| |
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. It's not
always easy to get information, but patience and persistence can help
you find precisely what you're looking for! It's mandatory that you trust
your doctor, but it's 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 doctor's 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-Webster's 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.
TOP
The Internet is the ultimate information resource - it's 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 Einstein's 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 Internet's 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 don't 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 bull's 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?
TOP
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 don't, 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. It's 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 don't 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!
TOP
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 aren't satisfied with the answers you're 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.
TOP
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 doctor's 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 !
TOP
|
|
