Marin P. Allen, PhD
Health literacy, as defined in the Healthy People 2010 initiative launched by the U.S. Department of Health and Human Services in 2000 to track the progress of public health in this decade in the United States, is "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions." The arenas or disciplines of health literacy include all phases of communication theory and practice, literacy theory and practice (reading, writing, visualization), health education, cultural competency, public health, and organizational and systems analysis. Health literacy extends to the print, audio, and video materials, environments, and challenges specifically associated with disease prevention and health promotion:
The skills of reading, comprehending, and analyzing information, as well as the decoding of instructions, symbols, charts, and diagrams, and the ability to understand risk and benefits will, ultimately, allow the individual to make informed decisions and take action.
Differences or disorders of human communication are faced by 1 out of 6 Americans. These increase the challenges of obtaining information. These disorders may go unrecognized as contributing to the inability to get and use health information. These disorders may also be under-recognized or unrecognized by health service providers. There are specific communication and health message challenges for individuals with auditory processing disorder, hearing loss and deafness, specific language impairment, and/or dementia, and there may be challenges within the systems for people who stutter.
Health literacy, however, is not solely about the individual. For health professionals, it becomes a reciprocal responsibility. Too often there is a tendency to blame—or "fix" the victim—and not see the broader roles and responsibilities for the medical and allied health professionals, the agencies, organizations, and institutions that individuals encounter in their desire for health and quality of life.
The Institute of Medicine has described this reciprocal relationship in health literacy as "where the expectations, preferences and skills of individuals seeking health information meet the expectations, preferences and skill of individuals providing information. Health literacy arises from a convergence of education, health services, and social and cultural factors, and brings together research and practice from diverse fields."
More than 90 million Americans struggle to understand basic health information, according to a study released by the U.S. Department of Education. According to the 1993 National Literacy Act Survey, 10 to 22 percent of Americans are at the lowest level of literacy (unable to read a medicine bottle or poison warning). Another 18 to 26 percent are considered functionally illiterate (have trouble filling out a job application form). On average, the reading level in the United States for Medicaid recipients is at the fifth grade level. The White House Office of Management and Budget, in a 2002 report, estimated the number of patient encounters across language barriers each year at 66 million. According to current federal data, there are [at least] 329 languages spoken or signed in the United States. In some cities, less than 60 percent of the population has English as a first language. We are all familiar with the census statistics showing the growth of the Hispanic/Latino/Latina population by 2030, but less attention has been given to the Asian American population, which is predicted to grow by 132 percent in the same time frame. This issue is also economic. For example, in a study at the University of Arizona at Tucson, researchers found that health care costs for patients enrolled in Medicare who were identified as having low literacy skills were more than four times as high as costs for patients with high literacy ability—roughly $13,000 per year vs. $3,000 per year. These data not only indicate the seriousness of the issue for today, but predict even greater future obstacles—unless individuals and institutions begin to create active solutions.
The first step is to seek information. There recently has been an explosion of web-based information available on health literacy. Several good places to start include the following:
Then, the next step is to "talk among ourselves" as we look to the special skills that individuals who are trained in communication—and in alternative communication strategies—may be able to contribute to solving the growing health literacy crisis.
Marin P. Allen, PhD, is deputy associate director for communications and is public liaison and director of public information at the National Institutes of Health.