I’ve been a health educator for more than 30 years. Since I started this work in the 1980s, I’ve observed a transformation in how the health professions think about communicating information as we’ve embraced the concept of health literacy. Introduced in the 1980s, health literacy is now central to our strategies for written and verbal communication, as we work to help patients grasp otherwise confusing medical information. An essential part of these efforts is a focus on health equity. Health educators consider differences in language, culture, and level of health literacy, striving to develop health communication that is equitable and effective for all.
Simple, straightforward information tailored to meet the needs of our diverse patient populations is essential to helping people struggling with illnesses like cancer and diabetes or caring for a sick loved one. We’ve made a lot of progress over the last 30 years, but we still have a lot of work to do. As we deal with the COVID-19 pandemic and the strain it has put on every aspect of our daily lives and those of our patients, providing clear health information that meets patients where they are is more important than ever.
To illustrate the importance of clear communication, I often begin health literacy presentations by sharing a true story from only three years ago.
I took my 15-year-old son to the hospital one day because he woke up lethargic and confused, with a 105-degree fever. Due to a virulent flu strain, the emergency department (ED) was overwhelmed, resulting in a four-and-a-half-hour wait. While we waited, I viewed my surroundings and the overcrowded ED from a public health perspective, listening to different languages and noticing other demographic differences, including age and race. I also observed parents asking older children to help read and complete hospital forms, and others needing professional translators. Although we were a diverse group, we shared the anxiety of not knowing how best to care for our sick loved ones.
At 1:30 a.m., nine hours after we arrived at the ED, the doctor discharged my son with these exact words:
Doctor: Your son has influenza A. I’m prescribing Tamiflu. Give him one pill BID. I’m also prescribing Zofran for the nausea. He needs to take one pill sublingually as needed. Do you have any questions?
My son didn’t talk much on the drive home, but he asked a question that I will never forget: “Mom, do you know how to take care of me?” When I asked why, he said he was worried about his diagnosis because the doctor said he had type A. And he was confused about how to take his medicine since he heard the doctor say to take it BID. After considering the information, I translated it into simple terms, to my son’s visible relief. After a long pause he asked, “Mom, why didn’t the doctor just say that?”
I had understood terms such as BID because I spent many years as a patient educator working in medical clinics where these terms are commonly used—but the doctor didn’t know that. How many other parents received the same discharge instructions that night and were too intimidated or ashamed of their lack of knowledge to ask for clarification? How many left the hospital confused and apprehensive about their ability to care for their children? When providers communicate in terms that are easy to understand, they help to create an environment where patients, no matter their education level, language, or age, are better able to comprehend health information, ask questions, and make decisions that improve their health. Striving to empower all patients to take charge of their health through clear communication is where health literacy and health equity meet.1
Health Literacy Is a Shared Responsibility
Every decade, health professionals across the United States convene to establish 10-year goals and objectives aimed at improving the health of our nation. With Healthy People 2030, health literacy has taken a central role for the first time; health literacy was made a focus during the development process,2 and one of the primary goals for 2030 is to “Eliminate health disparities, achieve health equity, and attain health literacy to improve the health and well-being of all.”3
Although numerous definitions of health literacy exist, earlier iterations aligned more with personal health literacy or one’s ability to do something. Healthy People 2030 expanded the concept by adding organizational health literacy, which places the responsibility on both parties—the person receiving the information and the organization disseminating it:
- Personal health literacy is the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.
