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A Better Understanding of Patient Health Literacy Can Go a Long Way to Improving Outcomes

Laura Joszt
Just because a patient nods and does not ask any questions during a health encounter, does not mean that patient truly understands the information that was communicated. Providers need to examine how they are delivering that information, what terminology they are using, and whether they are checking patients truly understand what they were told.
A health encounter can be a stressful time for patients. Perhaps they are in pain, worried about a diagnosis, or thinking about the time they are missing at work. They are distracted, but they are also being given important information, some of it involving words they don’t understand, and they are too stressed to think of a follow-up question. Then, the physician ends the encounter with a simple query: “Do you have any questions?”

The patient response? Likely, “No.”

When patients become overwhelmed, they typically say they don’t have questions, even if they do, explained Kristie Hadden, PhD, founder, executive director, and principal investigator for the University of Arkansas for Medical Sciences Center for Health Literacy.

There is a lot of nuance around health literacy, and where it often becomes an issue is during discharge, when a patient is going home to continue care on his or her own. Helene Eisman Fisher was familiar with the challenges of information being given to patients that they didn’t understand through her work as the cofounder of Say Ah!, an organization that trains health professionals to communicate effectively and empowers patients and caregivers by giving them the skills to manage their health, but she became more intimately aware of the issue in her personal life after her husband had heart surgery.

Eisman Fisher’s husband was discharged from the hospital with 24 medications that needed to be taken at 9 am, 1 pm, 5 pm, and 9 pm, every day. At discharge, a nurse went over a written schedule with him, and she walked him through filling up the boxes with his daily medications for the various times of the day. However, a few days after he got home, he noticed that one box had a specific pill, which was a different color from the others, multiple times. After following up with the hospital and speaking to the nurse, it turned out she thought he had a handle on it all and she thought she must have looked away while he was filling the boxes.

While everything ended up being OK for Eisman Fisher’s husband, the situation illustrated how patients struggle with processing information and the health system does not always communicate clearly. Another patient, one who wasn’t paying as close attention, might not have noticed, might have taken all the pills, and might have had an adverse reaction that landed him back in the hospital.

“You see a lot of things fall down in discharge,” Eisman Fisher said.

Anna Allen, the other cofounder of Say Ah!, added that discharge plans are often confusing with information pertinent for patients mixed in with information for providers.

“If you’re a patient how do you even know what your diagnosis is, and where you’re supposed to go, and what you’re supposed to do there?” Allen asked. “Those 3 things are totally mixed in with different doctors’ names and different aspects of required coding.”

Health Literacy Is a 2-Way Street
The onus should not be on patients to make sense of what their provider is telling them, Allen asserts.

“I think communicating effectively with patients is a part of caring for patients, and if you’re talking way above the ability of someone to understand what you’re saying, what is the point?” she wondered.

Research has shown that low health literacy results in poorer health outcomes, more hospitalizations, greater use of emergency services, poorer medication adherence, and lower use of preventive care.1

There are 2 sides to health literacy. First, it is about the skill level of the patient, such as how well they find information, understand it, and use it in a way that affects their health, explained Hadden. The second side is the demands placed on that patient, such as how well information is communicated, how complex the system is to navigate, or the burden a disease places on a patient.

There becomes a problem when there is an imbalance between the 2 sides and the demands on the patient outweigh his or her skill level, she said.

“So, if you have a chronic disease, you have higher demands, and you need a higher skill level,” Hadden explained. “You need to be able to handle more health information and to know how to manage your health.”

Health literacy is not a static state, though, according to Clifford Coleman, MD, MPH, associate professor of family medicine and clinical thread director for professionalism, ethics, and communication in the School of Medicine at Oregon Health and Science University. A common myth is that a person either has low health literacy or high health literacy.

“That’s a misconception, which I think has major implications for the way we try to train healthcare professionals,” he said.

For instance, if a provider sees someone in the clinic who struggled to understand information that one time, the provider might assume the patient has low health literacy and might alter future interactions and make different recommendations based on that assumption. However, that may have been a particularly difficult day for the patient and not indicative of his or her usual health literacy level.

On the other hand, if a provider is caring for another healthcare professional, the assumption might be made that the patient has a high health literacy level. But the patient might be having more trouble than usual processing and remembering information because of the situation—maybe they’re stressed out about what will be found.

“So, this notion that there are people with high health literacy and low health literacy is a problem that I think is pretty widespread amongst people who do know about this issue,” Coleman said.

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