Counting on the fact that none of the people in attendance were at the premiere of the Health Education and Literacy program whitepaper on health literacy, she spoke for several minutes in Arabic and then asked the group if they understood when to take the prescription.
No one did.
Then she re-explained, using two simple handouts: one with numbers, a moon and a sun to indicate taking it twice a day—once in the morning and once at night; and a sheet with simple photographs. She pointed to the picture of the pill bottle, then the picture of a person putting the medication in their mouth (rather than the one with the person putting it in their ear). With some simple tools, everyone understood what to do, even without understanding the verbal instructions.
Health literacy is about understanding. This term is deeper than just being able to read, it’s being able to grasp crucial information about health topics. It’s been termed “The Newest Vital Sign” because understanding how to take care of your health affects treatment, medication and consent for procedures. It also affects important self-care activities, such as exercise, nutrition and sleep.
Literacy for Life, a non-profit organization in Williamsburg, Va., premiered this program a year ago. One part is educating the patients, which is done through 12 weekly sessions covering topics from stress management to first aid. “It’s hard to improve the system without educating patients,” says Joan Peterson, executive director of Literacy for Life, the organization which created the HEAL program. “We’ve customized the instruction to meet learners where they are.” Included in the curriculum are wellness topics, like dealing with stress and healthy living, but also practical topics such as finding a medical professional, making appointments and filling out forms.
The other part is educating doctors on how to identify low literacy in their patients using a toolkit from the American Medical Association (AMA). Staff from HEAL meets with doctors’ offices and staff to discuss health literacy topics. The training points out some clues, such as people forgetting their glasses or leaving their forms blank, but also missed appointments or not following up on labs or tests. Very often, people with low health literacy wont tell anyone that they don’t understand.
According to the AMA, a third of Americans lack the health literacy to undertake and execute needed medical treatment and preventive health care. That’s 89 million people who don’t know how to prevent disease (through hand washing or immunizations) or take their medication (prescribed or over-the-counter) or know when to go to the doctor versus the emergency room.
But it’s likely that everyone could use more clarity in the way health care instructions are given. More than 50 percent of Americans don’t take their medication as prescribed because they may not understand the dosage, the importance or the risks. Many patients become confused when their doctors use words like “hypertension” rather than the simpler synonym: high blood pressure.
In order to create a more shame-free environment, offering video instruction or assisting with forms can help. Another key recommendation is the “Ask Me Three” method that HEAL instructs their patients to use before they leave the doctor’s office: “What is my main problem?” “What do I need to do?” “Why is it important to do?” Using “teach back” is another way to do it—that’s when nurses and doctors ask the patient to tell them, in their own words, what they have just been told.
Peterson said that lack of clear and effective communication between patients and health care providers is a critical barrier. One of the people involved in the HEAL program is retired physician and Literacy for Life tutor Dr. Mary Kay Dineen.
“Medicine is its own language with so many unfamiliar words,” she says. “One of the biggest obstacles is that patients may not have the willingness to reveal limitations or lack of understanding. So doctors have to realize it.”
Understanding how the health care system works, and knowing how to navigate and interact with it are measures of the quality of care received, as well as patient safety. Peterson shared a story about a woman who had a baby with an ear infection and rather than giving the child liquid antibiotics by mouth, put them in her child’s ear because she didn’t understand the instructions.
Stories about follow-up care and medication confusion are all too common. For example, taking a pill “four times daily” may lead patients to take it four times during the time they are awake, to take two pills twice a day or even to take them at random times during the day. Being unclear about the instructions can lead to less effective medication, but also increased side effects or even serious health consequences.
Both health care professionals and patients have to ask and answer questions so that the treatment plan is clear. In order to work on both goals, medical students from Eastern Virginia Medical School will be working with the HEAL patient participants this year. The students will gain experience working with people with low health literacy, and the participants will gain familiarity asking questions during their class time. This collaboration is funded by a grant from the Williamsburg Community Health Foundation. The College of William & Mary’s Schroeder Center for Health Policy students will collect data on the impact of this program.
National studies show that literacy is a stronger predictor of an individual’s health status than income, employment status, education level and racial or ethnic group.
“It’s so important. Health depends on it…in fact, life depends on it,” says Dineen.