Patient Education and Health Literacy in the United States

Wendy Hiller Gee, M.A.

When patient education materials are developed certain assumptions about the audience must be made, such as gender ratio, ethnicity, and age. Diseases and conditions are often found in particular subsets of the population, which will determine the focus of text and illustrations in education materials. In the absence of condition-specific audience information, census data can help form an understanding of the end-user demographic.

Assumptions about audience literacy are also often made when developing patient education materials. Illiteracy is a widespread problem in the United States, and can be further described in terms of health literacy. This concept has direct bearing on the choices health educators make when designing, writing, and illustrating patient education materials. Medical illustrators can create more effective illustrations for a target patient audience when they understand the issues associated with low health literacy. They also are uniquely positioned to advocate for health literacy appropriate art and text when working with writers and health educators to develop patient education materials.

Who Is the “Patient” in Patient Education?

As we develop patient education materials, we often make certain assumptions (e.g., age, ethnicity, or literacy) about our end users—the people who ultimately, we hope, will read and understand the information we present to them. We make decisions on art, text, and organization based on what we believe about the audience we’re hoping to educate. However, such beliefs and assumptions may not reflect the true nature of the population we are attempting to serve. To understand the characteristics of the target audience is to have an initial framework for making decisions about how to present information. This article describes facts about general demographic characteristics to clarify what is known about the American population. In addition, this article will discuss the concept of health literacy and how it affects patient education.

Who Is the American Patient?

There is obviously no simple answer to this question, but we can learn a lot from demographics. As educators, we concern ourselves primarily with the following information about people:

• Age group
• Gender
• Ethnicity

Based on the 2000 U.S. Census data (U.S. Census Bureau n.d.), we can derive some basic answers about the U.S. population as a whole (the total population was reported in that census as 281,421,906).

Age

One of the things we hear often is that the baby-boomer (Americans born between 1946 and 1964) population is getting older, and as it ages, marketing and other trends shift to accommodate it. The 2000 Census does indeed report the majority of the population in that age range:

Table 1

Gender

Biology generally dictates an almost-even chance of male and female births, and the population reflects that: 49.1 percent male and 50.9 percent female. However, the breakdown shifts in certain age groups. For example, of the population aged 18 years and over (total = 209,128,094), 48.3 percent is male and 51.7 percent is female. However, of the population aged 67 years and over (total = 31,101,522) the percentages change to 40.5 percent male and 59.5 percent female. Certain diseases or conditions affect men and women disproportionately, but considering all factors we can still safely make two common assumptions about gender:

• There are roughly the same numbers of men and women overall.
• Women tend to live longer than men.

Note: These numbers do not equal 100 because of individuals reporting as two or more races.

Demographics and Medical Illustration

The basic demographic information described above can help medical illustrators in planning out patient education pieces. For example, suppose that a patient education piece is targeted to the general population and an illustration is being planned to show a typical group of people. The illustrator can use demographic information as a rational basis for showing a higher percentage of women to men, a higher overall age group, or estimating a ratio of differing ethnicities. Or perhaps a purely anatomic illustration that is non-gender specific may be better suited to a female form than to a male form, based on the age group of the target audience. Even very diagrammatic art can be sensitive to demographics through the subtle use of varying skin tones or silhouettes. Further study to determine the efficacy of demographically sensitive illustrations would be helpful.

Health Literacy

One of the most challenging parts of creating patient education materials is to ensure that the target audience will understand and retain the necessary health information. To serve end users, patient education materials need to take into account basic literacy and health literacy skills in the United States.

Health literacy is defined as the “degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (Mayer, 2004). This definition takes basic literacy another step—not only do patients need to be able to read, they must have the ability to comprehend what they read and act on it. This broadens our understanding of “low-lit” readers enormously. Mayer reports that the 1992 National Adult Literacy Survey (NALS) estimates 21-23 percent of the U.S. population (40-44 million people) is functionally illiterate (defined as the inability to do simple reading or mathematical tasks). According to that same study, an additional 25-28 percent of U.S. adults (50 million people) have marginal literacy (defined as the ability to locate information in a text and
make basic inferences from written materials). This means that a staggering 90 million people in the United States have serious health literacy challenges, making it difficult for these people to understand even simple instructions, such as a directional sign in a hospital.

