TOWARD HEALTH EQUITY AND PATIENT-CENTEREDNESS

Integrating Health Literacy, Disparities Reduction, and Quality Improvement

WORKSHOP SUMMARY

Samantha Chao, Karen Anderson, and Lyla Hernandez, Rapporteurs

Forum on the Science of Health Care Quality Improvement and Implementation

Roundtable on Health Disparities

Roundtable on Health Literacy

Board on Health Care Services

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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Samantha Chao, Karen Anderson, and Lyla Hernandez, Rapporteurs Forum on the Science of Health Care Quality Improvement and Implementation Roundtable on Health Disparities Roundtable on Health Literacy Board on Health Care Services Board on Population Health and Public Health Practice THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu

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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 Academy for Educational Development (unnumbered award); Affinity Health Plan (unnumbered award); Agency for Healthcare Research and Quality (Contracts HHS233200600595P; HHSP233200700506P; HHSP233200800363P); Agency for Healthcare Research and Quality and the Office of Minority Health (Contracts HHSP23320042509XI; TO#11); American Academy of Family Physicians (unnumbered award); California Endowment (Contracts 20052634; 20071781); Cali- fornia HealthCare Foundation (Contract 06-1213); Commonwealth Fund (Contract 20060048); Connecticut Health Foundation (unnumbered grant); Department of Health and Human Services (N01-OD-4-2139, TO#148); Ford Foundation (Contracts 1050-0152,FF5H003); GlaxoSmithKline (G050002912); Healthcare Georgia Foundation (unnumbered grant); The Henry J. Kaiser Family Foundation (Contract 01-1149-810); Kaiser Permanente (Contract 20072164); Merck & Co., Inc. (unnumbered grants); Mis- souri Foundation for Health (Contracts 06-0022-HPC; unnumbered award); Pfizer Institute (unnumbered award); Robert Wood Johnson Foundation (Contracts 56387; 58291); UnitedHealth Group (unnumbered award); the Veterans Health Administra- tion (691-D68159); and W. K. Kellogg Foundation (Contract P0123822). 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: 978-0-309-12749-3 International Standard Book Number-10: 0-309-12749-1 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. Toward Health Equity and Patient- Centeredness: Integrating Health Literacy, Disparities Reduction, and Quality Improvement: Workshop Summary. Washington, DC: The National Academies Press.

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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 char- ter of the National Academy of Sciences, as a parallel organization of outstand- ing 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. 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 FOR A WORKSHOP ON PROMOTING HEALTH QUALITY: QUALITY IMPROvEMENT IN UNDERSERvED POPULATIONS AND AREAS1 IGNATIUS BAU (Chair), Program Director, The California Endowment, San Francisco, CA THOMAS F. BOAT, Executive Associate Dean, University of Cincinnati College of Medicine, and CEO, University of Cincinnati Physicians MARSHALL H. CHIN, Co-Director, General Internal Medicine Research, The University of Chicago CAROLYN M. CLANCY, Director, Agency for Healthcare Research and Quality, Rockville, MD DENISE DOUGHERTY, Senior Advisor, Agency for Healthcare Research and Quality, Rockville, MD GEORGE ISHAM, Medical Director and Chief Health Officer, HealthPartners, Inc., Bloomington, MN NICOLE LURIE, Senior Scientist and Alcoa Chair, The RAND Corporation, Arlington, VA PAUL H. O’NEILL, Former U.S. Secretary of the Treasury, Pittsburgh, PA 1 IOM planning committees are solely responsible for organizing the workshop, identify- ing topics, and choosing speakers. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. v

