HEALTH LITERACY, eHEALTH, and COMMUNICATION

PUTTING THE CONSUMER FIRST

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.
www.nap.edu



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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, 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 project was supported by contracts between the National Academy of Sci- ences and the Academy for Educational Development (Unnumbered Award); Affinity Health Plan (Unnumbered Award), Kaiser Permanente (Unnumbered Award); American Academy of Family Physicians (Unnumbered Award); Merck & Co., Inc. (Unnumbered Award); Pfizer Institute (Unnumbered Award); Depart- ment of Health and Human Services (N01-OD-4-2139, TO#148); GlaxoSmithKline (G050002912). 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: 978-0-309-12642-7 International Standard Book Number-10: 0-309-12642-8 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 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. Health Literacy, eHealth, and Communication: Putting the Consumer First: 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, 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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MEMbERS OF THE PLANNINg gROuP FOR THE WORkSHOP ON HEALTH LITERACy, eHEALTH, AND COMMuNICATION: PuTTINg THE CONSuMER FIRST CAROLyN COCOTAS, Director, Affinity Health Plan ARTHuR CuLbERT, Senior Advisor to the Missouri Foundation for Health JANET M. MARCHIbRODA, Chief Executive Officer of the eHealth Initiative and the eHealth Foundation RuTH PARkER, Associate Professor of Medicine, Emory University School of Medicine yOLANDA PARTIDA, Director, National Program Office, University of California, San Francisco, Fresno Center for Medical Education and Research JOSHuA SEIDMAN, President, Center for Information Therapy 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. 

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ROuNDTAbLE ON HEALTH LITERACy gEORgE ISHAM (Chair), Medical Director and Chief Health Officer, HealthPartners SHARON E. bARRETT, Association of Clinicians for the Underserved CAROLyN COCOTAS, Director, Affinity Health Plan MICHAEL L. DAVIS, Vice President, General Mills bARbARA A. DEbuONO, Senior Medical Director/Group Leader, Pfizer, Inc. DEbbIE FRITZ, Director, GlaxoSmithKline LINDA HARRIS, Acting Team Leader, Health Communication and eHealth Team, U.S. Department of Health and Human Services bETSy L. HuMPHREyS, Deputy Director, National Institutes of Health LINDA JOHNSTON-LLOyD, Senior Advisor, Health Resources and Services Administration, Center for Quality JEAN kRAuSE, Executive Vice President and CEO, American College of Physicians Foundation DENNIS MILNE, Vice President, Patient Education, American Heart Association RuTH PARkER, Emory University School of Medicine yOLANDA PARTIDA, Director, National Program Office, University of California, San Francisco, Fresno Center for Medical Education & Research kyu bAk LOuIS RHEE, Director, Office of Innovation and Program Coordination, National Center on Minority and Health Disparities, National Institutes of Health ZORI RODRIguEZ, Health Disparities Manager, American Academy of Family Physicians WILLIAM SMITH, Academy for Educational Development CAROL TEuTSCH, Director, Medical Services, Merck & Co. WINSTON F. WONg, Clinical Director, Community Benefit, Kaiser Permanente SAbRA WOOLLEy, National Cancer Institute ANTRONETTE yANCEy, Associate Professor of Health Services and Director, Doctorate in Public Health Program, University of California, School of Public Health 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. i

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Study Staff LyLA M. HERNANDEZ, Staff Director, Roundtable on Health Literacy kRISTINA SHuLkIN, Senior Project Assistant (until July 2008) ERIN RuSCH, Senior Project Assistant (from August 2008) ROSE MARIE MARTINEZ, Director, Board on Population Health and Public Health Practice HOPE R. HARE, Administrative Assistant ii

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Reviewers This report has been reviewed in draft form by persons 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 deliberative process. We wish to thank the following individuals for their review of this report: Don E. Detmer, American Medical Informatics Association Jessie gruman, Center for the Advancement of Health Ida Sim, Center for Clinical and Translational Informatics, University of California, San Francisco School of Medicine Maria E. White, Office of Equal Opportunity and Civil Rights, Health Resources and Services Administration, U.S. Department of Health and Human Services Although the reviewers listed above have provided many construc- tive comments and suggestions, they were not asked to endorse the con- clusions or recommendations, nor did they see the final draft of the report before its release. The review of this report was overseen by Hugh Tilson, Public Health Leadership Program, University of North Carolina School ix

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x RevieWeRS of Public Health. Appointed by the Institute of Medicine, he was respon- sible for making certain that 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 author and the institution.

