Health Literacy

A Prescription to End Confusion

Committee on Health Literacy

Board on Neuroscience and Behavioral Health

Lynn Nielsen-Bohlman, Allison M. Panzer, David A. Kindig, Editors

INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS
Washington, D.C.
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Health Literacy: A Prescription to End Confusion Health Literacy A Prescription to End Confusion Committee on Health Literacy Board on Neuroscience and Behavioral Health Lynn Nielsen-Bohlman, Allison M. Panzer, David A. Kindig, Editors INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu

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Health Literacy: A Prescription to End Confusion THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance. Support for this project was provided by the American Academy of Family Physicians Foundation, California HealthCare Foundation, Commonwealth Fund, W.K. Kellogg Foundation, MetLife Foundation, National Cancer Institute, Pfizer Corporation, and the Robert Wood Johnson Foundation. The views presented in this report are those of the Institute of Medicine Committee on Health Literacy and are not necessarily those of the funding agencies. Library of Congress Cataloging-in-Publication Data Health literacy : a prescription to end confusion / editors, Lynn Nielsen-Bohlman … [et al.] ; Committee on Health Literacy, Board on Neuroscience and Behavioral Health, [Institute of Medicine]. p. ; cm. Includes bibliographical references and index. ISBN 0-309-09117-9 (hardcover)—ISBN 0-309-52926-3 (pdf) 1. Health education—United States. 2. Literacy—United States. [DNLM: 1. Health Education—methods—United States. 2. Health Education—standards—United States. 3. Communication Barriers—United States. 4. Educational Status—United States. WA 590 H4362 2004] I. Nielsen-Bohlman, Lynn. II. Institute of Medicine (U.S.). Committee on Health Literacy. RA440.H43 2004 613′.07′1073—dc22 2004004829 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, NW, Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2004 by the National Academy of Sciences. All rights reserved. Printed in the United States of America. COVER: Adapted from a design by Anne Quito, Academy for Educational Development. The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.

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Health Literacy: A Prescription to End Confusion “Knowing is not enough; we must apply. Willing is not enough; we must do.” —Goethe INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES Adviser to the Nation to Improve Health

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Health Literacy: A Prescription to End Confusion THE NATIONAL ACADEMIES Advisers to the Nation on Science, Engineering, and Medicine The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Bruce M. Alberts is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Wm. A. Wulf is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Bruce M. Alberts and Dr. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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Health Literacy: A Prescription to End Confusion COMMITTEE ON HEALTH LITERACY DAVID KINDIG, (Chair), Wisconsin Public Health & Health Policy Institute, University of Wisconsin at Madison DYANNE D. AFFONSO, Faculty of Nursing, University of Toronto ERIC H. CHUDLER, University of Washington School of Medicine MARILYN H. GASTON, Assistant Surgeon General of the United States, Retired CATHY D. MEADE, University of South Florida College of Medicine H. Lee Moffitt Cancer Center & Research Institute RUTH PARKER, Emory University School of Medicine VICTORIA PURCELL-GATES, Michigan State University IRVING ROOTMAN, University of Victoria RIMA RUDD, Harvard University School of Public Health SUSAN C. SCRIMSHAW, School of Public Health, University of Illinois at Chicago BILL SMITH, Academy for Educational Development Board on Neuroscience and Behavioral Health Liaisons NANCY E. ADLER, Departments of Psychiatry and Pediatrics, University of California, San Francisco RICHARD G. FRANK, Department of Health Care Policy, Harvard Medical School, Boston, MA Board on Health Promotion and Disease Prevention Liaison IRVING ROOTMAN, University of Victoria Study Staff LYNN NIELSEN-BOHLMAN, Study Director ALLISON PANZER, Research Assistant BENJAMIN N. HAMLIN, Research Assistant ALLISON BERGER, Program Assistant IOM Board on Neuroscience and Behavioral Health Staff ANDREW M. POPE, Director TROY PRINCE, Administrative Assistant ROSA POMMIER, Finance Officer JUDY ESTEP, Senior Program Assistant