- 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.4
As the growing research on the impact of health literacy shows, when clinicians and patients both engage to build patients’ knowledge of their conditions, treatment options, and potentially beneficial lifestyle changes, outcomes tend to improve.5 Studies from the last decade have found, for example, fewer visits to emergency care or hospitalizations, shorter hospital stays, more preventive screenings and care, greater ability to understand and follow care instructions, and, particularly for elderly people, better overall health and longer lives.6 Still, there is much research to be done to better understand how to improve patients’ knowledge and impact their behavior.7
The Role of Health Literacy in Improving Health Equity
Health equity, in the simplest terms, means everyone has opportunities to achieve and maintain their optimal health—no matter their age, racial or ethnic background, gender, sexual orientation, zip code, education, employment, or other (currently influential) factors.8 The fight for health equity involves addressing the conditions that lead to health disparities, including improving access to quality medical care, healthful food options,9 and other services and resources that support health.* These are significant challenges
- in predominantly Black and Latinx neighborhoods, the products of centuries of systemic housing and environmental discrimination;†
- on Native American lands, where people often have to travel hours to obtain fresh food, safe water, and healthcare;10 and
- in rural communities, where health facilities are closing at an astonishing rate.11
While advancing health equity requires sustained, collaborative work on numerous fronts, focusing on improving health literacy is one key way health professionals can work to address health disparities every day.12
During the pandemic, health inequities have become even more apparent, as people in lower-income neighborhoods and Black, Native American, and Hispanic people suffer disproportionately from higher rates of COVID-19 exposure, severe illness, and mortality.13 Clear communication is vital in communities where infection and positive testing rates are high. Efforts to reduce risk of exposure to COVID-19, promote proper use of face coverings, and obtain and distribute vaccines require effective communication, beginning with language that is easier to read and understand.
The Development of Health Literacy: From Jargon to Communication
As a health educator in the 1980s, my role was to inform patients about their new diagnoses and walk them through treatment options. Patient education protocols called for verbal instructions supplemented with printed handouts. However, the verbal explanations and the provided printed materials often relied heavily on confusing medical terminology and acronyms. I frequently witnessed clinicians referring to some patients as “noncompliant” for failing to follow directions. Here is an example to illustrate the point.
Mr. Howard, a 59-year-old patient, saw his doctor to recheck his blood pressure and learn the results of a recent blood test.
Doctor: Mr. Howard, the results of your fasting lipid panel show that your LDL levels are elevated. You also have hypertension. I recommend that you reduce your intake of saturated fats, decrease your sodium intake to reduce your risk of cardiovascular disease, and exercise. Do you have any questions?
Three months later, Mr. Howard’s cholesterol levels and blood pressure were unchanged. He told the nurse who measured his blood pressure that he’d just returned from lunch with colleagues and enjoyed his favorite meal: a steak and french fries.
Mr. Howard was an educated man—the clinician and I both knew he had a college degree in aeronautical engineering. He was clearly capable of understanding complex subjects, but when it came to his diagnosis, he had appeared uncertain and apprehensive. And yet he hadn’t asked any questions and didn’t seem to have followed the recommendations regarding his diet. Was he “noncompliant,” as the provider suggested to me after seeing his follow-up bloodwork, or was there something else going on?
It wasn’t until health literacy was introduced in the now-foundational book Teaching Patients with Low Literacy Skills, first published in 1985,14 that many of us in the health professions began to realize the problem wasn’t solely (or perhaps even primarily) with the patients.‡ If we wanted to help our patients improve their health, our method of communicating needed to change. Of course, some patients are unwilling to follow treatment instructions, much less broader health advice, and others have financial, logistical, or physical challenges that prevent them from attaining their health goals. However, as health professionals absorbed the concept of health literacy and effective communication techniques, we realized we were often using terms our patients simply did not understand.
Two major studies of adult literacy illuminated an important contributor to the problem. According to the National Adult Literacy Survey, first released in 1993, up to half of the US adult population had reading levels (in English) considered marginal or low.15 Then, the 2003 National Assessment of Adult Literacy, released in 2005, confirmed fairly widespread difficulties with comprehending more complex text, showing about one-third of adults having difficulty with prose and document literacy and about one-half having difficulty with quantitative literacy.16 Importantly, this study also had a health literacy component, which found that while 65 percent of adults had “intermediate” or “proficient” health literacy, 22 percent performed at the “basic” level, and 14 percent at “below basic.”17 Prior to these studies, we had thought low literacy was a problem for a small segment of the population, not nearly as widespread as the research indicated. As such, many patient education handouts in the 1980s were written at reading levels that up to half of the US population could not fully comprehend.18 This issue persists: in 2019, 43 million adults in the United States were considered to have low reading levels,19 and research indicates that far more needs to be done to develop patient education resources that are written at appropriate levels.20
Building on the 1993 literacy survey and follow-up work by a special committee21 focused on helping clinicians grasp patients’ comprehension challenges, the American Medical Association Foundation released Health Literacy and Patient Safety: Help Patients Understand. This instructional video (which also had a companion guide) introduced health literacy, offered frank explanations by patients of what they did not understand and the embarrassment that prevented them from asking for clarifications, and showed clinicians teaching patients. In one example, a clinician asked a patient to repeat what was explained to her. This patient, among others in the film, struggled to recite the information because she was unfamiliar with the medical jargon and acronyms.22
Today, we continue to be guided by the 2003 National Assessment of Adult Literacy, which showed that adults are more at risk for low health literacy if they
- are age 65 or older;
- live below the poverty level;
- speak another language alone or in addition to English;
- belong to certain racial/ethnic groups, including Black, Hispanic, American Indian/Alaska Native, or multiracial;
- never attended or did not complete high school; or
- have only a high school or high school–equivalent (GED) education.23
Clearly, people in these demographic groups are more apt to experience problems with health literacy. However, it’s a misconception to think that only these groups struggle. People of all walks of life—including Mr. Howard—experience health literacy problems, regardless of education, age, or socioeconomics. While improved health literacy—including paying particular attention to the needs of members of these groups—is essential to advancing health equity, everyone benefits from clear health communication.
