Health illiteracy’ may cause disparities in care

Many adults do not understand health information

Nearly half of all American adults — 90 million — 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 new report from the Institute of Medicine (IOM).

Released on April 8, 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 group was formed in October 2002 and charged with determining the scope of the problem of health literacy in the United States. They 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 the receive.

"Health literacy is fundamental to quality care," says David A. Kindig, MD, PhD, professor emeritus of population health sciences, 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, most individuals 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, it states.

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 and, 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."

Literacy and bias may coexist

Communication problems may be particularly harmful for members of racial and ethnic minorities and immigrants, 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 able to be attributed to socioeconomic status and severity of their medical condition.

That report demonstrated that health care providers often have biases and preconceptions about certain groups of patients that they may not even be aware of, says Alan Nelson, MD, MACP, former chair of the IOM Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care, which issued the 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 understanding why biases exist and do a better job of teaching cultural competence, Nelson said.

Recommendations for change

The American Medical Association (AMA) recognized in 1998 that limited health literacy was a problem and has since taken several steps to begin to address it, AMA president-elect John C. Nelson, MD, said in a statement accompanying the release of the IOM report.

And low health literacy presents problems for the entire population, not just the individual patients who don’t get the care they need, he said. "Excess hospital stays, multiple doctors’ visits, expenses incurred by misunderstanding and miscommunication — all of these create costs borne by everyone through higher premiums, higher taxes, and the higher inefficiencies low health literacy brings to the process."

The AMA and the AMA Foundation have sponsored a multiyear effort to study how physicians and others are experiencing low health literacy and 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 on the web. The kit contains a 48-page manual for health care professionals, a video and patient information.

The IOM report details ways in which low health literacy affects the delivery of health care and makes several recommendations about how the situation might be improved.

A concerted effort by the public health and health care systems, the education system, the media, and health care consumers is needed to improve the nation’s health literacy, the report says. If patients cannot comprehend needed health information, attempts to improve the quality of care and reduce health care costs and disparities may fail.

The report recommends also that health care systems should develop and support programs to reduce the negative effects of limited health literacy and that health knowledge and skills be incorporated into the existing curricula of kindergarten through 12th grade classes, as well as into adult education and community programs.

Furthermore, programs to promote health literacy, health education, and health promotion programs should be developed with involvement from the people who will use them. And all such efforts must be sensitive to cultural and language preferences, the report states.

Copies of Health Literacy: A Prescription to End Confusion are available from the National Academies Press. Visit on the Internet or phone (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.


  • David A. Kindig, MD, PhD, Co-Director, Wisconsin Public Health and Health Policy Institute, Emeritus Professor of Population Health Sciences, School of Medicine, University of Wisconsin-Madison, Medical School, 760 Warf Office Building, 610 Walnut St., Madison, WI 53726.
  • Alan Nelson, MD, MACP, American College of Physicians, 2011 Pennsylvania Ave., N.W., Suite 800, Washington, DC 20006-1837.
  • John Nelson, MD, American Medical Association, 515 N. State St., Chicago, IL 60610.