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FORUM ON THE SCIENCE OF HEALTH CARE QUALITY IMPROvEMENT AND IMPLEMENTATION1 THOMAS F. BOAT (Co-Chair), Executive Associate Dean, University of Cincinnati College of Medicine, and CEO, University of Cincinnati Physicians PAUL H. O’NEILL (Co-Chair), Former U.S. Secretary of the Treasury, Pittsburgh, PA PAUL B. BATALDEN, Director, Health Care Improvement Leadership Development, Dartmouth Medical School, Hanover, NH IGNATIUS BAU, Program Director, The California Endowment, Oakland, CA JAY E. BERKELHAMER, Senior Vice President of Medical Affairs, Children’s Healthcare of Atlanta, GA MARSHALL H. CHIN, Associate Professor of Medicine and Co- Director, General Internal Medicine Research, University of Chicago, IL CAROLYN M. CLANCY, Director, Agency for Healthcare Research and Quality, Rockville, MD* CATHERINE D. DEANGELIS, Editor-in-Chief, Journal of the American Medical Association, Scientific Publications and Multimedia Applications, Chicago, IL JULIE L. GERBERDING, Director, Centers for Disease Control and Prevention, Atlanta, GA* DONALD GOLDMANN, Senior Vice President, Institute for Healthcare Improvement, Cambridge, MA JUDITH GUERON, Scholar-in-Residence, MDRC, New York, NY RICHARD KAHN, Chief Scientific and Medical Officer, American Diabetes Association, Alexandria, VA BARNETT S. KRAMER, Associate Director for Disease Prevention JOEL KUPERSMITH, Chief Research and Development Officer, Veterans Health Administration, Washington, DC* LAURA C. LEvITON, Special Advisor for Evaluation, the Robert Wood Johnson Foundation, Princeton, NJ LORI MELICHAR, Senior Program Officer, the Robert Wood Johnson Foundation, Princeton, NJ * Denotes ex-officio members. 1 IOM forums and roundtables do not issue, review, or approve individual docu- ments. The responsibility for the published workshop summary rests with the work- shop rapporteurs and the institution. vi

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BRIAN S. MITTMAN, Co-Editor-in-Chief, Implementation Science, and VA Greater Los Angeles Healthcare System, Sepulveda, CA STEPHEN M. SHORTELL, Blue Cross of California, Distinguished Professor of Health Policy and Management, University of California, Berkeley MARITA G. TITLER, Director, Institute for Translational Practice, University of Iowa City Health Care System and University of Iowa, Department of Nursing Services and Patient Care, Iowa City Forum Staff SAMANTHA M. CHAO, Forum Director CASSANDRA CACACE, Senior Program Assistant ROGER HERDMAN, Director, Board on Health Care Services vii

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ROUNDTABLE ON HEALTH DISPARITIES1 NICOLE LURIE (Chair), Senior Scientist and Alcua Chair, The RAND Corporation, Arlington, VA MILDRED THOMPSON (Co-Chair), Senior Director, PolicyLink, Center for Health and Place, Oakland, CA2 vICTORIA HOLLOWAY BARBOSA, President, Dermal Insights, Inc., Chicago, IL ANNE C. BEAL, Senior Program Officer, Quality of Care for Underserved Populations, The Commonwealth Fund, New York CHERYL A. BOYCE, Executive Director, Ohio Commission on Minority Health, Vern Riffe Center for Government and the Performing Arts, Columbus, OH3 AMERICA BRACHO, CEO, Latino Health Access, Anaheim, CA FRANCIS D. CHESLEY, Director, Office of Extramural Research, Education, and Priority Populations, Agency for Healthcare Research and Quality, Rockville, MD TODD COx, Program Officer, Racial Justice and Minority Rights, Ford Foundation, New York, NY WILLIAM F. CRIMI, Vice President, Program and Evaluation, Connecticut Health Foundation, New Britain, CT ALICIA DIxON, Program Officer, The California Endowment, Los Angeles, CA JOSé J. ESCARCE, Professor of Medicine, David Geffen School of Medicine, University of California, Los Angeles GARTH N. GRAHAM, Deputy Assistant Secretary, Minority Health Department of Health and Human Services, Office of Minority Health, Rockville, MD TOM GRANATIR, Director, Policy and Communications, Innovation Center Humana, Inc., Chicago, IL CARA v. JAMES, Senior Policy Analyst, Henry J. Kaiser Family Foundation, Washington, DC JENNIE R. JOE, Professor, Department of Family and Community Medicine, and Director, NARTC, University of Arizona, College of Medicine, Tucson JAMES R. KIMMEY, President and CEO, Missouri Foundation for Health, St. Louis, MO 1 IOM forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. 2 Appointed Co-Chair May 2008. 3 Served through May 2008. viii

