New York Times article. LONG
Myers'
• Shark cartilage "appears to work through the activity of at least four
complex proteins contained in the cartilage. The proteins appear to inhibit
the development of new blood capillaries needed to feed a fast-growing
tumor. Without a feeding network, a tumor can't grow."
• "Shark cartilage is worthless against cancer."
Both statements appear on the World Wide Web, amid dozens of sites turned up
in an Internet search for references to shark cartilage, a diet supplement
trumpeted as a remedy for breast and prostate cancer. And while the second
statement is clearly closer to the truth, at least as documented by clinical
research, the first is among scores of misleading, inaccurate "facts" about
cancer and other diseases -- references accessible in moments to anyone with
a computer and an Internet connection.
The misinformation does not stop at unproven remedies. As a team of
researchers from the University of Michigan reported this month in the
journal Cancer, the Internet is rife with basic, and perhaps
life-threatening, factual errors.
In their study, the researchers analyzed 371 Web sites with references to
Ewing sarcoma, an uncommon bone cancer that typically afflicts children and
young adults. The search revealed errors that the authors called "shocking,"
with about a third of the references lacking any indication that the
information had been deemed accurate by independent experts through the
time-honored process of peer review.
Six percent of the Web pages that were not peer-reviewed contained "clearly
erroneous" information. In other cases, the information was seriously
outdated or misleading.
One such site, operated by the Encyclopaedia Britannica, said Ewing sarcoma
"is particularly destructive, metastasizes early and has a mortality rate of
about 95 percent even with radical therapy," when in fact it is among the
most curable of cancers, with a survival rate of 70 to 75 percent; the
encyclopedia corrected the statement, a spokesman said, after the error was
pointed out.
In their report the team, led by Dr. J. Sybil Biermann, called the Internet
the great equalizer and added: "Experts, specialists, authorities,
professionals, alternative therapy promoters, interested lay people,
charlatans and hucksters all may set up sites."
In an interview, Dr. Biermann said: "There are some excellent reputable
sites but also some that are highly misleading. No one screens the claims
people make on the Web, and I've seen sites claiming spurious cures for a
variety of cancers. What you read on the Internet could end up killing you,
if you believe it."
The researchers outlined the potential hazards of such misinformation:
"The parents of a child diagnosed with Ewing sarcoma may be devastated by a
finding on the Internet of a 95 percent mortality rate, and may even be
driven to consider refusing therapy if they are convinced that conventional
medical science (even 'radical' therapy) yields such a dismal prognosis.
Alternatively, they may believe that an organization that lists an 85
percent cure rate may provide better therapy than one that posts a cure rate
more in line with the peer-reviewed published trials."
As the team discovered when it used four search engines to find references
to Ewing sarcoma: "Attempts to access medical information from the Internet
may be very cumbersome and time-consuming. Patients may spend hours in
fruitless, frustrating searches, finding a few helpful sites but sifting
through many dead ends."
Dr. Biermann suggested that the amount of erroneous information the team
found might have been higher if the study had focused on a more common
disease.
Available sites for more common cancers can reach tens of thousands. For
breast cancer alone, for example, there are 60,548 Web pages, according to
Dr. Donald Earl Henson of the National Cancer Institute, who wrote an
editorial about the Michigan report.
"Although it has enormous potential to educate the public and to comfort
individual patients, the Internet in some cases may actually lead to adverse
medical care by spreading misleading or even fraudulent information," Dr.
Henson wrote. "On the Internet, there is no separation of peer-reviewed,
scientifically proven conclusions from anecdotal information or personal
reflections."
When the information obtained from the Internet conflicts with
recommendations from physicians, patients may become confused and uncertain,
resulting in a delay in treatment or inappropriate choice of therapies, he
said. And when information found on the Internet contradicts what patients
learn from their physicians, they may lose confidence in their doctors,
which could compromise their willingness to accept and endure necessary
treatments, the Michigan team suggested.
