What is cool is that nearly all of the information described is
accessible to us. This add more evidence of how the Internet is quite
helpful to our health and well being.
kelly
from the New York Times
July 9, 1998
Can the Internet Cure the Common Cold?
By KATIE HAFNER
One Sunday afternoon last March, a 9-year-old boy, Robert Lord,
fell from a rope ladder in the backyard of his home in San Diego.
His neck snapped. As he lay unable to move, he told his little
sister to run for help.
[INLINE]
Denis Poroy for The New York Times
Stephen Lord, left, searched the Web before choosing a treatment for
his son, Robert, in consultation with Dr. Hal Meltzer. Robert, now 10,
was 9 when he injured his neck.
_________________________________________________________________
The next day, a doctor told Robert's parents that the injury was so
severe that there was a strong possibility that their son would not
regain the use of his body below his arms. Desperate, Robert's
father, Stephen, said he called a researcher he knew at the Mayo
Clinic in Rochester, Minn., and got the advice, " 'Look on the Web
-- that's your best chance.' " Lord logged onto the World Wide Web
and typed the words "spinal cord injury" into a search engine.
After several hours, Lord came upon a report about an experimental
drug, GM-1 ganglioside. When given within 72 hours of a spinal cord
injury, the drug seemed to improve the chances of recovery, the
report said. Lord told his son's doctor immediately.
It was 78 hours after the accident when the boy took the drug. On
the following day, he could move his arms, and on the day after
that, feeling began to return to his legs. Eleven weeks after the
accident, he left the hospital, using a walker, a result that could
be part of the boy's normal recovery or could be linked to the
drug. The Lords will never know for sure.
While the Lord family's experience was unusual, patients have been
finding ways to be better-informed and have been acting as their
own best advocates for some time. AIDS and breast cancer patients
have helped publicize research issues concerning those two
diseases, and managed care has forced health care consumers to take
medical matters into their own hands as never before.
But the sheer quantity of information available on the Internet --
more than 10,000 sites with information from experts, amateurs and
quacks on diseases ranging from common complaints to the more
unusual, like Lou Gehrig's disease -- combined with instant
accessibility is bringing about an unparalleled shift in the way
doctors and patients interact. "Being a highly involved patient was
possible before, but only for the most dedicated, committed
people," said Dr. Tom Ferguson, editor and publisher of The
Ferguson Report, a newsletter about online health information based
in Austin, Tex. "Now all the information is available to anyone
with an Internet connection."
At its best, the Internet elevates a doctor-patient relationship
into a partnership and even saves lives. At its worst, information
found on line is misleading or inaccurate. Reliance on the Net can
waste a doctor's time, dash a patient's hopes and put a life in
danger.
"I'm sure there's good information on the Internet, but there's got
to be an increase in people's skepticism because it's so easily
retrievable," said Dr. John Renner, a family doctor in
Independence, Mo., who is president of the National Council for
Reliable Health Information, a nonprofit watchdog group.
"People turn off their reality checkers because they desperately
want to find something that will help them be young forever or be
healthier or better-looking."
Of course, Robert Lord's case included not only useful information
but also a positive combination of people, circumstances and good
luck. The boy's father was able to work as a team with the boy's
pediatric neurosurgeon, Dr. Hal Meltzer, who sent faxes to the Food
and Drug Administration to ask permission to use the drug on a
"compassionate use" basis. Lord grappled with the logistics of
transporting the medicine to San Diego from the pharmaceutical
company's office in Washington. As soon as the package arrived at
the airport, Lord was in his car rushing it to the hospital.
While such cases are not common, more people than ever are turning
to the Internet for health advice. According to a recent survey
conducted jointly by the Institute for the Future in Menlo Park,
Calif., and Princeton Survey Research Associates, nearly two-thirds
of the people who use the Web seek medical information and
referrals.
Doctors generally say they welcome a more educated patient. Dr.
Michael Tedford, an ear, nose and throat specialist in Minneapolis,
said he first became aware of the volume of information his
patients were able to find on line when someone came to him three
years ago for a second opinion on an unusual ear condition. Not
only had the patient used the Internet to investigate his problem,
but he was also able to discuss it in minute detail.
