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Health Literacy and Numeracy: Workshop Summary (2014)

Chapter: Front Matter

Suggested Citation:"Front Matter." Institute of Medicine. 2014. Health Literacy and Numeracy: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18660.
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Health Literacy and Numeracy WORKSHOP SUMMARY Melissa G. French, Rapporteur Roundtable on Health Literacy Board on Population Health and Public Health Practice

THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001 NOTICE: The workshop that is the subject of this workshop summary was approved by the Governing Board of the National Research Council, whose mem- bers are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. This activity was supported by contracts between the National Academy of Sciences and the Agency for Healthcare Research and Quality (HHSP233200900537P); the American College of Physicians Foundation; America’s Health Insurance Plans; the California Dental Association; the East Bay Community Foundation (Kaiser Permanente); Eli Lilly and Company; the Health Resources and Services Administra- tion (HHSH25034004T); Humana; Johnson & Johnson; Merck and Co., Inc.; the North Shore–Long Island Jewish Health System; the Office of Disease Prevention and Health Promotion; and the UnitedHealth Group. The views presented in this publication are those of the rapporteur and do not necessarily reflect the views of the organizations or agencies that provided support for the activity. International Standard Book Number-13: 978-0-309-29980-0 International Standard Book Number-10: 0-309-29980-2 Additional copies of this workshop summary are available for sale from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (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 2014 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). 2014. Health Literacy and Numer- acy: Workshop Summary. Washington, DC: The National Academies Press.

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

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 Acad- emy has a mandate that requires it to advise the federal government 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 members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineer- ing programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. C. D. Mote, Jr., is presi- dent 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 Insti- tute 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 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 providing 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. C. D. Mote, Jr., are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

PLANNING COMMITTEE ON HEALTH LITERACY AND NUMERACY1 ANDREA APTER, Professor of Medicine, University of Pennsylvania SUSAN PISANO, Vice President of Communications, America’s Health Insurance Plans LYNN QUINCY, Senior Policy Analyst, Consumers Union RIMA RUDD, Department of Society, Human Development and Health, Harvard School of Public Health STEVEN RUSH, Director, Health Literacy Innovations Program, UnitedHealth Group WINSTON F. WONG, Medical Director, Community Benefit, Disparities Improvement and Quality Initiatives, Kaiser Permanente 1 Institute of Medicine planning committees are solely responsible for organizing the work- shop, identifying topics, and choosing speakers. The responsibility for the published workshop summary rests with the workshop rapporteur and the institution. v

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 GEMIRALD DAUS, Public Health Analyst, Health Resources and Services Administration Office of Health Equity, U.S. Department of Health and Human Services DARREN DEWALT, Associate Professor of Medicine, University of North Carolina at Chapel Hill BENARD P. DREYER, Professor of Pediatrics, New York University School of Medicine, and Chair, American Academy of Pediatrics Health Literacy Program Advisory Committee ELIZABETH FOWLER, Vice President, Global Health Policy, Johnson & Johnson LAURIE FRANCIS, Senior Director of Clinic Operations and Quality, Oregon Primary Care Association LORI HALL, Consultant, Health Education, Eli Lilly and Company 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 MARGARET LOVELAND, Global Medical Affairs, Merck & Co., Inc. PATRICK MCGARRY, Assistant Division Director, Scientific Activities Division, American Academy of Family Physicians RUTH PARKER, Professor of Medicine, Emory University School of Medicine TERRI ANN PARNELL, Vice President, Health Literacy and Patient Education, North Shore–Long Island Jewish Health System KIM PARSON, Consumer Experience, Humana, Inc. KAVITA PATEL, Managing Director for Clinical Transformation and Delivery, The Brookings Institution 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 workshop rapporteur and the institution. vii

CLARENCE PEARSON, Consultant, Global Health Leadership and Management SUSAN PISANO, Vice President of Communications, America’s Health Insurance Plans ANDREW PLEASANT, Health Literacy and Research Director, Canyon Ranch Institute LINDSEY ROBINSON, President, California Dental Association RIMA RUDD, Department of Society, Human Development and Health, Harvard School of Public Health STEVEN RUSH, Director, Health Literacy Innovations Program, UnitedHealth 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 MELISSA G. FRENCH, Associate Program Officer ANDREW LEMERISE, Research Associate ANGELA MARTIN, Senior Program Assistant ROSE MARIE MARTINEZ, Director, Board on Population Health and Public Health Practice viii

Reviewers T his 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 institu- tion 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 integrity of the process. We wish to thank the following individuals for their review of this workshop summary: CRYSTAL DURAN, Clinical Program Manager, Customer Experience, Cigna ELIZABETH HAHN, Associate Professor, Department of Medical Social Sciences, Northwestern University AILEEN KANTOR, Vice President, Marketing, Health Literacy Innovations SUSAN PISANO, Vice President of Communications, America’s Health Insurance Plans Although the reviewers listed above have provided many constructive comments and suggestions, they did not see the final draft of the work- shop summary before its release. The review of this workshop summary ix

x REVIEWERS was overseen by Georges Benjamin, American Public Health Association. Appointed by the National Research Council, he was responsible for mak- ing certain that an independent examination of this workshop summary 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.

