While it is true that your doctor is your most valuable source of information, do not forget that there a number of other resources you need to tap before making crucial medical decisions which can affect the rest of your life! These resources include books, libraries, CDs and the Internet. Its not always easy to get information, but patience and persistence can help you find precisely what youre looking for! Its mandatory that you trust your doctor, but its also a good idea to verify his advice. Thus, if your doctor recommends surgery and you confirm through an independent source that his judgement is right, you build up even more confidence in him. Remember that knowledge builds up trust! Doing your homework will also allow you to make more constructive use of your doctors valuable time, so that you can ask him focussed questions, relevant to your particular problem.
TAPPING OTHER SOURCES OF INFORMATION
Do not forget to visit the prime fount of knowledge, i.e., the library - after all, librarians are professional information specialists! Next to an extensive and leisurely consultation with your doctor (which is next to impossible in this day and age for most of us!), the library is the best place to get your questions answered. Most public libraries (such as the British Council and the USIS) stock a fairly wide collection of medical reference books and journals. Also, India now has its first consumer health library, especially designed to help the layperson find information on any medical problem. This library, known as the Health Education Library for People (HELP), has a vast array of over 6000 books, 10,000 pamphlets and 500 videos - all meant for the layperson. This is a public library (address: Om chambers, Kemps Corner, Mumbai 400 036) and is an excellent place to start your research ! It can be visited on the Internet as well at http://www.healthlibrary.com!
HELP, also offers an innovative MISS-HELP (Medical Information Search Services from the Health Education Library for People) facility in which librarians compile customized information packages, tailored to your specific problem. This facility costs Rs. 300-500 (about the cost of a medical consultation!) and provides you with about 100-125 pages of intelligible information, pertaining to your particular problem, delivered to you at home!
If you are unfamiliar with a particular topic, a medical encyclopaedia is probably the best choice for garnering information. For an excellent overview of just about any medical condition, the ideal guides include the following: The American Medical Association Encyclopedia of Medicine or the British Medical Association Family Guide. Penguin India has also brought out a Family Medicine Guide meant specifically for an Indian audience. A reliable medical dictionary, such as the Mosby Medical Encyclopedia or Merriam-Websters Medical Desk Dictionary, can help you make sense of seemingly convoluted terminology. Another publication, The Merck Manual (home edition), is a superb compendium of almost every known disorder and describes causes, symptoms, laboratory test, diagnosis, treatment and prognosis.
Your local library may also be able to provide you with useful medical directories which can guide you to further sources of information. For instance, The Self-Help Source Book, which lists more than 700 organizations, can help you find a suitable support group. Also, The Consumer Health Information Source Book provides information on clearing houses, useful books, and other resources, while the three-volume Medical and Health Information Directory lists various organizations, publications, libraries and health services.
If you possess a computer , you can use CDs effectively, to research your problem. Two worthwhile CD-ROMs are the American Medical Association Family Medical Guide and the Mayo Clinic Family Health Encyclopedia. One advantage of CDs over books is that they offer you with computer graphics and even video clips.
The Internet is the ultimate information resource - its like a library which is open 24 hours and which provides a wealth of information on any and all health and medical topics ! A lot of the medical information on the internet is specifically designed for the intelligent layperson, probably keeping in view Albert Einsteins sagacious words: Nothing is so difficult that it cannot be understood! The relevant question is: How does one go about finding this information? The Internet has made searching for information remarkably easy, so that you can locate the information for yourself. This exercise can also be a lot of fun - remember that you learn a lot by serendipity !
If you are looking for information on a specific topic, you need to use one of the Internets search engines, such as Hotbot (www.hotbot.com). Simply type in the terms (keywords) you are looking for, and the engine will point you to the relevant information you need. (A warning for novices: You may also be inundated by a flood of garbage, so you will need to carefully sift through what you find!) There are many useful sites which provide consumer health information; for example, http://www.healthanswers.com has a superb collection of patient information leaflets on thousands of topics. The remarkable feature about locating a useful site is that it will often have a wide range of links, which will, in turn, point you to other helpful documents, from which you can retrieve even more information.