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Health Literacy: A Prescription to End Confusion Independent Report Reviewers This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s (NRC’s) Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report: Moon Chen Jr., University of California, Davis School of Medicine Linda C. Degutis, Yale University Robert Graham, Agency for Healthcare Research and Quality James Hyde, Tufts University School of Medicine Irwin S. Kirsch, Educational Testing Service, Center for Global Assessment Randall W. Maxey, National Medical Association Alan R. Nelson, American College of Physicians of Internal Medicine Joanne Nurss, Georgia State University, Emeritus Yolanda Partida, University of Southern California Debra Roter, Johns Hopkins University Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions

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Health Literacy: A Prescription to End Confusion or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by Daniel L. Azarnoff, D.L. Azarnoff Associates, and Kristine Gebbie, Columbia University School of Nursing. Appointed by the NRC and the Institute of Medicine, they were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.

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Health Literacy: A Prescription to End Confusion Acknowledgments The committee was aided in its deliberations by the testimony and advice of many knowledgeable and experienced individuals, and the efforts of a dedicated committee and staff. Consultants to the committee contributed ideas and report materials. The committee thanks consultants Arlene Bierman, Agency for Healthcare Research and Quality; John Comings, Harvard University; Terry Davis, Louisiana State University Health Sciences Center; Julie Gazmararian, Emory University; David Howard, Emory University; Frank McClellan, Temple University; Scott Ratzan, Johnson and Johnson; Dean Schillinger, University of California at San Francisco and San Francisco General Hospital Medical Center; Steve Somers, Center for Health Care Strategies; and Barry Weiss, University of Arizona. The committee acknowledges with appreciation the testimony and other assistance of many individuals committed to improving health literacy. These individuals are Paul S. Appelbaum, University of Massachusetts Medical School; Cynthia Baur, U.S. Department of Health and Human Services; Nancy Berkman, RTI International; Alvin Billie, The Gathering Place; Cindy Brach, Agency for Healthcare Research and Quality; L. Natalie Carroll, National Medical Association; Carolyn Clancy, Agency for Healthcare Research and Quality; Eduardo Crespi, Centro Latino; Barbara DeBuono, Pfizer Pharmaceuticals Group; Darren A. DeWalt, University of North Carolina, Chapel Hill; Janice A. Drass, Centers for Medicare and Medicaid Services, DHHS; Joyce Dubow, AARP Public Policy Institute; Lawrence J. Fine, Office of Behavioral and Social Science Research, National Institutes

