MEASURES OF HEALTH LITERACY

WORKSHOP SUMMARY

Lyla M. Hernandez, Rapporteur

Roundtable on Health Literacy

Board on Population Health and Public Health Practice

INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.
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MEASURES OF HEALTH LITERACY WORKSHOP SUMMARY Lyla M. Hernandez, Rapporteur Roundtable on Health Literacy Board on Population Health and Public Health Practice

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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. 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. This study was supported by contracts between the National Academy of Sciences and the Academy for Educational Development (Unnumbered Award); Affinity Health Plan (Unnumbered Award); American Academy of Family Physi - cians (Unnumbered Award); Johnson & Johnson (Unnumbered Award); Kaiser Permanente (Unnumbered Award); Merck & Co., Inc. (Unnumbered Award); Missouri Foundation for Health (08-048-HL-8); and U.S. Department of Health and Human Services (N01-OD-4-2139, TO#148). Any opinions, findings, conclu - sions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that pro - vided support for this project. International Standard Book Number-13: 978-0-309-13980-9 International Standard Book Number-10: 0-309-13980-5 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., 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 2009 by the National Academy of Sciences. All rights reserved. Printed in the United States of America 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. Suggested citation: IOM (Institute of Medicine). 2009. Measures of Health Literacy: Workshop Summary. Washington, DC: The National Academies Press.

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“Knowing is not enough; we must apply. Willing is not enough; we must do.” — Goethe Advising the Nation. Improving Health.

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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 govern - ment on scientific and technical matters. Dr. Ralph J. Cicerone 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 mem - bers, sharing with the National Academy of Sciences the responsibility for advis - ing 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. Charles M. Vest 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 pro - viding 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. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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MEMbERS OF THE PLANNINg gROuP FOR THE WORkSHOP ON MEASuRES OF HEALTH LITERACy CINDy bRACH, Senior Health Policy Researcher, Center for Delivery, Organization, and Markets, Agency for Healthcare Research and Quality CAROLyN COCOTAS, Senior Vice President, Quality and Corporate Compliance, F.E.G.S. Health and Human Services System DEbbIE FRITZ, Director, Policy and Standards, Health Management Innovations Division, GlaxoSmithKline RuTH PARkER, Professor of Medicine, Emory University School of Medicine TERRI TyE, Director of Public Affairs, The Joint Commission IOM planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published workshop summary rests with the workshop rapporteur and the institution. 

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ROuNDTAbLE ON HEALTH LITERACy gEORgE ISHAM (Chair), Medical Director and Chief Health Officer, HealthPartners SHARON E. bARRETT, Health Literacy Staff Consultant, Association of Clinicians for the Underserved CINDy bRACH, Senior Health Policy Researcher, Center for Delivery, Organization, and Markets, Agency for Healthcare Research and Quality CAROLyN COCOTAS, Senior Vice President, Quality and Corporate Compliance, F.E.G.S. Health and Human Services System MICHAEL L. DAVIS, Senior Vice President, Human Resources, General Mills, Inc. bENARD P. DREyER, Professor of Pediatrics, New York University School of Medicine, and Chair, American Academy of Pediatrics Health Literacy Program Advisory Committee DEbbIE FRITZ, Director, Policy and Standards, Health Management Innovations Division, GlaxoSmithKline MELODy gOLLER, Health Education Manager, Scientific Activities Division, American Academy of Family Physicians Foundation MARTHA gRAgg, Vice President of Program, Missouri Foundation for Health LINDA HARRIS, Team Leader, Health Communication and eHealth Team, Office of Disease Prevention and Health Promotion, U.S. Department of Health and Human Services bETSy L. HuMPHREyS, Deputy Director, National Library of Medicine, National Institutes of Health TERRIS kINg, Deputy Director, Office of Clinical Standards and Quality, Centers for Medicare & Medicaid Services JEAN kRAuSE, Executive Vice President and CEO, American College of Physicians Foundation MARgARET LOVELAND, Global Medical Affairs, Merck & Co., Inc. DENNIS MILNE, Vice President of American Stroke Association and Patient Education, American Heart Association RuTH PARkER, Professor of Medicine, Emory University School of Medicine yOLANDA PARTIDA, Director, National Program Office, Hablamos Juntos, University of California, San Francisco, Fresno Center for Medical Education & Research IOM forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published workshop summary rests with the workshop rapporteur and the institution. i

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SCOTT C. RATZAN, Vice President, Global Health, Johnson & Johnson kyu bAk LOuIS RHEE, Director, Office of Innovation and Program Coordination, National Center on Minority Health and Health Disparities, National Institutes of Health WILL ROSS, Associate Dean for Diversity, Associate Professor of Medicine, Washington University School of Medicine WILLIAM SMITH, Senior Scientist and Director, Academy for Educational Development AMy WILSON-STRONkS, Project Director, Division of Standards and Survey Methods, and Principal Investigator, Hospitals, Language, and Culture Study, The Joint Commission WINSTON F. WONg, Medical Director, Community Benefit, Disparities Improvement and Quality Initiatives, Kaiser Permanente SAbRA WOOLLEy, Program Director, Health Communication and Informatics Branch, National Cancer Institute Study Staff LyLA M. HERNANDEZ, Senior Program Officer ERIN HAMMERS, Research Associate ERIN RuSCH, Research Assistant ROSE MARIE MARTINEZ, Director, Board on Population Health and Public Health Practice ii

