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In Your Health today, we look at the Internet. You already know it's changed the way patients get medical information. It's also changed the way they react with doctors, their families, and even with strangers.
A new report from the Pew Internet and American Life Project studies some of the most avid users of Internet health sites, people with disabilities and illnesses.
NPR's Joseph Shapiro explains.
JOSEPH SHAPIRO: Susannah Fox from the Pew Internet Project wrote the report. She relied on telephone interviews with nearly 3,000 people. But some of her understanding is personal. Years ago, Fox showed her grandmother the Internet - and her grandmother took to it right away. She got on list serves. She instant messaged friends and family. She researched her own health problems.
Last year the grandmother was dying. Fox and other family gathered at the bedside of the woman, who by then was 96 years old.
Ms. SUSANNAH FOX (Associate Director, Pew Internet and American Life Project): I was with her on her last day and my mom and I were on either side of the bed holding her hands, and she had not spoken in about a day, but she was clearly struggling to speak. She was struggling to say something, and my mom leaned in close, and my grandma's last spoken words on Earth were: Erase my e-mail.
SHAPIRO: You're probably wondering what was in the old woman's e-mail. Fox doesn't know. She's a dutiful granddaughter, so she erased the e-mail and reconfigured the computer's hard drive. Fox says it's become common for patients, including more and more older ones like her grandmother, to use Internet research to make health care decisions and for family and even friends to do that Internet research. Fox says now half of online health searches are done on behalf of someone else.
Ms. FOX: When someone gets sick, people aren't just bringing flowers or a hot dish. People are bringing information to the bedside.
SHAPIRO: You might prefer some colorful orchids or a warm tuna casserole, but as online health information becomes more common, Fox says it's changing everyone's role in medicine, including doctors. They were reluctant to give up their position as the first source of information.
Ms. FOX: When we did our first health study in the year 2000, the American Medical Association sent out a press release asking patients to make a New Year's resolution not to go online.
SHAPIRO: But patients wanted more information. They kept going online, often without telling their physicians. So doctors adapted.
Ms. FOX: Things have really changed in the last seven years. 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.
SHAPIRO: The new study shows that the patients most likely to use Internet research to challenge a doctor are those with disabilities and chronic conditions. 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.
Mr. TERRY WILSON (E-Patient): It was sort of scary at first because there was no way to put it in perspective. There was no person I could talk to and 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.
SHAPIRO: But Wilson stayed on the computer, sometimes hiding it from his wife. What he learned helped him, especially when doctors spoke in jargon and gave him bad news. Like when the doctor reading the pathology report said he didn't have as first thought as Stage 2, but Stage 3 kidney cancer.
Mr. WILSON: I was more realistic. I knew what it meant. I knew that my chances of survival had dropped, you know, to probably 60, or somewhere between 50 and 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.
SHAPIRO Since then, his cancer has been reclassified. Now it's worse - a Stage 4. Wilson is scheduled for more surgery this morning. 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 area where he lives, he'd heard of just one other person with his cancer. But there are 1,400 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. Wilson's learned from these other online patients. They give advice. They cheer him on. They share sad times online too.
Mr. WILSON: I think the worst message you can see on there is when somebody says they're going to hospice care. And it will shake up some people. And then ever so often you'll see in there where a particular person has passed away, or his wife or a loved one will be on there and say, you know, this person passed away on this date.
SHAPIRO: Sometimes it's someone who shared their fears with the other cancer patients online, saying things they couldn't express to the friends and family around them.
Mr. WILSON: There was a lady on there who passed away and had two daughters who - and no close relatives, so nobody really knows what's going to happen her daughters, and that was her primary concern.
SHAPIRO: Wilson says he's been a better advocate for his own health because of what he finds online and learns from the other cancer patients. Not everyone does so well.
Dr. ROBERT HAWKINS (University of Wisconsin-Madison): You find contradictory information, you don't know who to believe. It's a very chaotic, tough world out there on the Internet for health.
SHAPIRO: Researcher Robert Hawkins of the University of Wisconsin studies how patients use the Internet, along with colleague Suzanne Pingree.
Dr. SUZANNE PINGREE (University of Wisconsin-Madison): It is reality - chaotic, uncensored, not edited. Who knows what's out there?
SHAPIRO: Pingree and Hawkins are part of a 17-year study called CHESS. One recent experiment was with breast cancer patients. One group was given books and pamphlets to use for research, another got Internet access but was directed to good information vetted by doctors. A third group got open, undirected access to the Internet.
Dr. HAWKINS: We didn't expect the Internet to do so poorly.
SHAPIRO: After a few weeks, the breast cancer patients who had unfiltered Internet access became overwhelmed by all the information they found, and they sort of gave up looking. The researchers checked every Web site the cancer patients went to.
Dr. HAWKINS: We looked at the URLs - every single URL they went to - and the majority weren't even health, 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 in the Internet. They were doing some health, but the health proportion just kept dropping.
Dr. PINGREE: Part of the difficulty is, is how hard it is to get information on the Internet and be sure you can trust it.
SHAPIRO: Still, the researchers conclude that overall the Internet is making health care better. They believe that because one group did do well in their experiment, the ones who used the Internet but who were directed to doctors and other cancer experts, and the support groups of other cancer patients.
Researcher Robert Hawkins says there are more of these directed systems on the Internet today, and the patients who use them are better informed. They're more willing to ask their doctors questions and to use the research they do online to take more responsibility for making choices about the treatment they get.
Joseph Shapiro, NPR News.
AMOS: You can get the latest recommendations on a range of health topics from diet to cold medicines to cancer at npr.org/yourhealth.