Sifting Through Online Medical Jumble

[Guest guest]

January 28, 2003

Sifting Through the Online Medical Jumble

By RANDI HUTTER EPSTEIN

hose who have combed the Internet for mainstream medical advice have, no doubt, been barraged with far more information than they could possibly want: scientific articles and pseudoscience; anecdotes of personal triumphs and tragedies; references to books and videos; and, of course, online support groups.

Few people are qualified to distinguish between the truths and half-truths that cascade from search engines or to sift hype from reality.

Now there are a few services that, for a fee, promise to take over that work, to weed through the deluge of information, selecting effective treatments and trashing fakes.

The conundrum is no longer evaluating health advice, but evaluating the evaluators. In other words, how trustworthy are the paid-for-hire truth seekers?

Those who run the small companies say they spare patients the drudgery of computer searching. They say that they are savvier than the average person about exploring health-related sites and that they have greater access to online search engines that provide scientific articles.

For about $150 to $500, they gather information, hunt for clinical trials and deliver a docket of information in a week. In some cases, the services even interview the investigators or try to secure a spot in an experimental study for the customer.

Satisfied customers say the money is well spent. Others say they obtained information without paying. Many physicians not familiar with the services were skeptical. They worried about bias and inaccuracy.

"Like everything else online there are probably some people doing a good job and others who are not and the patient may not be able to discern the difference between the two," said Dr. Wende Logan-Young, a radiologist and the director of the Wende Breast Clinic in Rochester.

Bud Hyde, a psychotherapist in Little Rock, Ark., said Health Resource at www.thehealthresource.com/ confirmed that he needed surgery and guided him to a leading Midwest center.

"I had atrial fibrillation," or irregular heartbeat, "for nine years and was on all of these toxic meds," Mr. Hyde said. "I got to the place where the medications weren't helping and I was told I was going to have to go to the next one up the chain, and it had two side effects. You could turn blue or it could tear your lungs out. They were very rare side effects. But the other downside was that over time, I would be slowly becoming more debilitated, and I'm a very active, physical person.

"So I said, `I'm going to research this.' And I did on the computer, and interestingly I came up with this new procedure. But I wanted to know more."

The company confirmed that the procedure was new and legitimate, and it recommended a surgeon.

The services do not aim to replace medical consultations. They intend to provide easy-to-digest information about particular ailments, information that patients might expect from a long chat with a physician. Researchers say because they are weeding through the Internet day in and day out, they are more apt to stay up to date on the latest remedies compared to the average physician, who is busy tending to sick people. Some of the companies say that some of their clients are doctors.

Finding a company is not easy. There are no online lists, and there are no more than 10 search businesses. The founders say that they are listed under the disease or that customers find them through word of mouth.

Each company says it has its own forte. One has physicians on its staff. Another focuses on complementary remedies. A few cover just cancer. Some have ready-made dossiers, and others start from scratch, selling individually tailored information.

Oncologists said that patients should investigate the qualifications of the searchers and ask whether they received money from drug companies or had particular biases. Another idea is to request sample information packets.

A few companies were founded by patients who discovered that they had a knack for retrieving medical information. Health Resource was founded in 1984 by Jan Guthrie, a former librarian and a survivor of ovarian cancer. She and a research team produce 15 reports a week, giving customers finished reports in three days.

Schine founded Schine On-line at www.findcure.com after battling leukemia. "I can focus very specifically on the type of cancer and limit the search to the latest treatments," Mr. Schine said. When his cancer was diagnosed, he recalled, he "thought there was this magic pipeline, and if there was a new treatment every doctor would hear about it."

But it did not work that way. "My ax to grind is telling people that they should know all the options," he said.

The Moss Reports, an enterprise at www.cancerdecisions.com, was founded by Ralph W. Moss, author of self-published books like "The Cancer Industry: The Classic Exposé on the Cancer Establishment." Mr. Moss said he did not favor complementary treatments.

"I think all treatments should be looked at critically," he said, "and there should be a level playing field. Ultimately, we are focused on the bottom line, patient benefit, longevity and cure, if possible." He sells ready-made reports about cancer.

Cancer Advisors is staffed by board-certified oncologists at www.canceradvisors.org. It aims to match patients with the most effective clinical trials. It was founded by Albert Sebag, a lawyer and a chemist who had helped a family friend find and enroll in a clinical trial when she had metastatic colon cancer.

Dr. Jack Zweig, an Internet surfer at the site, is an oncologist with a practice in New York. "We evaluate studies and assess them to see how appropriate and effective they are," he said. "You digest the information and give patients easy-to-read reports."

Dr. Zweig said he was not liable because patients were not under his direct care. Some customers are other oncologists.

Debbie Armstrong of City, Calif., said she turned to Cancer Advisors when her husband was considering enrolling in his third cancer trial. He had glioblastoma, a brain tumor.

"It's true you can do this for yourself," Mrs. Armstrong said. "But it's a matter of sorting through and making decisions. I needed advice about one particular clinical trial. They provided me with peace of mind."

Dr. Alter, a medical oncologist at the Cancer Center at Hackensack University Medical Center in Hackensack, N.J., had not heard about the services but said a good company could point patients in the right direction, helping them make decisions.

Dr. Alter said he, too, worried about bias, particularly if a Web business received money from pharmaceutical companies.

Sylvia Nachtigall, whose husband died of prostate cancer, said she would not pay for online services because she was able to obtain more than enough information online free.

"The whole concept is great if the people doing it are honest and not taking any kind of kickback," Dr. Logan-Young, the radiologist, added. "How do you know they are not paid to select certain articles over others? There is plenty of potential for problems."

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