The Infertile Patient's Guide to the Internet
from the book How to Have a Baby:
by Dr. Aniruddha Malpani, MD and Dr. Anjali Malpani, MD.
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Most infertile patients are hungry for information - and " Look it up on
the Internet "is fast becoming the standard prescription for any infertile
couple. Medical journals, text books, encyclopedias, research papers, and huge
medical 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
infertility 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 people still prefer to leave everything up to 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 infertility 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 ! Please 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.
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,
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 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 . 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. A cybercafe is a good place to learn how to surf! 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 !
Online Doctors and Chat Sessions
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 http://www.fertilethoughts.net/malpani/
where the authors of this book, Dr Malpani, answer 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.
EMAIL, NEWSGROUPS , LISTSERVS 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 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
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.
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!
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 !
by Dr. Aniruddha Malpani, MD and Dr. Anjali Malpani, MD.
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