Thursday, October 3, 2013

Patient Advocate: Researching and Becoming an Expert

Researching and Becoming an Expert

You must be actively involved in making decisions about your own body.If you don’t understand the medical gobbledygook, the fault is not yours --it’s the doctor’s

Even the most complicated concept in medical science can be simplified enough for a layman to understand it. It is your doctor’s responsibility to explain your health problem and your treatment choices to you in simple terms. This will help you to make an informed decision about your treatment and this is important for obtaining patient-centered healthcare.

A good doctor must respect your intelligence, your desire to learn about your medical condition and your ability to understand what procedures he intends to carry out on you, so that you both can work together as a team in order to find the best therapy available for you. If your doctor doesn’t have the time or inclination to do so, or if your communication with your doctor is like a one-way street, then this is a red flag that you need to find a new doctor who is willing to actively engage you in your medical care. If this is not possible, consider hiring a patient-advocate who will help you make sense of your illness.

Medical science rarely has straight forward solutions, and what works for one person may not work for another. Every person is different, and everyone has different preferences. There are very few cut-and-dried protocols in medicine which can be universally applied to everyone. This means treatment of many diseases demands a patient-tailored protocol, depending upon your individual circumstances and wishes.

Good doctors encourage your participation in your healthcare, so that you can make an informed decision about what is right for you, according to your personal circumstances, beliefs and priorities. For this to happen, you should also strive to gain knowledge about your health problem. Being passive and dependent upon your health care provider for all your treatment decisions will not help you get the best medical care. You must do your own homework to find out what your options are, so that you can make a well-informed decision, and select a treatment protocol that you are comfortable with; which will improve your quality of life and maximise your chances of a good outcome.

The best-place to look for information is the internet, but not every site is trustworthy. It’s a good place to start, although not a very good place to end your search for the right information. It is important to double-check the online information with your patient advocate, and consult reliable government health web-sites because these are regularly updated with current information. The US and the UK governments have been leaders in the field, and their sites ( and are very useful - please bookmark them. The Indian government has sadly been a laggard in this field, but if you are looking for India specific information, try the Ministry of Health and Family Welfare (, The Department of Health Research (, and The Indian Council of Medical Research (

When you are in hospital, here is what you need to know about your medical records: Make sure you have copies of all your medical records- they are legally your property. You can give the doctor photocopies of your original reports for his files but keep the originals with you. They are worth their weight in gold. Also make sure that you understand what’s in your medical records- you must be able to make sense of your doctor’s hieroglyphics,, so you can explain your diagnosis and treatment to another doctor, if you need to take a second opinion.

Read up on your condition: Read as much as you can about your problem. A good doctor will arm you with printed material to read at home.

Read up on the doctor: You have the right to know the name of the doctor(s) treating you, their professional qualification, their special interests and their respective track records. If this information is inaccessible or not shared on the hospital website, you may need to dig deeper.
If you think you are not receiving the information or the level of care that you are entitled to, you can demand a transfer to another facility.
Additionally, you have the right to be informed of the possible financial implications of a proposed treatment plan at the time of admission. If there is a change in the medical condition or treatment protocol, and your costs are likely to rise, you should be told about this in advance and not be presented with an inflated bill later. You can accept or refuse any part of your treatment, after being informed of its risks, benefits and likely consequences.
Remember that you are always free to seek discharge against medical advice, if your dissatisfaction with the doctor or the hospital is extreme. You may be asked to sign a ’Discharge against Medical Advice (AMA)’ form, but you can’t be forced to stay in the hospital against your wishes - and if the hospital tries to do this (for example, by insisting that you have to clear all your hospital bills before they will let you leave), they are committing a criminal offense).

The above is an extract from Dr.Aniruddha Malpani's book : Patient Advocacy - Giving Voice to Patients
The book launch will take place on Saturday, 16 November 2013 at Hall of Harmony, Nehru Center, Worl, Mumbai - 400018 during the 4th Annual Putting Patients First Conference.

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