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HOWARD K. KOH, Associate Dean and Director, Division of Public Health Practice, Harvard School of Public Health, Boston, MA JAMES KRIEGER, Chief, Epidemiology Planning and Evaluation Unit, King County Department of Health, Seattle, WA ANNE C. KUBISCH, Co-Director, Roundtable on Community Change, Aspen Institute, New York, NY JEFFREY LEvI, Executive Director, Trust for America’s Health, Washington, DC JOHN C. LEWIN, Chief Executive Officer, American College of Cardiology, Washington, DC JANE ISAACS LOWE, Senior Program Officer, the Robert Wood Johnson Foundation, Princeton, NJ RICHARD K. MURRAY, Vice President, External Medical and Scientific Affairs, U.S. Human Health, Merck and Company, Inc., North Wales, PA GARY D. NELSON, President, Healthcare Georgia Foundation, Atlanta SAMUEL NUSSBAUM, Executive Vice President and Chief Medical Officer, WellPoint, Inc., Indianapolis, IN MICHAEL W. PAINTER, Senior Program Officer, the Robert Wood Johnson Foundation, Princeton, NJ DAvID P. PRYOR, Medical Director, Aetna, and Founder, Blackwomenhealth.com, Thousand Oaks, CA STEvE M. PU, General Surgeon, Missouri Foundation for Health, Kennett, MO KYU RHEE, Director, Office of Innovation and Program Coordination, National Center on Minority Health and Health Disparities, National Institutes of Health, Bethesda, MD MARK D. SMITH, President and CEO, California Health Care Foundation, Oakland SAMUEL SO, Lui Hac Minh Professor, Stanford University School of Medicine4 PATTIE TUCKER, Lead Health Scientist, Community and Health Program, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention, Atlanta, GA WILLIAM A. vEGA, Professor, Department of Family Medicine, David Geffen School of Medicine, University of California, Los Angeles4 4 Liaisons from Board on Population Health and Public Health Practice. Appointed as members in May 2008. ix

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WINSTON F. WONG, Medical Director, Community Benefit, and Director, Disparities Improvement and Quality Initiatives, Kaiser Permanente Federation, Oakland, CA TERRI D. WRIGHT, Program Director, Health Policy, W. K. Kellogg Foundation, Battle Creek, MI Roundtable Staff KAREN M. ANDERSON, Roundtable Director ROSE MARIE MARTINEZ, Director, Board on Population Health and Public Health Practice THELMA L. COx, Senior Program Assistant HOPE R. HARE, Administrative Assistant x

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ROUNDTABLE ON HEALTH LITERACY1 GEORGE ISHAM (Chair), Medical Director and Chief Health Officer, HealthPartners, Inc., Bloomington, MN SHARON BARRETT, Association of Clinicians for the Underserved (ACU), Tysons Corner, VA CAROLYN COCOTAS, Director, Affinity Health Plan, Bronx, NY MICHAEL L. DAvIS, Vice President, Human Resources, U.S. Retail and Corporate, General Mills, Inc., Minneapolis, MN BARBARA A. DEBUONO, Senior Medical Advisor, Pfizer Public Health and Policy Group, Pfizer, Inc., New York, NY DEBBIE FRITZ, Director for Policy and Standards, Health Management Innovations Division, GlaxoSmithKline, Research Triangle Park, NC BETSY L. HUMPHREYS, Deputy Director, U.S. National Library of Medicine, Bethesda, MD JEAN KRAUSE, Executive Vice President and Chief Executive Officer, American College of Physicians Foundation, Philadelphia, PA LINDA JOHNSTON LLYOD, Senior Advisor, Health Resources and Services Administration, Rockville, MD DENNIS MILNE, Vice President, Patient Education and the American Stroke Association, American Heart Association, Dallas, TX RUTH PARKER, Professor, Department of Medicine, Division of General Medicine, Emory University School of Medicine, Atlanta, GA YOLANDA PARTIDA, National Program Director, Hablamos Juntos, Fresno, CA KYU RHEE, Director, Office of Innovation and Program Coordination, National Center on Minority Health and Health Disparities, National Institutes of Health, Bethesda, MD WILLIAM A. SMITH, Senior Fellow, Innovations Management, Academy of Educational Development, Washington, DC CAROL TEUTSCH, Director, Medical Services, Merck & Co., North Wales, PA 1 IOM forums and roundtables do not issue, review, or approve individual docu- ments. The responsibility for the published workshop summary rests with the work- shop rapporteurs and the institution. xi

