Health Literacy — the public health crisis you never knew about.

Photo by Nhia Moua on Unsplash

Do you enjoy going to doctor’s appointments? What about sifting through after-visit summaries? Do you ever find yourself calling a friend or family member that is a doctor and asking them to explain what was discussed during your office visit? Chances are, you might not be alone. In 2018, the United States Department of Health and Human Services reported that a sizable percentage of patients, about 80 million adults, have limited health literacy. Deciphering appointments with healthcare providers are only the tip of the iceberg when it comes to navigating your personal health and the healthcare system in general. Without a clear understanding of health information, social determinants of health, or how the healthcare system works, patients’ access to healthcare, ability to care for themselves, and their ability to make informed decisions decreases.

Health literacy is the umbrella term researchers, medical practitioners, and social scientists use to describe these dynamics. Despite being a significant component of individual health, knowledge about the importance of health literacy rarely leaves public health academia, let alone permeate the public sphere. The health and wellbeing of every American depends on the medical professionals, sociologists, health researchers, and leaders of adult education nonprofit organizations working to improve health literacy. Yet, their work alone is not enough. Our politicians, community leaders, and even members of the general public, like you and me, need to help promote health literacy because all our health depends on it — every day.

While the public health sector has studied health literacy over the past few decades, the conversation has only recently expanded outside of that field. Whether it be one’s inability to understand an FAQ sheet or discern the difference between truth and misinformation on the Internet, people worldwide have seen the harmful effects of low health literacy throughout the COVID-19 pandemic.

Well, what exactly is health literacy?

“Personal Health Literacy is the degree to which individuals can find, understand, and use information and services to inform health-related decisions and actions for themselves and others,” according to the United States’ Agency for Healthcare Research and Quality. “Organizational Health literacy is the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.”

While these two components contribute to the complexity of health literacy, they also clarify the binary nature of the field. Health literacy is both a patient’s capacity to gather and comprehend health information — to make informed decisions, navigate the healthcare system, communicate with medical providers, and advocate for one’s health — and the healthcare system and/or provider’s ability to effectively communicate health information in an accessible and equitable manner, while administering care.

Doctors and researchers all agree that health literacy is at the crux of healthcare access and disparities on an institutional level. Health literacy provides equitable accommodations to medical providers and patients in an overly complex healthcare system. “While you have the patient, family, or caregiver on one side, there is also the community health system side,” says Michael S. Wolf, PhD, MPH, director of the Institute for Public Health and Medicine at Northwestern University’s Feinberg School of Medicine. “The health system side is really about understanding who the community you serve is so that you can make attempts to appropriately deliver care that will actually support patients.” The goal of every medical provider is to give their patients the care they need. Still, sometimes the nature of the healthcare system and how information is communicated hinder a patient’s ability to successfully understand, navigate, and use the system to improve personal health.

Health literacy impacts health in three significant ways: access and utilization of healthcare, interactions with providers, and self-management and lifestyle. “Of course, there are actors outside of health literacy like biological stressors, psychosocial stressors, age, you name it that contribute to how people understand their health,” Wolf said. “However, health outcomes are both consistently and completely contingent upon health literacy — every single time.”

What do clinicians and public health researchers think about health literacy?

While the system undoubtedly affects patients, much of an individual’s comprehension depends on how medical professionals and researchers communicate health information. Barry D. Weiss, M.D., a family physician and professor at the University of Arizona College of Medicine, became passionate about health literacy many years ago after a patient told him she could not read the informational health handout Weiss gave her.

“I was sitting with a new mother, holding up a piece of paper with a chart that showed her the vaccines her kid needed to get and at what age he should get them, and she said, ‘Dr. Weiss, I can’t read,’” Weiss said. “I realized that I’ve been telling people all kinds of stuff and giving them all kinds of information and not knowing how many of my other patients were like this young mom.”

Even outside of office exam rooms, patients still experience the harmful effects of unclear communication. Wolf’s research explores how unclear medical instructions place patient health and safety at risk. In a presentation to the California State Board of Pharmacy, Wolf identified how low health literacy is linked to misunderstanding medication instructions. There are around 53 different ways to say, “Take 1 Tablet a Day.” Wolf provides the following as examples of prescribing variability: “Take one tablet by mouth once daily,” “Take one tablet orally once every day,” “Take one pill by mouth at bedtime,” and “Take 1 tablet by mouth every morning.”

