Hae-Ra Han, PhD, MSN, RN, conducts research on the relationship between health literacy and the management of chronic diseases, including diabetes. Here, Dr. Han discusses how limited health literacy may affect diabetes outcomes and offers strategies health care professionals can use to address or improve patients’ health literacy skills.

Q: What is personal health literacy? Why are health literacy skills important for people who have diabetes?

A: Health literacy is defined as the degree to which people are able to find, understand, and use information and services to inform their health-related decisions and actions for themselves, as well as others. Health literacy involves many different skillsets. The three essential skillsets are reading, communicating verbally, and understanding numbers.

Health literacy is important for people with diabetes because managing diabetes is complex. People with diabetes have to understand basic physiology, as well as the concept that behavior—taking medicines, self-monitoring blood glucose, maintaining a healthy diet, and being physically active—has an impact on blood glucose levels.

Q: What is limited health literacy? How many Americans lack the health literacy skills needed to understand health information and make informed health decisions?

A: Limited health literacy means failing to understand most health information, such as a prescription medicine label or an immunization schedule.

The Health Literacy of America’s Adults—a report from the National Assessment of Adult Literacy, the most comprehensive assessment of U.S. adult literacy conducted to-date—found that 36% of U.S. adults have basic or below-basic health literacy, which means they have limited health literacy and fail to understand most health information. The report found that only 12% of U.S. adults have proficient health literacy, meaning they were able to understand and use printed health information effectively.

Q: How can limited health literacy affect diabetes outcomes?

A: Limited health literacy is a major barrier to effectively managing diabetes because it severely limits a person’s ability to obtain, understand, process, and act on important health information. Evidence suggests that people with limited health literacy are less likely to follow diabetes self-care instructions and to seek care early in the course of the disease, which makes them more likely to experience complications. People with limited health literacy are also more likely to seek care in emergency rooms and be admitted to the hospital.

Therefore, limited health literacy in the care of chronic diseases, such as diabetes, results in higher, unnecessary costs to society. According to some estimates, limited health literacy accounts for 3% to 5% of total health care costs.

Q: Are some groups more likely than others to have limited health literacy skills? How does health literacy relate to social determinants of health and health inequities?

A: Limited health literacy is much more common among people with less education, older adults, people of lower socioeconomic status, ethnic minorities, and people with limited English proficiency. The association between limited English proficiency and limited health literacy is very strong. According to the U.S. Census, about 25 million Americans have limited English proficiency, which means they are at risk for limited health literacy. Also, U.S. demographics continue to change and reflect increases in some populations that might experience limited health literacy, such as ethnic minorities and first-generation immigrants.

Health literacy is closely linked with social determinants of health, which eventually affect health outcomes and drive health inequities. Even if patients are fully informed about the behaviors needed to manage diabetes, they may not be able to keep up with those behaviors due to social determinants of health—such as living in an environment where access to affordable, healthier food and beverage options are limited.

Structural racism also affects people’s health care outcomes. For example, people of certain races or ethnic groups may perceive they are either not understood or listened to, or report feeling ignored or not believed by their doctor. Structural racism may lead to mistrust, which undermines patient-doctor communication and relationships, and may prevent people with chronic health conditions from seeing their doctors regularly.

Social determinants of health also affect how health literacy is formed. Health literacy isn’t a trait; it’s a set of skills that develop over time. If you have access to health care from an early age, go with your parents or caregiver to annual wellness visits, and hear conversations between your parents or caregiver and doctors, you may have a better understanding of health information. These conversations might help develop health literacy skills.

Q: What strategies can health care professionals and health care organizations adopt to improve diabetes care when working with patients who have limited health literacy skills?

A: Organizational health literacy is a new concept that puts the focus on the health care system and how organizations interact with patients. The Agency for Healthcare Research and Quality (AHRQ) Health Literacy Universal Precautions Toolkit is a great go-to resource for health care professionals. The AHRQ toolkit describes ways to address limited health literacy, such as the teach-back method—a common strategy for checking patients’ understanding. However, studies suggest that tools to address limited health literacy aren’t well utilized if an organization’s leadership doesn’t emphasize these tools on a regular basis.

To improve organizational health literacy, everyone in the health care organization—doctors, nurses, receptionists, and others—should avoid jargon and acronyms and use plain language. Organizations should make sure patient-facing documents, such as education materials and templates, follow plain language principles. When describing patient materials, “easy-to-read” is a better phrase than “lower reading level.” Patients may find “lower reading level” condescending. The Centers for Disease Control and Prevention (CDC) has a great health literacy website that discusses plain language principles and provides plain language alternatives for common medical terms.

Using the following strategies can also help your patients understand how to manage diabetes—or any other chronic disease.

• Convey two or three key messages that you want your patient to remember.
• Focus on what the patient needs to know and needs to do, as opposed to spending too much time on what the health condition is.
• Use the teach-back method to reinforce key messages and confirm the patient understands what he or she needs to do.
• Be positive, hopeful, and empowering. Avoid blaming or trying to identify where the patient is lacking. After a doctor’s office visit, you want the patient to understand what to do and to feel empowered to do it.

Q: Are there any additional steps health care professionals can take to help patients with diabetes improve their own health literacy skills?

A: Be creative and try different media, beyond just written materials. For example, podcasts or video-based materials, such as YouTube videos, may help health care professionals interact with and educate patients who have limited health literacy. New technologies, such as virtual and augmented reality, are already being used in medical education, and these technologies could easily be adapted in the future to help educate patients.

Q: What research is being conducted on health literacy and its effect on diabetes care and outcomes?

A: Researchers are seeking to better understand the relationship between health literacy and diabetes outcomes. A recent publication from my research team examined how health literacy indirectly affects diabetes outcomes through mediators such as self-efficacy and diabetes self-care. In our sample of Korean Americans with type 2 diabetes, the study found that diabetes-specific health literacy affected self-efficacy and self-management, which in turn affected how well they managed their blood glucose and their quality of life.

Several studies have focused on adapting education materials to accommodate limited health literacy. For example, the NIDDK-supported Partnership to Improve Diabetes Education (PRIDE) trial evaluated plain-language written materials, and other studies have looked at DVD- and web-based interventions. The Decision-making Education for Choices In Diabetes Everyday (DECIDE) study focused on decision-making education and included people with limited health literacy.

However, few studies have attempted to change people's level of health literacy. My research team sought to improve the health literacy skills of study participants—Korean Americans with type 2 diabetes. We used education materials highlighting key diabetes-related medical terms. Participants were repeatedly exposed to the terms and had opportunities to practice using them during education sessions. Participants also practiced health literacy skills such as reading nutrition labels—a task that can be difficult because it requires both reading and numeracy skills.

I firmly believe that health literacy can be taught. We need to promote the idea of increasing health literacy by actively teaching our patients.

How do you address limited health literacy when working with patients who have diabetes? Tell us below in the comments.