"My job was a piece of cake," Dr. Tedford said. "All I had to do
was sit there and nod."
Dr. Tedford said he had welcomed the level of knowledge the patient
possessed. "It moved us more quickly through the most
time-consuming part of my job, which is patient education," Dr.
Tedford said. "Then I could talk about his options for treatment,
with his values and priorities guiding his choice."
Dr. David Teitel, a professor of pediatrics and chief of pediatric
cardiology at the University of California at San Francisco,
agreed. "It's a phenomenally powerful thing when you're not just
sitting down and drawing pictures about the plumbing," he said.
Dr. Ferguson, who has worked extensively in the area of online
health information and its effect on the doctor-patient
relationship, said that while a doctor must be familiar with
hundreds of different diseases and conditions, a patient becomes a
specialist in one condition -- his or her own -- and its effect on
daily life. "Sometimes your patients think they know more than they
do, but sometimes they know more than you do," Dr. Ferguson said.
Such was the case with Robert Lord, a situation in which the
openness of the doctor played a crucial role. Dr. Meltzer said that
although he had been aware of the ganglioside experiment, it wasn't
until the boy's father presented him with greater detail and a
strong desire to try it that he had seriously considered it.
"In 1998, no one person can know every single medication, every
trial and all that's on the Internet," Dr. Meltzer said. "Here we
have a situation where a child is very severely injured and you'd
like to do anything you can to help out." Since dangerous side
effects did not appear to be a risk, the question was whether the
drug worked. "If the family was willing to accept the risk, and the
Government was willing to provide the medication, then I said,
Let's go for it," he said.
Still more unusual was the way Lord found out about the drug. In
his all-night search of the Net, after hours of clicking on reports
with bleak scenarios, Lord found a report about the ganglioside
drug in a paper written by a high-school senior for her English
class. Only the Internet would have produced such a link.
"I think this is part of the information age," Lord said. "The
connections aren't logical any more in any real sense. It's not a
matter of calling some medical data bank."
Dr. Meltzer cautioned that it was impossible to know whether Robert
had regained his mobility because of the experimental drug he was
given, the surgery he had to help speed his healing, the standard
medication he had taken or a combination of the three. Or the boy
might have recovered on his own, he said.
The more collaborative approach to medicine stands on its head the
tradition in which a doctor gives orders and the patient obeys. And
that makes some doctors nervous.
"It's hard for physicians because once you get the education out of
the way, you can get to more depth of humanity, and a lot of
physicians have never had discussions like that before," said Dr.
Richard Rockefeller, president of the Health Commons Institute, a
nonprofit organization in Falmouth, Me., that promotes the use of
computerized information tools in clinical settings.
_________________________________________________________________
PLUGGED-IN PATIENTS
Online: Two-Thirds of the people who go online have sought health
information there.
At Health Sites: Five percent of those people found it very difficult
to interpret and understand the information they found on the Web; 42
percent said it was somewhat difficult and 52 percent said it was not
too difficult or not difficult at all.
In Doctor's Offices: Sixty-seven percent of doctors said they had
patients who came in with information they had found on the Internet
but only 12 percent referred patients to the Net.
_________________________________________________________________
Many doctors warn against relying too heavily on information found
on the Internet, as it can be difficult to distinguish between
amateur medicine, even chicanery, and valuable data. According to
another Institute for the Future survey, this one a poll of doctors
done with Louis Harris & Associates, 67 percent of those surveyed
said that patients came in with information they had found on the
Internet but that only 12 percent referred patients to the Internet
for information.
"People are finding information their doctors may not have seen,
and sometimes it is welcomed and sometimes it is not," said Dr.
Jerome Kassirer, chief editor of The New England Journal of
Medicine. "The issue is the validity of the information."
There is a danger in turning to the Internet as a virtual Lourdes,
particularly when it comes to life-threatening illnesses. The
explosion of interest in alternative medicine and holistic
approaches to health has brought with it plenty of Web sites
promoting nutrition, vitamins and herbs to remedy everything from
chronic fatigue to cancer.
The temptation to diagnose diseases oneself also worries doctors.