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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 Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its pub- lished 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: benard Dreyer, New York University School of Medicine Crystal Duran, Cultural & Linguistics Unit, CIGNA Jean krause, American College of Physicians Foundation Rima Rudd, Harvard School of Public Health Although the reviewers listed above have provided many construc- tive comments and suggestions, they were not asked to endorse the final draft of the report before its release. The review of this report was over- seen by Harold J. Fallon, School of Medicine, University of Alabama at Birmingham. Appointed by the Institute of Medicine, he was 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 author and the institution. ix

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in memoriam This workshop summary is dedicated to Dr. Sabra Woolley, an accomplished researcher and adocate in the field of health communication, health literacy, and health disparities, a alued sponsor and founding member of the Roundtable on Health Literacy, and an irreplaceable colleague and friend. xi

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Acknowledgments The sponsors of the Institute of Medicine Roundtable on Health Literacy made it possible to plan and conduct the workshop, Measures of Health Literacy. Sponsors from the U.S. Department of Health and Human Services are the Health Resources and Services Administration, the Office of Disease Prevention and Health Promotion, and the National Cancer Institute. Non-federal sponsorship was provided by the Academy for Educational Development, Affinity Health Plan, American Academy of Family Physicians, Johnson & Johnson, Kaiser Permanente, Merck & Co., Inc., and the Missouri Foundation for Health. The Roundtable wishes to express its appreciation to the expert speakers whose presentations illuminated the ongoing work in developing measures of health literacy. These speakers were Marin Allen, Lisa Chew, Carolyn Clancy, John DuMoulin, Julie Gazmararian, Elizabeth Hahn, Amresh Hanchate, Nicole Lurie, Kathleen Mazor, Lauren McCormack, Ruth Parker, Andrew Pleasant, Sandra Smith, Beverly Weidmer Ocampo, Barry Weiss, and Amy Wilson-Stronks. The Roundtable also wishes to thank the planning committee mem- bers for their work in developing an excellent workshop agenda. Members of the planning committee were Cindy Brach, Carolyn Cocotas, Debbie Fritz, Ruth Parker, and Terri Tye. Thanks also go to Cindy Brach, Carolyn Cocotas, and George Isham for moderating the workshop. xiii

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Contents 1 INTRODUCTION 1 2 AN OVERVIEW OF MEASURES OF HEALTH LITERACY 5 Health Literacy Measurement: Mapping the Terrain, 5 The Importance of a National Dataset for Health Literacy, 11 NAAL Data: To Use or Not to Use?, 14 Health Literacy Measurement: A Brief Review and Proposal, 17 Discussion, 22 3 APPROACHES TO ASSESSING HEALTH LITERACY 29 What Is Health Literacy and How Do We Measure It?, 29 Discussion, 34 Refining and Standarizing Health Literacy Assessment: English and Spanish Item Banks, 35 Discussion, 40 Self-Report Measures of Health Literacy, 43 Discussion, 48 Measuring the Function in Functional Health Literacy, 49 Health Literacy and Cancer Prevention: Do People Understand What They Hear?, 54 Discussion, 56 x

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xi ConTenTS 4 POPULATION-BASED APPROACHES TO ASSESSING HEALTH LITERACY 61 Demographic Assessment for Health Literacy, 61 Mapping Health Literacy, 65 Discussion, 70 5 MEASURING HEALTH SYSTEM RESPONSES TO HEALTH LITERACY 73 America’s Health Insurance Plans’ Response to Health Literacy, 73 An Accreditor’s Effort to Push the Public Policy Agenda Forward, 79 Developing and Testing a CAHPS® Health Literacy Item Set, 81 Promoting Effective Communication: The Joint Commission’s Efforts to Address Culture, Language, and Health Literacy, 84 Discussion, 88 6 MEASURING HEALTH LITERACY: WHAT? SO WHAT? NOW WHAT? 91 Discussion, 95 REFERENCES 99 APPENDIXES A WORKSHOP AGENDA 103 B WORKSHOP SPEAKER BIOSKETCHES 107 CAHPS® CLINICIAN & GROUP SURVEY: C HEALTH LITERACY ITEM SET 117 TAbLES 3-1 Characteristics of Pilot Test Participants, 39 4-1 Association (Odds Ratio) of Inadequate Literacy with Self- Reported Health and Chronic Conditions (Comparing NHIS 1997), 65 4-2 Association (Odds Ratio) of Inadequate Literacy with Self- Reported Health and Chronic Conditions (Comparing HRS), 65

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xii ConTenTS FIguRES 2-1 Causal pathways between limited health literacy and health outcomes, 6 2-2 Conceptual model of the relationship among individual capacities, health-related print and oral literacy, and health outcomes, 8 2-3 Health care system and patients/public, 19 3-1 Conceptual framework for individual health literacy, 31 3-2 Signs of a stroke, 33 3-3 Caution symbols on medication bottles, 33 3-4 Item response theory, 35 3-5 Prose item, 37 3-6 Medications for Mr. Beta, 37 3-7 Sample body mass index chart, 38 3-8 Receiver Operating Characteristic curves for detecting limited health literacy, 46 3-9 Functional Healthcare Literacy Scale, 52 3-10 Functional Selfcare Literacy Scale, 52 3-11 Home visitation promotes parental functional health literacy, 53 4-1 Results: Comparison of S-TOFHLA and DAHL scores, 64 4-2 Mean health literacy by Public Use Microdata Area (PUMA) for Missouri, 68 4-3 Model and single variable estimates produce different area-level estimates, 69 5-1 Operating funds allocated to cultural and linguistic services, 85 6-1 Health literacy framework, 92

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