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.