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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
www.hotbot.com,
www.altavista.com,
www.excite.com or
www.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 doublecheck 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. Thus, looking for "laparoscopic
surgery for treatment of endometriosis" will give you more useful
results than just looking for "endometriosis".
It’s easy to get lost in the flood of garbage which
a standard search produces, which is why many infertile couples 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, and
www.medhelp.org.
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.
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 laparoscopic 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.
There are many infertility specialists on the
internet who will respond to medical questions – free ! The premier site
on the web for this service for infertile patients is at
Ask the Doctor where Dr Malpani
answers queries sent by email.
These responses are meant to educate the questioner
and the public and cannot be a method of rendering personal medical
care. All the questions and answers are archived ( what are called
FAQs or frequently asked questions), so that
everyone can search, view, and benefit from the information.
INCIID Interactive Infertility Forums at
http://www.inciid.org/interact.html allows access to many medical
forums (where you can get answers to queries from medical experts);
support forums (where you can interact with other infertile couples);
and frequent online chat sessions on various topics.
Newsgroups, which are also called Internet
Discussion Groups, function like electronic worldwide bulletin boards.
In a newsgroup, you can post or view messages or
reply to someone else's. There are many newsgroups for infertile
couples, including: alt.infertility, alt.infertility.primary,
alt.infertility.secondary, alt.adoption and misc.health.infertility.
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, ranging from miscarriage to endometriosis, 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 safe cloak of
anonymity, so you never need to reveal your identity. There are now many
online communities of infertile couples, who network with each
other, and provide much needed emotional support and practical
information. A good example of such a support group, which uses bulletin
boards to allow couples to "talk" to each other is at
www.fertilethoughts.net. You can post your message online, read
about other’s problems – and offer advise as well.
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. For example, many leading infertility
clinics have websites which list the names, addresses and emails of
their faculty members. Also, many authors of medical journal articles
(which you can find on the
Medline database)
now include their email addresses along with their institutional
address.
If you want to find out information which is on the
cutting- edge of research, or read articles which have appeared in
medical journals, then you need to search the Medline database. This
MEDLINE database (maintained by the National Library of Medicine in
Bethesda, Maryland, USA at
http://igm.nlm.nih.gov/) is the best way of retrieving medical
information today. This database has over 10 million references, and
indexes all articles published in reputed medical journals from all over
the world. It’s quite easy to learn to do a Medline search – and there
is plenty of online help available as well !
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.
Useful websites for infertile patients include the
following: Fertilethoughts at
www.fertilethoughts.net is a comprehensive site, which has
information on infertility, adoption and surrogacy. You can also post
your own story online in the Personal Histories section – and read about
other patient’s experiences as well. There are many bulletin boards and
chat rooms as well, so you can network with other couples.
http://infertility.about.com/ is an excellent starting point,
for infertile couples who would like to explore the internet. It
provides reviews of selected valuable sites, thus offering you a guided
tour of the net so that you don’t get lost.
FertilityCoach at
http://www.fertilitycoach.com offers very useful coping techniques
for infertile couples, and shows them how coaching can be used to help
themselves through this difficult time in their life.
The International Council on Infertility Information
Dissemination at
www.inciid.org is rich with valuable information;
www.ferti.net,
provides an international directory of infertility clinics;
www.ivf.com has a lot
of practical information for infertile patients; while the Resolve
website at
www.resolve.org has excellent information on advocacy for infertile
couples.
Remember that you can also use the internet to
order products to enhance your chances of conceiving. This is
especially helpful, because of many of these products are still not
available in India. Thus, you can order fertility testers and ovulation
monitoring kits from
www.conceivingconcepts.com, books on infertility from
www.amazon.com, and
even software to help you to chart, analyze and predict your fertility
cycles from
www.cyclewatch.com.
You can find our
favourite infertility
websites here !
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.
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