HEALTH LITERACY IMPLICATIONS

FOR HEALTH CARE REFORM

WORKSHOP SUMMARY

Theresa Wizemann, 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 IMPLICATIONS F O R H E A LT H C A R E R E F O R M W O R K S H O P S U M M A RY Theresa Wizemann, 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 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 the Agency for Healthcare Research and Quality (HHSP233200900537P), Health Resources and Services Administration (HHSH25034004T), Association of Health Insurance Plans, American College of Physicians Foundation, GlaxoSmith- Kline, Johnson & Johnson, Kaiser Permanente, Merck and Co., Inc., and the Mis- souri Foundation for Health (09-0290-HL-09). 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: 978-0-309-16416-0 International Standard Book Number-10: 0-309-16416-8 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 2011 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). 2011. Health Literacy Implications for Health Care Reform: A Workshop Summary. Washington, DC: The National Acad- emies 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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PLANNING COMMITTEE ON HEALTH CARE REFORM AND HEALTH LITERACY1 ARTHUR CULBERT, President and CEO, Health Literacy Missouri GEORGE ISHAM, Medical Director and Chief Health Officer, HealthPartners RUTH PARKER, Professor of Medicine, Emory University School of Medicine SUSAN PISANO, Director of Communications, America’s Health Insurance Plans WINSTON WONG, Medical Director, Community Benefit, Disparities Improvement and Quality Initiatives, Kaiser Permanente 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 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 ARTHUR CULBERT, President and CEO, Health Literacy Missouri 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 LEONARD EPSTEIN, Senior Advisor, Clinical Quality and Culture, Health Resources and Services DEBBIE FRITZ, Director, Policy and Standards, Health Management Innovations Division, GlaxoSmithKline 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 JEAN KRAUSE, Executive Vice President and CEO, American College of Physicians Foundation 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 YOLANDA PARTIDA, Director, National Program Office, Hablamos Juntos, University of California, San Francisco, Fresno Center for Medical Education & Research 1Institute of Medicine 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. vi

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CLARENCE PEARSON, Consultant, Global Health Leadership and Management SUSAN PISANO, Director 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 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 Study Staff LYLA M. HERNANDEZ, Staff Director SUZANNE LANDI, Senior Project Assistant (until November 1, 2010) ANGELA MARTIN, Senior Project Assistant (beginning November 1, 2010) ROSE MARIE MARTINEZ, Director, Board on Population Health and Public Health Practice vii

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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 process. We wish to thank the following individuals for their review of this report: Robert Logan, National Library of Medicine Rima Rudd, Harvard School of Public Health Steven Rush, United Health Group Alliances Paula Simpson, Center for Health Literacy 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 Hugh Tilson, University of North Carolina School of Public Health. Appointed by the Institute of Medicine, he was responsible for making certain that an independent examination of this report was car- ried 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 rapporteur and the institution. ix

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Acknowledgments The support of the sponsors of the Institute of Medicine Roundtable on Health Literacy made it possible to plan and conduct the workshop on the implications of health literacy for health care reform that this report summarizes. Sponsors from the Department of Health and Human Ser- vices are the Agency for Healthcare Research and Quality and the Health Resources and Services Administration. Non-federal sponsorship is pro- vided by the Association of Health Insurance Plans, the American College of Physicians Foundation, GlaxoSmithKline, Johnson & Johnson, Kaiser Permanente, Merck and Co., Inc., and the Missouri Foundation for Health. The roundtable thanks Stephen A. Somers and Roopa Mahadvan for preparing a commissioned paper that carefully and expertly analyzed ways in which health literacy could contribute to implementation of the provisions of the Patient Protection and Affordable Care Act. This paper provided a basis for the presentations of the other speakers. The roundtable also wishes to thank the workshop speakers whose excellent presentations generated lively discussion. These speakers were: Cheryl Bettigole, Harold Fallon, Frank Funderburk, Gerald K. McEvoy, Anand K. Parekh, Susan Pisano, Lee Sanders, and Sara Hudson Scholle. The roundtable also wishes to thank the workshop planning com- mittee members for their hard work in putting together a fascinating and stimulating agenda. Members of the workshop planning committee were: Arthur Culbert, George Isham, Ruth Parker, Susan Pisano, and Winston Wong. xi

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Contents 1 INTRODUCTION 1 2 HEALTH LITERACY AND HEALTH CARE REFORM 5 Health Literacy and the Affordable Care Act, 5 2010—The Year of Health Literacy, 9 Discussion, 14 3 OPPORTUNITIES AND CHALLENGES FOR INDIVIDUALS UNDER THE ACA 19 Vulnerable Populations, 19 Children, 24 Senior Citizens with Health Problems, 28 Discussion, 29 4 OPPORTUNITIES AND CHALLENGES FOR THOSE IMPLEMENTING THE ACA 33 Center for Medicare and Medicaid Services, 33 Insurers, 37 Quality, 38 Pharmacy Practice, 41 Discussion, 44 xiii

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xiv CONTENTS 5 HOW CAN HEALTH LITERACY FACILITATE HEALTH CARE REFORM? 49 General Discussion, 52 REFERENCES 55 APPENDIXES A WORKSHOP AGENDA 57 B WORKSHOP SPEAKER BIOSKETCHES 61 C HEALTH LITERACY IMPLICATIONS OF THE AFFORDABLE CARE ACT 69 D HEALTH LITERACY AND HEALTH REFORM: WHERE DO CHILDREN FIT IN? 101 FIGURES 3-1 Readability of CHIP forms in all 50 states, 25 4-1 Flow chart simplifying Medicare choices, 36 D-1 Life course perspective on health literacy, 102 BOXES 2-1 Major Health Policy Initiatives Released in 2010, 10 3-1 Making the ACA work for Children in Low-Literacy Families, 27 4-1 Key ACA Provisions for Pharmacy Stakeholders, 43