Unfortunately, some describe health literacy, especially the use of simpler language that is easier for people without a medical education to understand, as a “dumbing down” of health information.24 That’s simply not true, as you’ll notice in the example below.
A 43-year-old female patient, accompanied by her sister, visited her doctor to learn the results of a recent biopsy. The patient has a master’s degree in public health, while her sister is an oncology nurse specializing in uterine, prostate, and cervical cancers. Here’s how the consultation played out:
Doctor: The biopsy results show you have a carcinoid tumor on the ampulla of Vater. It is benign, but you need to follow up with an oncologist as soon as possible. Based on the initial findings, it has not metastasized, but I will schedule an ERCP to perform another biopsy and possibly a tumorectomy. Do you have any questions?
Unless you have a background in gastroenterology, which involves the intestines and stomach, it’s very likely that you’d be confused, especially when facing the shock of this unusual diagnosis. Noticing that the patient was unable to process the information, her sister intervened.
Patient’s sister: Doctor, I’m an oncology nurse, but I’m not familiar with the ampulla of Vater. Would you please
1. Show us a picture of the ampulla of Vater with the surrounding organs and describe its function?
2. Explain the reason you’re using the terms benign, which means noncancerous, and metastasize, which refers to the spread of cancer. And the reason for seeing an oncologist?
3. Define carcinoid tumor?
I’m sure we’ll have other questions, but let’s start there.
The doctor proceeded to explain using illustrations and simpler terms until both the patient and her sister were satisfied. By the end, they understood the complex language that the doctor had used initially, which increased their medical knowledge and their ability to pursue treatment.
A critical point for healthcare providers is to see that in this case study, the communication was not oversimplified to the point of “dumbing down,” but the information was fully explained. Unfortunately, not all patients feel comfortable advocating for clear communication, especially if they are at risk for low literacy. However, if health professionals incorporate health literacy strategies into patient teaching as a general protocol, this will ensure all patients have an equal opportunity to understand and retain health information.
Three Recommendations for Communicating with Patients
1. Use Plain Language
The COVID-19 pandemic has meant the rapid introduction of new vocabulary into our everyday language, causing chaos, fear, and confusion for many people. Social distancing, quarantine, isolation, and contact tracing are only a few of these terms. The terms quarantine and isolation may be clear to many of us, but what do they mean in the context of a pandemic? These terms give us cause to investigate further. And yet, many people (especially those with low health literacy) may not realize if their understandings of these terms differ from healthcare professionals’ intended meanings and might perpetuate confusion throughout their communities.
Plain language is critical to successful communication about COVID-19 risk and prevention, vaccines, and other topics related to this or other diseases and conditions. It involves identifying complex jargon and terminology and then choosing common language substitutes that the general public is better able to understand. When people comprehend health information, they have a much greater opportunity to follow instructions, make informed decisions, and properly care for themselves or their loved ones.25 Here are a few examples of plain language we often see in communication about COVID-19:
- Mitigate: Slow the spread of the virus.
- Social distance: Stay at least six feet from others.
- COVID-19 vaccination: A shot to help protect you from getting COVID-19.
- Isolate: Separate yourself from others if you have COVID-19.
