By RACHEL MAURO, Maryland Newsline
COLLEGE PARK - When clinical social worker Jeannie Moran wants to look up medical information for work or for herself, she does not just stick with the medical journals. She also looks online.
"I've researched for symptoms or illnesses for family members, for myself, and I've researched doctors' biographies," said Moran, 57, of Baltimore. "I've researched specific kinds of treatments and treatment centers."
Moran is among a growing trend of people who access medical information online and e-mail or network with others. A 2007 survey by the Pew Internet and American Life Project, with the Medical Library Association, found that 51 percent of Americans with a chronic health condition access the Internet and 86 percent of those look for health information online.
But some experts caution that not all Internet information is sound, and search results may be confusing.
"I've gone to Google and searched for a health condition only to have millions of things come back to me," said M.J. Tooey, of the Medical Library Association.
Tooey thinks of all "the millions of Americans they talk about in this report who go on the Web and find information that might come from" an unreliable source.
But going online "to speak with others who have experienced the same thing is invaluable," wrote one member of the Association of Cancer Online Resources in the survey. "Talking to others who have received the same treatment and are surviving fine 10 to 12 years later really gave me hope."
The survey included parts of anonymous ACOR members' essays.
"We had 25 questions . . . many of which had open-ended essay opportunities" for ACOR members, said Susannah Fox, the Pew Center associate director who helped put the survey together. "Really the most interesting material was in those essays."
Pew found that once active online, users with chronic health conditions tend to use the Web for the same things as everybody else: Roughly 89 percent use e-mail, but only 16 percent join an online social networking site.
Fox feels certain the social networking numbers will go up.
"There's less and less of a clear difference between a classic Web site and a social networking site or a blog," she said. Many blogs now look so professional and well-designed that "somebody might not actually know they're looking at a blog," she said.
Wayne Bene, 56, of Lutherville, does not network with other patients at Shared Solutions, an online multiple sclerosis support group that offers "anything you could possibly want to know about Copaxone," the medication he orders from the Internet. He does use the site to talk with the drug manufacturer to make certain he has all the resources he needs.
"If I need anything, I can just call them," he said.
Irdell Iglehart, a Baltimore rheumatologist and assistant professor of medicine at Johns Hopkins University, says some e-patients may arise out of frustration: With doctors in short supply, they sometimes take too long to return patients' calls.
"They'll look up symptoms and put in symptoms and see what they might have," Iglehart said of surfers.
Unfortunately, he said, they "usually they get the wrong answer. They look up skin fungus and think they have Lyme disease. The Internet will often over-diagnose."
Gary J. Kerkzliet, a physician at Union Memorial Hospital in Baltimore, said his own mother called him about something she found on the Internet that she thought was related to her musculoskeletal condition, fibromyalgia. But the site was for a medication for "fibro flairs, something I've never heard of before," said Kerkzliet.
"It's always helpful to know where you got the information from," he said.
But the Pew survey said patients' reactions to online health information are generally positive: 71 percent were reassured after doing Web research.
Iglehart said most of his patients have used the Internet to get medical information and he does not have a problem with it "as long as they take it with a grain of salt and consult me.
"I guess maybe I'm patting myself on the back, but I'm the Internet. I'm Google," he said of his medical expertise.
A 2006 Pew survey on e-health trends found that 49 percent of patients with chronic conditions have spoken to their doctors about information they found online. But professionals do not always take Web information seriously.
"Sometimes you get this rolling-of-the-eye response," said Moran. "I think many physicians are concerned that patients are formulating opinions based on fragments of information or general pieces of information and then applying it to their specific situation."
Iglehart warned that there is "there is a lot of garbage" on the Web, especially with medical advertisements, which might contain biases. Bene said it is "important to have a good pharmacist to supplement anything" found online.
Bene tends to trust Google, which he said lets very few "screwball sites" to the first page of a search response.
Fifty-six percent of e-patients start with search engines, according to the 2007 Pew study, and only 37 percent begin at a health-related site. That has experts concerned.
Tooey worries "that people don't know how to judge quality.
"That's where I think medical librarians are very helpful," said Tooey, who is also executive director of the University of Maryland, Baltimore, health sciences and human services library. "The challenge is for medical libraries to find a way to connect with the general public."
One way is for health organizations to build their own sites. The Medical Library Association maintains a page about smart health searches (http://www.mlanet.org/resources/consumr_index.html).
Tooey is a fan of MedlinePlus, a government site that offers medical information from general research to local services.
"I found out about exercise, diet, complementary medical treatment. Even for me, this was great information," said Tooey, who has arthritis. "The challenge is how to get the information (about reliable sites) out."
The Medical Library Association is working with Google on Google Health, where health organizations' sites will be tagged to rise to the top of searches.
"I don't know when it will be available," said Tooey. "It's been in beta (development) for at least a year."
-- Distributed by Capital News Service.