Patients Turn to the Internet for Health Information: NPR

People with disabilities and chronic health conditions are among the most avid users of the Internet for health information.

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Evaluation of medical information online

The Association of Medical Libraries offers guidance on how to find accurate health information on the Internet:

The Internet is changing not only the way patients get medical information, but also the way they interact with doctors, their families, and even strangers.

A new report from the Pew Internet & American Life Project gives insight into some of those changes. It studies people with disabilities and chronic illnesses, who are some of the most avid users of Internet health sites. Fewer of them go online than the general population, probably because many are elderly, a group that is still less likely to use the Internet. But when people with disabilities and chronic conditions use the Internet, they are more likely to search for health information and use that knowledge to ask a doctor, manage pain, or change the way they cope with a chronic condition.

Half of those online searches are done on behalf of someone else, says Susannah Fox of the Pew Internet & American Life Project and author of the new report.

“When someone gets sick, people don’t just bring flowers or a hot plate,” says Fox, “because it’s not always the patient who can handle the investigation. It’s the friends and family around them who can do that investigation of your part.”

Change of roles in medicine

Fox says that as online health information becomes more common, the Internet is changing everyone’s role in medicine. At first, physicians were reluctant to relinquish their position as the leading source of medical information.

“When we did our first health study in 2000,” Fox notes, “the American Medical Association sent out a press release asking patients to make a New Year’s resolution not to go online.”

But patients wanted more information. They went online, often without telling their doctors. So the doctors adapted.

“Things have really changed in the last seven years,” Fox says. “A 2005 study by the National Cancer Institute found that most doctors want to hear from patients about the research they’re doing online. However, e-patients tell us they don’t always talk to a doctor about what they find online. They’re nervous about challenging a doctor.”

The new study shows that the patients most likely to use Internet search to challenge a doctor are those with disabilities and chronic illnesses.

Going online

When Terry Wilson was diagnosed with kidney cancer in July, he went straight to his computer. There was so much information out there that he, at first, was overwhelmed.

“It was a little scary at first,” he says, “because there was no way to put it into perspective. There was no one person I could talk to to say, ‘What is good information?’ He was afraid I’d get too upset about…what I was reading, that I’d feel like I was doomed. So he tried to keep me as far away from it as he could at first.”

But Wilson stayed on the computer, sometimes hiding it from his wife. What he learned helped him, especially when doctors spoke jargon. A doctor who read Wilson’s pathology report said he did not have, as doctors had first thought, a stage 2 cancer; he had stage 3 kidney cancer.

“I knew what it meant,” says Wilson. “I knew my chances of survival had been reduced to, you know, probably 60, somewhere between 50 and 60 percent over five years. I didn’t want my wife to know that I knew that. I had searched. I hadn’t told her.” to her.”

His cancer has since been reclassified. Now it’s worse, a Stage 4.

online support

His wife, Kasey, has been his best partner in dealing with his cancer. But Terry Wilson also got reassurance from an online support group. In the Louisville, Ky., area where he lives, he had heard of another person with his cancer. But there are 1,400 people, across the country, in his online community.

He logs in when he wakes up, before getting the kids ready for school, and then logs back in when he gets home from his job at UPS, where he designs computer systems. She checks in again before going to bed.

Sometimes online cancer patients share fears that they can’t so easily express to the family and friends around them. Wilson has learned from these patients online. They give advice. They cheer him up and also share sad moments online.

“I think the worst message you can see there is when someone says they’re going to go into hospice care,” says Wilson. “And it will shake some people up. And then every once in a while you’ll see where a particular person passed away, or his wife or a loved one will be there and say, you know, this person passed away on this date.”

The challenge of finding useful information

Not everyone does so well when searching for medical information online.

“You find conflicting information. You don’t know who to believe,” says Robert Hawkins of the University of Wisconsin. “It’s a very chaotic and difficult world on the internet about health.”

Hawkins is studying how patients get health care information from the Internet, as part of a 17-year study called the Comprehensive Health Improvement Support System, or CHESS.

A recent experiment involved breast cancer patients. One group was given books and pamphlets to use in the investigation. Another group had access to the Internet and was directed to good information that had been vetted by doctors. A third group obtained open and non-targeted access to the Internet.

The researchers reviewed all websites that cancer patients visited during any period of time. After a few weeks, breast cancer patients who had unfiltered Internet access reduced their use of the Internet for health information.

“We looked at the URLs, every single URL they went to,” explains Hawkins. “And most of them weren’t even health.” [related]. Although these are breast cancer patients, they went shopping, they traveled. They were playing solitaire online. All the other things we all do on the Internet. They were doing some health. But the health ratio kept falling.”

Suzanne Pingree, a colleague of Hawkins at the University of Wisconsin, says cancer patients were overwhelmed by all the information they found.

“Part of the difficulty is how difficult it is to get information on the Internet and be sure you can trust it,” says Pingree.

Still, Hawkins thinks the Internet is improving health care overall. His reason for believing that is because of how well she did for one group in her experiment: those who used the Internet, but who were directed to sites for doctors, cancer experts and support groups.

Hawkins says there are more of these targeted systems on the Internet today. He says that patients who use them are better informed. They are more willing to ask their doctors questions and take more responsibility for making decisions about the treatment they receive.

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