e-health

Medical
Advice
from By Joachim Pietzsch

Cyberspace? Health portals

that inform both patients
and doctors are
shooting up like mush-
rooms. Pioneering
cyber medicine Web sites
include OncoLink
in the United States and
Inkanet in Germany

The Internet gives

patients access to precise
information on the
current state of medical
research for the first
time. Patients are becoming
increasingly well-informed –
the patient as critical
customer
 L
ibraries can be places of horror. Like
a bolt of lightning sending her to the
bottomless abyss, Anja Forbriger
found the text in a medical diction-
ary at her local library, a dictionary she used
to look up the diagnosis she had been given
only hours before. “Good thing I caught you,”
the chief doctor yelled out to her as she
made her rounds in the hospital. “You have
Hodgkin’s disease; now it’s up to hematolo-
gy to take care of you.” And with that the doc-
tor disappeared into the next room.
This was in January 1995. “Malignant
tumor of the lymph nodes” is what Anja For-
Illustrations: Christoph Niemann
briger found in the medical dictionary under
the heading “Hodgkin’s disease” and she also
discovered that most people with the disease
die painful deaths as a result. The article was
accompanied by a photograph of a torment-
ed patient in the
final stages of the
disease. “I had the
feeling that the
world had just stopped,” she recalls. Anja For-
briger was 27 years old at the time; she had
just taken her degree in cultural studies and
had her first full-time job contract in her
pocket. At first, she had not taken the swell-
ing in her throat seriously; there was no pain.
Then, however, she began to suffer attacks of
extreme tiredness, and her doctor sent her to
the hospital. A tissue sample was taken from
her the day after her graduation party. Cancer
of the lymph nodes: a dark cloud which
threatened to wipe out her future.
Fortunately, the young woman – herself a
trained librarian – took a second and closer
look into the medical dictionary and discov-
ered that it was already some 20 years old.
Maybe the intervening years had seen an in-
crease in survival rates for patients with
Hodgkin’s disease? This did indeed turn out
to be the case, as she discovered the next day
on the Internet. One helpful site Anja discov-
ered was OncoLink, an online cancer infor-
mation service run by the University of Penn-
sylvania. It was here that Anja struck gold. “I
read the whole night long.” Over time what
became even more important to her than the
plethora of facts were the virtual self-help
groups of Hodgkin’s disease patients that she
found through OncoLink. Such communities,
e-mail discussion groups, keep their mem-
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e-health
bers in touch with each other via e-mail. “I
cried,” says Anja, recalling her first log-in.
“Suddenly I could cry. I felt a contact that re-
moved my horror. I was no longer alone with
my fear.” She wrote an e-mail and asked for
advice.
Source of emotional strength
The first answer was quick in coming, from
Steve in Salt Lake City: “Do not panic,” he
calmed her. He, too, suffered from Hodgkin’s
but had won his battle against the disease, and
she would win it too, he said. “And then he
wrote about the snow that had fallen during
the night,” Anja Forbriger recalls. “He had to
finish up writing his e-mail because he want-
ed to go out and ski.” This was amazing. In-
stead of writing about death, Steve, the survi-
vor, was writing about snow. Anja felt an “in-
describable emotional strength.”
Dr. Gunther Eysenbach also believes that
the Internet can be a source of strength for
cancer sufferers. The head of the Research
Group for Cyber Medicine at the University
of Heidelberg, Germany, emphasizes that this
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Web sites like Web
Medicine and OncoLink now
provide information on
diagnoses and treatments to
hundreds of thousands
of patients
is not a scientifically proven hypothesis:
“Which effect is more predominant, a feeling
of help or one of insecurity, depends on the
individual. Some patients don’t want to know
much, whereas for others the Internet is an in-
exhaustible source of information.”
Overall, however, it has become clear that
the Internet will change the relationship
between doctor and patient. Eysenbach cites
a survey, the results of which were presented
in the Journal of Medical Internet Research,
which he publishes. The survey looked at how
the Internet affects doctors in Glasgow, Scot-
land, all of whom have Internet access via the
National Health Service. Although time pres-
sures and lack of computer expertise often
represent an obstacle for the doctors, some 70
percent of those surveyed said they used the
