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The Intelligent
Patient's Guide to the Internet |
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Take two aspirin and look it up on the Internet
- this advice is fast becoming the standard prescription
for anyone facing a new or major illness in the
West. Medical journals, text books, encyclopedias,
research papers, and huge international databases
once available only to doctors are now just a mouse
click away.
Savvy patients can even learn about a breakthrough
before their doctor does, and the internet has given
birth to a new group of informed, empowered patients
who want to make medical decisions in partnership
with their doctors, instead of just blindly following
the doctor’s advise.
While everyone knows that there’s a wealth
of medical information on the Net, why are most
patients in India still so reluctant to make use
of this ? For one, most Indians have become very
used to passively following their doctor’s
advise.
Questions are not encouraged in India – either
in the classroom when we are students, or in the
doctor’s clinic when we become patients. Also,
medical jargon can be intimidating, because it is
unfamiliar ( since many words are derived from the
classic languages such as Greek and Latin) and is
therefore difficult to follow – so must of
us would rather not take the trouble of researching
our problem independently.
Many intelligent people are also worried that a
" little knowledge is a dangerous thing "
and are anxious that they may become "half-baked"
doctors or hypochondriacs. There is also the worry
that knowledge about medical diseases ( and all
the nasty complications they can cause ) can result
in an increased fear about death and dying - and
most people would much rather not come to terms
with their own mortality.
Many people also prefer to leave everything upto
their doctor - after all, that's what you pay him
for, isn't it – why confuse yourself with
alternatives and options ( the " doctor as
a highly paid technician " approach). Another
problem is that there are still very few sites about
health and medicine in India ( most websites are
US in origin) with the result that a lot of the
information on the Net is irrelevant to Indians.
So how can you use the internet intelligently to
find out more about your medical problem ? Let me
start with a warning - it is unwise to try to diagnose
yourself – don’t try to play doctor
! If you have a medical problem I strongly recommend
that you seek a qualified medical opinion from your
own doctor, who can see you, conduct tests if necessary,
and diagnose you properly.
Once you have a diagnosis, your search for information
on the Net can become focussed and productive.
Search Engines
Searching for information on the Net is very similar
to looking up a book. You turn to the index to look
for a particular topic, and on the Net you can use
one of the many search engines available, such as
hotbot.com,
altavista.com,
excite.com
or infoseek.com.
The trouble is that these engines are unintelligent,
so that a search usually retrieves thousands of
websites– the majority of which are completely
irrelevant to your query - and it’s hard to
separate the wheat from the chaff.
Search engines are most useful when you are looking
for information on a rare problem, or very specific
information only.
Be sure to try several different search engines
when looking for information since each one can
have different listings included in their data base.
You also need to double check your spellings –
an error can mean you may not retrieve any useful
information at all ! Try to be as precise as possible
in order to retrieve relevant information only (
for example, if you are looking for information
on eye problems in diabetes, do a search on "
diabetic ocular complications".)
It’s easy to get lost in the flood of garbage
which a standard search produces, which is why many
patients often despair of ever being able to find
anything useful or understandable on the Net. In
order to make their life easier, experts have put
together evaluated subject gateways or medical search
engines, to make directed searching for relevant
information easier. As their name implies these
search services provide the user with a gateway
to medical resources on the Internet.
However, rather than provide a comprehensive ( but
unranked or unsorted ) listing of Internet sites,
only those that meet a defined quality threshold
are included.
The websites are also ranked, according to their
quality and usefulness, as determined by these experts.
These gateways are produced by medical libraries,
doctors and other organizations, and are useful
to both new Internet users - who may be unsure where
to begin - and experienced surfers who are frustrated
with ploughing through the inevitable volume of
irrelevant dross when using any of the more general
search tools.
Examples of such gateways
for patients include:
www.healthatoz.com,
www.
achoo.com,
www.medhelp.org,
and HealthyWay.
If you are a novice, it can be helpful to have a
friendly doctor ( or medical student ) or a librarian
to guide you with your first few searches, to teach
you how to search efficiently. ( Librarian-mediated
searches are available at HELP.) If you want a comprehensive
search of the Internet you must be prepared to search
multiple gateways and search engines – the
much sought after ‘one-stop information medical
source’ has yet to appear. Remember that there’s
a lot more on the Net than just tons of textual
information on thousands of websites –you
can admire anatomy in three dimensions thanks to
virtual reality, and even watch video clips of surgery
online ! However, mining the Net for information
need not be a one-dimensional affair – the
real charm of the Net lies in its interactivity
, so that you can get a response to your queries
!
