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Living with Cancer > Researching Cancer
Google “cancer,” and you’ll get 265 million
hits. The flood of information that comes with a cancer diagnosis can be overwhelming.
And yet, you need to know.
We talked to Ruti Volk, M.S.I., the U-M Comprehensive
Cancer Center’s librarian, about the right ways
to find the best information for you. She recently wrote “The Medical Library Association Guide to Cancer
Information: Authoritative, Patient-Friendly, Print and
Electronic Resources,” the first book of its kind in the
field of oncology. As the manager of the Cancer Center’s
Patient Education Resource Center, a full-service lending
library, Volk provides professional searches on specific
topics to patients free of charge.
Q: There’s so much information out there.
Where do you start?
A: First, let me tell you where not to start: Don’t search
on Google or Yahoo. If you put in your diagnosis, you’ll get
a million hits. It’s overwhelming, and they aren’t sorted out
so that you know what’s reputable and what’s not. The best
places to start are general cancer sites provided by the National
Cancer Institute, the American Cancer
Society or People Living With Cancer. We’ve also developed our own Cancer Center Information
Guides, which go further in
providing links to good sites that are specific to a diagnosis.
Q: How can you tell if a Web site is providing
quality information?
A: The Pew Internet & American Life Project recently
published a study showing that 80 percent of those online–
that’s about 113 million people–search the Internet
for health information. But only 15 percent to 25 percent
consistently check the source of the information they use
to learn and even manage their health. You need to know
who is providing the information and what is motivating
them to provide it.
Q: Can you tell us what to look for specifically?
A: The most important thing is to read the “about us”
section of the site. Look for sites that offer information
written or reviewed by credentialed medical professionals.
Be careful of sites that are selling something. Any information
they provide is going to be there to support sales. You
want to look for sites that have been updated within the
past three years. Their information should include references
to respected scientific journals like The Journal of the
American Medical Association or The New England
Journal of Medicine.
Q: What about sites like WebMD that feature
articles written by doctors?
A: These sites are reliable for the most part, but keep
in mind that a surgeon may have a very different perspective
than a radiation oncologist. Naturally, they will be
biased toward their own field of practice and may even
promote therapies they offer. That’s why it’s better to
seek out resources from the American Cancer Society or
the National Cancer Institute, which work to balance
these points of view.
Q: What if you’re having trouble finding
what you need?
A: There’s an illusion that you can find everything you
need to know on the Internet. I just published a study
that showed that the Patient Education Resource Center
provided new information to 96 percent of people who
requested searches. One person said they’d searched high
and low, but couldn’t find the information we found. In a
situation like this, you need experts to help. Also, too, we
realize there are a lot of barriers to getting the information
in the first place: You can be too busy caring for
your family or maybe you’re too sick to sit at your computer.
That’s why we encourage people to call the PERC.
- Appoint an information adviser. Ask someone
to sift through information to help you find out what
you need to know. This will help to keep you from getting
overwhelmed.
- Learn the lingo. Look at a Web site’s address.
Anyone can get an address that ends with .com or .org.
Only government organizations or educational institutions
can have addresses ending in .gov or .edu.
- Look for references to respected scientific
literature. Journals such as The New England Journal
of Medicine are edited by a panel of scientists who carefully
review articles before publication to ensure truth
and accuracy. Be leery of resources that cite newspaper
articles in support of their claims.
- Don’t focus on a single study. If you are
looking for medical literature, look for review articles
that evaluate a whole body of research rather than an
individual study to get a better picture.
- Check publication dates. Medicine is one of the
fastest-evolving fields. Don’t rely on treatment information
older than three years.
- Beware of testimonials. Testimonials are a red
flag. Remember, this is an advertising tactic. Don’t fall
for gimmicks.
- Try not to get hung up on statistics. You’re
only one person and you can fall on either side of the
statistics. “My mother survived stage 3A lung cancer.
Only 25 percent of people diagnosed at this stage are
alive five years after the diagnosis,” said Ruti Volk,
Cancer Center librarian, “but for her, she’s 100 percent.”
Stop by the
Patient Education
Resource Center, on Level
B1, or call 734-647-8626 for
assistance.
