When Jonathan J. Beitler, MD, met with a patient who had been disabled by a recent stroke, he was surprised by the man’s initial interaction. “His first words to me were, ‘I don’t like doctors,’” said Dr. Beitler, an oncologist at Emory University’s Winship Cancer Institute in Atlanta. “I said, ‘Neither do I,’ and we did much better after that. But because the patient had poor medical literacy, he focused on the attitude of those taking care of him and focused on emotions rather than objectively looking at what his health care problem was and how best to deal with it.”
Dr. Beitler, the lead author of a 2010 American Journal of Otolaryngology study on health literacy among laryngectomy patients, found that patients considered to have low health literacy levels were also less likely to have access to health care and, subsequently, were less likely to make informed choices about their health (J Otolaryngol. 2012;31;29-31). “People who are health care illiterate seem to make their decisions based on emotions and transportation barriers (often influenced by the weather), as well as their resources,” he said. “Facts and objective needs are way down on their list of considerations.”
Luckily, Dr. Beitler’s patient had a devoted friend who could drive him to follow-up appointments and a highly supportive wife at home. Such allies, along with a strong doctor-patient relationship, ultimately helped the patient achieve an optimal outcome.
Health Literacy: What It Is
Health literacy is the ability to comprehend and use medical information and services so that patients can follow treatment instructions and make informed choices about their health. According to the American Medical Association’s manual on health literacy, Health Literacy and Patients’ Safety: Help Patients Understand, “clinicians can most readily improve what patients know about their health care by confirming that patients understand what they need to know and by adopting a more patient-friendly communication style that encourages questions.”
Several factors influence whether a patient has high, moderate or low health literacy, said Helen Osborne, MEd, OTR/L, a health literacy expert and the president of Health Literacy Consulting in Natick, Mass. “People struggle because of age, language, disability (including hearing loss), culture and emotion,” she said. “Low health literacy is not synonymous with low literacy.”
There are varying degrees of health literacy as well, according to a U.S. Department of Education report, “The Health Literacy of America’s Adults: Results from the 2003 National Assessment of Adult Literacy.” The report, updated every 10 years, assessed how well more than 19,000 adults performed certain tasks such as circling an appointment date on a piece of paper from a hospital visit or understanding the healthy weight range on a body mass index chart. The report grouped health literacy results into four categories: below basic, basic, intermediate and proficient. While 53 percent of adults showed intermediate health literacy, indicating they could understand moderately challenging material, 36 percent tested at basic or below basic levels. This means that approximately one in three adults could only process simple health-related material or could not understand it at all.
High health literacy does not necessarily directly correlate with a person’s level of education, said Jean Anderson Eloy, MD, director of rhinology and sinus surgery, assistant professor and vice chair of otolaryngology at the New Jersey Medical School in Newark and author of several studies on health literacy. “You’d be surprised,” he said. “Because of their education level, a lot of people who you’d think would understand things may not. A lawyer is educated in the law, not in medicine. I can’t give him the same material I would give a colleague.”
But fewer years in school does inversely affect health literacy, said Amy Y. Chen, MD, MPH, professor in the department of otolaryngology and head and neck surgery and in the department of hematology and medical oncology at Emory University School of Medicine and the Winship Cancer Institute of Emory University in Atlanta and a co-author of Dr. Beitler’s laryngectomy and health literacy report. “A lower level of health literacy is related to a lower level of compliance [and] taking medications, as well as adhering to treatments,” she said.
Health literacy also involves understanding numeracy and percentages, said Dr. Chen. “It’s very important to understand what a treatment will entail. If I say a treatment will yield an 80 percent chance of a cure versus treatment B, which will entail an 85 percent chance of cure, the patient needs to understand that.”
Identifying Patients with Low Health Literacy
Patients seek an otolaryngologist’s care for a variety of reasons. As a result, there can be several different reasons health literacy might be compromised.
“For ear, nose and throat doctors, they are dealing with people who might not hear clearly, because the patients have ringing in the ears,” explained Osborne. “What do allergy medications do? They make you sleepy. For people facing head and neck cancers, their whole life is being turned upside down.” In every patient interaction, physicians should “consider all the life factors someone is going through,” she added, because it isn’t always obvious that people are having trouble understanding what is happening at the doctor’s office.
Poverty can also play a role, said Dr. Beitler, who added that poorer people often have a greater distrust of the medical system, and perhaps with good reason. “A heritage of family members being hounded about healthcare bills trains the next generation to avoid health care,” he said. But for those with head and neck cancers, that avoidance can be fatal. “Health literacy is particularly important for otolaryngology patients, because drinkers and smokers who suffer these cancers tend to be in poor socioeconomic groups and have fewer resources,” he added. Such patients, who don’t always understand the need for rehabilitation post surgery, may not follow through with it, suffering poorer health outcomes as a result. And for some patients, the outcome is literal silence. “When some patients are illiterate and can’t read or write, if we eliminate their tongue or larynx, it’s particularly devastating,” said Dr. Chen.
