Re: Logging On for a Second (or Third) Opinion
- From: "Jofirey" <jofirey@xxxxxxxxxxxxx>
- Date: Wed, 1 Oct 2008 09:48:36 -0700
Saving this to read more thoroughly.
I knew that medical research on the internet had become both easier
and less productive in the last ten years or so.
It used to be much easier to find and get into medical school and
research sites.
When I had the blood clot in my lung I was able to get the same
information from a medical school, Indiana I think, as to presentation
and treatment protocols that my doctor had available.
But this gives me some ideas that will help.
Informed decisions are great. But quality of information has been
iffy lately.
Jo
"Nann Bell" <hanbellGOGATORS@xxxxxxxxxxxxx> wrote in message
news:0001HW.C508FF0B0002B439F0284550@xxxxxxxxxxxxxxxxxxxxxxxxxx
From the NYTimes
http://www.nytimes.com/2008/09/30/health/30online.html?_r=1&th&emc=th&oref=slo
gin
Logging On for a Second (or Third) Opinion
When Terri Nelson learned she had a large fibroid tumor in her
uterus, she
went online.
There is nothing new in that, of course. The intrepid and the adept
were
going to the Web for health information as long ago as the 1980s,
well before
Google and other search engines made it accessible to a wider
audience.
These days, that is pretty much everyone. At least three-quarters of
all
Internet users look for health information online, according to the
Pew
Internet and American Life Project; of those with a high-speed
connection, 1
in 9 do health research on a typical day. And 75 percent of online
patients
with a chronic problem told the researchers that ³their last health
search
affected a decision about how to treat an illness or condition,²
according to
a Pew Report released last month, ³The Engaged E-Patient
Population.²
Reliance on the Internet is so prevalent, said the report¹s author,
Susannah
Fox, the associate director at Pew, that ³Google is the de facto
second
opinion² for patients seeking further information after a diagnosis.
But paging Dr. Google can lead patients to miss a rich lode of
online
resources that may not yield to a simple search. Sometimes just
adding a word
makes all the difference. Searching for the name of a certain cancer
will
bring up the Wikipedia entry and several information sites from
major
hospitals, drug companies and other providers. Add the word
³community² to
that search, Ms. Fox said, and ³it¹s like falling into an alternate
universe,² filled with sites that connect patients.
As a result, said Dr. Ted Eytan, medical director for delivery
systems
operations improvement at the Permanente Federation, ³patients
aren¹t
learning from Web sites < they¹re learning from each other.² The
shift is
nothing less than ³the democratization of health care,² he went on,
adding,
³Now you can become a national expert in your bedroom.²
These expanded capabilities allow people to share information
easily,
upending the top-down path of information between doctors and
patients.
Today, said Clay Shirky, an expert in the evolving online world,
patients are
³full-fledged actors in the system.²
And they have plenty of company. Benjamin Heywood, the president of
PatientsLikeMe.com, a site that allows patients to track and
document their
conditions and compare notes with other patients, says that with a
growing
online population, it becomes possible to research highly specific
conditions
< say, being a 50-year-old with multiple sclerosis who has leg
spasms and is
taking a certain combination of drugs.
³We are really about measuring value in the real world,² he said.
There are so many sites today and the landscape is changing so
rapidly that
it would take an encyclopedia rather than a newspaper to list them.
But they
can be grouped into five broad, often overlapping, categories:
GENERAL INTEREST Sites like WebMD (webmd.com), Discovery Health
(health.discovery.com) and The New York Times (nytimes.com/health)
provide
information about disease, news and lifestyle advice, as do medical
institutions like the Mayo Clinic (mayoclinic.com).
MEDICAL RESEARCH SITES offer access to the published work of
scientists,
studies and a window into continuing research. Examples include
PubMed
(ncbi.nlm.nih.gov/pubmed) from the National Library of Medicine;
clinicaltrials.gov, which tracks federally financed studies;
psycinfo
(apa.org/psycinfo), with its trove of psychological literature; and
the
National Center for Complementary and Alternative Medicine
(nccam.nih.gov),
the government¹s registry on alternative medicine research.
PATIENT SITES for groups and individuals are booming < so much so
that they
are increasingly used by researchers to find patients for studies.
These
include the Association of Cancer Online Resources (acor.org) and
e-patients
(e-patients.net), as well as Patients Like Me and Trusera
(trusera.com),
which provide a bit of Facebook-style social connectivity for
patients, along
with the ability to share their stories in clinical, data-laden
detail.
