“Does the pain radiate?” the doctor asks.
“Say that again?” The patient stares blankly.
After years of training and clinical practice, physicians are so accustomed to medical terminology that words such as “radiate,” “ischemic,” “vascular,” and even “abdominal,” just roll off their tongues. Yet patients often don’t comprehend the meaning of such terms. Ashamed or embarrassed, many do not ask for clarification.
If a patient misunderstands a physician’s instructions or gets confused about medication dosage, however, treatment can be ineffective or even harmful. Patients also can’t give truly informed consent if they aren’t clear about their treatment options.
In the United States, 36 percent of adults have only basic or below basic health literacy, levels considered inadequate for understanding information routinely encountered in a health care setting, according to Clifford Coleman, MD, MPH, assistant professor of family medicine at Oregon Health and Science University (OHSU).
Even people with intermediate health literacy may not understand complex health information, Coleman added. “Whenever anyone—regardless of how they do on a health literacy test—is sick, scared, or hurt, they will predictably have a harder time processing new information, recalling it later, and using it to make informed health decisions.”
Health literacy is defined by the Affordable Care Act as patients’ ability “to obtain, communicate, process, and understand basic health information and services to make appropriate health decisions.” The issue gained momentum following a seminal 2004 Institute of Medicine report, Health Literacy: A Prescription to End Confusion. “[After that], the research really exploded and public awareness took off,” Coleman said.
Today, the U.S. Department of Health and Human Services (HHS) has the National Action Plan to Improve Health Literacy. “Traditionally [low] health literacy was viewed as a communication deficiency among patients. [Now] we’re beginning to view it as our failure to deliver usable information to our patients,” Coleman said.
Health literacy training
Physicians and medical students must be taught not to make assumptions about health literacy. While low health literacy is more common among patients who are undereducated or have limited English proficiency, studies show that this competency is not determined by socioeconomics. Researchers from AAMC Workforce Studies found, however, that patients from racial minorities and those who lacked health insurance reported lower levels of satisfaction with patient-provider communications.
“Research shows that practitioners are poor predictors of a patient’s health literacy,” explained Kristie Hadden, PhD, executive director of the Center for Health Literacy at the University of Arkansas for Medical Sciences (UAMS). “The patient may be a CEO or head of the biggest church in town and may not understand what the doctor is saying. You can’t predict health literacy by someone’s income level, education, or race.”
The U.S. Department of Education found in a 2006 study that only 12 percent of adults have proficient health literacy skills. Coleman explained that people are “proficient” they can consistently and reliably answer complex reading comprehension questions on a standardized test, which is known to correlate with understanding information in health care settings.
“Whenever anyone—regardless of how they do on a health literacy test—is sick, scared, or hurt, they will predictably have a harder time processing new information, recalling it later, and using it to make informed health decisions.”
Clifford Coleman, MD, MPH
Oregon Health and Science University
In 2010, the Agency for Healthcare Research and Quality (AHRQ) published the AHRQ Health Literacy Universal Precautions Toolkit. In 2012, UAMS used the toolkit with its multidisciplinary clinical staff, faculty, and family medicine residents at eight health centers across Arkansas. Low health literacy had been costing the state of Arkansas between $1 billion and $3 billion a year in health care expenses, Hadden said.
According to an AHRQ report, early results following the health literacy training initiative at UAMS demonstrated significant improvements. “The area of greatest improvement occurred in practices related to patients' self-management of diseases, which improved by 22.7 percent.”
UAMS established a Center for Health Literacy in 2014, modified its use of the toolkit, and received a four-year $2.9 million grant from the National Institutes of Health (NIH). Hadden explained that the center now uses health literacy best practices and evidence-based approaches to improve population health and reduce health care costs.
In the fall of 2015, UAMS introduced a collaborative program that educates medical, nursing, pharmacy, and public health students about the importance of health literacy. “Every new student—900 of them—participated in an exposure workshop where health literacy was threaded throughout the program,” Hadden said.
At OHSU, Coleman and his colleagues weave health literacy throughout the first 18 months of the medical school curriculum. “We take med students from day one and build health literacy into their daily habits so they can’t undo it later. They spend 60 hours of their time on it. We build on prior concepts, practice, assessment, and situations with standardized patients. And we observe the students.”
This new strategy is in its third year at OHSU. “Before, our health literacy training was lecture- based, but we found that we weren’t changing behaviors,” said Coleman. “Now we’re building habits that [students will] take into their practice.”
“Research shows that practitioners are poor predictors of a patient’s health literacy…You can’t predict health literacy by someone’s income level, education, or race.”
Kristie Hadden, PhD
University of Arkansas for Medical Sciences
A critical component of improving health literacy, Hadden said, begins with making medical students and residents aware that words familiar to them aren’t always understood. For example, a UAMS survey asked third and fourth year medical students what word most often stumped the patients they saw in clinics. The word? “Hypertension.” Patients knew “high blood pressure,” though.
Another problem, said Coleman, is that “patients often hide their ignorance of medical terms because they’re ashamed or feel they aren’t smart, so they don’t ask.” Even terms like “abdominal” or “diabetes” are misunderstood. “Patients know ‘belly pain’ or ‘stomach ache,’ but not ‘abdominal’ pain. Everyone’s familiar with diabetes, but if you ask patients what it is, they’ll say something like ‘eating too much sugar,’” Coleman added.
Health care is a dialogue
Although many medical schools and teaching hospitals have integrated interventions to improve physician-patient communication, the average physician and medical student still aren’t getting enough training on it, Coleman said.
Patients should be encouraged to ask questions if they don’t understand something because it will ultimately help them to take better care of themselves. A common educational technique called “teach back,” considered a cornerstone in improving health literacy, is far more effective than simply asking a patient, “Do you understand?”
“You have to check back with the patient,” stressed Michael Paasche-Orlow, MD, MA, MPH, associate professor at Boston University School of Medicine. A physician could say, “I want to make sure I made that clear,” and ask the patient to summarize the doctor’s instructions. Or a physician could ask “How are you going to take this medicine?’” or “Can you show me how you’re going to use the inhaler?” or “What are you going to tell your family about what I’ve explained?”
“Doctoring is teaching. Checking back means that you empower patients. This becomes a shared-decision scenario,” Paasche-Orlow said. “It’s not just about compliance. It’s not shaming. Teaching is no longer paternalistic, but this empowers learners and motivates them to succeed.”
Medical educators also urge students and residents to be concise. “Studies show that after the first few minutes, people remember less than half of the information they’ve just heard. Later, they remember only half of that, and what they recall is often misunderstood,” Coleman noted. “So follow a need-to-know approach, and do not overwhelm patients with too much information.”
Awareness of health literacy is fundamental for physicians, Paasche-Orlow summed up. “Learning to be an excellent doctor should include skills needed to communicate effectively and empower patients—independent of their literacy skills.”