HEALTH LITERACY

IMPROVING HEALTH, HEALTH SYSTEMS,
AND HEALTH POLICY AROUND THE WORLD

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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HEALTH LITERACY IMPROVING HEALTH, HEALTH SYSTEMS, AND HEALTH POLICY AROUND THE WORLD 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, NW  Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Gov- erning Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engi- neering, and the Institute of Medicine. This study was supported by contracts between the National Academy of Sciences and Aetna; the Agency for Healthcare Research and Quality (HHSP233200900537P); the American College of Physicians Foundation; America’s Health Insurance Plans; the Health Resources and Services Administration (HHSH25034004T); the East Bay Community Foundation (Kaiser Permanente); GlaxoSmithKline; Humana; Johnson & Johnson; Merck and Co., Inc.; the Missouri Foundation for Health (09-0290-HL-09); Office of Disease Prevention and Health Promotion; and United Healthcare. Any opinions, findings, conclusions, 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 provided support for this project. International Standard Book Number-13:  978-0-309-28484-4 International Standard Book Number-10:  0-309-28484-8 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20055; (800) 624-6242 or (202) 334-3313; http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2013 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). 2013. Health literacy: Improving health, health systems, and health policy around the world: Workshop summary. Wash- ington, 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. C. D. (Dan) Mote, Jr., 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 Sci- ences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal govern- ment. Functioning in accordance with general policies determined by the Acad- emy, 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 com- munities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. C. D. (Dan) Mote, Jr., are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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PLANNING COMMITTEE ON HEALTH LITERACY: IMPROVING HEALTH, HEALTH SYSTEMS, AND HEALTH POLICY AROUND THE WORLD1 DEBBIE FRITZ, Director for Policy and Standards, Health Management Innovations Division, GlaxoSmithKline MARGARET LOVELAND, Senior Director of Global Medical Affairs, Merck & Co., Inc. CLARENCE PEARSON, Global Health Leadership and Management Consultant to Nonprofit Organizations ANDREW PLEASANT, Health Literacy and Research Director, Canyon Ranch Institute SCOTT C. RATZAN, Vice President, Global Health, Johnson & Johnson, Editor-in-Chief, Journal of Health Communication: International Perspectives WILL ROSS, Associate Dean for Diversity and Associate Professor of Medicine, Washington University School of Medicine RIMA RUDD, Department of Society, Human Development, and Health, Harvard School of Public Health 1 Institute of Medicine 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. v

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ROUNDTABLE ON HEALTH LITERACY1 GEORGE ISHAM (Chair), Medical Director and Chief Health Officer, HealthPartners WILMA ALVARADO-LITTLE, Director, Community Engagement/ Outreach Center for the Elimination of Minority Health Disparities, University of Albany CINDY BRACH, Senior Health Policy Researcher, Center for Delivery, Organization, and Markets, Agency for Healthcare Research and Quality DARREN DeWALT, Associate Professor of Medicine, University of North Carolina BENARD P. DREYER, Professor of Pediatrics, New York University School of Medicine; Chair, American Academy of Pediatrics Health Literacy Program Advisory Committee LEONARD EPSTEIN, Senior Advisor, Clinical Quality and Culture, Health Resources and Services Administration LAURIE FRANCIS, Senior Director of Clinic Operations and Quality, Oregon Primary Care Association DEBBIE FRITZ, Director, Policy and Standards, Health Management Innovations Division, GlaxoSmithKline MARTHA GRAGG, Vice President of Program, Missouri Foundation for Health JILL GRIFFITHS, Vice President, Communications, Aetna 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 JOAN KELLY, Director, Consumer Experience, Humana, Inc. MARGARET LOVELAND, Global Medical Affairs, Merck & Co., Inc. PATRICK McGARRY, Assistant Division Director, Scientific Activities Division RUTH PARKER, Professor of Medicine, Emory University School of Medicine KAVITA PATEL, Managing Director for Clinical Transformation and Delivery, The Brookings Institution CLARENCE PEARSON, Consultant, Global Health Leadership and Management 1  Institute of Medicine forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published workshop summary rests with the work- shop rapporteur and the institution. vi

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SUSAN PISANO, Vice President of Communications, America’s Health Insurance Plans ANDREW PLEASANT, Health Literacy and Research Director, Canyon Ranch Institute SCOTT C. RATZAN, Vice President, Global Health, Johnson & Johnson WILL ROSS, Associate Dean for Diversity, Associate Professor of Medicine, Washington University School of Medicine RIMA RUDD, Department of Society, Human Development & Health, Harvard School of Public Health STEVEN RUSH, Director, Health Literacy Innovations Program, United Health Group PAUL M. SCHYVE, Senior Vice President, The Joint Commission PATRICK WAYTE, Vice President, Marketing and Health Education, American Heart Association WINSTON F. WONG, Medical Director, Community Benefit, Disparities Improvement and Quality Initiatives, Kaiser Permanente IOM Staff LYLA M. HERNANDEZ, Roundtable Director ANDREW LEMERISE, Research Associate ANGELA MARTIN, Senior Program Assistant ROSE MARIE MARTINEZ, Director, Board on Population Health and Public Health Practice vii

