The Wall Street Journal
FROM THE ARCHIVES: July 3, 2003

The Informed Patient / By Laura Landro

Tips to Better Understand Those Doctor's Orders

Diagnosed with Lupus 21 years ago, Betty Walker was always confused by her doctors' explanations of the autoimmune disease, which causes fever, skin rashes and arthritis. "I had a disease in my body I knew nothing about," says the 55-year-old Shreveport, La., mother of four. "Most of the time doctors don't even realize they are talking way above a patient's head."

These days, Ms. Walker is telling doctors how to communicate better with patients as part of a new health literacy program sponsored by the Partnership for Clear Health Communication, a coalition that includes the American Medical Association Foundation, the American Public Health Association, the National Coalition for Literacy and pharmaceuticals company Pfizer Inc.

In addition to appearing in a video for physicians and policy makers, she talks with interns at nearby Louisiana State University Health Sciences Center about how to help patients like herself who feel intimidated or don't understand medical terms.

Though most educated American consumers might be loath to admit they don't know the difference between an aorta and an aneurysm, studies show as many as half of all adults in all socio-economic levels struggle with health literacy, defined as the ability to read, understand and act on spoken and written health information from medical professionals. According to the health literacy coalition, 80% of patients forget what doctors tell them as soon as they leave the office -- and half of what they do recall they remember incorrectly.

"People find it very embarrassing in this country not to know something and to have to ask for help," says Ruth M. Parker, associate professor of medicine at the Emory University School of Medicine and internist at Grady Memorial Hospital in Atlanta who believes the literacy and quality issues go hand in hand. "We have to create an environment that makes it OK for people to ask questions, and then empower them to do it." Dr. Parker is serving on the Washington, D.C.-based Institute of Medicine's Committee on Health Literacy, which is examining the root problems that underlie health illiteracy, and plans to recommend solutions. The IOM, part of the National Academy of Sciences, advises the government on policy issues.

Though patients clearly have to shoulder some of the responsibility if they fail to take notes or ask questions when they don't understand something, it is often hard to focus or even absorb information when you are hearing a frightening diagnosis. Experts say medical professionals need to translate complex medical jargon and explain things in layman's terms

"We are dealing with complicated medical issues, and expecting patients to take more and more responsibility for their own care," says David W. Baker, chief of the division of internal medicine at Northwestern Memorial Hospital in Chicago and a leading researcher in doctor-patient communication. "But what we are asking of patients is frequently beyond their capacity to comprehend this information."

At Northwestern and other hospitals, doctors are experimenting with audiovisual aids such as drawings and multimedia presentations to explain bodily functions and conditions. Studies show even highly literate patients recall a doctor's instructions better if they use diagrams and pictures to illustrate a point. Northwestern is also using its electronic medical record system to let patients log on to review presentations and re-read treatment plans. But since few doctors and hospitals have electronic medical records yet, patients should always ask for written information as a backup.

Rima Rudd, a health literacy expert at the Harvard School of Public Health who also serves on the IOM committee, says patients should insist that doctors speak in layman's terms, for instance, calling it a heart attack rather than a myocardial infarction. "The specialized language of the medical profession is inappropriate for dialogue with the average person," she says. She urges patients to ask questions if they don't understand something, and find out if hospitals have patient and family libraries with librarians who can help them.