Health literacy (or is it ill-literacy?)

The Institute of Medicine (the folks who brought you the report a few years ago about all the accidents and mistakes being made in health care settings) is about to publish a new report entitled: Health Literacy: A Prescription to End Confusion. Basically, they’ve found that in the US there is a high level of illiteracy about health matters, so high that health outcomes are affected. An amazing number of people can’t understand written material about health, can’t understand what their doctors are saying to them, and can’t comprehend instructions about how to cooperate with health care.

The report examines the issue at length and makes many recommendations to ameliorate the problem for government agencies and other principals in the health care scene. Presumably, that includes organizations such as the American Cancer Society. I’ve pulled a series of quotes from the executive summary of the report to give the flavor of its findings.

This report defines health literacy 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” (Ratzan and Parker, 2000). However, health literacy goes beyond the individual obtaining information. Health literacy emerges when expectations, preferences, and skills of individuals seeking health information meet the expectations, preferences, and skills of those providing information and services. Health literacy arises from a convergence of education, health services, and social and cultural factors.

Modern health systems make complex demands on the health consumer. As self-management of health care increases, individuals are asked to assume new roles in seeking information, understanding rights and responsibilities, and making health decisions for them- selves and others. Underlying these demands are assumptions about people’s knowledge and skills. National and international assessments of adults’ ability to use written information suggest that these assumptions may be faulty. Current evidence reveals a mismatch between people’s skills and the demands of health systems (Rudd et al., 2000a).

Health literacy is a shared function of social and individual factors. Individuals’ health literacy skills and capacities are mediated by their education, culture, and language. Equally important are the communication and assessment skills of the people individuals interact with regarding health, and the ability of the media, the marketplace, and government agencies to provide health information in a manner appropriate to the audience.

People of all literacy levels may be able to manage texts that they frequently encounter and use for everyday activities, but will often face problems with difficult and confusing types of text (Kirsch et al., 1993). Findings from the National Adult Literacy Survey (NALS) and International Adult Literacy Surveys (IALS) indicate that a large percentage of adults lack the literacy skills needed to meet the demands of twenty-first century society. More than 47 percent, or 90 million, of U.S. adults have difficulty locating, matching, and integrating information in written texts with accuracy and consistency. Of the 90 million with limited literacy skills, about 40 million can perform simple and routine tasks using uncomplicated materials. An additional 50 million adults can locate information in moderately complicated texts, make inferences using print materials, and integrate easily identifiable pieces of information. However, they find it difficult to perform these tasks when complicated by distracting information and complex texts (Kirsch, 2001; Kirsch et al., 1993). These findings have serious implications for the health sector. Over 300 studies, conducted over three decades and assessing various health-related materials, such as informed consent forms and medication package inserts, have found that a mismatch exists between the reading levels of the materials and the reading skills of the intended audience.

Studies suggest that while individuals with limited health literacy come from many walks of life, the problem of limited health literacy is often greater among older adults, people with limited education, and those with limited English proficiency (Beers et al., 2003; Gazmararian et al., 1999; Williams et al., 1995). For individuals whose native language is not English, issues of health literacy are compounded by issues of language and the specialized vocabulary used to convey health information.

Compared to those with adequate health literacy, patients with limited health literacy have decreased ability to share in decision-making about prostate cancer treatment, (Kim et al., 2001), lower adherence to anticoagulation therapy (Lasater, 2003; Win et al., 2003), higher likelihood of poor glycemic control (Schillinger et al., 2002), and lower self-reported health status

About 90 million adults, an estimate based on the 1992 National Adult Literacy Survey, have literacy skills that test below high school level (NALS Level 1 and 2). Of these, about 4044 million (NALS Level 1) have difficulty finding information in unfamiliar or complex texts such as newspaper articles, editorials, medicine labels, forms, or charts. Because the medical and public health literature indicates that health materials are complex and often far above high school level, the committee notes that approximately 90 million adults may lack the needed literacy skills to effectively use the U.S. health system. The majority of these adults are native-born English speakers. Literacy levels are lower among the elderly, those who have lower educational levels, those who are poor, minority populations, and groups with limited English proficiency such as recent immigrants. Finding 3-2 The committee concludes that the shame and stigma associated with limited literacy skills are major barriers to improving health literacy based on limited studies, public testimony, and committee members’ experience. Finding 3-3 Adults with limited health literacy, as measured by reading and numeracy skills, have less knowledge of disease management and of health-promoting behaviors, report poorer health status, and are less likely to use preventive services. Finding 3-4 Two recent studies demonstrate a higher rate of hospitalization and use of emergency services among patients with limited literacy. This higher utilization has been associated with higher health care costs.

Culture is the shared ideas, meanings, and values that are acquired by individuals as members of society. Culture is socially learned, continually evolves, and often influences us unconsciously. We learn through interactions with others, as well as through the tangible products of culture such as books and television (IOM, 2002a). Culture gives significance to health information and messages, and can shape perceptions and definitions of health and illness, preferences, language and cultural barriers, care process barriers, and stereotypes. These culturally-influenced perceptions, definitions, and barriers can affect how people interact with the health care system and help to determine the adequacy of health literacy skills in different settings. The fluid nature of culture means that health care encounters are rich with differences that are continuously evolving. Differing cultural and educational backgrounds between patients and providers, as well as between those who create health information and those who use it may contribute to problems in health literacy.

…childhood health education can provide a basis for health literacy in adulthood. Although most elementary, middle and high schools require students to take health education, the sequence of coursework is not coordinated. The percentage of schools that require health education increases from 33 percent in kindergarten to 44 percent in grade 5, but then falls to 10 percent in grade 9, and 2 percent in grade 12. The absence of a coordinated health education program across grade levels may impede student learning of needed health literacy skills. Furthermore, only 9.6 percent of health education classes have a teacher who majored in health education or in combined health and physical education (Kann et al., 2001).

From what I can see about the future of health care technology, the complexity that people will need to cope with is going to increase, not decrease. “Personalized medicine” means that said “person” will have to be much more deeply involved in lifestyle choices, decisions, monitoring, and following long-term plans for health. Makes you wonder if the benefits of advancing medical science are going to be undone by simple illiteracy.

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