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Chronic Patients Relying on the Internet for Medical Information, Survey Finds

Some Doctors and Other Professionals Urge Caution

Wayne Bene/ Newsline photo by Rachel Mauro
Wayne Bene of Lutherville, Md., orders his prescription of Copaxone from his laptop computer. (Newsline photo by Rachel Mauro)

Related Links:

The Medical Library Association maintains a page about smart health searches.

The Pew Internet Survey summary, from the 2007 project.

Association of Cancer Online Resources

By Rachel Mauro
Maryland Newsline
Wednesday, Dec. 5, 2007

COLLEGE PARK, Md. – When Jeannie Moran, a clinical social worker from Baltimore, wants to look up medical information for work or personal purposes, she does not restrict herself to 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. “I’ve researched specific kinds of treatments and treatment centers.”

Moran is part of a growing trend of people who are accessing medical information online and e-mailing or networking with others. A survey conducted in 2007 by the Pew Internet & American Life Project in conjunction with the Medical Library Association found that 51 percent of Americans living with a chronic health condition access the Internet and 86 percent of those look for health information online.

The Internet is becoming a vastly utilized resource for people with chronic conditions to research medical information and network with one another, the survey found.

But some doctors and other medical experts caution surfers that all information on the Internet is not 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, a medical librarian from the Medical Library Association. “I think of all of 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.

The survey included anonymous snippets of essays written by members of the Association of Cancer Online Resources.

Susannah Fox, the associate director at the Pew Internet & American Life Project who helped put the survey together, said she was pleased that she could include reactions from ACOR members.

“People were very generous with their time; we had 25 questions ... many of which had open-ended essay opportunities,” Fox said. “Really the most interesting material was in those essays.”

The Internet for Networking

“Having the ability to speak with others who have experienced the same thing is invaluable,” wrote one anonymous ACOR user about using online health resources. “Talking to others who have received the same treatment and are surviving fine 10 to 12 years later really gave me hope.”

Networking over the Web has a broad range of applications, from sending and receiving e-mails to joining a site like MySpace. The 2007 Pew Internet survey found that once active online, users with chronic conditions tend to use the Web for the same purposes as those without medical problems: Roughly 89 percent of users utilize e-mail, but only 16 percent join an online social networking site.

Fox, however, feels certain that the social networking number 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, adding that many blogs now look professional. “So somebody might not actually know they’re looking at a blog, because it is so well designed.”

Wayne Bene, 56, of Lutherville, has frequented the multiple sclerosis online support group, Shared Solutions, which offers “anything you could possibly want to know about Copaxone,” the medication he orders from the Internet. He does not use the Web site to network with other multiple sclerosis patients but 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.

The Internet as Doctor Stand-In

Irdell Iglehart, a Baltimore rheumatologist and assistant professor of medicine at Johns Hopkins University, says some e-patient behavior may arise out of frustration: Because doctors are in short supply, they sometimes take too much time to return patients’ calls, he said.

“They’ll look up symptoms and put in symptoms and see what they might have,” Iglehart said of the 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, who has a musculoskeletal condition, fibromyalgia, called him to confirm something ambiguous she had read over the Internet. The Web 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.”

But e-patients’ reactions to online health information are generally positive, according to data from the 2007 survey; 71 percent feel reassured after using the Web for research, compared to 30 percent who are overwhelmed and 19 percent who are confused.

Iglehart, who confirmed that most of his patients have used the Internet to gather medical information, says he does not have a problem with this “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.

Thirty-six percent of e-patients with chronic conditions use information they have found online to determine whether to see a doctor, according to the data, and 49 percent have spoken to doctors about their findings, according to a 2006 Pew Internet survey on e-health trends.

However, professionals have a lukewarm reception when it comes to taking this Internet 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 cautioned that there is “there is a lot of garbage” on the Internet, especially with advertisements for medical goods, which might contain biases.

Bene said that it is “important to have a good pharmacist to supplement anything” found online.

Searching for Good Information

Bene tends to trust Google searches, as there are very few “screwball sites” that make it onto the first page of a query response, he said.

Fifty-six percent of e-patients begin their searches at search engines, according to the 2007 Pew Internet study. Only 37 percent begin their queries at a health-related site.

This trend has health professionals 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 also works as the executive director at the health sciences and human services library at the University of Maryland, Baltimore. “The challenge is for medical libraries to find a way to connect with the general public.”

One way to connect is for health organizations to build their own Web sites.

The Medical Library Association maintains a page about smart health searches. (See link above.)

Tooey is also a fan of MedlinePlus, a government site that offers a variety of 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.”

As for Google, the Medical Library Association is working with the popular search engine to create Google Health, where sites maintained by health organizations will be tagged to rise to the top of searches.

“I don’t know when it will be available, it’s been kind of building,” said Tooey. “It’s been in beta (development) for at least a year.”

Maryland Newsline's Rachel Mauro can be reached at techgadgets-online@jmail.umd.edu.

Copyright © 2007 University of Maryland Philip Merrill College of Journalism

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