It pays to have back-up when serious illness strikes, judging from the legions of patients who turn to Web merchants selling customized medical information about specialists, clinical trials, and treatments. But the true value of such services, which cost $75 to $550 or more, isn’t clear.
Among the believers is Edward Barr, 71, a food manufacturer in Toronto, Ontario. Lying in intensive care after a heart attack in November 2001, Barr couldn’t go online for “the whole ball of wax,” as he puts it, about cardiac disease and related therapies.
So he contacted The Health Resource Inc., an information brokerage in Conway, Arkansas. The information faxed to him at the hospital about current heart care didn’t jibe with what his Canadian doctors were saying — that his condition was “minor,” an angiogram was unnecessary, and he should go home and wait three to six months for a follow-up exam.
Additional information from The Health Resource prompted Barr to travel in January 2002 to a clinic near Ft. Lauderdale, Florida, undergo an angiogram and angioplasty, and have two stents — tiny metal scaffolds — surgically inserted into a blocked coronary artery.
Today, his health restored, he’s glad he did. Even if information from the company — which cost him about $300 — had duplicated what doctors in Toronto were telling him, he says, the reassurance alone would have been worth it.
Skeptics, however, raise a red flag when it comes to these online vendors, whose offerings vary. Some firms throw in — or even emphasize — information about unproven alternative therapies; others focus just on cancer, a subject fraught with many treatment uncertainties and outright fraud. Moreover, few of the outlets are operated by medical professionals.
Dr. Stephen Barrett, a retired psychiatrist in Allentown, Pennsylvania, who has written 49 books and probes dubious medical claims as founder and editor of Quackwatch, argues that even a service as seemingly basic as rounding up peer-reviewed journal articles is suspect.
For one thing, he says, laymen are filtering complex articles for other laymen — akin to the blind leading the blind. He notes, too, that the information may be stale.
“There’s really no reason to believe that the scientific literature is going to be the most up-to-date source,” says Barrett. “There’s a lag between the time something is discovered and published. The people in the best position to know [about cutting-edge therapies] are experts in the field who are aware of unpublished studies and may even have their own data.”
Even with extensive research, the choices may be unclear because science doesn’t really have the answer or because other factors are coming into play, such as the level of confidence you have in your doctors and your own philosophy about medical care.
Operators of online search firms don’t claim to be medical professionals and typically make it clear they can’t legally offer clinical advice. Indeed, some think of themselves as little more than medical librarians who, because of their own battle with life-threatening disease, have a talent for locating resources.
Hard to keep up with advances
Jan Guthrie founded The Health Resource in 1984 after she was diagnosed with ovarian cancer. Guthrie says her service and other search firms help patients who are suddenly overwhelmed by illness and find themselves too emotionally shaken, too distracted, or, like Barr, too sick to track down information themselves.
“I talked with a man this morning who had just been diagnosed with esophageal cancer,” Guthrie says. “And he said, ‘Jan, I don’t know why, but I’m just paralyzed by this diagnosis.'”
Most patients assume their doctor will present them with a range of treatment choices and the information they need. But caring for medical illnesses is more complex than it used to be, and the health care system has not kept up as well as it should. The system was originally designed to deal mostly with emergencies and limited treatment options. Now doctors are treating more and more chronic illnesses with ever-more complex treatments and options. This comes at a time when doctors are given less time to spend with patients than ever before. So many don’t have time to research the full spectrum of options available to each patient, says Gary Schine, 51. He launched Schine On-Line Services Inc. after he was diagnosed with hairy-cell leukemia 13 years ago.
Schine’s doctor told him there was no cure for his disease. But Schine, undaunted, found an article in the New England Journal of Medicine reporting that 11 of 12 people undergoing an experimental therapy for his type of cancer were in complete remission. He, too, got the treatment and is healthy again.
“It’s not rocket science what I’m doing here,” Schine says. “If I could create a law, it would be that when a physician diagnoses a life-threatening illness, he’s responsible for presenting the patient with the latest developments” in treating that disease.
It may not be rocket science, but the medical community has concerns about data compiled by non-experts. Michael S. Brown, an e-health expert and former marketing director of the Institute for New Media and Communications Research in Watertown, Massachusetts, worries that newly diagnosed, desperate patients may turn to medical Web merchants and have regrets later.
“Sometimes, in the heat of this, you tend to put aside your good sense because you just want answers. And you want them fairly quickly,” Brown says.
Still, many physicians support patients doing their own research or paying someone to do it for them, as long as the information is a supplement — not a substitute — for the advice of an experienced doctor.
One should be especially cautious, according to Quackwatch’s Barrett, about vendors that provide a mix of information about both mainstream and unproven alternative therapies. The latter are so unreliable, in his view, that just including them in a patient report casts suspicion on a search firm’s judgment.
But others argue just as forcefully that patients have the right to information on alternative treatments — as long as they’re aware they may not have undergone scientific scrutiny. After all, it’s the patient who must ultimately decide.
Interview with Edward Barr, heart patient
Interview with Dr. Stephen Barrett, retired psychiatrist and founder, Quackwatch.com
Interview with Jan Guthrie, founder, The Health Resource
Interview with Gary Schine, founder, Schine On-Line Services Inc.
Interview with Michael S. Brown, former marketing director, Institute for New Media and Communications Research.