The problems can start as soon as a patient steps into the doctor’s office, or beforehand if the patient has trouble understanding how to get to the office and arrives late. When the patient tells the receptionist he is there for his appointment, he is typically asked to fill out intake forms. Leaving them blank can be a key sign of low health literacy.
“They’ll have some kind of excuse for why it’s not filled out,” said Dr. Chen. “Or they’ll sign their name on the consent form, and they don’t know where the signature line is. Usually the handwriting is pretty poor. Or else they won’t complete the form and say, ‘It’s easier for me to just tell you rather than write it down.’”
During the exam, doctors will explain why they are examining the patient and what the results of that exam, or prior test results, are. Patients who don’t interact, Dr. Eloy said, may also be showing poor health literacy. “Usually when a patient doesn’t ask questions, or he just nods when you ask questions about the process that has been explained before, you can tell that he’s not getting it,” he said. “When a patient understands, they usually have multiple questions.”
Asking how a patient will follow up can also be a tip-off. “Glassy-eyed nods are bad,” said Dr. Beitler. “Vague answers to specific questions are bad. ‘How are you going to get to Dr. Smith tomorrow, Mr. Jones?’ ‘I don’t know,’ is not an encouraging answer. Not having a notebook and taking notes is bad. Writing steps down and having concerned family members around is important.”
Dr. Chen said that once she realizes her patients—who are typically facing surgery for head and neck tumors—don’t understand exactly what she is telling them, she calls upon resources such as certified social workers, speech pathologists or head and neck cancer patient support groups who can help the patients understand what they are facing. “A patient visitor can meet with the patient to discuss what’s to come and to help put them at ease,” she said. “There are a lot of patient resources.”
Dr. Eloy works to ensure his patients understand their own diagnoses and his proposed surgical procedures by giving them two copies of paperwork before any procedure is scheduled. “I want them to go home with the material, read it and discuss it with a family member,” he said. “I tell them to call me in one week, and I ask them to write down every single question they have.” Dr. Eloy only schedules surgeries after he is sure he has answered a patient’s questions and the patient has shown him she understands what is happening with her health.
How to Make Changes
Health literacy has been studied within many medical fields, not just otolaryngology, and there are several steps all physicians can take to help patients improve their health literacy. The American Medical Association produces a health literacy kit that includes the clinician’s manual mentioned above, along with a video and other resources, all available at ama-assn.org. The Agency for Healthcare Research and Quality publishes a Health Literacy Universal Precautions Toolkit, available at ahrq.gov/qual/literacy, which helps guide doctors through the process of assessing their practices for areas where change could be helpful and discusses how to train staff members about the issue.
- Use straightforward language. Implementing changes isn’t a quick fix, but they’re a step in the right direction toward making health information understandable to all. Using plain language to explain medical terms and procedures is one of the cornerstones of the health literacy movement. “If I had to provide one piece of advice, it would be to explain things to patients in simple terms, like you might explain them to your grandmother if she called on the phone to ask for a translation of what the doctor told her,” said Barry D. Weiss, MD, a professor of family and community medicine at the University of Arizona College of Medicine in Tucson and the author of the American Medical Association’s health literacy clinician’s manual. “Physicians often forget that words they use every day are totally unfamiliar to ‘normal’ people.”
- Practice “teach back.” Using plain language also helps when doctors use “teach back,” a method in which doctors ask patients to repeat back what they have been told to do about a particular health issue and what the next step should be—such as making a follow-up appointment or filling a prescription and taking a particular medicine a certain way. Having a patient accurately explain his health issue and how it should be treated, as the doctor explained it to him, is a way to ensure that the patient understands exactly what should be done to treat a particular health problem. “Physicians tend to overestimate what a patient is understanding,” said Dr. Eloy.
- Pay attention to reading level and native language. Dr. Eloy also suggested providing health information that is written at an appropriate reading level. He uses a feature popular in many word processing programs called the Flesch-Kincaid Grade Level, a readability formula that determines how challenging a material will be to understand. The AMA and AHRQ literacy kits propose that all patient material be written at a sixth grade reading level or below, and Dr. Eloy suggested writing to an even lower grade reading level if a physician works with a large number of patients with low health literacy. He found that the online patient education materials on the American Academy of Otolaryngology’s website were written above the recommended sixth grade level and suggested that revision may be necessary (Otolaryngol Head Neck Surg. 2012. April 3).
Providing patient materials in other languages can make information easier to understand for non-native English speakers.
Incorporating health literacy practices needn’t add time to a physician’s day, said Osborne. “Usually the No. 1 recommendation is to use teach back. You don’t do it for everything,” she said. “Use teach back for key points, and just try it on your last patient of the day. You’ll get into the habit of doing it more after trying it when you are not as pressed for time.”
Health literacy is the single most important predictor of a patient’s health outcome, said Dr. Eloy. He likened health literacy to changing the oil in your car. “A mechanic can tell you what they can do, but you don’t know what is best for the car,” he said. “You may not understand what they are saying, even if you are an educated person. Health literacy is compounded by making life and death decisions about one’s health.”
It may not be as easy as learning how to change the oil in one’s car, but incorporating methods to improve health communications helps improve patient compliance, which ultimately leads to healthier patients.