Think about the terms and acronyms you and your colleagues use daily that others outside of your workplace may not understand. Then boil them down to simple, accurate substitutes. For example, instead of saying hypertension, say high blood pressure. Then describe what it means. Rather than ambulate, say walk around or move. The Plain Language Medical Dictionary is a helpful resource that offers substitute words for complex medical terms.
2. Vet Written Materials
Many healthcare professionals lack the time or resources to write and create their own printed and web-based media. Instead, they identify quality patient education resources written by others and put them to use in their own clinical settings. When I am reviewing materials, I try to keep a variety of patients in mind—from those who may have low literacy to those who are simply too shy to ask questions. It’s important to ensure that everyone has access to the same easy-to-understand written information and relatable illustrations, giving consideration to language and culture.
The Federal Plain Language Guidelines manual offers comprehensive instructions on writing and designing consumer-friendly information. It also serves as a useful tool to vet the quality of off-the-shelf materials.26 The following is a short checklist of plain language tips developed from the federal guidelines:
- Plain language: Content is written in layperson terms or defines medical terminology as needed.
- Chunking: Messages are grouped into logical sections.
- White space: The page is not filled with text; paragraphs or sections vary in length but are generally short and visually manageable; there are sections with no text or images (commonly referred to as white space) to provide eye rest and make the page seem less difficult to navigate.
- Type size: Type size is 12 or 14 point. Use a larger type size, 14 or 16 point, for older adults to accommodate vision problems.
- Images: Culturally appropriate images are used to illustrate important points.
For years, I taught type 2 diabetes self-management classes where patients learned meal planning, self–blood glucose monitoring, and other subjects related to living well with a chronic disease. When I was hired to teach this class in the 1990s, my supervisor provided me with copies of patient education handouts as a foundation for my training. The problem was that the handouts resembled a passage from a medical dictionary. I purchased a book called Diabetes for Dummies instead. My colleagues across the country had similar experiences. As we collectively realized that patients were often overwhelmed with the amount of new information and apprehensive about their ability to succeed, health communication slowly evolved to have a greater focus on meeting patients’ communication needs and supporting their understanding as an important part of meeting their physical and mental health needs.
Take a look at the two diabetes definitions that follow and note the differences. I’ve chosen two extremes: one that is concise and complex from a dictionary, and one that is written in plain language from a center that emphasizes communicating with the public. The differences are striking and show the value of plain language writers, who are trained to extract health information from complex definitions to create effective health communication.
Definition of diabetes mellitus
A variable disorder of carbohydrate metabolism caused by a combination of hereditary and environmental factors and usually characterized by inadequate secretion or utilization of insulin, by excessive urine production, by excessive amounts of sugar in the blood and urine, and by thirst, hunger, and loss of weight.27
Centers for Disease Control and Prevention
What Is Diabetes?
Diabetes is a chronic (long-lasting) health condition that affects how your body turns food into energy.
Most of the food you eat is broken down into sugar (also called glucose) and released into your bloodstream. When your blood sugar goes up, it signals your pancreas to release insulin. Insulin acts like a key to let the blood sugar into your body’s cells for use as energy.
If you have diabetes, your body either doesn’t make enough insulin or can’t use the insulin it makes as well as it should.28
You’ll notice the dictionary groups many subjects together, including pathophysiology, signs, symptoms, and risk factors. But the second example incorporates plain language guidelines, including “chunks” of information, a title, and simpler terms. Still, even the plain language version requires a substantial amount of background knowledge for full comprehension. Written materials should serve as supports and reminders—not the sole or primary explanations. There is no substitute for a thorough explanation, given verbally, with text and image enhancements and with genuine checks for understanding.
3. Take Time for Teach-Back
For providing explanations and instructions, one essential method is teach-back. This is a technique that evaluates how effectively we convey information rather than how well the patient understands. (There are several steps to teach-back that are beyond the scope of this article; see here for more details.)
Begin by conveying the message to the patient using simple terms, written communication, and illustrations as needed. Then, ask the patient to explain the information back to you in their own words. This critical step allows the patient to think about what they heard, process the information, and demonstrate their understanding by restating the information. It also gives you an opportunity to evaluate how well you explained the information and correct any misinformation by rewording the instructions. These steps are repeated until the patient clearly understands.29
Let’s revisit the example I introduced earlier when my son was discharged from the hospital. But this time, let’s focus on the doctor’s instructions.