Internet for medical information purposes.
And if doctors intend to fulfill their patients’
increasing demands for knowledge, they will
have no other choice but to use the Internet.
Some 58 percent of the doctors said they had
been confronted by patients with health infor-
mation they had garnered from the Internet.
Most of these doctors said the information
their patients presented appeared trustworthy
but had previously been unknown to them. In
other words, the need for doctors to keep up-
to-date is increasing, and what the Scottish
study revealed is true elsewhere: patients who
obtain information about their diseases from
the Internet play a more active part in their
own treatment, have higher expectations of
their doctors, and demand more of their time.
Meeting on more equal terms
“The Internet saved my spleen, at least,” says
Anja Forbriger in answer to the question as to
whether or not she would have been able to
successfully face up to her cancer without the
Internet. She was diagnosed with stage IIa:
two lymph regions on the upper diaphragm
were cancerous, requiring either chemother-
apy or radiation treatment, and the treatment
plan also called for surgical removal of Anja’s
slightly enlarged spleen. However, on the Web
site of an American cancer research center,
Anja found an article that contradicted this
treatment plan. The spleen did not necessari-
Internet health portals
are increasing the pressure
on doctors to keep abreast
of new developments.
Well-informed patients
play a more active role in
their own treament
ly have to be removed;
in certain cases local-
ized radiation treatment
would do the trick.
Armed with her article,
Anja entered into hard-
nosed discussions with
her doctors and convinced them to leave her
spleen in place, because without it – as she
had learned on the Internet – she would be
less protected from the possibility of her
tumor’s returning.
Serious help for patients
“There remain very large holes in our under-
standing of the effect that cyber medicine has
on patients. But as researchers we are also
obliged not to simply follow Internet euphor-
ia blindly but to help doctors and consumers
use the medium to the best effect,” said Dr.
Eysenbach during the opening of a world
congress on “Internet and Medicine” which
he organized in Heidelberg in 1999. Anja
Forbriger also attended the congress. Semi-
convalescent, she founded Inkanet in 1996, an
information network for
cancer sufferers and their
loved-ones. Even at the
very start of her illness she
had begun to make the in-
formation she retrieved
from the Internet available
to others. “I distributed printouts of informa-
tion from the Web all over the hospital be-
cause I was so outraged at how alone patients
were left. They didn’t even put up the tele-
phone numbers of the most important cancer
advisory centers.” After a person has been di-
agnosed with “cancer” they are overwhelmed
by so much at once that they can hardly get
through the next two weeks. Patients are sent
to CT without being told, for example, that CT
stands for computer tomography – to say
nothing of what it means or does. “The doc-
tors have too little time to explain things and
they are often lacking in any feeling for the
needs of the patient,” is how Anja Forbriger
describes her experience. The Cancer Infor-
mation Service (Krebsinformationsdienst, or
KID) at the German Cancer Research Center
KID, the Cancer
Information Service of
the German Cancer
Research Center in Heidel-
berg, presents the
latest findings in oncologi-
cal research
in Heidelberg has been posting up-to-date in-
formation on oncology since April 1999. KID
has operated an extensive and anonymous
telephone advisory service since 1986,
through which it has answered more than
170,000 requests for information.
New counseling service
“We cannot substitute for a discussion with a
doctor,” says KID chief Birgit Hiller. “We
don’t give any recommendations, but we do
try to provide information on the current state
of oncological research.” In Hiller’s opinion,
the Internet is used in a completely different
way than the traditional telephone counsel-
ing service: “Patients and increasingly their
loved-ones go into the Net right away after the
diagnosis; the telephone advice service, on
the other hand, is generally called upon after
the first treatment, when the patient is once
again at home and finding his or her feet
again.” The “early” use of the Internet shows
a clearly increasing interest in issues sur-
rounding cancer prevention. KID offers trust-
worthy and understandable information, and
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 – who charged 25 dollars for his services – ed to a positive evaluation of the site’s con-