DISEASE-SPECIFIC SITES focus on a particular condition and are often
sponsored by major organizations like the American Heart Association
(americanheart.org), the American Cancer Society (cancer.org) and
the
American Diabetes Association (diabetes.org). But smaller groups can
put
together extensive resources as well, with sites like
breastcancer.org and
Diabetes Mine (diabetesmine.com), which calls itself the ³all things
diabetes
blog.²
WEB TOOLS These sites help people manage their conditions < for
example,
sugarstats.com for diabetes, Destination Rx (drx.com) for comparing
drug
prices, and YourDiseaseRisk.com, a service of the Washington
University
school of medicine that helps patients determine their risk for
various
problems.
All of the changes in the Internet and the ways people use it help
explain
why Terri Nelson¹s experience in 2008 is very different from what it
might
have been in 1998.
Ms. Nelson, who lives in Portland, Ore., received her diagnosis on
Aug. 11.
She had two weeks before a follow-up visit with her surgeon. Ms.
Nelson and
her husband, Stewart Loving-Gibbard, used the time to research
fibroids and
the most common treatments.
Ms. Nelson started with straightforward information gathering,
checking the
articles on fibroid tumors at sites that included the Mayo Clinic
and PubMed.
Then she reached out to the community of people with fibroid tumors
at ACOR
and other sites. (³Those had to be evaluated carefully,² she said,
³to find
the nuggets of valid information in the vast sea of online
hypochondria.²)
Having spent many years trolling roisterous online forums, however,
she had
developed that essential Internet tool: what might be called a
personal
baby/bathwater algorithm that helps people to sift through mountains
of
information to find what is relevant. She found a blog for the
layperson,
³Inquisitive Geek With Fibroid Tumors,² that featured wide-ranging
discussions and, she said, ³was really useful² and specific to her
condition.
By the time she went into the consultation with her surgeon, she
knew that
the old-school way of dealing with her grapefruit-size tumor would
probably
have been a hysterectomy. But that can impair sexual response, among
other
side effects; a growing number of doctors prefer abdominal
myomectomy, which
leaves the uterus intact. The surgeon laid out the options and
recommended
that approach as well, confirming Ms. Nelson¹s research.
During the surgery and recovery, Mr. Loving-Gibbard used Twitter,
the
short-message communication service, to keep friends and family
apprised of
her condition. Twittering an operation might seem frivolous, but
when Ms.
Nelson¹s teeth began chattering after the procedure, a friend
following the
updates suggested it could be a potentially hazardous side effect,
tardive
dyskinesia, that can occur with one of the antinausea drugs Ms.
Nelson was
taking. Mr. Loving-Gibbard, who had been researching that very point
when the
message from the friend, Ken Yee, came in, was able to get the
medication
changed.
After the procedure, they posted photographs of the surgery and
tumor on the
photo-sharing site Flickr.com under the heading ³Extracting a Pound
of Flesh²
(flickr.com/photos/littlecrumb/sets/72157607218121711/).
They are not for the squeamish, but as Ms. Nelson said, ³My
husband¹s family
is mostly doctors, so they were all interested in seeing the photos,
and most
of my friends are morbidly fascinated.²
As patients go online to share information and discuss their care,
they are
becoming something more: consumers. Amy Tenderich, the creator of
Diabetes
Mine has turned her site into a community for diabetes patients and
an
information clearinghouse for treatments and gadgets < even going so
far as
to publish an open letter last year to Steven Jobs, the Apple
Computer
co-founder, challenging him to design medical devices like insulin
pumps that
are as sleek and easy to use as an iPod.
Dr. Talmadge E. King Jr., chairman of the department of medicine at
the
University of California, San Francisco, says doctors are coming
around to
seeing the value of a patient who has gone online for information.
Patients in his pulmonary practice, he said, sometimes come into his
office
holding medical journal articles he has written ³and quiz me.² The
better-educated patient might stump the doctor, he went on, but
these days
³it¹s much easier for me to look them straight in the eye and say,
OI don¹t
know¹ ² and promise to get back to them. ³Patients know you¹re not
all-knowing,² he said. ³They¹re not upset by that.²
Can online information be trusted? The answer, increasingly, is yes.
In a
study earlier this year, a report in the journal Cancer looked at
343 Web
pages about breast cancer that came up in online searches. The
researchers
found 41 inaccurate statements on 18 sites < an error rate of 5.2
percent.
Sites promoting alternative medicine were 15 times as likely to
offer false
or misleading health information as those sites that promoted
conventional
medicine, the study found.
Matthew Holt, who with Indu Subaiya created a conference, Health
2.0, that
showcases innovation, says the marketplace in information can
correct itself
over time.
³In the end,² he said, ³the more people you have in the
conversation, the
better information drives out the worse information.²
_____________________________________________________
--
Nann
remove the Gator cheer to email me
Change everything. Love & forgive.
.
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- Logging On for a Second (or Third) Opinion
- From: Nann Bell
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