black Holes

Illustration by Simone Tieber

After New York City graphic designer Beverly McClain, 52, received a diagnosis of breast cancer last fall, she went hunting for information. She bought books. She consulted with doctors and contacted friends who’d been there. And she plunged into an information source that didn’t even exist 20 years ago: the Web.

“When I was first diagnosed,” McClain recalls, “I googled images of [breast] reconstructions. It gave me a huge introduction as to what all this can and will look like. I needed to know.” Later, she sifted through medical studies relating to the effectiveness and side effects of her chemotherapy drugs. McClain even used the Internet to find a stylish short wig to replace one that tangled too easily.

The Internet has thrown open the doors to a whole new universe of information. And today, more Americans than ever—113 million adults, according to a 2006 study by the Pew Internet & American Life Project—say they’ve trolled that universe for answers to their health and medical questions.

Most commonly, these online researchers want to learn about a specific condition that affects them or a loved one, about anything from ways to soothe the effects of poison ivy to how recognize stroke symptoms. In some cases, a patient or relative might “go to school on that topic and become enough of an expert to navigate New England Journal of Medicine abstracts,” says Susannah Fox, author of the Pew study.

A big challenge of Web research is dealing with the sheer volume of information—and its wildly uneven quality. Pew’s study shows that most “e-patients” start with search engines like Google or Yahoo, which toss up thousands of websites, ranked according to the appearance of key words. If you google “controlling asthma,” for example, you’ll get the website of the U.S. Food and Drug Administration, as well as one called mamashealth.com, whose contact information is a link labeled “e-mail Mama,” with no indication of who “Mama” is.

“People have a 50-50 shot at getting good information, and that’s obviously concerning,” says Joshua Seidman, executive director of the nonprofit Center for Information Therapy in Bethesda, Md., which encourages medical professionals to “prescribe” high-quality information.

Even so, horror stories of people coming to harm because of a bum medical tip from the Internet are rare. In fact, three out of four people surveyed by Pew said their online searches left them feeling reassured that they could make appropriate health decisions. That may be because most, like McClain, say they use the Internet not to replace but to supplement their talks with doctors.

“When you ask consumers where would they most like to get information, the first place they say is their doctor,” says Seidman. “But we know that doctors have an average of 16 minutes in every visit to communicate everything they want to communicate. Consumers really feel that they need to find information elsewhere.”

Perhaps the big question is how well patients and doctors connect when it comes to information gleaned from the Web. Indications are there’s room for improvement on that score.

Doctors generally don’t help patients find online material. A 2005 Kaiser Family Foundation survey found that only 3 percent of Americans ages 50 to 64 and 1 percent of those 65 and older said a doctor had ever recommended a health website to them.

That doesn’t stop patients from surfing the Web, and they aren’t shy about sharing their findings. In a 2003 survey published in the Journal of Medical Internet Research, 85 percent of doctors said patients had brought in online material. Most said these research efforts had either a neutral or beneficial effect on quality of care and the doctor-patient relationship.

Yet a minority of doctors said they felt the patients were challenging their authority. Writing in Time magazine in November 2007, one physician touched off a passionate online debate among bloggers and readers by disparaging a patient “Googler” who, he said, “launched into me with a barrage of excruciatingly well-informed questions.” In the ensuing back-and-forth, some faulted arrogant doctors who are unwilling to treat their patients as empowered equals, while others, including some physicians, said they recognized the patient in question as the rude, know-it-all type who refuses to acknowledge a doctor’s expertise.

Doctors are more apt to take kindly to a patient’s online searches if the information is relevant and accurate. It’s frustrating when patients present reams of Internet material that’s not backed up by any credible science, says Toni Brayer, M.D., a San Francisco internist. She’s reluctant to dismiss the information out of hand, yet says reviewing it is time-consuming.

But if a patient brings in research from a reputable source about a particular finding or treatment,  Brayer says, “I think it’s the doctor’s role to sort through it with them and give them accurate information.”