Saturday, September 29, 2012

Why aren’t patients better informed ?

Most people want to live long and healthy lives. Thus , when they fall ill, they are thirsty for information and want to find out all they can about their illness and their treatment options , so that they can get the best medical care . It seems to be common sense that every patient would want to know as much as possible about their illness. However the fact  remains that patients are still very poorly informed about their medical problems .

The question that arises is - Why is this so ? Is it that some people are so dumb that they just can't figure out what's happening to them and their bodies ? Or is it that some people are so passive that couldn't care less and are simply not willing to invest the time and effort needed to educate themselves ? Or is it that some patients have so much trust and confidence in doctors that they don't feel the need to find out anything
more ?  I don’t think it’s any of these !

I think the most important reason is that doctors have not done a good job of educating and informing patients - we have failed our patients  ! I think patients need to know and want to know , but for multiple reasons , doctors haven't done a very good job at communicating this information to them.

Part of the reason may be historical , when doctors felt that patients were too immature to understand all the medical intricacies and details ; and that if they had a serious problem it was better to hide this information from them , so they wouldn't get unnecessarily worried. While this kind of paternalistic approach may have been appropriate in the past , it's clearly not acceptable today ; but this attitude still persists, and some doctors patronizingly tell patients - Don't worry your head about this – there is no need for you to waste time doing a Google search - I will sort out all your problems for you !

It's not just doctors who have let patients down - the health insurance industry ; pharma companies; medical device manufacturers; and the government have failed as well. They all have a duty to educate and inform patients. I think some “experts” still assume that patients are not capable of understanding complex medical terms. The reality is we have not spent the time and energy to develop the tools in order to educate and inform patients in terms in which they can understand ! Everyone has different learning styles , and we need to tailor our messages so that the information we provide to patients is patient friendly ; available to them in a format which they understand ; and at the time and place at which they need it .

Given the ubiquity of the internet, providing online information is a great opportunity to fix the problem, and it would be a shame if we frittered it away ! This is a chance to change the entire way the health care system works.  The goal would be to create a platform where patients can educate other patients,  because patients are far better at doing this than doctors and other healthcare experts. 

The expert patient understands a lot not only about his own body and the disease, but about the illness;  how it affects individual’s hearts and minds; and can provide invaluable information about how to deal with the healthcare system ( something which most doctors are clueless about because they are part of the system and don’t understand how dysfunctional it is from the patient’s perspective !)

If this platform were created , then doctors and hospitals would not even need to create resources for patient education , because patients would do it for themselves. This would be copy right free; and available in many different languages and formats. Even better , this would create a positive virtuous cycle where patients can consume and create  as they learn more about their illness !

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