The lack of federal oversight for prescription drugs, negligible guidance from state pharmacy boards, and confusing language of instructions contribute to low organizational health literacy, according to Wolf. The overwhelming variability within prescribing and dispensing prescription drugs represents how health literacy goes beyond the patient. In 2013, the Center for Health Care Strategies reported that approximately 36 percent of U.S. adults have low health literacy. No singular entity can attempt to raise health literacy and decrease the number of health illiterate individuals without working together on both the patient and organizational fronts. The clinicians and medical providers must take it upon themselves to communicate in ways that patients can understand to offset the effects of the broken healthcare system.

“That’s kind of been one of my professional missions,” Weiss said. “I’ve been trying to turn people on to this notion that if you’re going to try to communicate health to the public, you got to do it in languages that normal, everyday people can understand.”

Are efforts being made outside of clinics to improve health literacy?

Yes, many community and nonprofit organizations find themselves taking on patient education to offset the detriments of communication breakdowns. “We’ve really seen outside organizations bridge the gap between patients and doctors by providing social support,” said Shoou-Yih Daniel Lee, PhD, MPH, senior associate dean for Research and Strategic Initiatives at Virginia Commonwealth University’s College of Health Professions. “People who have positive relationships with healthcare typically have high health literacy and better health outcomes.”

For many people, the healthcare industry incites feelings of nervousness and confusion. Wolf finds that the American healthcare system is neither succinct nor intuitive, but rather unaccommodating, gate kept, and exclusionary. These aspects of the system often result in negative experiences. Complicated medical bills, identifying health insurance plans, increased expansion, and more all contribute to the disorientation that America’s healthcare system creates.

Accessing health care becomes an even more daunting task for those who know English as a second language. Due to the ever-growing number of healthcare system entry points –- and the red-tape around them — the system has become complex. Because of this, health literacy undoubtedly consists of one’s ability to know how care is accessed and how organizations — including the government — facilitate access. However, Lee’s research identifies the effects of social support. “In my analysis, social support is extremely important for health literacy,” Lee said. “With more social support, we predict better health outcomes.”

How do non-profit organizations provide social support and increase health literacy?

Adult education and family programming non-profit organizations offset the difficulties individuals encounter within healthcare, by providing social support. Improving literacy is a long-standing goal of many community-based continuing education, adult learning, and family centers around the country.

The Chicago Citywide Literacy Coalition (CCLC) is the oldest and only literacy coalition in Chicago. They recently incorporated health literacy into their offered resources, programming, and curriculum. In 2015, they started the Empowerment-based Health Literacy Project. Health is highly integral to all facets of life; therefore, it was inevitable that health literacy became a coalition offering.

The project aims to train adult education providers on health literacy, instruct adult learners on self-care, preventative health, and other health literacy topics, as well as connect students to a Federally Qualified Health Center (FQHC) — so they can access neighborhood healthcare services. The health literacy project also creates and facilitates modules and lesson plans for the CCLC to distribute to their partner and member organizations. The following are topics included in the CCLC’s health literacy curriculum: diabetes, heart disease, mental health, navigating doctor or health clinic visits, talking to healthcare providers, coronary artery disease, and more. All the lessons are also available in Spanish.

“It came out of serving our members and the input we were receiving,” said Becky Raymond, the CCLC’s executive director, and inaugural staff member. “Our students were sick a lot; they have issues around health and didn’t know how to take care of themselves.”

The CCLC made a very customized health literacy program with the goal of skill-building in mind. The different curriculums within the CCLC’s health literacy program were tailored to other cultures. Raymond said that the cultural competency and humility built into the programming resonated well with students and positively impacted their lives. She believes that much of the program’s success is due to framing public health around social determinants of health. Onboarding students can be challenging at times because health literacy is not a topic the general public pays close attention to.

“I think that health literacy is on a continuum of what people know,” Raymond said. “Even people with a college education, unless you’re a doctor, are going to bump up against certain things where it’s like, ‘Okay, this is beyond what I know.’”

Within the healthcare industry, things that some may consider basic still maintain aspects of complexity. Raymond explained that program participants had expressed difficulties with prescriptions, understanding the terminology doctors use, and making sense of information on the internet. While personal literacy does affect one’s health literacy, communication within the health and medical fields is inherently difficult to comprehend for any layperson — especially if someone does not have a baseline understanding of health in general.

“We try to make sure that all of our modules boil down information,” Raymond said. “We use clear, relatable, plain language to help students identify signs like ‘my chest feels tight’ or ‘my arm feels weird.’”

