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Laura Landro is an editor
and award-winning writer for the Wall Street Journal.
In 1991, Laura was diagnosed with a form of blood cancer called
chronic myelogenous leukemia.
Over the course of the months and years that followed, she used
her training as a reporter to obtain critical information about
the disease affecting her, improving her ability to interact
with her doctors and eventually emerging as a survivor. Laura
won the National Print Journalism Award from the Leukemia Society
of America for her WSJ article, "A Survivor's
Tale," and is the author of Survivor: Taking Control
of Your Fight Against Cancer; she remains an outspoken
advocate of patient empowerment through education.
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MDNG: Characterize your experiences
with the Internet as it relates to medical awareness. Did you have
to find the info you were looking for, or did you know where to
go?
LL: Well, you have to remember
that I began my quest for medical information when I was diagnosed
with chronic myelogenous leukemia in 1991, before the Internet as
we know it now really existed. I knew absolutely nothing about leukemia,
but I was able to use my newspaper's online news retrieval service
to find articles from the lay press and medical journals. But there
was no access to Medline for consumers, so I had to rely on a scientist
friend to get the relevant papers I needed on topics such as bone
marrow transplants. It wasn't until five years later that that really
useful online medical information became accessible to consumers,
and Medline began letting anybody with an Internet connection surf
their vast store of data. By 1996, when I decided to write a book
to help guide other patients through the medical system, I was able
to recommend some excellent sites to help them learn more about
different types of cancer and treatment options. To me, the most
impressive thing about the Web is how it has enabled patients to
find and help each other, and to share information. It isn't a substitute
for consultation with a medical doctor, but it adds a new dimension
to the patient information-gathering experience that would never
have been possible without the Web.
MDNG: What was the initial
reaction of your healthcare provider to your research?
LL:
At the first cancer center where I sought treatment, the
reaction wasn't very good. They were actually pretty alarmed to
see a patient armed with peer-reviewed
studies, pointing out the flaws in their treatment regimens, and
asking difficult questions about things like disease-free
survival rate. Several of the other cancer centers I visited
were more open, and doctors really enjoyed talking over options
with an informed patient. It saved the time that would have be spent
educating me on the most basic issues, and let us use that time
to really explore the pros and cons of the various options available
to me. At the hospital I ultimately chose for my transplant, the
Fred Hutchinson Cancer Research Center in Seattle (www.fhcrc.org),
doctors were open to my questions and were pleased that I had done
so much research before arriving for my initial consultation. The
only problem was that sometimes doctors took for granted that I
knew more than I did! It's a bit like knowing enough of a foreign
language to converse and ask directions; the native speaker often
assumes you really understand the language and starts talking a
mile a minute.
All in all, I think my increased empowerment has changed my relationship
with physicians and with the healthcare system in general. It has
made me feel more like a partner and less like a subordinate. At
the same time, I now understand more about the pressures faced by
healthcare professionals, and respect what they are up against.
MDNG: How did you differentiate
between the good sites and the bad ones?
LL: I think anyone of normal
intelligence can usually differentiate between good and bad sites,
though there is no accounting for how many seemingly bright people
can get taken in my the claims of so-called “alternative”
medicine now found in abundance online. (Dr. Stephen Barrett's www.quackwatch.org
site, which reports on all kinds of healthcare scams, is worth
checking from time to time). I always advise folks to check what
they find against multiple sources, to note the date that the information
was last updated, and to consider the source itself. You can usually
rely on information from government research sites, academic medical
institutions, and nonprofit disease advocacy groups; while information
from patient support groups is also often reliable, it must always
be checked against professional sources, as even the best patient
advocates are not doctors.
MDNG: What advice would you
give to people seeking information on a newly diagnosed condition?
LL: Use the Web to educate
yourself, but use it wisely. As I mentioned before, depend on sites
with reputable names attached, whether government-funded research
centers, academic medical centers, or established commercial sites
such as WebMD (www.webmd.com)
or the Mayo Clinic (www.mayoclinic.com).
Be careful about the date of the material you find, as well; medical
information is always changing. Listen to what other patients have
to say online but remember they are not doctors, so discuss everything
with your medical professional. Above all, don't allow yourself
to be overwhelmed by too much information; there comes a time when
you have to gather your resources, make a decision based on the
best evidence at hand, and trust your doctors. |
