by Suzanne Manneh, MPH
I had never seen her so demoralized. My former client—I’ll call her Crystal—was indignantly, and understandably so, describing her recent emergency room encounter. It reinforced what my public health studies and professional experience had taught me about access to healthcare and health outcomes. Crystal’s proficiency in English was minimal, and she had a middle-school education. A single mother, she was struggling to support her toddler son and obtain asylum for a more stable life in the United States. In the hospital, there were no translators—nor documents translated—in her native language, which was one of the most widely spoken in the area. The medical provider ordered a procedure for her son and administered medication. While it was ultimately beneficial, she felt lost. “They only pointed to the ‘x’ and said ‘sign.’” She sighed. “And I didn’t understand what to do for home care.” Crystal’s experience may have been on the extreme end, but nevertheless, when have you—or someone you know—lacked the information you needed to make an important health decision? Perhaps that information was available, but it was in a language you, or someone you know, did not understand. According to the U.S. Department of Health and Human Services (HHS) Healthy People 2030 initiative, 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.” Health literacy is also a social determinant of health. Although less studied and less understood  compared to other social determinants of health, health literacy has been consistently associated  with poor health outcomes, including poorer health status. With some medical terminology being complex and difficult to understand, poor health literacy can translate  to increased risk for nonadherence to treatment plans, higher healthcare costs—costing up to  $238 billion annually in inefficiencies—hospitalization and mortality. People with low health literacy may pay less attention to their health status, subsequently enabling unhealthy behaviors, and weakening their quality of life. In the United States, approximately 80 million adults are estimated to have limited or low health literacy. Additional research indicates  that at least 88 percent of U.S. adults have health literacy inadequate to navigate the healthcare system and promote their well-being. This breaks down to 55 percent of adults with intermediate proficiency, 22 percent with basic proficiency, and 14 percent with below basic proficiency. Meanwhile, only 12 percent are proficiently health literate. Yet, it is predominantly people with low income and low educational levels, and racial and ethnic minorities, who are disproportionately affected. For example, 58% of African Americans had basic or below basic health literacy, compared with 28% of non-Hispanic Whites. And as with my client, Crystal, some instances include an additional complicating factor: limited English proficiency (LEP). The U.S. Census Bureau  considers anyone older than age 5 who reports speaking English “not at all,” “not well,” or “well” to be LEP. Only those who answer “very well” are considered English proficient. In 2019, approximately 25.5 million, or 8.2%,of the U.S. population were LEP individuals; immigrants accounted for 81% of the LEP population. One study  found that 74% of Spanish-speaking patients have less-than-adequate health literacy as compared to 7% of English-speaking patients. In a California study , a Spanish-speaking stroke patient received discharge instructions in English, but she could not read them. Her Spanish-speaking caregiver was also unable to read them, so she drew on her personal experience with rehabilitation from a knee injury to guide her client’s stroke care. In retrospect, I wish I had shared some of this analysis with Crystal. I wanted to reassure her that while her experience was inexcusably poor public health practice, regrettably, she was not alone. But would that have mattered to her? Part of the problem is that low health literacy is under-recognized. Another is longstanding structural and systemic factors, chiefly medical mistrust among communities of color. However, there is increasing awareness and movement to increase health literacy and humility in healthcare. On a national level, the HHS National Action Plan to Improve Health Literacy, established in 2010, is built on two principles:
“All people have the right to health information that helps them make informed decisions.”
“Health services should be delivered in ways that are easy to understand and that improve health, longevity, and quality of life.”
Likewise, health literacy is categorized as a “central focus” of HHS’s Healthy People 2030 initiative. Meanwhile, several states—including California and New York , where there are larger concentrations of higher priority populations—have established organizations aimed at helping the healthcare system better integrate health literacy into practice. Yet delving more deeply, at the heart of health literacy is patient dignity. It is the patient’s basic right to be included in and understand their health. In the spirit of public health’s building blocks, then, starting where the people—" respecting the rights of individuals and communities to affirm their own values and ways of living.”  –is imperative. Advancing health literacy is a sure path to continued improvement of healthcare delivery and patient outcomes. And, I would bet that Crystal would appreciate it, too.
About the Author
Suzanne Manneh is a California-based public health professional. She holds a Master of Public Health degree, with an emphasis on community health education, and has worked extensively with communities experiencing homelessness and food insecurity, as well as with youth detained in the juvenile justice system, immigrants, and refugees. She co-authored a book chapter for Oxford University Press, addressing the role of LEP as a health risk, which can be accessed here or downloaded below.