Dr. Laurel Warner, an infectious-diseases specialist in Santa Rosa,
Calif., said a patient who had been looking up his symptoms on the
Internet had shown up convinced that he had Lyme disease. After
examining him, Dr. Warner said, she doubted that he had the
disease, but he insisted on blood tests anyway. When the test
results were negative, she added, he remained unconvinced and told
her that according to what he had found on the Internet, false
negatives when testing for Lyme disease were common. It wasn't
until his symptoms eventually disappeared on their own that he
finally believed her, she said.
Dr. Warner said she grew still more frustrated when people came to
her with information about, say, an experimental drug. "Someone
comes in with information about a new drug for Parkinson's or
Alzheimer's, and it's very sad because you really have to sit
people down and burst their balloons a little bit," Dr. Warner
said. "At the same time, you don't want to discourage the
dissemination of information. I just wish there were a better way
to filter the information."
Dr. Teitel, of the University of California, agreed. "I spend a
fair amount of my time saying, 'Well, that's very interesting, but
it was a test done on pigs, not humans.' People take everything off
the Net as gospel."
Separating gospel from prayer has become something of a specialty
for Hamilton Jordan, chief of staff in the Carter Administration.
Jordan, 53, has educated himself on and off the Internet through
three different bouts with cancer. Jordan said he was now free of
the disease and had turned to helping others with cancer. When
Gayle Reinsch, the employee of a friend of Jordan's, turned to him
in early 1997 after she was found to have small-cell lung cancer,
an especially virulent cancer, Jordan went to the Net.
His search quickly turned up an experimental vaccine program at the
Memorial Sloan-Kettering Cancer Center in New York, and he told Ms.
Reinsch about it. Her doctors at the cancer center where she was
being treated were not enthusiastic. But Ms. Reinsch, 50, stopped
being passive and spoke her mind to her doctors.
"I said: 'You have a reputation for being Midwestern,
middle-of-the-road and conservative. Well, I don't want that,' "
she recalled. She enrolled in the Sloan-Kettering program. Eighteen
months after the diagnosis, Ms. Reinsch's cancer remains in
remission. "Information may not save us all, but it will give more
of us a chance," she said.
Jordan said the Internet had played an important role in his
willingness to help a stranger. The search took him 10 minutes. "If
I'd had to get in the car and drive to a university library, left
to my own devices, I'm not sure I would have done it," he said.
Some doctors, still a distinct minority, are going well beyond
simply welcoming their patients' input. More doctors and nurses are
logging on as moderators of, or participants in, online health
discussions.
Dr. John Mangiardi, chief of neurosurgery at Lenox Hill Hospital in
New York, said he had had no inkling that his patients were so
upset about unsightly incision scars until a few years ago, when he
began logging onto discussion groups and heard patients complain
among themselves. Since then, he has tried to keep incisions less
noticeable, even making them behind patients' eyebrows.
More doctors and nurses are communicating with patients through
e-mail. "It creates greater intimacy in a bounded relationship,"
said Dr. Beverley Kane, chairwoman-elect of the American Medical
Informatics Association Internet Working Group, who has helped
establish the association's guidelines for such e-mail. "But the
main problem is that it adds uncompensated time to the doctor's
day, and it's hard to know whether it requires more time than it
saves."
Experts estimate that just 1 percent of doctors use e-mail to talk
with patients, and still fewer participate in online discussion and
chat groups, but Dr. Kane and others expect that number to increase
as a generation of doctors weaned on computers supplants its
elders.
Most doctors are careful not to offer e-mail diagnoses, but Dr.
Renner, of the National Council for Reliable Health Information,
said he was surprised by the number of doctors verging on giving
specific medical advice to individuals, not just general
information, via e-mail. "I thought physicians would be a lot more
cautious than what some of them have turned out to be," he said.
Despite the problems, reliable medical information is becoming
easier to find on the Net, as the bad is filtered from the good.
Many commercial Web sites now help guide people to accurate health
information. "Right now the Internet is a huge gusher of an oil
well," Dr. Rockefeller said. "We're just beginning to build the
refineries."
Copyright 1998 The New York Times Company
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