09-13-2007

With a world of information at our fingertips, more of us are turning to the Web for medical facts and advice

By Joe Miller, Staff Writer

Rich Leber started poking around for information after a disturbing trend in his PSA, a marker for prostate cancer, was detected during his annual physical. After a biopsy revealed he had Stage 3 cancer -- meaning the cancer had spread -- he began researching the subject in earnest. And not in the research library at his local university medical school.

"I spent a lot of time on the Web," says Leber, a Chapel Hill resident who was diagnosed at age 54.

Leber wanted all the information -- all the latest information -- he could find, both to help him understand what was wrong and, more important, to help him make informed decisions about his treatment. It was a move driven by necessity: With precious little face time with his doctor, he knew the burden was on him to determine not just his treatment, but his fate.

"Patients' time with physicians has dwindled," says Dr. Wes Lawson, chief medical officer at WakeMed Health & Hospitals in Raleigh.

According to a report by the Pew Internet & American Life Project in 2005, 95 million Americans had turned to the Internet for medical information. In a typical day, the report noted, more Americans went online for medical information than to their doctor's office.

Anecdotal information suggests that number is rising.

"One thing I found surprising," says Leber, who heads a prostate cancer survivors' support group, "is that my surgeon at Duke told me that three years ago maybe 60 percent of his patients were on the Internet. Today, virtually every patient has Internet questions."

"Clearly," notes WakeMed's Lawson, "it can be a real opportunity for patients to learn stuff they might not have time to absorb during their time with the doctor."

Bigger role for patients

In past lives, Bill Allman was a medical writer for U.S. News & World Report and coordinator of the Discovery Channel's various medical Web sites. Today, he's general manager of one of the latest entries in the medical Web site field, the 18-month-old HealthCentral Network (www.HealthCentral.com). He believes three things are driving consumer thirst for online medical information.

"The population is aging and we're starting to see chronic conditions pop up," says Allman.

There's a more pragmatic motivator as well.

"Consumers are being asked to take a bigger role in their insurance," says Allman. With convoluted co-pays and reimbursement programs, "you're required to be much more involved."

And there's the fact that the nature of disease in general has changed. "Most of the diseases that killed our grandparents a couple of generations ago are now under control," Allman says. Or at least can be if you manage them.

"With heart disease, with diabetes, if you're concerned about your health you can make a real tangible impact on your health," he says.

Enter the Internet

And more power to you, says WakeMed's Lawson. If it seems you wind up knowing more about your condition than your doctor does, you may be right.

"Most primary care physicians do not keep up with the latest details in breast [cancer] or other cancer developments," says Lawson. Doctors who aren't specialists simply don't have the time to track everything, he says.

"From a doctor's point of view, it's OK if a patient brings me information more up-to-date than something I know," adds Lawson, who says doctors also rely on the Internet for current information. "A specialist should be worried, but not a GP. I think we've learned to swallow our pride."

A big caveat on medical Web sites, from the medical community, from patients, from the Web sites themselves: Online information should be used to inform, not self-diagnose.

Of the potential for self-diagnosis, Mike Edwards, a spokesman for the North Carolina Medical Society, warns, "Most doctors will tell you it's a safety issue. It's kind of like being your own lawyer."

"No Web site," cautions HealthCentral Network's Allman, "can ever replace the doctor."

And there's this warning from Leber, who has evolved into a savvy consumer of online news.

"Some people say there are 2,000 to 4,000 articles a year just on prostate cancer," cautions Leber. "There's a lot of conflicting information out there."

In 2002, Consumers Union, publisher of Consumer Reports, found several studies reporting that anywhere from 20 percent to 90 percent of online health information was inaccurate. In a ranking of Web sites of its own in 2005, the watchdog group said, "Experts say there's no reason to think that's changed much."

While 61 percent of those surveyed in the Pew report mentioned earlier said the Internet had improved their health care, "2 percent said they had been harmed by online health information."

So how do you ferret out the reliable information?

Rule No. 1, according to Consumer Reports: Find out the site's intent. The site's goal should be clearly stated at the bottom of the home page or by punching an "About us" button. "Be wary," warns the magazine, "if a site encourages you to buy or use a particular product."

Likewise, find out who owns the site: Does it have a vested interest in the information it's sharing?

Another key: Where does the site gets its information?

"We use only vetted sources," says HealthCentral Network's Allman. "Every user should be able to tell exactly where the information comes from. If you can't you shouldn't be on that site."

Medical Web sites can also be divided into two categories: those offering information from the medical establishment and those from what Allman calls "informed patients." That is, people who have been through an illness who are sharing their experience and often providing a forum for others.

"There's power in people telling their stories, power in people hearing stories," says WakeMed's Lawson. "You may get some decent tips," he adds, but the information "is significantly less reliable."

Another consideration: Is the information current?

"Most articles have dates on them," says Leber. "I usually rely on the most recent."

Rich Leber's physician wasn't big on lifestyle changes as part of his cancer treatment. Leber was.

"There's a lot of conjecture about the effectiveness of certain lifestyles improving chances for survival," says Leber. "Most people with cancer," he says, "would rather not be treated. If they can change their lifestyle to avoid treatment, they will."

That was certainly the case with Leber. "I was on testosterone suppression, which has a whole host of side effects: mental fogginess, irritability, muscle mass loss, pain in the joints, lethargy ... ."

He scoured the Internet and scrutinized his Web sources. His research led him to avoid red meats, which are high in Omega-6 fatty acids, which can cause inflammation. He replaced meat with salmon and sardines, which are high in Omega-3 fatty acids, which reduce inflammation. Leber's research led him to believe that lessening the likelihood of inflammation would reduce the likelihood of tumors growing, thus slowing the cancer's progression.

His research also raised the alarm for anything tainted with growth hormones, such as dairy products. He gave those up immediately. Now, his diet is heavy on grains, olive oil, fish and "lots and lots of berries."

Has his Internet-influenced plan made a difference?

Diagnosed with Stage 3 prostate cancer at age 54, Leber is now 58. Though he still agonizes over his periodic PSA tests -- done every three to six months -- he has passed a critical two-year threshold for prostate cancer patients and is approaching another significant milestone at year five. As these thresholds pass, so, too, do the chances that his cancer will flare. For Leber, the power of the Internet has been profound.

"There are a lot of things people can do for themselves," he said.

Reach staff writer Joe Miller at 812-8450 or joe.miller@newsobserver.com.