Doctor: Your son has influenza A. I’m prescribing Tamiflu. Give him one pill BID. I’m also prescribing Zofran for the nausea. He needs to take one pill sublingually as needed. Do you have any questions?
Here’s how those same instructions might be conveyed using the teach-back method to communicate with and ensure the understanding of a mother who is not a healthcare professional:
Doctor: Your son has influenza A. I’m prescribing Tamiflu. Give him one pill BID. I’m also prescribing Zofran for the nausea. He needs to take one pill sublingually as needed. Mrs. Smith, I know it’s late and you’ve been here for more than nine hours, but I just want to be sure I explained everything correctly. Would you please explain to me what I just told you?
Mother: Well, I’m not sure, but I think influenza is the flu. What does A mean?
Doctor: Yes, you’re right that influenza is the flu. A and B are just common types of the flu, but they don’t indicate anything serious.
Mother: So my son needs to take the medicine you’re giving him. I know he needs one pill, but you said something about B and D. Then you’re giving him something else for the nausea. Is he supposed to drink that, too?
Doctor: Let me explain the medicines again. I didn’t explain it well the first time. The flu medicine is called Tamiflu. Give your son one pill two times every day. He should take one in the morning and one at night. Zofran is for the upset stomach. If your son feels nauseous, like he might throw up, he needs to put one pill under his tongue. The pill will slowly melt and make his stomach feel better. Since I was not clear the first time, let’s check again. Will you explain how to give him his medicine?
Mother: My son needs to take two Tamiflu pills every day. If he feels like he’s going to throw up, he needs to put one Zofran pill under his tongue.
Doctor: Yes, that is correct. What other questions do you have?
Mother: Nothing for now.
You’ll notice this exchange is longer than the original and includes some back-and-forth in which the doctor stops to reteach as the mother makes clear what she doesn’t understand. The doctor is thoughtful about taking responsibility for being unclear (which helps prevent the mother from feeling embarrassed about not understanding), and the exchange ends with the open-ended question, “What other questions do you have?” The open-ended phrasing invites an individual to share freely, whereas a close-ended question like “Do you have any questions?” forces a simple yes or no response. A patient who speaks another language or has less education might respond no in the original scenario because they may be too embarrassed to admit they don’t understand the term BID. Using the teach-back method would have alerted the doctor about the uncommon term and allowed for immediate correction.
Reducing health disparities through effective communication using plain language, vetted written materials, and teach-back involves coordinated effort and training at personnel, organizational, and policy levels. While organizational and policy changes will require sustained efforts, the techniques described here can provide a strong foundation for patient education and improving health equity now. Although health educators have worked to enhance health communication over the years, our work isn’t done. It’s important for all of us working in health professions to slow down and consider the ways we communicate and the implications of miscommunication. As we work toward health equity, we must think about the information necessary to empower patients to improve their health and the health of their communities.
Rachel Roberts, MPH, is the community health engagement and strategy manager at the Institute for Healthcare Advancement. In addition, she is a part-time instructor in the public health and kinesiology departments at California State University, Fullerton. Roberts has enjoyed a career in public health for over 30 years.
*If you would like to start a conversation about advancing health equity with your colleagues, the American Public Health Association’s three-page guide “Creating the Healthiest Nation: Advancing Health Equity” is a great place to start. (return to article)
†For more on environmental racism, see Harriet A. Washington’s “Healing a Poisoned World” in the Fall 2020 issue of AFT Health Care. (return to article)
‡Teaching Patients with Low Literacy Skills discusses patient teaching using illustrations, graphics, and simple terms rather than medical jargon. According to the authors, it became “the major resource book available to health providers who knew that their patients weren’t getting the message” (2nd ed., p. v). (return to article)
1. National Institute for Children’s Health Quality, “The Intersection of Health Equity and Health Literacy,” Insights, nichq.org/insight/intersection-health-equity-and-health-literacy.
2. US Department of Health and Human Services, Office of Disease Prevention and Health Promotion, “Healthy People 2030,” health.gov/our-work/healthy-people/healthy-people-2030.
3. US Department of Health and Human Services, Office of Disease Prevention and Health Promotion, “Healthy People 2030 Framework,” health.gov/healthypeople/about/healthy-people-2030-framework.
