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 Researchers say the websites touting products or advice also tend to
promote the benefits of their services far more often than they note
the limitations.
“I think that’s one of the challenges . . . it’s hard to know which
sites are ones that are marketing tests that are really helpful, and
which sites are marketing tests or services that aren’t helpful,”
said Dr. Stacy W. Gray, a medical oncologist at Dana-Farber Cancer
Institute in Boston who led the study. “It’s hard to know which are
which.”
Gray, who is also an assistant professor of medicine at Harvard
Medical School, said she and a coauthor had noticed that many of
their patients asked questions about information they found on
cancer care web sites.
“Knowing this is a fairly common thing, we wanted to better
understand the Internet marketing landscape to see what patients
might encounter online,” Gray said. “Studies over the last few years
have shown in other contexts, not cancer, exaggerated claims that
don’t match scientific evidence, so we wanted to evaluate what kinds
of things are being marketed in cancer.”
So-called personal cancer medicine on the Internet includes analysis
of tumor tissues, help interpreting tumor data or advice on the best
treatments for an individual’s tumor, as well as testing for cancer
risk.
Gray and her colleagues note in JNCI Journal of the National Cancer
Institute that tests for inherited risk for developing certain
cancers, or those that examine cancer cells have the potential to
significantly improve cancer treatment. But because most cancer
tests are not regulated by the Food and Drug Administration, some of
the products being advertised don’t have proven benefits.
The researchers screened 4,910 websites, using search terms like
personalized cancer medicine, individualized cancer treatment or
targeted cancer care on Google, Yahoo and Bing, as well as gathering
sites from scientific literature and conferences. They focused on
the top 55 websites that matched their criteria for the study.
Most of the websites researchers found were commercially sponsored
(56 percent), while others were promoted by academic institutions
(20 percent), private institutions (15 percent) and individual
doctors (2 percent).
Some of the commercial sites offered guidance about discussing their
products with doctors, while a small percentage also included a
directory of doctors who might provide their tests or services.
An expert panel helped determine whether the advertised tests had
enough evidence to back-up claims of helping to treat cancer. For
example, if large randomized controlled trials or large analyses of
such trials found the tests effective, the panel considered the
information trustworthy.
The panel found that a minority of websites (28 percent) sold tests
they would endorse.
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Half of the commercial websites included test prices, which ranged
from $99 to $13,000. And while 85 percent of the websites described
benefits of their products, only 27 percent specified potential
limitations.
“The take home message for patients and doctors is that they need to
be careful and critically evaluate what they see online,” Gray told
Reuters Health. “If patients encounter things online they’re curious
about, they should talk to their providers about whether those tests
are helpful.”
Dr. Ben Park, an oncologist at the Johns Hopkins Sidney Kimmel
Comprehensive Cancer Center in Baltimore said the study uncovered
important information for patients and doctors.
“This study goes a long way into letting patients and physicians
know that much of what is sold had not been truly validated,” said
Park. “I think many in our business are aware of the over promise of
these tests and the advertisements that accompany them.”
But Park noted that measuring the quality of the web sites was
difficult because they were so different from one another.
“It’s also difficult to impossible to track outcome data since
usually there is never follow-up after testing and/or the
information could violate HIPAA (federal health) regulations,” he
told Reuters Health in an email.
More testing is needed to gauge the effectiveness of personalized
testing for cancer, Park said. “To take discovery research into
clinical practice takes years to decades of further research and
validation. This is no different than how a new drug gets put
through multiple levels of clinical testing, yet for some reason,
many such steps have been ‘skipped’ for personalized medicine
testing.”
SOURCE: http://bit.ly/1MmGdQB
JNCI: Journal of the National Cancer Institute, online March 5,
2015.
[© 2015 Thomson Reuters. All rights
reserved.] Copyright 2015 Reuters. All rights reserved. This material may not be published,
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