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Health Literacy: A Prescription to End Confusion of Health; Heng L. Foong, Pacific Asian Language Services for Health; Robert Friedland, Georgetown University and Center on an Aging Society; Robert Graham, Agency for Healthcare Research and Quality; Rita Hargrave, University of California, Davis, and Veterans Medical Center of Northern California System of Clinics; Julie Hudman, Henry J. Kaiser Family Foundation Commission on Medicaid and the Uninsured; Marian James, Agency for Healthcare Research and Quality; Linda Johnston Lloyd, Health Resources and Services Administration; Lloyd J. Kolbe, Centers for Disease Control; Karen Lechter, Center for Drug Evaluation and Research, U.S. Food and Drug Administration; Estela Marin, Louisiana State University Health Sciences Center; Ed Martinez, National Association of Public Hospitals and Health Systems; Frank M. McClellan, Temple University James E. Beasley School of Law; Linda Morse, New Jersey Office of Academic and Professional Standards; Francisco Para, Latino Health Access; L. Gregory Pawlson, National Committee for Quality Assurance; Michael Pignone, University of North Carolina at Chapel Hill; Francis Prado, Latino Health Access; Sara Rosenbaum, George Washington University; Marisa Scala, Center for Medicare Education, American Association of Homes and Services for the Aging; Lauren Schwartz, New York City Poison Control Center; Joanne Schwartzberg, American Medical Association; Tetine Sentell, University of California at Berkeley; Judy A. Shea, University of Pennsylvania School of Medicine; Susan M. Shinagawa, National Asian-American and Pacific Islander Cancer Survivors and Advocacy Network; Colleen Sonosky, George Washington University; Anthony Tirone, Joint Commission on Accreditation of Healthcare Organizations; Tina Tucker, American Foundation for the Blind; and Marcia Zorn, National Library of Medicine. Special thanks to K. Vish Viswanath and Patrick Weld of the Division of Cancer Control and Population Sciences of the National Cancer Institute, Scott Ratzan of Johnson and Johnson, and to Barbara DeBuono and Joel Rosenquist of the Pfizer Pharmaceutical Group, for extra effort and repeated attention to the ongoing information needs and support of the study. The committee appreciates the efforts of Terry C. Pellmar for her dedication, effort, and commitment to moving this report from concept to reality in her role as Director of the Board on Neuroscience and Behavioral Health. This report was made possible by the generous support of the American Academy of Family Physicians Foundation, California HealthCare Foundation, Commonwealth Fund, W.K. Kellogg Foundation, MetLife Foundation, National Cancer Institute, Pfizer Corporation, and the Robert Wood Johnson Foundation.

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Health Literacy: A Prescription to End Confusion Foreword Clear communication is critical to successful health care. Patients convey their symptoms and medical history to caregivers; health professionals issue orders, results, and recommendations to one another; and doctors, nurses, pharmacists, and others provide information and instructions to patients. Health professionals are trained to observe their patients keenly and to elicit a revealing history. Considerable effort and money are expended to automate reporting of test results and physician order entry so as to speed availability of clinical information and to reduce errors. However, comparatively little attention has been devoted to enabling patients to comprehend their condition and treatment, to make the best decisions for their care, and to take the right medications at the right time in the intended dose. As this report makes clear, health literacy—enabling patients to understand and to act in their own interest—remains a neglected, final pathway to high-quality health care. Tens of millions of U.S. adults are unable to read complex texts, including many health-related materials. Arcane language and jargon that become second nature to doctors and nurses are inscrutable to many patients. Adults who have a problem understanding written materials are often ashamed and devise methods to mask their difficulty. They may be reluctant to ask questions for fear of being perceived as ignorant. If health professionals were able to take the time to ask their patients to explain exactly what they understand about their diagnoses, instructions, and bottle labels, the caregivers would find many gaps in knowledge, difficulties in understanding, and misinterpretations. These problems are exacerbated by language and

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Health Literacy: A Prescription to End Confusion cultural variation in our multicultural society, by technological complexity in health care, and by intricate administrative documents and requirements. The Committee on Health Literacy here documents the problem and describes its origins, consequences, and solutions. The committee echoes the call of the Surgeon General and other health leaders on the import of health literacy, and it elaborates the cross-cutting priority for health literacy identified in the recent Institute of Medicine report on Priority Areas for National Action in Quality Improvement. Most importantly, the current report lays out a comprehensive strategy to improve health literacy in America. While this will be neither easy nor completed quickly, individuals, educators, community groups, health professionals, medical institutions, industry, and government agencies can all contribute, and this report tells how. Health Literacy: A Prescription to End Confusion is a landmark report on an underappreciated challenge. I am grateful to the committee and its staff for their work and hope that their report receives the audience, attention, and action it deserves. Harvey V. Fineberg, M.D., Ph.D. President Institute of Medicine