The CCLC’s programming also encourages participants to learn about and use nearby FQHCs. These health centers provide engaging physical and educational activities, like Zumba lessons or heart-healthy cooking classes. Raymond discussed how many students are first introduced to the FQHC offerings through the CCLC modules. Medical providers could at least notify patients of community opportunities to improve and maintain their health. The CCLC’s health literacy project educates learners about community-based activities that provide continued social support in and outside of medical facilities. Raymond would like to see more individuals — not just CCLC cohorts — know and take advantage of FQHCs.

“The FQHCs are doing a great job, and so we take our learners on tours and invite groups there,” Raymond said. “We [the CCLC] should not be the only ones letting people know about opportunities for continued adult education and health improvement.”

Health literacy goes beyond the mechanisms and logistics of the healthcare system. Clear communication and social support improve health literacy. For Raymond and the CCLC, health literacy is integral to the lives of their students. Community organizers like Raymond shared many of the same concerns and became innovative with their solutions for improving health literacy. The CCLC attributes the success of their health literacy project to their individualized programming. Their adult educators come from diverse backgrounds. Nonetheless, researchers, public health specialists, and doctors around America are working to identify means for improving health literacy and spreading the word about how impactful it is.

Is health literacy a public health crisis?

There are slight disagreements about whether it should be deemed a public health “crisis;” but, both medical professionals and community organizers find it a huge problem and an area of great concern.

To Weiss, labeling health literacy as a crisis implies that it suddenly happened. Framing health literacy as a public health “crisis” rather than “problem” places a damper on researching solutions. “People are doing one of two things right now: developing new instruments to measure health literacy or checking out what the health literacy skills on different diseases are,” Weiss said. “Over and over again, new people are getting turned onto the topic of health literacy and repeating the things we all did 20 years ago.” Weiss participated in putting together the Agency for Healthcare Research and Quality’s (AHRQ) health literacy toolkit, over the course of many years. The AHRQ’s toolkit contains health literacy awareness workshop plans, re-designed discharge process strategies, easy-to-understand telehealth consent forms, multilingual medication instructions, plain-language communication guides, and much more. However, Weiss believes the previously created tools are underused.

Wolf shares similar sentiments. For him, health literacy has been a public health crisis for quite some time. “These individuals have significant difficulty performing everyday tasks of health care,” Wolf said. “These individuals are at a higher risk of poor treatment knowledge, not engaging in recommended health behaviors, have worse chronic disease outcomes, greater risk of hospitalization, poor health status, and greater mortality risk.”

As a community organizer, Raymond finds health literacy a public health crisis. The constant need to create and adopt a new curriculum demonstrates how pertinent health literacy is to lifestyle and wellbeing. Despite the debate on what exactly to refer to health literacy as, the recent rise in attention to health literacy is slowly pushing the topic into the public eye.

The Department of Health and Human Services has a Healthy People 2030 plan. While health literacy is not an explicit objective, one of the major goals is social determinants of health. A subtopic of social determinants of health is health communication. Unfortunately, health literacy was carried over as a minor objective from Healthy People 2020 — meaning that it was not achieved yet. Wolf believes health literacy should be a primary objective and paramount in mainstream culture. According to Weiss, there are political, economic, social, and cultural repercussions to not centering health literacy within the healthcare industry. And for Raymond, health literacy is fundamental to every aspect of American life, both in and out of healthcare settings.

There is not a catch-all solution to improve health literacy overnight. In fact, the most effective changes would come from overhauling the healthcare system, increasing equitable education, and restructuring medical school curriculum. In the meantime, leaders such as Weiss, Wolf, and Raymond are working to implement a range of specific goals.

Viable short-term solutions and beyond.

1. Educate patients on resources available to them outside of the clinic and office settings.
2. Incorporate plain language in provider-to-patient conversations.
3. Ensure patient literature does not exceed a fifth grade reading level.
4. Optimize patient understanding with icons and revised messaging.
5. Enhance prescription label design by utilizing the Universal Medical Schedule.
6. Advise doctors and clinicians on available AHRQ tools.
7. Train medical providers to use the “Teach Back Technique” to confirm patient comprehension.
8. Promote sympathetic or rather empathetic communication between provider and patient.

While community organizations work to bolster health literacy outside of clinic walls, doctors and public health researchers hope to see more institutional changes within healthcare communication. Organizers and medical professionals within the health literacy field all have one thing in common, they work to simplify confusing and hard-to-understand health information.

“I don’t want to be the reason why my patient calls their ‘doctor friend’ to explain what we discuss during a clinic visit,” Weiss said. “Just explain things like how you would explain something to your grandmother — nice and simple.”