4. US Department of Health and Human Services, Office of Disease Prevention and Health Promotion, “Health Literacy in Healthy People 2030,” health.gov/our-work/healthy-people/healthy-people-2030/health-literacy-healthy-people-2030.
5. M. McDonald and L. Shenkman, “Health Literacy and Health Outcomes of Adults in the United States: Implications for Providers,” Internet Journal of Allied Health Sciences and Practices 16, no. 4 (2018): Article 2.
6. N. Berkman et al., “Low Health Literacy and Health Outcomes: An Updated Systematic Review,” Annals of Internal Medicine 155, no. 2 (2011): 97–107; S. Kripalani et al., “Health Literacy and the Quality of Physician-Patient Communication During Hospitalization,” Journal of Hospital Medicine 5, no. 5 (2010): 269–75; J. Wright et al., “Association of Health Literacy with Postoperative Outcomes in Patients Undergoing Major Abdominal Surgery,” JAMA Surgery 153, no. 2 (2018): 137–42; and M. Fabbri et al., “Health Literacy and Outcomes Among Patients with Heart Failure: A Systematic Review and Meta-Analysis,” JACC: Heart Failure 8, no. 6 (2020): 451–60.
7. R. Walters et al., “Establishing the Efficacy of Interventions to Improve Health Literacy and Health Behaviours: A Systematic Review,” BMC Public Health 20, no. 1040 (2020); J. Zibellini et al., “Effect of Health Literacy Interventions on Pregnancy Outcomes: A Systematic Review,” Women and Birth 34, no. 2 (2021): 180–86; and P. Dahal and H. Hosseinzadeh, “Association of Health Literacy and Diabetes Self-Management: A Systematic Review,” Australian Journal of Primary Health 25, no. 6 (2019): 526–33.
8. American Public Health Association, “Health Equity,” apha.org/topics-and-issues/health-equity.
9. P. Ohri-Vachaspati et al., “Healthy Food Access in Low-Income High-Minority Communities: A Longitudinal Assessment—2009–2017,” International Journal of Environmental Research and Public Health 16, no. 13 (2019): mdpi.com/1660-4601/16/13/2354; and Healthy Places, National Center for Environmental Health, “Retail Food Stores: Grocery Stores/Supermarkets and Small Food Stores,” Centers for Disease Control and Prevention, cdc.gov/healthyplaces/healthtopics/healthyfood/retail.htm.
10. P. Kaufman, C. Dicken, and R. Williams, Measuring Access to Healthful, Affordable Food in American Indian and Alaska Native Tribal Areas, EIB-131 (US Department of Agriculture, Economic Research Service, 2014), 12, ers.usda.gov/webdocs/publications/43905/49690_eib131_errata.pdf?v=0; US Water Alliance and Dig Deep, Closing the Water Access Gap in the United States: A National Action Plan, March 2020, closethewatergap.org/wp-content/uploads/2020/03/Dig-Deep_Closing-the-Water-Access-Gap-in-the-United-States_EXECUTIVE-SUMMARY-1.pdf; and C. Willig et al., “Improving Native American Elder Access to and Use of Health Care Through Effective Health System Navigation,” BMC Health Services Research 18 (2018): Article 464, bmchealthservres.biomedcentral.com/articles/10.1186/s12913-018-3182-y.
11. Cecil G. Sheps Center for Health Services Research, “179 Rural Hospital Closures: January 2005–Present (135 Since 2010),” University of North Carolina at Chapel Hill, www.shepscenter.unc.edu/programs-projects/rural-health/rural-hospital-c….
12. R. Logan et al., “Health Literacy: A Necessary Element for Achieving Health Equity,” discussion paper, National Academy of Medicine, July 24, 2015, nam.edu/perspectives-2015-health-literacy-a-necessary-element-for-achieving-health-equity.
13. Centers for Disease Control and Prevention, “COVID-19 Racial and Ethnic Health Disparities,” cdc.gov/coronavirus/2019-ncov/community/health-equity/racial-ethnic-disparities/index.html.