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Health Literacy: A Prescription to End Confusion Preface My understanding of the issues in health literacy was limited prior to taking on the role of Chair of this committee. From my expertise in defining and measuring population health and its determinants, I appreciated the importance of the social determinants of health. I had speculated about the role of health literacy as one pathway by which education might exert an independent effect on health outcomes. But until this rich and intense interaction with my colleagues from diverse fields such as literacy, biology, health communication, anthropology, epidemiology, medicine, nursing, and health policy, combined with poignant testimony from those affected and other experts, I had no idea of the importance and complexity of this topic. I believe that what the United States puts into practice in medicine and health is much less than what is known. Only now do I know how profoundly the gap between knowledge and practice is widened by limited health literacy. Only now do I know why some refer to this as a “silent epidemic”—the lack of understanding by most professionals and policy makers of its extent and effect, and the individual shame associated with it that keeps it even more silent and hidden. I hope that this report will produce several outcomes: It will become widely appreciated that 90 million adults with limited health literacy cannot fully benefit from much that the health and health-care system have to offer. It will become widely understood that efforts to improve quality, to

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Health Literacy: A Prescription to End Confusion reduce costs, and to reduce disparities cannot succeed without simultaneous improvements in health literacy. It will become widely understood that health literacy is more than reading, but includes writing, numeracy, listening, speaking, and conceptual knowledge. It will be accepted that improving individual health literacy requires great effort from the public health and health-care systems, the education system, and society overall. Chairing this committee was such a privilege and a challenge. We each struggled to overcome the limitations of our own knowledge and assumptions. We could not have completed this work without the many hours devoted by committee members, those providing testimony, and Institute of Medicine staff, and the financial support of our sponsors. As one firmly committed to the translation of research into policy and practice, I hope this report, containing the results of our efforts, will identify substantial new resources, not only for the research needed to establish causal relationships and evaluate effective interventions, but also to expand the many promising interventions identified here. The significance of the problem is too great to wait for complete understanding before we act. David A. Kindig, M.D., Ph.D. Chair

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Health Literacy: A Prescription to End Confusion Contents     EXECUTIVE SUMMARY   1 1   INTRODUCTION   19      Social and Economic Factors and Health,   20      Living in a Society with High Literacy Demands,   21      Health Literacy as a Public Concern,   25      Charge to the Committee,   26      Scope of the Report,   27      References,   29 2   WHAT IS HEALTH LITERACY?   31      Definition of Health Literacy,   31      Definition of Literacy,   37      Literacy in Health Contexts,   41      Measures Used in Health Literacy Research,   43      Needs and Opportunities,   51      References,   55 3   THE EXTENT AND ASSOCIATIONS OF LIMITED HEALTH LITERACY   59      Literacy in America,   60      The Epidemiology of Limited Health Literacy,   65      The Associations of Limited Health Literacy,   81      References,   103

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Health Literacy: A Prescription to End Confusion 4   CULTURE AND SOCIETY   108      Traditional Culture,   110      Mass Culture,   119      Opportunities to Improve Health Literacy,   126      References,   137 5   EDUCATIONAL SYSTEMS   142      The K-12 and University Education Systems,   143      The Adult Education System,   154      Education for Health Professionals,   157      References,   162 6   HEALTH SYSTEMS   167      The Context of Health Systems,   168      Opportunities in Health Systems,   201      References,   229 7   VISION FOR A HEALTH-LITERATE AMERICA   240      References,   242     APPENDIXES     A   Data Sources and Methods   243 B   Commissioned Papers The Relationship Between Health Literacy and Medical Costs David H. Howard   256      Improving Chronic Disease Care for Populations with Limited Health Literacy Dean Schillinger   267      Outside the Clinician-Patient Relationship: A Call to Action for Health Literacy Barry D. Weiss   285 C   Sample Material from Selected Assessments of Literacy and Health Literacy   301      Rapid Estimate of Adult Literacy in Medicine,   302      Excerpts from the Test of Functional Health Literacy in Adults,   304      Excerpts from the National Adult Literacy Survey,   308 D   Committee and Staff Biographies   323     INDEX   331

