INNOVATIONS IN HEALTH LITERACY RESEARCH

WORKSHOP SUMMARY

Cori Vancheri, 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.
www.nap.edu



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INNOVATIONS IN HEALTH LITERACY RESEARCH WORKSHOP SUMMARY Cori Vancheri, 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 Govern­ ing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineer­ ing, 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), GlaxoSmithKline, Johnson & Johnson, and the Missouri Foundation for Health (09­0290­HL­09). 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 Number­13: 978­0­309­16185­5 International Standard Book Number­10: 0­309­16185­1 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624­6242 or (202) 334­3313 (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. Innovations in Health Literacy Research: 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, self­perpetuating 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 INNOVATIONS IN HEALTH LITERACY RESEARCH* SHARON E. BARRETT, Health Literacy Staff Consultant, Association of Clinicians for the Underserved CINDY BRACH, Senior Health Policy Researcher, Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services JULIE A. GAZMARARIAN, Associate Professor, Emory University Rollins School of Public Health JEAN KRAUSE, Executive Vice President and CEO, American College of Physicians Foundation MICHAEL PAASCHE-ORLOW, Associate Professor of Medicine, Boston University School of Medicine * 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. v

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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 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 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. 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 CLARENCE PEARSON, Consultant * 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. vi

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SCOTT C. RATZAN, Vice President, Global Health, Johnson & Johnson 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 PATRICK WAYTE, Vice President, Marketing and Health Education, American Heart Association 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 Study Staff LYLA M. HERNANDEZ, Senior Program Officer SUZANNE LANDI, Research Assistant 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: Leonard Epstein, Health Resources and Services Administration Elizabeth Hahn, Northwestern University Feinberg School of Medicine Alice Horowitz, University of Maryland School of Public Health Sandra Smith, University of Washington Center for Health Education and Research in Seattle Although the reviewers listed above have provided many construc­ tive comments and suggestions, they did not endorse the final draft of the report before its release. The review of this report was overseen by Hugh Tilson, University of North Carolina School of Public Health. Appointed by the Institute of Medicine, he was responsible for making certain that ix

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x RevIeWeRS 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 rapporteur and the institution.

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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 innovations in health literacy research which this report summarizes. Sponsorship for the Roundtable comes from the Agency for Healthcare Research and Quality, GlaxoSmithKline, Johnson & Johnson, and the Missouri Foundation for Health. The Roundtable wishes to express its appreciation to Michael Paasche­ Orlow for preparation and presentation of a paper summarizing the Health Literacy Annual Research Conference. The Roundtable is also grateful to Lisa Cooper and Dean Schillenger for their presentations on the role of health literacy in health disparities research; to Joshua Seidman and Michael Wolf for their presentations on health literacy in health information technology; and to David Baker and Debra Roter for their presentations on building the field of health literacy research. Thanks also go to Cynthia Baur for presentation of the HHS National Action Plan to Improve Health Literacy; to Carolyn Clancy and Raynard Kingdon for their presentations on the importance of the National Action Plan; and to Terry Davis and Rima Rudd for their presentations on the role of health literacy research in the National Action Plan. The Roundtable would also like to thank the members of the work ­ shop planning committee for their efforts in developing an excellent workshop agenda. Members of the planning committee were Sharon Barrett, Cindy Brach, Julie Gazmararian, Jean Krause, and Michael Paasche­Orlow. xi

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Contents 1 INTRODUCTION 1 2 REPORT ON THE FIRST ANNUAL RESEARCH ON HEALTH LITERACY CONFERENCE 3 3 THE ROLE OF HEALTH LITERACY IN HEALTH DISPARITIES RESEARCH 7 Health Literacy and Health Disparities: Opportunities for Trans­Disciplinary Collaboration, 7 Will Improving Health Literacy Reduce Health Disparities for Vulnerable Populations?, 12 Discussion, 18 4 THE ROLE OF HEALTH LITERACY IN HEALTH INFORMATION TECHNOLOGY 23 Health Literacy and Meaningful Use of Health IT, 23 Promoting Health Literacy via Innovative Health Technologies, 26 Discussion, 29 5 PROFESSIONAL DEVELOPMENT IN HEALTH LITERACY RESEARCH 33 How Do We Build the Field of Health Literacy Research?, 33 Health Literacy Research: Building the Field, 35 Discussion, 37 xiii

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xiv ContentS 6 A CALL TO ACTION 39 The National Action Plan to Improve Health Literacy, 39 Health Literacy Research in Action: Empowering Patients and Improving Health Care Quality, 41 Health Literacy Research: Looking Toward a National Agenda, 44 Discussion, 47 7 HEALTH LITERACY RESEARCH CONTRIBUTIONS TO THE NATIONAL ACTION PLAN 49 The Role of Health Literacy Research in the National Action Plan, 49 National Action Plan to Improve Health Literacy: Goal 6, Research, 53 Discussion, 56 8 LESSONS LEARNED FROM THE WORKSHOP 59 REFERENCES 63 APPENDIXES A WORKSHOP AGENDA 67 B WORKSHOP SPEAKER BIOSKETCHES 71 C WORKSHOP REPORT FROM THE HEALTH LITERACY ANNUAL RESEARCH CONFERENCE 79 TABLE 3­1 Contrasting Themes, 10 FIGURES 3­1 Conceptual model of health literacy, 8 3­2 Understanding disparities in access to and quality of health care, 9