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WINSTON F. WONG, Medical Director, Community Benefit, and Director, Disparities Improvement and Quality Initiatives, Kaiser Permanente Federation, Oakland, CA SABRA WOOLLEY, Program Director, Health Communication and Informatics Branch, National Cancer Institute, Rockville, MD ANTRONETTE YANCEY, Professor, Department of Health Services, University of California, Los Angeles School of Public Health Roundtable Staff LYLA M. HERNANDEZ, Roundtable Director ROSE MARIE MARTINEZ, Director, Board on Population Health and Public Health Practice HOPE R. HARE, Administrative Assistant TIA CARTER, Senior Program Assistant xii

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Reviewers This report has been reviewed in draft form by individuals cho- sen for their diverse perspectives and technical expertise, in accor- dance 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 insti- tution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectiv- ity, 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: TOM GRANATIR, Humana Europe, Ltd., London, UK JOHN C. LEWIN, American College of Cardiology, Washington, DC RICHARD E. MARSHALL, Copley Pediatrics, Harvard Vanguard Medical Associates, Boston, MA CAROL TEUTSCH, Medical Services, Merck & Co., Inc., North Wales, PA Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the final draft of the report before its release. The review xiii

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xiv REVIEWERS of this report was overseen by CARMEN R. GREEN, M.D., Health Disparities Research Program, Michigan Institute for Clinical and Health Research. Appointed by the Institute of Medicine, she was responsible for making certain that an independent examination of this report was carried out in accordance with institutional pro- cedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authors and the institution.

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Contents 1 INTRODUCTION 1 The Workshop Agenda, 3 2 OPPORTUNITY AT THE INTERSECTION OF QUALITY IMPROVEMENT, DISPARITIES REDUCTION, AND HEALTH LITERACY 5 Quality, 6 Disparities, 7 Health Literacy, 9 The Perfect Storm, 12 Next Steps, 16 3 BUILDING THE FOUNDATION FOR INTEGRATING HEALTH LITERACY, DISPARITIES REDUCTION, AND QUALITY IMPROVEMENT IN HEALTH AND HEALTH CARE 17 Health Literacy: A Matter of Health Care Quality and Equity, 17 Integrating Health Literacy, Disparities Reduction, and Quality Improvement, 23 Patient-Centeredness as an Indicator of Quality, 27 Reaction and Discussion, 36 xv

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xvi CONTENTS 4 INTEGRATION AT THE PRACTITIONER LEVEL 41 Panel Introduction, 41 Health Plan Level, 42 Ambulatory Care Level, 44 Hospital Level, 46 Reaction Panel, 50 Discussion, 53 5 BREAKOUT GROUPS 55 Ambulatory Care, 55 Health Plans, 57 Hospitals, 58 General Discussion, 60 6 POLICY ISSUES OF INTEGRATION 63 Data and Measurement, 63 National Perspective, 65 Discussion, 68 7 CONCLUDING REMARKS 71 Collaboration and Creativity, 71 Communication, 72 Data, Measures, and Standardization, 72 Developing Literacy Throughout the Lifespan, 73 At-Risk Populations, 73 Models of Care, 74 Self-Management, 74 Conclusion, 74 REFERENCES 75 APPENDIXES A Workshop Agenda 79 B Workshop Participants 83