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Health Literacy: A Prescription to End Confusion Tables, Figures, and Boxes TABLES 2-1   Examples of Skills Needed for Health,   42 3-1   Percentage of Adult Population Groups with Literacy Skills at NALS Levels 1, 2, or 3–4,   64 3-2   The Epidemiology of Health Literacy Skills Among Various Populations,   70 3-3   Health-Related Associations of Health Literacy Skills,   84 4-1   Examples of Published Studies of Community-Based Interventions,   128 6-1   Examples of Informed Consent Text Provided by Institutional Review Boards at U.S. Medical Schools,   188 6-2   Frequency of Doing Health Literacy-Related Activities,   203 6-3   Samples of Published Studies of Interventions in Health-Care Settings,   206 A-1   Summary of Respondents and Non-Respondents to Survey,   252 B-1   Representativeness of the Study Sample,   257 B-2   Characteristics of the Study Sample,   259 B-3   Predicted Health-Care Spending,   262

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Health Literacy: A Prescription to End Confusion B-4   In-Sample Prediction of Health Literacy and Total Costs,   263 B-5   How Organizations and Systems Might Act to Improve America’s Health Literacy,   286 B-6   National Totals for Enrollees and Cost of Hospitalization and Physician Service Health Plans for the Private Sector, United States, 2000,   291 B-7   Percentage of Adult Population Groups with Literacy Skills at NALS Levels 1 or 2,   294 C-1   REALM,   302 C-2   Scores and grade equivalents for the REALM,   303 FIGURES ES-1   Potential points for intervention in the health literacy framework,   5 2-1   Health literacy framework,   33 2-2   Potential points for intervention in the health literacy framework,   34 2-3   Components of literacy,   38 3-1   Mock-up presciption medication instructions in Bahasa Malaysia, the written language of Malaysia,   60 6-1   The concentric ecology of organizations in the health-care sector,   169 6-2   Difference between actual readability and target readability of informed consent documents,   189 6-3   National Institutes of Health grant funding over the 1997–2002 period,   196 6-4   Examples of pictograms for patient education,   215 A-1   Response to web-based survey,   251 B-1   Model for improvement of chronic illness care,   269 B-2   Improving chronic disease care: a framework based on health literacy and related research,   271 B-3   Number of Medicare enrollees,   287 B-4   Federal spending for Medicare,   288 B-5   Predicted Medicare expenditures,   289

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Health Literacy: A Prescription to End Confusion C-1   Prompt 1 for TOFHLA,   304 C-2   Prompt 10 for TOFHLA,   305 C-3   Article “Swimmer completes Manhattan marathon” used in NALS,   309 C-4   Discrimination article used in NALS,   311 C-5   Korean jet article used in NALS,   313 C-6   Job application used in NALS,   314 C-7   Wage and tax statement used in NALS,   315 C-8   Sales graph used in NALS,   316 C-9   Energy chart used in NALS,   317 C-10   Bus schedule used in NALS,   318 C-11   Bank deposit slip used in NALS,   320 C-12   Peanut butter label used in NALS,   321 C-13   Home equity loan advertisement used in NALS,   322 BOXES 4-1   Sources of Health Information Reported in a Gallup Poll,   121 4-2   Selected Findings from Sex Matters,   122 4-3   Excerpt from the Introduction to “Language Access: Helping Non-English Speakers Navigate Health and Human Services”,   135 5-1   The National Health Education Standards,   144 6-1   Rules for Redesigning Health-Care Processes,   178 6-2   State Medicaid Managed Care Contracts,   200 6-3   Example of a Consent Form for Participation in Smoking Cessation Study,   216 6-4   Examples of Ongoing Approaches Using Technology-Based Communication Techniques,   218 6-5   Chronic Disease Management Program,   222 6-6   Description of Project Toolbox,   223 6-7   Comments from Respondents to Survey,   227 A-1   First Workshop Hosted by the Committee on Health Literacy,   246 A-2   Second Workshop Hosted by the Committee on Health Literacy,   248 A-3   Third Workshop Hosted by the Committee on Health Literacy,   249

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