The Internet is changing not just the way patients get medical information, but the way they interact with doctors, their families, and even with strangers.
A new report from the Pew Internet & American Life Project gives a glimpse of some of that change. It studies people with disabilities and chronic conditions, who are some of the most avid users of Internet health sites. Fewer of them go online than the overall 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 do use the Internet, they are more likely than other users to look up health information and use that knowledge to question 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 aren't just bringing flowers or a hot dish," Fox says, "because it's not always the patient that can handle the research. It's the friends and family who surround them who are able to do that research on their behalf."
Changing Roles in Medicine
Fox says that as online health information becomes more common, the Internet is changing everyone's role in medicine. At first, doctors were reluctant to give up their position as the primary source of medical information.
"When we did our first health study in the year 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 kept going online, often without telling their physicians. So 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 that they're doing online. However, e-patients tell us that 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 research to challenge a doctor are those with disabilities and chronic conditions.
Turning to the Internet
When Terry Wilson was diagnosed with kidney cancer in July, he went straight to his computer. There was so much information out there that, at first, he felt overwhelmed.
"It was sort of scary at first," he says, "because there was no way to put it in perspective. There was no person I could talk to, to say: What's good information? And I didn't look that much, because my wife was afraid I was getting too upset over... what I was reading, that I would feel like I was doomed. And so she tried to keep me away from it as much as she could at first."
But Wilson stayed on the computer, sometimes hiding it from his wife. What he learned helped him, especially when doctors spoke in jargon. A doctor reading Wilson's pathology report said he didn't have — as doctors had first thought — a Stage 2 cancer; he had Stage 3 kidney cancer.
"I knew what it meant," Wilson says. "I knew that my chances of survival had dropped, you know, to probably 60, somewhere between 50 to 60 percent for five years. I didn't want my wife to know that I knew that. I had looked. I hadn't told her."
Since then, his cancer has been reclassified. Now it's worse, a Stage 4.
His wife, Kasey, has been his best partner in facing his cancer. But Terry Wilson has also gotten assurance from an online support group. In the Louisville, Ky., area, where he lives, he had heard of just one other 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 he gets the kids ready for school, then again when he comes home from his job at UPS, where he designs computer systems. He checks in again before he goes to bed.
Sometimes the cancer patients online share fears that they can't so easily express to the family and friends around them. Wilson has learned from these online patients. They give advice. They cheer him on and they share sad times online, too.
"I think the worst message you can see on there is when somebody says they're going to hospice care," Wilson says. "And it will shake up some people. And then every so often, you'll see in there where a particular person passed away, or his wife or a loved one will be on there and say, you know, this person passed away on this date."
The Challenge of Finding Helpful Information
Not everyone does so well when they go online for medical information.
"You find contradictory information. You don't know who to believe," says Robert Hawkins of the University of Wisconsin. "It's a very chaotic, tough world out there on the Internet on health."
Hawkins studies how patients get health care information off the Internet, as part of a 17-year study called Comprehensive Health Enhancement Support System, or CHESS.
One recent experiment involved breast cancer patients. One group was given books and pamphlets to use for research. Another group had access to the Internet, and was directed to good information that had been vetted by doctors. A third group got open, undirected access to the Internet.
The researchers checked every Web site the cancer patients went to for any amount of time. After a few weeks, the breast cancer patients who had unfiltered Internet access cut back on using the Internet for health information.
"We looked at the URLs — every single URL they went to," Hawkins explains. "And the majority weren't even health [related]. Even though these are breast cancer patients, they were going to shopping, they were doing travel. They were playing solitaire online. All the other stuff we all do on the Internet. They were doing some health. But the health proportion kept dropping."
Suzanne Pingree, Hawkins' colleague at the University of Wisconsin, says the cancer patients were overwhelmed by all the information they found.
"Part of the difficulty is how hard it is to get information on the Internet and be sure you can trust it," Pingree says.
Still, Hawkins thinks that, overall, the Internet is making health care better. His reason for believing that is because of how well one group did in their experiment: the ones who used the Internet, but who were directed to sites for doctors, cancer experts and support groups.
Hawkins says there are more of these directed systems on the Internet today. He says the patients who use them are better informed. They're more willing to ask their doctors questions and take more responsibility for making choices about the treatment they get.