The Internet offers a number of additional options for acquiring more information on specific topics. There are electronic mailing lists available on many diseases (for example, cancer-l deals with cancer) which allow you to network with people from all over the world, so that you can keep yourself updated. You can also send out e-mail to leading medical clinics and medical specialists from all over the world, many of whom will be happy to reply to you - free! There are also special-interest Usenet news groups (for example, sci.med.aids deals with AIDS), so that you can talk to thousands of people from all over the globe, who may be facing similar problems!
Everything about the Internet is, however, not hunky-dory. One may very well ask: What are the drawbacks of using the Internet as a source of information? For one, please dont have unrealistic expectations as to how the information can help you; after all, such information simply serves as an aid which can further guide you in your search for the best medical care! Also, you may not be able to find exactly what you need; you have to practice a good deal before you can hit the bulls eye. You also need to be aware of the fact that not all the medical information available on the Net is reliable; you need to assess it critically (this is true for all information, whether it comes from a book, your neighbor, your stockbroker or your doctor!).
Once you have found as much information as you need about your problem, you then need to process it so that you can understand what treatment options are open to you. Your doctor (or a friend or relative who is in the medical profession) can be very helpful in explaining to you exactly which portions of the information you have unearthed are applicable to your particular problem. You then need to decide which treatment option is the best for you. For example, for patients with infertility, the options will include: adoption; child-free living; or taking medical treatment. Remember that there are always going to be choices - you need to be able to choose intelligently amongst them. You should keep the following factors in mind: (1) What would be the costs involved (for each option)? (2) What benefits would accrue? (3) What are the risks involved? (4) What are the alternatives available?
Drawing upon management models, it is useful to construct a decision tree to analyse the various alternatives. In the USA, a new group of professionals, has come into being, called medical information consultants, who specialize in helping patients carry out this type of analysis. However, if you look upon this activity as a business exercise, it is really very similar intellectually to a SWOT (strengths, weaknesses, opportunities, threats) analysis.
What is the possible downside of gathering such information? For one thing, you may come up with so many options that it becomes very difficult to make a decision. You may then be paralyzed into inactivity. Although it is difficult, it is absolutely critical that you actually do make a timely decision. If you dont, you may end up without any treatment, rather than getting the best treatment! (You may also find that most of the options are equally promising. If this is the case, then just pick any one of them!) Too much information can also often leave you feeling confused. Its obviously much easier to remain passive and to allow the doctor the freedom to do what he wants; why break your head over something you will never fully understand anyway is a common rationalization many patients resort to. However, it is far better to be confused because you know too much, rather than because you dont know enough. After all, there is little to be gained in complaining about shoddy medical care after a problem arises because of your ignorance! You may also be worried that your doctor may become upset if you ask too many questions: suppose he turns nasty and asks, who is the doctor here? However, such a mindset reflects an archaic paternalistic attitude, and if your doctor refuses to help you find and analyse information about your medical problem, you should consider looking for another doctor ! Having a medical problem is bad enough, but the real tragedy is having a medical problem which can be treated, and not getting the right treatment! The ultimate rewards of doing your homework will be your peace of mind that you did the best you could!
HOW TO RESEARCH THE MEDICAL LITERATURE
How does one go about researching the medical literature ? Before starting your research, you need to obtain some basic information about your medical problem, particularly a complete diagnosis. Only your doctor can provide such a diagnosis, apart from explaining what alternative terms can be used to describe your condition so that you can gain the fundamental knowledge to begin your research. Make sure you get the spellings right - write them down! Of course, for some complex medical problems, it may not be possible to even come to a diagnosis, but such cases are rare.
