Health illiteracy’ may cause disparities in care

Many people do not understand health information

Nearly half of all American adults — 90 million people — have difficulty understanding and using health information, and there is a higher rate of hospitalization and use of emergency services among patients with such limited health literacy, states a report released April 8 by the Institute of Medicine (IOM).

The report, titled Health Literacy: A Prescription to End Confusion, represents almost two years of work by an 11-member panel of experts in public health, primary medical care, health communication, sociology, anthropology, adult literacy education, and elementary and secondary education.

The panel was formed in October 2002 and was charged with determining the scope of the problem of health literacy in the United States. Panel members conducted extensive reviews of the published studies on literacy issues related to health care, interviewed experts researching the impact of literacy on health care access and outcomes, and convened public workshops to get input from a variety of sources about how easily Americans are able to understand the health information provided to them and participate as decision makers in guiding the care they receive.

"Health literacy is fundamental to quality care," says David A. Kindig, MD, PhD, professor emeritus of population health sciences at the University of Wisconsin-Madison and chair of the committee that developed the report. "The public’s ability to understand and make informed decisions about their health is a frequently ignored problem that can have a profound impact on individuals’ health and the health care system. Most professionals and policy-makers have little understanding of the extent and effects of this problem."

The IOM report defines health literacy as "the degree to which individuals have the capacity to obtain, process, and understand basic information and services needed to make appropriate decisions regarding their health."

More than a measurement of reading skills, health literacy also includes writing, listening, speaking, arithmetic, and conceptual knowledge, the report indicates.

At some point in their lives, most people will encounter health information they cannot understand. Even well-educated people with strong reading and writing skills may have trouble comprehending a medical form or doctor’s instructions regarding a drug or procedure, the report says.

Health information is particularly difficult to understand for people with limited overall literacy skills, Kindig notes. Attempts to improve health education in grades K-12 have met with substantial barriers over the years. As a result, many people lack the ideas and concepts they need to be health-literate.

But that’s not the only problem, he adds.

"Another reason is that health professionals often lack education and training about how to communicate with patients and how to help improve the health literacy of their patients," he says. "During the evidence-gathering phase of this project, our committee heard from individuals who have been ill-served by the health care system as a result of limited health literacy — which means limited reading or writing ability — but also a limited capacity to navigate a complex health care system and to advocate for themselves within it."

For instance, the committee heard testimony from a woman who signed a consent form to undergo surgery without understanding that she was going to have a hysterectomy.

"It isn’t [the woman’s] fault that she did not know she had a hysterectomy," Kindig says. "Problems with limited health literacy such as [hers] arise from a confluence of factors and failures in the health care system, the educational system, and culture and society. For instance, an individual may have a different idea of what being healthy means than his or her doctor does, may have trouble understanding the medical jargon that we in the health professional sometimes use without thinking, or may speak a different language. These are all common problems that are related to health literacy."

Communication problems may be particularly harmful for immigrants and members of racial and ethnic minorities, many of whom have limited access to care and are further disadvantaged by cultural and systemic biases.

A 2002 IOM report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, concluded that minorities experienced disparities in quality of care and access to care that were not attributable to socioeconomic status or the severity of their medical condition.

That report demonstrated that health care providers often have biases and preconceptions about certain groups of patients without even knowing it, says Alan Nelson, MD, MACP, the former chair of the IOM Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care, which issued the 2002 report.

Compound that with the problems of low literacy and a complex health system, and you have a recipe for disaster.

"We also need to have a better understanding of the communication problems that may lead the minority patient to have difficulty communicating with the providers and making wise choices about their treatment," Nelson said in an April 5 teleconference on racial and ethnic disparities in health sponsored by the Kaiser Family Foundation. "And, on the other hand, we found that bias and stereotypical behavior on the part of the physicians and other clinicians may very well be a factor."

The medical community needs to do a better job of teaching cultural competence and understanding why biases exist, Nelson said.

The American Medical Association (AMA) and the AMA Foundation have sponsored a multiyear effort to study how physicians and others are experiencing low health literacy and to develop tools to help turn the tide, he said.

They have developed a health literacy kit, Health Literacy: Help Your Patients Understand, which is available at The kit contains a 48-page manual for health care professionals, a videotape, and patient information.

Copies of Health Literacy: A Prescription to End Confusion are available from the National Academies Press. Visit or call (202) 334-3313 or (800) 624-6242. The cost of the report is $47.95 (prepaid) plus shipping charges of $4.50 for the first copy and 95 cents for each additional copy.