Be Careful Turning to the Internet for Health and Medicine Information
By CHERYL CLARK COPLEY NEWS SERVICE
Five years ago, several doctors diagnosed Ed Maguire with a rare form of colon cancer and said nothing could be done. But "in the pit of despair," he logged onto the Internet to learn more.
"I did a Google search and found a support group, which led me to a clinical trial at the National Cancer Institute," the former hospital administrator said.
At his own expense, Maguire flew from San Diego to the federal research center in Bethesda, Md., and was enrolled in a trial of a surgery-chemotherapy regimen, all paid for. Today Maguire, 60, is symptom free.
Without the Internet, "I would be dead, or dying a horrible death," he said.
Kelley Sheehan, 33, had a different experience. When she developed a rash last year, several doctors tried to diagnose her by finding the drug that worked. In the meantime, she went online to do research.
Terms like "staph infection,""fungus""ringworm" and "scabies" presented a smorgasbord of horrors, including diabetes.
"It made me more crazy because I became obsessive," Sheehan said. It turned out she merely had eczema, a common and treatable skin condition.
Their stories represent two sides of Internet health searches: Maguire was lucky and became empowered, while Sheehan became confused and anxious.
Some 93 million Americans, 80 percent of adults using computers, go online each year to learn about health and medicine, according to a 2003 study by the Pew Internet and American Life project. And 38 percent of older adults find it very or somewhat difficult to judge whether what they find there is reliable, according to the Merck Institute of Aging and Health.
As the number and types of information available on the Web grows, so are concerns that there’s just too much out there for the patient to absorb and that the cliche "a little learning is a dangerous thing" often proves true.
"The Internet is a jungle, full of information and full of misinformation. And it’s hard sometimes to tell the difference," said Dr. Joe Scherger, Sheehan’s doctor at the University of California San Diego.
"I often joke that the Internet turns the general public into second-year medical students," which are known for becoming convinced they have every disease they study.
Said Dr. Thomas Kipps, deputy director of Rebecca and John Moores UCSD Cancer Center: "There’s a saying that a man with one watch is sure of the time, but a man with two watches is never sure."
And while Kipps said Americans are generally sophisticated enough to know what’s good and what’s not, he said Web sites offering "alternative" remedies "could distract patients from seeking appropriate care, be expensive, ineffective, and sometimes could be harmful to the patient because of side effects the patient is not aware of."
It surprises many doctors that patients are so ready to believe claims about so many unproven "homeopathic" remedies, yet so skeptical about therapies that are proven with rigorous, lengthy, large and controlled clinical trials.
Web sites will claim "they’re affiliated with universities, and all kinds of other things that make their work sound believable," Scherger said.
Lee Rainie, who directs the nonprofit independent Pew project, thinks access to an unlimited array of information online "has empowered people and their loved ones to be on a much more equal footing with the medical establishment."
And it’s far better than the old way, he said, in which the medical "gatekeeper would give a few minutes of his or her time, and the flow of information was strictly one way."
"(Now) it’s a two-way flow, and patients can provide new and fresh information to their doctors and demand to be co-decision makers."
Because so much is at stake, many respected medical organizations try to steer patients to Web sites of organizations with a reliable history. The site should make it easy for viewers to see how the organization is financed, especially if a pharmaceutical industry or another company stands to make a profit.
Putting studies in context, with easy-to-understand terms, is the goal of three respected health advocacy groups, which last year launched www.patientINFORM_.org.
The site relays users to the American Diabetes Association, the American Heart Association and the American Cancer Society Web sites, where people can learn why some studies were done, what was or wasn’t proved and any inherent bias or limitation.
And in what one Web site spokesman called a "breakthrough" for access to information, the links connect to the actual studies as they were published in leading medical journals, a privilege reserved just for those who pay hundreds of dollars a year in subscription fees.
But beyond leading journals, the vast amount of health information on the Internet varies in quality, accuracy and usefulness.
There are disease-specific listservs, or e-mailing lists, and support groups documenting patient experiences, physician "ask the expert" Web pages, peer-reviewed journal articles on the latest research, coping tips and lists of clinical trials. There’s information on drugs that work and don’t, details on what patients can expect from certain procedures, and all manner of alternatives.
The National Institutes of Health has Web sites for each of 14 institutes and Clinicaltrial.gov, which gives information on all clinical trials funded by the government. PubMed (run by the National Library of Medicine) and the Merck Manual (a medical reference book) are accessible at no charge.
Drug manufacturers also have extensive information on their home pages about the diseases their products have been shown to treat.
That’s how Stephen Lord found an experimental drug touted to prevent post traumatic spinal cord damage and had it airlifted from Washington, D.C., to Children’s Hospital in San Diego, hours after his son Robert appeared paralyzed after falling from a backyard tree.
But seven years later, Lord isn’t so sure that Robert was helped by the drug. Now 16, Robert can walk, but he can’t use his hands and has residual spasticity. The drug was never approved. "The researchers found there was no significant benefit," Lord said.
Lord said he would still advise people "in my situation to go online, but to check whatever information they find with other sources."
For starters, Lord said, don’t rely only on what the doctors tell you.
"As a patient, you have one person to concern yourself with. And 15 minutes with a doctor who has many other patients. He’s not going to necessarily think of all the questions that are appropriate for you to ask. There’s so much information out there, and the idea that one doctor can know it all is very difficult."
But Dr. Stephen Barratt, director of Quackwatch, a nonprofit group that combats medical "fraud, myths, fads and fallacies," says the idea that patients are going to find something their doctor has overlooked "is way overblown. Most patients’ situations are fairly straightforward, and making a diagnosis is fairly simple, with treatments fairly well known."
He offers two practical tips to guard against quackery. First, "never seek or take advice from any Web site that’s involved in the sale of vitamins, minerals, dietary supplements, homeopathic remedies or herbs. If you stay away from those, you will stay away from most sources of bad advice," he said.
And second, look first to Web sites managed by major professional organizations dealing with that specific ailment.
In medicine, doctors say "when hearing hoofbeats, think horses, not zebras," meaning that the most common ailments are the most likely.
Unfortunately, said Dr. Gene "Rusty" Kallenberg of UCSD, many patients are convinced they have a zebra, because they saw it on the Internet. They come in "with something totally on Mars … (with) all these printouts for you to read," he said.
Even so, there is no turning back from the Internet age.
As UCSD’s Scherger summed it up, patients have to be selective in choosing Web sites to trust. And physicians have to be patient to explain, "You need to be open minded, yet skeptical."