You have just been to your doctor.
After hearing about some of your symptoms and looking through the form you filled out about your family health history, she recommends you have a test. She tells you the nurse will give you an information sheet before you leave.
You take the paper the nurse hands you and put it in your pocket, waiting to read it until you get home. Later, when you pull it out and begin reading, this is what you see:
“Your naicisyhp has dednemmocer that you have a ypocsonoloc. A Ypocsonoloc is a test for noloc recnac. It sevlovni gnitresni a elbixelf gniweiv epocs into your mutcer. You must drink a laiceps diuqil the thgin erofeb the noitanimaxe to naelc out your noloc.”
“Huh?” you say. “What is this test? Why did the doctor say I needed the test? What do I have to do to prepare for the test?”
The information in the box is taken from “Health Literacy and Patient Safety: Helping Patients Understand,” which is a manual developed by the American Medical Association to help bridge the communication chasm between health-care providers' “medical speak” and patients' knowledge and understanding.
The challenge in deciphering the medical gobbledygook in italic above mirrors the frustrations and confusion experienced by someone with low reading or comprehension skills or who is not proficient in the English language. For even a highly educated physician, the point is made: What is said or written by the health-care professional is frequently misunderstood by the patient.
Most words in the box are written backwards. Now read it again.
The Institute of Medicine defines health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”
The issue is tied to quality of care, reducing errors, patient adherence, lowering costs and a host of other factors affecting all levels of health care. That is why the St. Joseph Community Health Foundation is asking many of the agencies it is funding to implement a health literacy component, AskMe3, developed by the National Patient Safety Council, into the medically-related services the agencies provide.
“The foundation is embracing health literacy as an important component to realizing our mission of strengthening, improving and sustaining long-term community health in Allen County,” says Meg Distler(cq), foundation executive director. Citing the AMA, Distler said poor health literacy is a stronger predictor of a person's health than age, income, employment status, education level or race. Research shows 75 percent of all American have difficulty describing their diagnosis or treatment plan after leaving a hospital emergency department.
The AskMe3 initiative seeks to equip patients with the ability to answer three essential questions during and following a medical visit: What is my main problem? What do I need to do about it? Why is this important to me?
The foundation initially implemented the health literacy initiative with its Project Connect program for Burmese patients served by the Fort Wayne-Allen County Department of Health. Currently, 11 foundation grantees are using AskMe3 or some health-literacy-focused component.
Health literacy's impact on patient outcomes is also a driving force in the way doctors and nurses are partnering with patients at the Family Medicine Center of the Fort Wayne Medical Education Program. The clinic is a family practice medical residency site serving mostly low-income patients.
Healthcare providers “speak a lot of medical terminology. People don't want to appear they don't understand,” says Brenda Sowers, a clinic nurse. They compensate with smiles and head nods and may take information or referral forms home rather than read it at the clinic.
But who has not, at one time or another, been confused by what the doctor said, by the prescribing information for a medication or by test results? Does blood in the stool mean the toilet water will be red? What is a polyp? What exactly does the A1C test measure?
“It's recommended we speak at a fifth-grade level,” says Meg Wilson, director of research and scholarly activity at Fort Wayne Medical Education. Handouts should be written for 8th-grade level or below.
Even then, three-syllable words are best avoided, says Chris Ley, a nurse and quality director for the medical ed program. Ley helped develop a visual tool used by the clinic. An outline of the body is on one side of the page, with body systems noted. A list of symptoms, using simple words, is on the flip side. Patients who may not know the specific word for a body system or part but can mark the area on the drawing.
Even before patients arrive for a scheduled visit, they get a phone call from a nurse who reviews their health history since their last visit. What symptoms or illnesses have they had? What other doctors have they seen? Have they visited an ER? Have they had any medical tests?
The nurse becomes “detective,” Sowers says, gathering the information, sometimes from a hospital or pharmacy in another state. As challenging as it can be, this visit prep work lowers health-care costs and reduces errors. At the end of the visit, a printed clinical summary is given to patients.
The nurses say they have a crucial role in helping doctors simplify language and explanations and in engaging patients in their own health care. To that end they implementing patient advisory councils and patient education group visits through which patients give feedback on barriers to health literacy and recommend ways to address them.
“This is about patient-centered care,” Sowers said. “It's a real culture shift. Some patients, we say, are not compliant with treatment when it's really a health literacy issue.”