Internet can be helpful partner for patients with rare diseases

Many studies have found that the majority of adults in the U.S. have consulted the Internet for answers to health questions. But a study by the Pew Internet & American Life Project found that the most prolific Internet users are those with rare diseases or those caring for someone with one.

Experts say the study offers lessons to physicians in how the Internet can help gather information and support all patients during difficult times, not just those with rare diseases. It also shows physicians the help and advice patients expect from them, and what care they prefer to seek elsewhere. Although those with rare diseases spend the most time online, Internet use trends are similar for all people and should be considered by physicians when dealing with all patients, experts say.

In the February study "Peer-to-Peer Healthcare," Susannah Fox, associate director of the Pew Internet & American Life Project, wrote that one in five Internet users has gone online to find other people with similar health concerns. More than half of those surveyed who have a rare condition said they turn to others with the same condition for advice and support. For the majority, the interaction takes place online.

"What was once a solitary expedition for one person or one family ... has become a collective pursuit taken on by bands of brothers- and sisters-in-arms who may never meet up in person," Fox wrote.

The report was based on a national telephone survey of 3,001 adults and an online survey of 2,156 members of the National Organization for Rare Disorders who wrote essays about their use of the Internet.

The majority of people surveyed say they most value their physicians' opinions when it comes to medical information, and they view medical advice from peers only as a supplement. But 46% of Internet users said they found the advice of fellow patients and caregivers to be the most helpful when it comes to quick remedies for everyday health issues, compared with 41% who said physicians were the most helpful. The survey found that 46% thought their peers were the most helpful when it came to advice for coping with day-to-day situations, compared with 43% who thought physicians were the most helpful.

Bill McKellin, PhD, a medical anthropologist at the University of British Columbia in Vancouver, said it wasn't surprising to learn that the Internet is used so widely among patients with rare diseases and their caregivers, given the "geographical dispersal of specialists, support groups and other families with the same condition."

Because of this dispersal, physicians also should be networking online, McKellin said. And many do.

McKellin, who is on the board of the Rare Disease Foundation, said the Internet has made it easy for physicians to find colleagues with experience diagnosing and treating certain rare conditions. He said physicians with this experience have become increasingly generous with their time and willingness to help others. The more physicians network on their own, the easier it will be for them to identify sites they can recommend to patients and sites to avoid.

Experts say education can go both ways and that physicians should be open to learning a thing or two from their patients.

"Health professionals retain their role as experts in a certain field or condition, but in these disease communities, each person is an expert in observing the effects of a disease or a treatment on their own or a loved one's body or mind," Fox wrote. She cited a 2007 report by the Assn. of Cancer Online Resources that found information exchange was the primary driver for patients joining online communities, not just emotional support.

Mary Dunkle, vice president of communications for the National Organization for Rare Disorders, said patients can be good sources for leads on a possible diagnosis, and physicians should be willing to consider the leads.

McKellin said physicians should be comfortable with not having all the answers.

"Patients are more comfortable with physicians who admit they don't know the answers," he said.

Many times a primary care physician is better served by focusing on the functional needs of their patients, such as where they can find a social support agency, rather than thinking they have to know everything about a condition, McKellin said. This is especially true for physicians with patients being treated by specialists for a rare disease.

Dunkle said the Internet has empowered patients to take a more active role in their health care.

"I can understand that you might think, 'Here we go again,' when you see somebody walking through the office door clutching some Internet printouts," Dunkle said. "But it's really true that the patients and family members that we work with educate themselves. They are very serious about learning about these diseases, because they have to be their own advocates.

"I would encourage physicians to see it as a partnership -- which it really is."