14. C. Doak, L. Doak, and J. Root, Teaching Patients with Low Literacy Skills (Philadelphia: J. B. Lippincott, 1985); and C. Doak, L. Doak, and J. Root, Teaching Patients with Low Literacy Skills, 2nd ed. (Philadelphia: J. B. Lippincott, 1996). For a free online version of the second edition, see hsph.harvard.edu/healthliteracy/resources/teaching-patients-with-low-literacy-skills.
15. National Center for Education Statistics, Adult Literacy in America: A First Look at the Findings of the National Adult Literacy Survey, NCES 1993-275, 3rd ed. (Washington, DC: US Department of Education, 2002), nces.ed.gov/pubs93/93275.pdf. See also National Center for Education Statistics, “National Assessment of Adult Literacy,” US Department of Education, nces.ed.gov/naal/kf_demographics.asp#1 for a comparison of results from 1992 and 2003.
16. M. Kutner, E. Greenberg, and J. Baer, National Assessment of Adult Literacy (NAAL): A First Look at the Literacy of America’s Adults in the 21st Century, NCES 2006-470 (Washington, DC: National Center for Education Statistics, 2006), nces.ed.gov/naal/pdf/2006470.pdf.
17. M. Kutner et al., The Health Literacy of America’s Adults: Results from the 2003 National Assessment of Adult Literacy, NCES 2006-483 (Washington, DC: National Center for Education Statistics, 2006), nces.ed.gov/pubs2006/2006483.pdf.
18. T. Davis et al., “The Gap Between Patient Reading Comprehension and the Readability of Patient Education Materials,” Journal of Family Practice 31, no. 5 (1990): 533–38; M. Wilson, “Readability and Patient Education Materials Used for Low-Income Populations,” Clinical Nurse Specialist: The Journal for Advanced Nursing Practice 23, no. 1 (January/February 2009): 33–40; and C. Estrada, “Anticoagulant Patient Information Material Is Written at High Readability Levels,” Stroke 31, no. 12 (2000): 2966–70.
19. US Department of Education, “Data Point: Adult Literacy in the United States,” NCES 2019-179, July 2019, nces.ed.gov/pubs2019/2019179.pdf.
20. See, for example, L. Stossel et al., “Readability of Patient Education Materials Available at the Point of Care,” Journal of General Internal Medicine 27, no. 9 (2012): 1165–1170; and E. Squires and H. Ou, “Do We Have Effective Patient Education Materials for Age-Related Hearing Loss?,” American Journal of Audiology 29, no. 1 (March 2020): 79–87.
21. Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association, “Health Literacy: Report of the Council on Scientific Affairs,” JAMA 281, no. 6 (1999): 552–57.
22. AMA Foundation, Health Literacy and Patient Safety: Help Patients Understand, 2007, YouTube video, 23:18, posted by “AMAFoundation,” August 27, 2010, youtube.com/watch?v=cGtTZ_vxjyA&t=16s. See also the companion guide: B. Weiss, Health Literacy and Patient Safety: Help Patients Understand, 2nd ed. (AMA Foundation, 2007), partnershiphp.org/Providers/HealthServices/Documents/Health%20Education/CandLToolKit/2%20Manual%20for%20Clinicians.pdf.
23. Kutner, Greenberg, and Baer, National Assessment.
24. “Can Health Literacy REALLY Improve Patient Outcomes?,” The Loop, University of Iowa, October 7, 2014, medcom.uiowa.edu/theloop/health-care/can-health-literacy-really-improve-patient-outcomes; and S. Stableford and W. Mettger, “Plain Language: A Strategic Response to the Health Literacy Challenge,” Journal of Public Health Policy 28, no. 1 (2007): 71–93, jstor.org/stable/4498942?seq=1.
25. F. Warde et al., “Plain Language Communication as a Priority Competency for Medical Professionals in a Globalized World,” Canadian Medical Education Journal 9, no. 2 (2018): e52–e59.
26. Plain Language Action and Information Network, Federal Plain Language Guidelines, 2011, plainlanguage.gov/guidelines.
27. Merriam-Webster, s.v. “diabetes mellitus,” merriam-webster.com/dictionary/diabetes%20mellitus.
28. Centers for Disease Control and Prevention, “What Is Diabetes?,” cdc.gov/diabetes/basics/diabetes.html.
29. Always Use Teach-Back, “Welcome to the Always Use Teach-Back Training Toolkit,” teachbacktraining.org/home.
[Illustrations by Rachel Sender]