Laura is the editorial director of The American Journal of Managed Care® (AJMC®) and all its brands, including The American Journal of Accountable Care®, Evidence-Based Oncology™, and The Center for Biosimilars®. She has been working on AJMC® since 2014 and has been with AJMC®'s parent company, MJH Life Sciences, since 2011. She has an MA in business and economic reporting from New York University.
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.
Patient­—Provider Communication and Health Literacy Interventions
While the onus is on the provider to communicate clearly with patients, “it takes 2 to tango,” Eisman Fisher said. Providers cannot read minds, and so they can’t just leave it alone when nod and say they understand.
There are a number of reasons why patients don’t ask questions. They might not be able to think of something on the spot, but they also might not want their provider to think they’re stupid.
“And it’s not that the patients are stupid,” Allen said. “It’s that the information is so poorly communicated.”
Say Ah! tries to teach patients and caregivers that if they don’t ask questions or tell the provider when they don’t understand something, then they might end up back in the clinic or hospital in worse condition. At that point, the doctor might think the patient just doesn’t care, she said.
“Asking questions is a way of showing you’re engaged in your care,” explained Allen.
The focus on health literacy research has shifted from defining it, measuring it, and understanding how it affects outcomes to designing successful interventions, Hadden explained.
The top intervention that Eisman Fisher, Allen, Hadden, and Coleman all mentioned was the teach-back method. This method gives providers an understanding of a patient’s health literacy because they are asked to repeat and explain what was just told to them.
This shouldn’t be viewed as a test, Hadden stressed. Clinicians should not be asking patients to prove they understood something. Instead, they are taking responsibility for how the information was delivered and asking the patients to repeat it back in their own words.
“So, saying something like, ‘I want to be sure I explained that clearly. Can you tell me in your own words what you’re going to do when you go home?’” she explained.
The teach-back method will also highlight issues with jargon. Medical jargon is pervasive during health encounters, but providers don’t actually ensure patients understand the terminology. The biggest culprit is “hypertension,” which is a common word that’s used incredibly often, and yet patients don’t realize that it is high blood pressure, Hadden said.
“Individuals have a hard time recognizing when they’re using jargon,” Coleman said. “They kind of lose track of what they didn’t used to know before they went through their training.”
Utilizing the teach-back method will help because a provider can ask, “Do you want to tell me what hypertension is?”
Hadden’s Center for Health Literacy runs a social media campaign every October, which is Health Literacy Month, to raise awareness of the issue and promote the Plain Pledge, which asks health professionals to eliminate 1 jargon word from their vocabulary. The Center encourages people to report what word they are getting rid of, and hypertension is the number 1 word professional recognize patients find difficult to understand, she said.
Similar to jargon, is the issue of numeracy.
“Every time you write a prescription, there’s a math problem that the patient needs to solve in that, which is something about the timing of when to take it,” Coleman explained.
For example, a prescription may say to take 1 tablet twice a day, but it’s up to patients to figure out the timing of those 2 tablets. He added that it’s not uncommon to find out patients are taking the pills just 2 hours apart. When they do that, they’ve followed the prescription as it was written, but they might not be getting the full benefit of the medication, and they might actually be doing harm.
Another best practice is limiting the information given to patients. Say Ah! recommends that providers reorganize how their information is presented so it’s usable and provides the information that “the patient needs to know, not what you want to tell the patient,” Allen said.
Coleman said he teaches students that the average patient remembers half of the information discussed during a health encounter, and half of that is usually remembered incorrectly. Then, providers have to realize patients might not go straight home; they may have to go back to work or get distracted with other obligations. By the time they get home, they might not remember anything.
“We’re really good at overwhelming people with too much background information too much technical information that’s actually not critical for taking care of yourself,” he said. “And when we do that people tend to forget everything.”
The final idea is taking a universal precautions approach. This ties back to the idea that a person’s health literacy is not static, and it can change depending on the situation they are in. According to Coleman, providers can’t really know who is understanding them and what they’re understanding. As a result, they shouldn’t try to guess what a patient might understand based on what they know of the patient’s history or background.
“Everyone is at risk for misunderstanding, for having challenges and difficulties with health information,” Coleman said. “And we shouldn’t assume because of something we know about a person that makes them able to understand complex health information. We should assume that everyone is likely to struggle regardless of their socioeconomic background, their education background, etcetera.”
These are all interventions and communication skills that Coleman teaches not only to medical students, but in workshops to practicing professionals. He has found that physicians don’t usually realize how much they need to learn these communication skills and that physicians often think they do a good job with communication and they don’t need to get trained on health literacy. However, once he gets them in a room, and teaches them the interventions and the issues patients are facing, they change their tune.
“They get really engaged,” he said. “They recognize the issues; they start to see solutions; they start to see how it really relates to the work that they do and how they have been using ineffective communication techniques that they learned from their teachers.”
The challenge remains getting them into the room, because it is difficult to break through the lack of awareness of health literacy issues, Coleman added. The concept of health literacy has only been in the mainstream workforce for about 10 years. Since it can take a long time for new information to get out to everyone, a lot of the current workforce has zero training in the area, he said
“All health professionals have major blind spots in how well their patients understand them, and I think that we should begin to put a lot more energy into teaching health professionals about health literacy and clear communication at the beginning of their careers as a really promising approach to improving patient outcomes,” Coleman said.
However, a survey2 Coleman conducted in 2016 found that less than half (42%) of family medicine residency programs that responded taught residents about health literacy as part of required curriculum, even thought there was agreement that increased health literacy training would improve clinical skills.
At-Risk Groups and a Changing Health System
While clinicians should go into most encounters without assumptions about the patient’s health literacy level, there are some groups that are more likely to have low health literacy. Patients with chronic diseases, such as diabetes or hypertension, will need to use health literacy skills daily to monitor changes in their disease, which can be difficult.
Allen conveyed a story from about 10 years ago of a man with diabetes who had to report his blood sugar levels on his glucose monitor and he was actually just making up the numbers. He had been too embarrassed to admit he didn’t know how to use the monitor. “And no one explained it to him…no one had him show back how this worked,” she said.
Another group that struggles with health literacy are older adults. In addition to having natural cognitive declines and sensory impairments as a result of aging, they are also dealing with a health system that has grown more complex, Hadden said.
“When they were younger, healthcare was simpler,” she said. “They basically picked up the phone and called the doctor, and that doctor would maybe even come to their house.”
In addition to the system being more complex with specialists, patients have to contend with insurance and understand co-pays and deductibles all while older adults are likely to have more health issues and prescriptions to juggle than when they were younger, Hadden noted.
As the healthcare system shifts away from fee-for-service and focuses more on population health and reimbursing for value, health literacy will be increasingly important. According to Hadden, an understanding of a patient’s health literacy level can help tailor care plans that take into account a patient’s ability to understand information and then make decisions based on that understanding.
Under the fee-for-service system, patients who didn’t understand, got sick and ended back in the hospital, and the hospital just got paid again, Coleman explained. But now, as financial incentives are changing so hospitals lose money on readmissions, there is more interest in ensuring patients understand what they need to do to take care of themselves.
“If your hospital is concerned about hospital readmission rates with people with congestive heart failure, you can start to see how training your staff around health literacy and clear communication to make sure that patients know how to take care of themselves starts to make a lot of sense,” Coleman said.