An important factor contributing to health literacy (or lack of it) is, of course, language. Many patients with low health literacy speak English as a second language. Census data (U.S. Census Bureau n.d.) show that 82.1 percent of the population speaks English only.The remaining 17.9 percent represents 46,951,595 U.S. citizens who speak a primary language other than English.

Another factor impacting health literacy is age. According to the American Public Health Association (Medscape, 2004), two-thirds of U.S. adults age 60 or over have literacy problems. At a public hospital, 81 percent of such patients were unable to understand fundamental written materials such as a prescription label on a pill bottle.

A report by the Institute of Medicine (IOM) (Health Illiteracy, 2004) suggests a complexweb of factors contributing to health illiteracy, including language, age, ethnic or racial bias, the education system, culture, and society, among others. The American Medical Association has developed a health literacy training kit for physicians in order to begin raising awareness of the health literacy problem among health care professionals. The IOM recommends a broad range of actions that medical, educational, insurance, governmental, and other entities can take to begin addressing the health literacy problem in the United States.

There is as yet no clear data on whether visuals are easier to comprehend than text for low-literate readers, but we do know that uncomplicated illustrations with a story are effective in conveying health-care messages (Doak, 1996). Further study is needed to understand the role of visuals in health literacy.

Medical Illustration and Health Literacy

How do the communication problems inherent in low literacy and low health literacy affect medical illustrators? Understanding the literacy trends in the United States can giveillustrators another frame of reference for making decisions about appropriate art for a given target audience. For example, knowing that close to 20 percent of the U.S. population speaks English as a second language may be a basis in some cases for a medical illustrator to keep leader lines and labeling to a minimum, use common anatomicterms where possible, or make text elements of an illustration secondary to the visual message. Or, realizing that age is a significant factor in health literacy, an illustrator can plan images that are larger on the page, with room for text elements at a larger point size.

There is still little data about how visuals are interpreted by low-literacy readers, but medical illustrators can use demographic data and an awareness of health illiteracy to develop illustrations of appropriate complexity for patient education materials. Not every illustration needs to be diagrammatic, but medical illustrators should carefully consider factors such as level of detail, anatomic orientation, and consistency among groups of illustrations when developing a patient education piece.

Medical illustrators are often in a position to advocate for appropriate text and visuals when partnering with writers and health care professionals on a patient education project. For instance, charts and graphs or exaggerated perspectives may not be easily interpreted by low-literacy readers, and would not be a good choice for certain patient education materials reaching a wide range of end users. Basic demographic and literacy information can be a factual basis to ask a client more detailed questions about a target audience, as well as to suggest ways to develop an effective product.

More study about how specific types of visual materials are interpreted by low-literacy and particular demographic groups is needed. For instance, how do functionally illiterate patients interpret standard anatomic sections and views? Can visuals alone result in improved patient health outcomes in low-literacy populations? Questions also arise about how cultural awareness may play a role in developing appropriate patient education materials. For example, how are different colors interpreted among cultural subsets of the U.S. population? As the population of the United States grows more diverse, understanding some of its characteristics may help illustrators in developing effective patient education materials.

Author
Wendy Hiller Gee is a Certified Medical Illustrator with a master’s degree in medical illustration from the University of Texas Southwestern Medical Center. She is currently Senior Medical Art Manager at Krames Communications in San Bruno, Calif.

References
Court-Johnson, Susan, ed. “Health ‘Illiteracy’ May Cause Disparities in Care.” Patient Education Management 11, no. 6 (June 2004): 68-70.
Doak, C. C., L. G. Doak, and J.H. Root. 1996. Teaching Patients with Low Literacy Skills, Philadelphia: JB Lippincott.
United States 2000 Census Summary Part 1
United States 2000 Census Summary Part 2
United States 2000 Census Summary Part 3
U.S. Census Bureau
Medscape
Mayer, G.G., Villaire M. Low health literacy and its effects on patient care. J Nurs Adm. 2004 Oct;34(10):440-442.