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Date: April 8, 2004
Contacts: Maureen O'Leary, Director, Broadcast and Special Projects
Heather McDonald, Media Relations Assistant
Office of News and Public Information
202-334-2138; e-mail <>


90 Million Americans are Burdened with Inadequate Health Literacy
IOM Report Calls for National Effort to Improve Health Literacy

WASHINGTON -- 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 limited health literacy, says a new report from the Institute of Medicine of the National Academies. Limited health literacy may lead to billions of dollars in avoidable health care costs.

More than a measurement of reading skills, health literacy also includes writing, listening, speaking, arithmetic, and conceptual knowledge. Health literacy is defined 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.

"Health literacy is fundamental to quality care," said committee chair David A. Kindig, professor emeritus of population health sciences, University of Wisconsin, Madison. "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."

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.

Limited health literacy affects more than just the uneducated and poor, the report says. 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.

Health literacy skills are needed for discussing care with health professionals; reading and understanding patient information sheets, consent forms, and advertising; and using medical tools such as a thermometer. Over 300 studies indicate that health-related materials cannot be understood by most of the people for whom they are intended.

Individuals are increasingly responsible for managing their own health care, the committee noted. They are assuming new roles in seeking information, measuring and monitoring their own health, and making decisions about insurance and options for care. Patients' health often depends on their ability and willingness to carry out a set of activities needed to manage and treat their disease. This self-management is essential to successful care of chronic diseases such as diabetes, HIV, and hypertension. Patients with chronic illness who have limited health literacy are less knowledgeable about disease management and less likely to use preventive measures.

Limited health literacy is not a problem that starts and ends with patients, the committee added. Health systems are becoming increasingly complex, involving new technologies, scientific jargon, and complicated medical procedures and forms. All of these aspects of the health system can be confusing to patients. Moreover, care providers frequently need to communicate with patients who have different language and cultural backgrounds. Culture and ethnicity may influence patients' perceptions of health, illness, and the risks and benefits of treatments. Differing cultural and educational backgrounds between a patient and provider also contribute to problems in the patient's comprehension.

Health care systems should develop and support programs to reduce the negative effects of limited health literacy. Responsibility for improving health literacy must be borne not only by the health system, but also by educators, employers, community organizations, and other groups with social and cultural influence.

The report recommends 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 extent and consequences of limited health literacy in the United States are difficult to define because of limited data. The U.S. Department of Health and Human Services and other government and private funding agencies should support multidisciplinary research in this area, the committee said. Furthermore, public and private funders should develop and test new methods of measurement that can establish baseline levels of health literacy and monitor change over time.

The study was sponsored by the American Academy of Family Physicians Foundation, California HealthCare Foundation, Commonwealth Fund, W.K. Kellogg Foundation, MetLife Foundation, National Cancer Institute, Pfizer Corp., and the Robert Wood Johnson Foundation. The Institute of Medicine is a private, nonprofit institution that provides health policy advice under a congressional charter granted to the National Academy of Science. A committee roster follows.

Copies of Health Literacy: A Prescription to End Confusion are available from the National Academies Press; tel. (202) 334-3313 or 1-800-624-6242 or on the Internet at The cost of the report is $47.95 (prepaid) plus shipping charges of $4.50 for the first copy and $.95 for each additional copy. Reporters may obtain a copy of the report, and a CD with video of limited literacy patients being interviewed, from the Office of News and Public Information (contacts listed above).

Board on Neuroscience and Behavioral Health

Committee on Health Literacy

David A. Kindig, M.D., Ph.D. (chair)
Wisconsin Public Health and Health Policy Institute;
Emeritus Professor of Population Health Sciences; and
Emeritus Vice Chancellor for Health Sciences
School of Medicine
University of Wisconsin

Dyanne D. Affonso, R.N., Ph.D., F.A.A.N.
Faculty of Nursing
University of Toronto

Eric H. Chudler, Ph.D.
Research Associate Professor
Department of Anesthesiology
School of Medicine
University of Washington

Marilyn H. Gaston, M.D.
Past Assistant Surgeon General, and
Former Director
Bureau of Primary Health Care
Health Resources and Services Administration
Potomac, Md.

Cathy D. Meade, Ph.D., R.N., F.A.A.N.
Education Program
H. Lee Moffitt Cancer Center & Research Institute, and
Department of Interdisciplinary Oncology
Division of Cancer Prevention and Control
University of South Florida College of Medicine

Ruth Parker, M.D.
Associate Professor of Medicine, and
Associate Director of Faculty Development
Division of General Medicine
School of Medicine
Emory University

Victoria Purcell-Gates, Ph.D.
Professor of Literacy and Teacher Education
Department of Teacher Education
Michigan State University
East Lansing

Irving Rootman, Ph.D.
Professor, and
Michael Smith Foundation for Health Research Distinguished Scholar
Faculty of Human and Social Development
University of Victoria
Victoria, British Columbia

Rima Rudd, Sc.D.
Director of Educational Programs, and
Senior Lecturer on Society, Human Development, and Health
Department of Health and Social Behavior
Harvard School of Public Health

Susan C. Scrimshaw, Ph.D.
School of Public Health, and
Professor of Community Health Sciences and Anthropology
University of Illinois

William Smith, Ed.D.
Executive Vice President, and
Senior Social Scientist of Development Program Services
Academy for Educational Development
Washington, D.C.


Andrew Pope, Ph.D.
Board Director