Acknowledgments T he sponsors of the Institute of Medicine Roundtable on Health Lit- eracy made it possible to plan and conduct the workshop, Health Literacy and Numeracy. 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. Non-federal sponsorship was provided by the American College of Physicians Foundation; Amer- ica’s Health Insurance Plans; the California Dental Association; the East Bay Community Foundation (Kaiser Permanente); Eli Lilly and Company; Humana; Johnson & Johnson; Merck and Co., Inc.; the North Shore–Long Island Jewish Health System; and the UnitedHealth Group. The roundtable wishes to express its gratitude to the following speak- ers for their interesting and thoughtful presentations: Jessica Ancker, Andrea Apter, Terry Davis, Lynda Ginsburg, Marguerite Holloway, Robert Krughoff, Ellen Peters, Lynn Quincy, Michael Wolf, and Brian Zikmund- Fisher. The roundtable also wishes to extend its appreciation to the plan- ning committee members: Andrea Apter, Susan Pisano, Lynn Quincy, Rima Rudd, Steven Rush, and Winston Wong. xi

Contents 1 INTRODUCTION 1 2 OVERVIEW OF NUMERACY 3 What Is Numeracy?: It’s More Than Mathematics, 3 Numeracy and the Affordable Care Act: Opportunities and Challenges, 8 Discussion, 15 Is Numeracy More Difficult with Poor Health?: Evidence, Experience, and Possibilities, 20 Discussion, 24 References, 25 3 NUMERACY DEMANDS, ASSUMPTIONS, AND CHALLENGES FOR CONSUMERS 29 Overcoming Consumer Barriers to Shopping for Health Insurance, 29 Numeracy in Health Care: A Clinician’s Perspective, 32 Discussion, 39 References, 45 4 NUMERACY DEMANDS, ASSUMPTIONS, AND CHALLENGES FOR COMMUNICATORS 47 Numeracy and Health Journalism, 47 Issues and Challenges in the Era of Shared Decision Making: Explaining Risk and Uncertainty, 52 xiii

xiv CONTENTS Discussion, 60 References, 64 5 STRATEGIES FOR EFFECTIVE COMMUNICATION 67 Examples of Effective Display of Health Plan Information, 67 Why Are You Giving Me This Number?: Communicating Quantitative Information for Decision Making, 71 Effectively Communicating Medication Instructions, 75 Discussion, 80 References, 89 APPENDIXES A Numeracy and the Affordable Care Act: Opportunities and Challenges 91 B Meeting Agenda 137 C Speaker Biosketches 141

Boxes, Figures, and Tables BOXES 3-1 Some Tasks Involved in Managing a Chronic Disease, 32 3-2 Asthma Numeracy Questionnaire (ANQ), 36 5-1 Why Is It So Hard to Take Medication?, 76 FIGURES 3-1 Asthma Action Plan from the National Heart, Lung, and Blood Institute, 34 3-2 A matrix for simplifying patient–provider communication, 37 4-1 Judgment is affected by whether the part-to-whole relationship is visible, 56 4-2 Graphic representation of risk in a population, 56 4-3 Judgments are most accurate when only one dimension varies, 57 4-4 Three common types of graphics, 58 5-1 Can patients use this?: An example of information from an electronic health record, 74 5-2 Deconstruct the task: A medication self-management model, 77 5-3 Universal medication schedule, 79 xv

xvi BOXES, FIGURES, AND TABLES A-1 Data presentation approaches that facilitate informed decision making and the use of information in choice, 113 TABLES 2-1 Key Abilities and Estimated Proportion of Adults at Each Level of Quantitative Literacy, 10 2-2 Comparison of Tasks Based on Skill Level for Health Care Decisions, 13 A-1 Key Abilities and Estimated Proportion of Adults at Each Level of Quantitative Literacy, 94 A-2 Education-Based Numeracy Skills from Apter et al. (2008) and Emergent Decision-Based Numeracy Skills Adapted from Peters (2012), 99 A-3 Health Plan Selection: Example Tasks, 102 A-4 Treatment Selection: Example Tasks, 103 A-5 Understanding Medication Instructions: Example Tasks, 104 A-6 Summary of Recommended Strategies for Communicating with the Less Numerate, 114 Annex A-1 2009-2011 Census Bureau Data, 133 Annex A-2 2003 NAAL Quantitative Literacy Levels by Education, 134 Annex A-3 Proportion of Uninsured Adults at Each Quantitative Literacy Level, 134

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Although health literacy is commonly defined as an individual trait, it does not depend on the skills of individuals alone. Health literacy is the product of the interaction between individuals' capacities and the health literacy-related demands and complexities of the health care system. Specifically, the ability to understand, evaluate, and use numbers is important to making informed health care choices.

Health Literacy and Numeracy is the summary of a workshop convened by The Institute of Medicine Roundtable on Health Literacy in July 2013 to discuss topics related to numeracy, including the effects of ill health on cognitive capacity, issues with communication of health information to the public, and communicating numeric information for decision making. This report includes a paper commissioned by the Roundtable, "Numeracy and the Affordable Care Act: Opportunities and Challenges," that discusses research findings about people's numeracy skill levels; the kinds of numeracy skills that are needed to select a health plan, choose treatments, and understand medication instructions; and how providers should communicate with those with low numeracy skills. The paper was featured in the workshop and served as the basis of discussion.

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