This is by no means the first time that a significant percentage of Web
sites dealing with health matters has been found to be filled with
inaccuracies. Last year, for example, pediatric specialists from Ohio State
University College of Medicine and Public Health examined 60 Web sites
established by major medical institutions, medical schools and hospitals and
found that only 20 percent of them gave up-to-date advice for treating
childhood diarrhea. The remaining 80 percent of sites had inaccurate
information, with advice that conflicted with the authoritative guidelines
established by the American Academy of Pediatrics.
Dr. H. Juhling McClung, lead author of the report in the journal Pediatrics,
said that although the institutions promulgating this information were
"among our finest, a lot of it was garbage, just garbage" and "no more
accurate than information from Web sites sponsored by herbalists and
chiropractors."
Jeanne C. Ryer, the author of "Health Net" (Wiley, 1997), a guide to on-line
medical information, said "unregulated, unedited information" on the
Internet could be "a recipe for disaster."
"It can be confusing, controversial, inaccurate, ill-advised, even deadly if
the advice is followed," Ms. Ryer added.
Dr. Maurie Markman, chairman of hematology and medical oncology at the
Cleveland Clinic Cancer Center, says that cancer information on the Internet
"has the potential to cause tremendous harm through erroneous, misleading
and deceptive information."
He cited the case of a woman with ovarian cancer whose husband did an
exhaustive on-line search for possible treatments, examining nearly 200
experimental regimens worldwide. The husband concluded that intensive
therapy with a combination of drugs would be better for his wife than the
treatment she was receiving, even though her doctors thought she was not
strong enough to withstand a more intensive regimen.
In an editorial on the benefits and risks of cancer information on the
Internet published last year in the Cleveland Clinic Journal of Medicine,
Dr. Markman wrote, "Of greatest concern is the complete lack of quality
control for any information or advice provided. Well-recognized and highly
respected health care organizations and experts have no more inherent
authority when viewed on a computer screen than a misinformed member of the
public attempting to help others, or than individuals or groups engaged in
health care fraud."
Despite their findings on Ewing sarcoma, Dr. Biermann and colleagues noted
that "the Internet can be a powerful, positive partner to the health care
provider in patient education."
They added, "Better health care results when patients are more involved with
their treatment choices, more informed regarding their disease and more
invested in their health care." They urged health care providers to maintain
open minds and be willing to explore new information, including information
about alternative and complementary therapies, that patients glean from the
Internet.
Noting that the Internet was here to stay and is expanding rapidly, the
Michigan team also suggested that doctors help to identify or create
accurate patient information Web sites and teach the public how to evaluate
information about cancer and other health matters found on the Internet
Medicinal Gold Mine on Web
These Web sites on health rely on peer-reviewed information and reports
published in reputable medical journals.
MEDSCAPE (www.medscape.com) is used by more than 200,000 physicians, says
its chairman, Peter Frishauf.
HEALTHFINDER (www.healthfinder.gov). A Government-sponsored site with links
to more than 1,400 health sites.
MEDHUNT (www.hon.ch). A medical search engine that allows users to type in
key words to find appropriate sites.
NATIONAL INSTITUTES OF HEALTH (www.nih.gov/health). A gateway to the
extensive resources of Federal agencies, including a list of diseases being
studied by the various institutes.
CENTERWATCH (www.centerwatch.com) lists clinical trials on various diseases,
including a summary of the research and information on whom to contact.
NATIONAL LIBRARY OF MEDICINE (www.nlm.nih.gov) provides access to the world’
s largest biomedical library, including notice of important findings issued
before studies have been published. For general health information, try the
library’s easy-access site: www.nlm.nih.gov/medlineplus
MAYO CLINIC (www.mayohealth.org). This famous clinic’s Web site provides
accessible health information and allows users to E-mail questions to clinic
physicians.
Harvey R. Stone
harv