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Reviewers This workshop summary has been reviewed in draft form by indi- viduals 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 published workshop summary as sound as possible and to ensure that the workshop summary meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integ- rity of the process. We wish to thank the following individuals for their review of this workshop summary: Sharon E. Barrett, SEB and Associates Dianne Gordon Conyers, LaGuardia Community College Yolanda Partida, Hablamos Juntos Carol Teutsch, University of California, Los Angeles Although the reviewers listed above have provided many construc- tive comments and suggestions, they were not asked to endorse the final draft of the workshop summary before its release. The review of this workshop summary was overseen by Hugh Tilson, University of North Carolina. Appointed by the Institute of Medicine, he was responsible for making certain that an independent examination of this workshop sum- ix

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x REVIEWERS mary was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this workshop summary rests entirely with the rapporteur and the institution.

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Acknowledgments The sponsors of the Institute of Medicine Roundtable on Health Lit- eracy made it possible to plan and conduct the workshop Health Literacy: Improving Health, Health Systems, and Health Policy Around the World: Workshop Summary. Sponsors from the U.S. Department of Health and Human Services are the Agency for Healthcare Research and Quality, the Health Resources and Services Administration, and the Office of Disease Prevention and Health Promotion. Nonfederal sponsorship was provided by Aetna; the American College of Physicians Foundation; the America’s Health Insurance Plans; the East Bay Community Foundation (Kaiser Permanente); GlaxoSmithKline; Humana; Johnson & Johnson; Merck and Co., Inc.; the Missouri Foundation for Health; and the UnitedHealth Group. The Roundtable wishes to extend its appreciation to Andrew Pleasant for his excellent paper exploring health literacy practices around the world. The Roundtable also wishes to express its gratitude to the follow- ing speakers for their thoughtful and stimulating presentations: Franklin Apfel, Cynthia Baur, Jo Ivey Boufford, Jennifer Cabe, Nicola Dunbar, Federica Gazzotti, Steven Hoffman, Fikry W. Isaac, Ilona Kickbusch, Jacob Kumaresan, Diane Levin-Zamir, Jennifer Lynch, Don Nutbeam, Jürgen M. Pelikan, Scott C. Ratzan, Michael Rosenblatt, Kristine Sørensen, Suzanne Thompson, and Sandra Vamos. The planning committee members are also to be commended for their work in developing an excellent workshop agenda. Members of the planning committee were Debbie Fritz, Margaret Loveland, Clarence Pearson, Andrew Pleasant, Scott C. Ratzan, Will Ross, and Rima Rudd. xi

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Contents 1 INTRODUCTION 1 References, 2 2 WELCOME 5 The New York Academy of Medicine, 5 United Nations, 6 Reference, 8 3 HEALTH LITERACY PERSPECTIVES 9 Health Literacy Work of the World Health Organization, 9 Policies and Programs Promoting Health Literacy Globally, 14 United States: Health Literacy and Recent Federal Initiatives, 20 From Policy to Implementation, 24 Discussion, 29 References, 34 4 HEALTH LITERACY POLICY AND PROGRAMS 37 Health Literacy in Canada, 37 Health Literacy as Part of a National Approach to Safety and Quality of Life, 41 Health Literacy in Italy’s Emilia Romagna Region, 48 Health Literacy in Ireland, 50 Discussion, 54 References, 57 xiii

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xiv CONTENTS 5 INNOVATIONS IN HEALTH LITERACY 59 Health Literacy in Israel: Policy, Action, Research, and Beyond, 59 The European Health Literacy Survey, 63 Health Literacy Communication(s), 68 Innovations from a Corporate Perspective, 73 Discussion, 78 References, 82 6 CONCLUDING PANEL 83 Where Do We Go from Here?, 83 A Public Health Perspective for Health Literacy, 86 The Evolving Concept of Health Literacy, 88 Discussion, 91 Reference, 96 APPENDIXES A Commissioned Paper: Health Literacy Around the World: Part 1 Health Literacy Efforts Outside of the United States 97 B Speaker Biosketches 207

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Tables and Figures TABLES 3-1 Examples of Health Checklists, 17 4-1 Examples of Health Literate Organization Outcomes, 44 5-1 Examples from the HLS-EU Questionnaire, 66 FIGURES 3-1 The rapidly increasing burden of noncommunicable diseases in the developing world, 12 3-2 E-health architecture model, 13 3-3 Health literacy framework, 14 3-4 A scorecard for health, 19 3-5 Program site in shantytowns of Lima, Peru, 26 3-6 A community toilet, 28 4-1 An intersectoral approach to health literacy, 39 4-2 Key findings: Types of health literacy initiatives in Canada, 40 4-3 Consumer-centered component of the Australian Safety and Quality Framework for Health Care, 42 4-4 Types of health literacy strategies and approaches, 48 4-5 Literacy and numeracy: essential lifelong learning throughout life events, 52 xv

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xvi TABLES AND FIGURES 4-6  Health literacy awareness among general practitioners in Ireland, 54 5-1 Clalit Health Services, 61 5-2 HLS-EU conceptual model of health literacy, 65 5-3 Levels of health literacy for the eight countries participating in the European Health Literacy Survey, 67 5-4 Making healthier choices, 70