You should also spend a little time thinking about exactly what kind of questions you want answered: remember, GIGO (garbage in, garbage out). The more precise the nature of your questions, the easier it will be to find answers to them! Thus, it would be counterproductive to look for everything about diabetes. A more realistic query could be: Is it possible for a diabetic to control his blood sugar levels without medications? You might also want to search for newer treatment options such as pancreatic transplants, or look for a world-renowned expert who specialize in treating diabetic complications affecting the eye.
As your doctor can answer many of the questions connected with your problem, it would be sensible to ask him first and then start searching the medical literature. If you have a question about a specific symptom or a side-effect that you are experiencing, or about the interpretation of test results, your doctor certainly should be your first source of information. Again, if you want to know the precise success rate of a proposed treatment, or about the side-effects, you should first ask your doctor, although in these cases, it might also be reasonable to look into the issues yourself, especially if you arent satisfied with the answers youre getting, or if you just need to know more details than what your doctor can provide due to lack of time.
Researching medical literature is not like a single path that proceeds straight from the initial question to the final answer; it is actually more like a cycle. Initial questions lead to references which lead to other papers, which, in turn, again, lead to more references, and more questions; and the process continues. Eventually, you will zero in on the information that is the most valuable to you. This process cannot usually be completed in a single day. The research cycle will probably take you to a wide range of medical databases, doctors, and medical libraries. It is helpful to pretend that that you are the ace defective Sherlock Holmes, looking for a vital clue!
It is very important to understand the differences among references, abstracts, and papers. References are just what the world means: references to published journal articles and sometimes to books and conference proceedings. A reference normally contains the title and the authors of the work as well as the name of the journal, the year, the volume number, and page numbers as appropriate.
Given a particular reference, you can look up the relevant paper in the medical library. (A paper could be an article published in a journal or proceedings of a seminar or conference.) An abstract is a short summary of a paper. Skimming through an abstract is usually sufficient to determine whether or not a paper is interesting enough to actually be worth looking up at the medical library. Almost all papers start with an abstract, and high- quality medical databases such as MedLine (an international database of the medical literature, collated by the National Library of Medicine, USA) contain abstracts for a majority of the references. The paper is the actual report of the work, and contains all of the details on the background, methods, results, and conclusions. Every paper also contains a list of references at the end. Please remember that all medical references, abstracts and papers are bound to be full of medical jargon as they are primarily meant for the medical fraternity.
Many sources of references to medical papers can be tapped, such as:
- Other papers. Every paper in the medical literature contains a list of references at the end. Often this list is both lengthy and comprehensive.
- Your doctor. Many doctors are quite willing to give you references and even xeroxes of papers supporting their positions on treatment questions. All you have to do is ask!
- Medical databases. Databases such as MedLine are by far the most effective way to find references, although some effort is required to learn how to use these resources intelligently. You can carry out MedLine searches free on the Internet (for example, at www.healthgate.com). The huge size of these databases with millions of references and abstracts from thousands of journals means that if the information you seek has been published, the references are there. The ability to focus your search on keywords that interest you allows you to extract the specific references that pertain to these words. The biggest drawback with regard to these databases is that you are swamped with too much information, not too little!
It is important to determine beforehand how much information you actually need to make yourself comfortable with your diagnosis and treatment options. Some insatiable gluttons need as much information as they can possibly gather! Others find that less information, or information with a specific focus, is the most appropriate for them. Some patients find it helpful to hear only the good news; others want the whole picture, including the negative possibilities. Again, let your doctor know what precisely your needs are. He or she can provide you with printed matter or other sources of information, as well as point you towards other potential resources that can help you gather whatever information you find necessary.
Do not accept the contents of any single journal article or book as definitive. One should bear in mind that all scientific inquiry involves human fallibility, could be prone to errors. Also, many conclusions are false and many reports flawed. Even research conducted and reported over many years may eventually be proven to be false, which is why you need to seek your doctors help to make sense of the wealth of medical information available to you. He or she can explain to you how the information you have unearthed applies to you as an individual. In other words, you need to form a partnership with your doctor, but such a partnership should be one between well-informed equals, which is why you need to do your homework thoroughly first !