from
the book How to Have a Baby: Overcoming Infertility
by Dr. Aniruddha Malpani, MD and Dr. Anjali Malpani,
MD.
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Ethical Issues - Right or Wrong?
Table of Contents
How
can you use the internet intelligently to get the right
treatment ?
How
can you get a second opinion on the internet ?
What
are some of the other useful websites for infertile
patients ?
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.
How
can you use the internet intelligently to get the right
treatment ?
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 http://www.google.com/, http://www.hotbot.com/, http://www.altavista.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: http://www.healthatoz.com/, http://www.achoo.com/, and http://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!
How can you
get a second opinion on the internet ?
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 www.drmalpani.com/malpaniform.htm,
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.htmlallows 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 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 (http://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. 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
http://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!
What
are some of the other useful websites for infertile
patients ?
Useful websites for infertile patients
include the following: Fertilethoughts at http://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
http://www.inciid.org/ is rich with valuable information;
http://www.ferti.net/, provides an international
directory of infertility clinics; http://www.ivf.com/ has a lot of practical information
for infertile patients; while the Resolve website at
http://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 http://www.conceivingconcepts.com/, books on infertility
from http://www.amazon.com/, and even software to help
you to chart, analyze and predict your fertility cycles
from http://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!
Next page: The
Ethical Issues - Right or Wrong?
Previous page:
Let the reader beware - making sense of medical stories
in the news
Table of Contents
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