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Originally posted July 29, 1999
ANN ARBOR, Mich. - If you search the Internet
for advice on treating your health problems, much of what
you get may be inaccurate, inappropriate, misleading or unreviewed
by doctors, according to a new study by researchers from the
University of Michigan Comprehensive Cancer Center.
The team performed a typical Internet search for information
on a single type of cancer, and analyzed a sampling of the
retrieved pages. They found that nearly half of the pages
that contained treatment information apparently hadn’t been
validated by scientific scrutiny. About 6 percent of those
had wrong information, and many more were misleading. The
search also turned up hundreds of frustrating dead ends, bad
links and pages with no medical information.
But, the team writes in the journal Cancer’s lead August article,
their finding doesn’t mean that Internet users should stop
looking for health information — or that doctors should dismiss
the data their patients find. Rather, they say, the results
should encourage physicians to discuss such information with
their patients, and to steer them toward trustworthy sites.
"The Internet is becoming a powerful force in medicine,
and doctors should view this development as an opportunity,"
says lead author J. Sybil Biermann, M.D, U-M assistant professor
of orthopaedic surgery. "For the public’s sake, we should
work to improve the quality of health information on the Internet,
and to increase public understanding of how important it is
for medical data to go through the process of scientific verification.
In the meantime, the best advice for the public is, ‘Consider
the source.’"
The study, one of the first published efforts of its kind,
statistically examined a sample of the pages retrieved when
four popular Internet search engines searched for information
on Ewing’s sarcoma, a rare and often fatal form of malignant
bone cancer that occurs mostly in children and teenagers.
The uncommon disease was chosen to keep the search results
manageable.
The search simulated the approach of the millions of ordinary
Internet users who have been told that they or their loved
ones have a particular disease, and set out to find more information.
The team reviewed 400 Web pages for accuracy and appropriateness,
and determined whether doctors had verified the information
on them — a process known as peer review.
Peer review aims to squelch inaccurate or misleading information
by exposing each piece of research to the anonymous review
of disinterested experts before it can be published in a medical
journal or presented at a scientific meeting. For example,
reviewers scrutinized the paper by Biermann and her colleagues
before it could be published in Cancer.
The 400 pages evaluated in the study were culled at random
from more than 27,000 retrieved when four different spellings
of the disease’s name were entered into four search engines.
Two researchers acting independently evaluated each of the
sampled pages and rated them; a statistical test showed good
agreement.
Fewer than half of the sampled pages contained information
about medical treatments for Ewing’s sarcoma. Of those, nearly
60 percent had peer-reviewed information from the National
Cancer Institute or other reliable sources. But the rest contained
data and recommendations that came from non-reviewed sources
— or didn’t list the source at all.
The researchers used their combined expertise and a standard
textbook to determine that a full 6 percent of the unreviewed
pages contained wrong information. What’s more, some contained
information about life expectancy that could be overly distressing
or falsely encouraging to the 250 Americans diagnosed each
year with Ewing’s sarcoma.
Medicine in the Information Age
The exchange of health information is now a leading use of
the World Wide Web and of other Internet resources such as
discussion groups. According to the Internet research group
Cyber Dialogue, (http://www.cyberdialogue.com) 25.5 million
American adults will use the Internet this year to find health
information.
In fact, the idea for the study came from Biermann’s own experience
as the surgeon to hundreds of children and adults with different
forms of primary and metastatic bone cancer, including Ewing’s
sarcoma.
For several years, she reports, patients have been coming
to her armed with printouts of pages from the Internet. Some
have even asked why her strategy for treating their disease
didn’t exactly match the advice they got on-line, or have
called a new clinical trial to her attention.
She adds, "It’s no longer a situation where doctors dispense
information and patients passively listen; any patient or
their family can now go on the Internet. But nobody really
has a handle on what’s out there for them to find, and it’s
been difficult to quantify how good the information is."
One of the hardest classes of medical information to assess,
Biermann continues, is the anecdotal or "personal story"
kind. The Internet abounds with newspaper feature stories
and discussion group testimonials. "There is some value
to anecdotes — when they’re detailed, doctors call them ‘case
studies’," she says. "But you have to make sure
that appropriate conclusions are drawn from the evidence at
hand."
All in all, she concludes, there is plenty of value to be
found on the Internet, and plenty of value in the interaction
between patients and physicians that comes about because of
it.
"I encourage my patients to use the Internet," says
Biermann. "I ask them if they found anything surprising
or different from the care I’ve recommended, and I give them
addresses of Web sites I’d recommend, such as government and
nonprofit sites. I fully believe that physicians should be
partners in this. We should view it as an opportunity to give
our patients more information about their case."
Dr. Biermann’s Web picks for health information:
University of Michigan Health System:
http:// www.med.umich.edu
Contains "Health Topics A to Z" — descriptions of
numerous conditions, treatments and medical issues, approved
by doctors at one of the nation’s leading medical institutions.
University of Michigan Comprehensive Cancer Center:
http://www.cancer.med.umich.edu
Contains cancer information and descriptions of the latest
clinical trials.
National Cancer Institute CancerNet:
http://cancernet.nci.nih.gov
Contains the PDQ cancer information database on many cancer
topics, as well as other information for patients and physicians.
Intellihealth:
http://www.intellihealth.com/IH/ihtIH
Created by Johns Hopkins University’s Health Information Service,
a site with information from a wide variety of sources.
American Cancer Society:
http://www.cancer.org
Includes the Cancer Resource Center, information on cancer
for patients and families.
Drkoop.com:
http://drkoop.com
A comprehensive site published under the name of Dr. C. Everett
Koop, former U.S. Surgeon General.
For more information:
Cancer: http://canceronline.wiley.com/
U-M Orthopaedic Surgery: http://www.med.umich.edu/surg/ortho
National Cancer Institute PDQ documents on Ewing’s family
of tumors and bone cancer:
Ewing's
family of tumors
Questions
and Answers about Bone Cancer
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