e-health wrote that the condition was probably not

its highly trained team means that the reliabi-
lity of this information can be maintained at
all times.
Extensive quality assurance – not just in
the field of oncology – is therefore of the ut-
most concern for cyber doctors like Gunther
Eysenbach when it comes to the future of
medicine and information on the Internet.
“The quality of medical information can
mean the difference between life and death
for a patient.” Eysenbach examined the state
of the service currently available on the In-
ternet in an experiment he outlined in the Brit-
ish medical journal, The Lancet. First of all he
used the search engines Yahoo and Altavista
to find 17 so-called “cyberdocs” offering
medical consultations on the Internet. He
posed as a potential patient, and looked for
advice via e-mail: “Hello. I am a 55-year-old
man and I have a severe skin problem,” he
began, describing the typical symptoms for
shingles (herpes zoster), and added that as
the result of a kidney transplant he was tak-
ing immunosuppressive drugs. This descrip-
tion should not only have led all doctors to a
clear diagnosis, but also to a clear treatment:
acyclovir, the drug that would stop the life-
threatening infection.
A need for caution
Five of the 17 cyberdocs did indeed give this
one and only correct piece of advice. Three
did not want to recommend any treatment be-
cause they said they did not have sufficient
dermatological expertise. And seven did not
answer at all. Had the case been genuine this
lack of response would have been no less dan-
gerous than the two most dubious answers that
Eysenbach received. One supposed cyberdoc
anything too bad and recommended vitamin
C and a homeopathic medicine. Another an-
swered by saying that the patient was prob-
ably suffering from a dysfunctional secretory
system and recommended eating two apples
and drinking a glass of warm water as an im-
mediate treatment.
New mark of quality
Dr. Eysenbach does not only see his job as
helping to establish regulatory systems to pre-
vent outcomes of this kind. He also wants to
counter such developments on the Internet
with high-quality medical advice. Together
with a group of colleagues he has developed
dermis.net, an Internet portal for skin dis-
eases. The main part of the site is comprised
of an atlas of 600 skin diseases that attracts
approximately 3,000 hits a day.
However, Eysenbach’s most ambitious
project is the establishment of a system for
awarding marks of quality for medical infor-
mation on the Internet, a project that is receiv-
ing support from the European Union. The
seal of approval will be called “Medcertain”
and it should go into service for the first time
next year. Sites offering medical information
will have to take active steps in order to gain
the “Medcertain” seal, which will be offered
in three stages. The first step will require sites
to provide specific details – also accessible
to all users – so that
they can be identified
and registered. The
second step is tied to
the fulfillment of cer-
tain formal criteria,
such as the separation
of information con-
tent and advertising.
The third step is relat-
tent by medical experts. “This seal of approv-
al will initially confirm nothing more than the
fact that we have not discovered any out-and-
out nonsense on a particular site.”
Inkanet, the information network for can-
cer sufferers and their loved-ones, has now be-
come a must-visit site for many people. “With
50,000 pages accessed monthly, we are oper-
ating the most used self-help Web site for can-
cer patients in Germany,” says Anja Forbriger.
The self-help network, which Forbriger and a
small team run in their free time, offers pati-
ents a great deal: tips on new forms of treat-
ment as well as inside information on how to
deal with the disease, contact with other can-
cer patients, and words of encouragement
from those who have overcome the disease.
“Our strength lies in the fact that we have ex-
perienced what we are talking about,” says
Anja Forbriger.
Better chances of recovery?
“The Internet is a wonderful medium because
it breaks the silence and shows the hurt; it
helps to break through the isolation that
cancer patients suffer.” This champion of
patients rights goes on to say that there should
be Internet access for cancer patients in every
hospital. In order to support this call scientif-
ically, Anja Forbriger is also working on a
clinical study that is intended to demonstrate
whether or not cancer patients with access to
the Internet have better
chances of recovery. Her
scientific partner in this en-
deavor is Dr. Gunther Ey-
senbach. Should the results
of the study come in posi-
tive, then the Internet will
rightly deserve the status of
a virtual library that pro-
motes health. ≈

Anja Forbriger Recommended Web Sites

is the founder of the Inkanet health portal
(www.inkanet.de), one of the most impor-
tant self-help Web sites for cancer patients
in Germany. Anja Forbriger suffered from
cancer in the middle of the 1990s herself –
she now considers herself a “survivor.”
Among other things, the demands of this en-
ergetic advocate of patients’ rights include
Internet access for cancer patients at every
hospital.
www.medcost.fr French magazine for e-medicine
www.netdoktor.de German healthcare network
www.oncoLink.org University of Pennsylvania cancer center
www.krebsinformationsdienst.de Detailed information from the
advisory service of the German Cancer Research Center
www.webmd.com American healthcare portal
www.jmir.org Journal of Medical Internet Research
www.nlm.nih.gov United States National Library of Medicine,
the world’s largest online medical library
www.dermis.net German portal on skin diseases
www.morbus-hodgkin.de Site for Hodgkin’s disease patients

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