The Infertile Patient's Guide to the Internet
From the book
How to Have a Baby: Overcoming Infertility
by Dr. Aniruddha Malpani, MD and Dr. Anjali Malpani, MD.
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 http://www.google.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!
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 Free Second Opinion Form, 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.
Blogs by Expert patients
Many expert infertile patients are now online . This is the new generation of e-patients - well informed, engaged , empowered, enabled and happy to share their expertise with other infertile couples. Many now have blogs , in which they talk about their experiences and provide helpful advise. They can be very helpful sources of advise, as they have personally experienced infertility, and can be empathetic and unbiased. You can find a very complete listing of infertility blogs at http://www.stirrup-queens.com/.
Starting your own blog is a great way of helping others. You can put your hard-earned expertise to good use - and helping others is the best way of helping yourself. You can see an Indian patient's blog at www.myselfishgenes.blogspot.com
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 (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! You can the Medical Jargon Buster at http://www.medexplain.in/pubmed.php to help you make sense of your Medline
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, up to date 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 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.drmalpani.com/store.htm; 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!