Online Doctors
There are many doctors and health professionals
on the internet who will respond to medical questions.
The premier site on the web for this service is
America's
Doctor Online, which offers free real-time one
on one chat with a real doctor - but you have to
be patient for your turn, as this is a very busy
site! These responses are meant to educate the questioner
and the public and cannot be a method of rendering
personal medical care. Occasionally a response might
be directly by email, but most sites use the bulletin
board forum and archive all the responses ( what
are called FAQs or frequently asked questions) ,
so that everyone can search, view, and benefit from
the information.
Chat Sessions
There are also a few live question and answer chat
sessions. If you can't make the scheduled chat time,
then at many of the sites you can post your question
ahead of time and return later to view the transcripts
of the chat and see if your questioned was answered.
During the live discussion sessions, you need to
ask your question through a moderator and whether
or not your question gets answered depends on the
number of participants and their questions.
Email, Newsgroups, Listsevs
and Mailing Lists
Newsgroups, which are also called Internet Discussion
Groups, function like electronic world wide bulletin
boards.
In a newsgroup you can post or view messages or
reply to someone else's.
There are thousands of newsgroups open to the public,
and you can use Deja News
(www.dejanews.com)
to find the one of interest to you.
LISTSERVS, also called mailing lists, are a way
of communicating with others via email on various
topics of interest. To search for a particular LISTSERV
topic go to www.liszt.com.
You’ll find there's a support group in cyberspace
for just about any medical problem, and instead
of being limited to a few local patients, you can
communicate with dozens of people going through
the same things you are .
The Internet also provides a cloak of anonymity,
and this is particularly important with illnesses
that carry a social stigma, such as infertility
or AIDS.
If you have been able to identify an expert on your
problem, it is also possible to send him an email
directly, and he may then reply to you. You can
find email addresses of doctors through a little
bit of lateral thinking. Many leading clinics, hospitals
and medical colleges have websites which list the
names, addresses and emails of their faculty members.
Another option is to use an email search engine
, such as four11.com.
Also, many authors of medical journal articles now
include their email addresses along with their institutional
address.
Once you’ve found the information, how do
you evaluate it ? This is still the most difficult
part of searching for medical information, and unfortunately
many patients become misinformed thanks to the Net.
The problem, of course, is anyone can publish on
the net – and it’s not easy to make
out whether the information being presented is credible
or not ! A good website should be accurate, useful,
credible , readable, uptodate and have useful links
to other sites - but the most important guideline
is to find the source of the information ! Web sites
built by well-respected medical institutions and
government health agencies such as the
US
Government’s Healthfinder ,
Mayo Clinic's Health O@sis ,
Johns
Hopkins' InteliHealth ,
and Dr. Koop's Community
All provide consumer-friendly health information
and are reliable sources.
Remember that a lot of the medical information on
the Net is designed for the doctor, and this can
be quite complex to understand, because it is primarily
written for medical professionals.
However, this is usually the most reliable, and
many leading medical journals now available on the
Net , such as the British
Medical Journal, the Lancet,
New
England Journal of Medicine and the Journal
of the American Medical Association, only publish
studies after they have been carefully reviewed
by leading doctors .
Though these may look intimidating, you don’t
need a medical degree to read them – each
one has a conclusion and a summary that contain
most of what you’ll need to know.
It is important to think about how much information
you need from the Net to make yourself comfortable
with your diagnosis and treatment options.
Some people need as much information as they can
possibly gather, while others find less information,
or information with a specific focus, is best for
them.
A warning - do not
accept the contents of any single website as definitive.
It is in the nature of medical research that many
studies contain errors, many conclusions are false,
and many reports flawed.
This is why you need your doctor’s help to
make sense of your information search, because he
can best explain to you how the information you
have unearthed applies to you as an individual.
You need to form a partnership with your doctor
- but it should be a partnership of well-informed
equals , for which you need to do your homework
first ! Remember that the information you retrieve
on the Net is simply a tool to help you to get better
medical care – it should help to improve the
communication between you and your doctor –
not replace it !
Ready to start your research on the Net ? Another
useful guide is
The Patient's Guide to Healthcare Information on
the Internet.
If you would like more detailed information, then
look at
The Doctor's Guide to
the Internet.
This is based on an article I wrote for Times
Computing.
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