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Acknowledgments Without the support of the sponsors of the Institute of Medicine Roundtable on Health Literacy, it would not have been possible to plan and conduct the workshop, Health Literacy, eHealth, and Communi- cation, which this report summarizes. Sponsors from the Department of Health and Human Services are the Health Resources and Services Administration, the Office of Disease Prevention and Health Promotion, and the National Cancer Institute. Non-federal sponsorship was provided by the Academy for Education Development, Affinity Health Plan, the American Academy of Family Physicians Foundation, GlaxoSmithKline, Kaiser Permanente, Merck & Co., Inc., and Pfizer, Inc. The Roundtable wishes to express its gratitude to the expert speakers whose presentations provided an overview of eHealth and communica- tion challenges as well as describing consumer-oriented eHealth sys- tems and guides for developing successful health information technology. These speakers were Cindy Brach, Dawn Gauthier, Rita Kukafka, Janet Marchibroda, Kim Nazi, Cameron D. Norman, Anthony Rodgers, Joshua Seidman, and Cynthia Solomon. Thanks also go to Charles Friedman and Linda Harris for their presentations on health literacy, health information technology, and Healthy People 2020. The Roundtable wishes to thank the planning committee members for their work in putting together an excellent workshop agenda. Members of the planning committee were Carolyn Cocotas, Arthur Culbert, Janet Marchibroda, Ruth Parker, Yolanda Partida, and Joshua Seidman. Thanks also go to George Isham for moderating the entire workshop. xi

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Contents 1 INTRODUCTION 1 2 OVERVIEW OF ISSUES 3 Overview of eHealth, 3 Skills Essential for eHealth, 10 Strategies for Raising Health Literacy in Arizona Medicaid Members: New Approaches for State Medicaid “Health Knowledge Builders,” 15 Discussion, 21 3 OUTCOMES AND CHALLENGES OF eHEALTH APPROACHES: PANEL 1 29 Internet Approaches for eHealth in Low-Literacy and Limited- English-Proficiency Populations, 29 My HealtheVet, 36 Discussion, 40 4 OUTCOMES AND CHALLENGES OF eHEALTH APPROACHES: PANEL 2 47 Using Technology to Improve Migrant Health Care Delivery, 47 A User-Centered Personal Health Record: The Design and Development of the Shared Care Plan, 54 Observations from the Exam Room: Patient-Centered HIT Implementation in Diverse Practice Settings, 63 Discussion, 67 xiii

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xi ContentS 5 EMERGING TOOLS AND STRATEGIES 73 A Guide for Developing and Purchasing Successful Health Information Technology, 73 Discussion, 77 Health Literacy, Health Information Technology, and Healthy People 2020, 78 Discussion, 80 6 CONCLUDING DISCUSSION 85 REFERENCES 89 APPENDIXES A GLOSSARY OF TERMS 95 B WORKSHOP AGENDA 101 C WORKSHOP SPEAKER BIOSKETCHES 105 TAbLES 2-1 Seven-Stage Framework for Assessing and Tracking the Development of Health Information Exchange Initiatives at the State and Local Levels, 8 2-2 Snapshot of Web Utilization Trends/Data January 2008 to February 2008, 19 3-1 Health Information Seeking by Current Internet Use, 31 3-2 Comparison of Principles of Web 2.0 and Web 1.0, 34 FIguRES 2-1 eHealth infrastructure of Medicaid system transformation, 17 3-1 Trust in sources of health information, 32 4-1 Patient dashboard, 49 4-2 Task, 58 4-3 Care team members, 60 4-4 Add diagnosis, 60 5-1 Simple design, 75