April 26, 2011 -- For more than a decade, Helen Osborne drafted health education material, but when she was diagnosed with breast cancer in 2006 and her doctor gave her a printout that was supposed to help her understand her condition, she said she couldn't make heads or tails of it.
"I had no idea what I just read," said Osborne, who worked with a variety of medical centers and organizations, including the National Institutes of Health. "I could not even absorb it. I was totally floored."
Osborne, 62, of Natick, Mass., reached out to her colleague at the National Cancer Institute to vent her frustration. She told her friend that she didn't understand why the printout recommended that she see numerous specialists, including a medical oncologist and a radiation oncologist.
"Who exactly are these folks anyway?" she recalled asking her colleague.
"Well, Helen," she recalled her colleague say, "You wrote a whole booklet about this topic already."
Although Helen is highly educated and considered extremely literate, she is one of many Americans who, regardless of their education level, at times struggle to understand health information.
Nearly half of American adults, including doctors themselves, have poor health literacy, according to a report by the Institute of Medicine. Many struggle to understand instructions on prescription drug bottles, doctors' notes, health insurance forms, and educational brochures.
And many studies suggest that understanding health information could mean the difference between life and death.
Surveyed heart failure patients who had low health literacy were more likely to die outside of a hospital setting than those who were considered health literate, according to a study published Tuesday in the Journal of American Medical Association.
"When you have something going wrong, there are many self-care components," Osborne said. "So that takes a wide variety of skills to know why you need to do it, do it consistently and perfectly over time for a good part of your life."
But literacy and health literacy are not synonymous terms, said Osborne, who founded Health Literacy Consulting.
"If you're struggling to read, of course you'll have trouble with health information," she said
But health information is often hard to decipher on your own.
"The fact that I love Shakespeare does not mean I'll have good health," said Rima Rudd, senior lecturer on society, human development, and health at the Harvard School of Public Health. "The mistake in research has been to focus on skill level of patients rather than on the information presented to them."
The responsibility lies in large part with some health experts who don't effectively communicate health information with the patient, according to Rudd.
But it's also due in part to some patients who don't ask for clarification when they need it, Osborne said.
Deciphering Medication Label One-Liners
The hard-to-decipher medical information is also found on many pill bottles and medication boxes likely to be found in any medicine cabinet.
Words like "risk," "probability," "range," and "normal," are hardly ever defined. Even a simple line that asks you to take medication with "plenty" of water but doesn't specify what that means, or a line directing you to take a certain medication "four times daily" but doesn't specify when or how far to space out the dose can be a problem.
"Jargon is a secret language, and if you're not in on it then you won't understand it," Rudd said.
But many researchers, including Rudd are implementing methods to help health experts better communicate with patients.
One method, says Rudd, is to change the way experts ask questions. Simple questions like, "do you have any questions?" can turn to, "how can I help answer your questions?"
"It's known as the teachback method -- actively creating an environment for questions and understanding," Rudd said.
Also, Rudd says health communicators should pilot test text material to see whether it's easily understandable among a test group.
"I think it's a criminal offense for anyone to write health information on managing your diabetes for example, not pilot test it and simply press the print button for all to have."
While researchers work to reform how health providers communicate, patients can take proactive steps to better understand medical information, Osborne said. It's a simple list of advice that she says she wish she'd known throughout her breast cancer diagnosis.
"Make sure you really understand what you're really supposed to do," she said. "Make sure you ask questions. Bring someone with you. Create a notebook."