Are you health illiterate?

When it comes to personal health, 'ignorance is death.' The cost of health illiteracy is staggering.

Modern medicine is complicated, which is what smart doctors are for, right? Well, maybe not. More and more experts think the key to better outcomes is a smarter patient - one who is informed about personal health. An article published last week says doctors should dumb down their instructions to patients. I think that idea is even dumber.  

The article - by doctors at Thomas Jefferson University in Philadelphia - says that doctors should assume that in general, patients do not understand medical advice.  In other words, until proven otherwise, doctors should assume that patients are illiterate in health information.  Therefore, they should avoid using medical jargon when explaining diagnosis or treatment to the patient - unless the jargon is essential, in which case it should be explained clearly.  The authors also say that in general, when doctors talk to patients, they should speak or provide written handouts aimed at the grade five or six level.  When speaking, the authors say doctors - should - speak - slowly - and break down information into small manageable steps.  There's a lot more, but you get the drift.

The authors say studies show that more than a third of adults living in the U.S. have limited health literacy, making it more difficult for them to read, understand and apply health information.  That includes information presented on medication bottles, hospital discharge instructions, consent forms patients sign prior to surgery, medical forms, and health education handouts.  Studies show that more than 75% of patient educational materials are written at a high school or college reading level - far above the average American patient.  I have no reason to think Canadian patients fare any better at reading comprehension.  Patients don't understand a lot of the words doctors use. They also don't understand the way we use numbers.  

It's disturbing to realize that doctors and patients overestimate how much patients are capable of absorbing.  Turns out there are real tools out there that assess health literacy. REALM-R is a word recognition test in which patients are asked to de-code or pronounce medical words like anemia, jaundice and colitis. It screens for poor literacy skills.  The Short Test of Functional Health Literacy in Adults assesses reading comprehension and numeracy skills over two prose passages and four items assessing numerical ability.  There's also a longer version of this test with three prose passages followed by a 50-item reading comprehension section.  The Single Item Literacy Screener has just one question:  How often do you need to have someone help you when you read instructions, pamphlets or other written material from your health professional or pharmacy.

Poor health literacy contributes to lower health standards and health disparities between informed and uninformed patients.  Poor health literacy has been cited as a factor in patients not following doctor's instructions, not taking medication properly and often not taking it at all. Studies show health illiteracy leads to longer stays in hospital and rising rates of poorly managed chronic diseases like type 2 diabetes and high blood pressure.  It leads to lower success rates curing cancer.  Not surprisingly, it also leads to bad health outcomes and in some cases to higher mortality rates.

To boost health literacy, the first thing patients should do is tell the doctor when they don't understand. Don't be shy, and don't worry about taking up too much of the doctor's time.  As well, if you feel you need it, bring a family member or friend to ask questions on your behalf.  If it helps, use your smart phone or tablet to record the conversation.  

There are lots of things health professionals should do.  Patients don't get the way doctors use numbers. Some patients don't understand what it means to have a five percent lifetime risk of getting colorectal cancer. But they do understand it when the doctor says one out of 20 people will get colorectal cancer during their lifetime - and 19 out of 20 won't get cancer.  

Another thing health professionals can do is hire health coaches, something we featured last season on White Coat, Black Art.  Health coaches are knowledgeable lay people who can fill in the information gaps left during quick encounters between doctor and patient.

It's telling that there are a growing number of online courses for health professionals on how to speak more clearly to patients - few if any courses aimed at raising the health literacy levels of patients.  That has to change.  I think governments would do well to make health literacy a core competency for Canadians - right up there with reading, writing and arithmetic.  

Brian Goldman is the host of CBC Radio One's White Coat Black Art, which returns with new episodes this fall.  He is also the author of The Secret Language of Doctors. Stay tuned for more information about our exciting new season.  


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