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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Page xiii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Page xvii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Page xviii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Developing Health Literacy Skills in Children and Youth PROCEEDINGS OF A WORKSHOP Alexis Wojtowicz, Rapporteur Roundtable on Health Literacy Board on Population Health and Public Health Practice Health and Medicine Division PREPUBLICATION COPY—Uncorrected Proofs

THE NATIONAL ACADEMIES PRESS  500 Fifth Street, NW  Washington, DC 20001 This activity was supported by contracts between the National Academy of Sciences and AbbVie Inc.; California Dental Association; East Bay Community Foundation (Kaiser Permanente); Eli Lilly and Company; Health Literacy Media; Health ­ iteracy L Partners; Health Resources and Services Administration (HHSH25034011T); Merck Sharp & Dohme Corp.; National Library of Medicine; Northwell Health; Office of Disease Prevention and Health Promotion (HHSP23337043); Pfizer Inc.; and UnitedHealth Group. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project. International Standard Book Number-13: 978-0-309-XXXXX-X International Standard Book Number-10: 0-309-XXXXX-X Digital Object Identifier: https://doi.org/10.17226/25888 Additional copies of this publication are available 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. Copyright 2020 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2020. ­ Developing health literacy skills in children and youth: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/25888. PREPUBLICATION COPY—Uncorrected Proofs

The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president. The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. John L. Anderson is president. The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president. The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine. Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org. PREPUBLICATION COPY—Uncorrected Proofs

Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process, and it represents the position of the National Academies on the statement of task. Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies. For information about other products and activities of the National Academies, please visit www.nationalacademies.org/about/whatwedo. PREPUBLICATION COPY—Uncorrected Proofs

PLANNING COMMITTEE ON DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH1 MARIN ALLEN, Deputy Associate Director for Communications and Public Liaison and Director of Public Information, Office of the Director, National Institutes of Health (retired) MARINA ARVANITIS, Assistant Professor of Medicine, Feinberg School of Medicine, Northwestern University ELAINE AULD, Chief Executive Officer, Society for Public Health Education JENNIFER DILLAHA, Medical Director for Immunizations, Medical Advisor, Health Literacy and Communication, Arkansas Department of Health JENNIFER MANGANELLO, Professor, University at Albany School of Public Health, State University of New York TERRI ANN PARNELL, Principal and Founder, Health Literacy Partners EARNESTINE WILLIS, Kellner Professor in Pediatrics and Director, Center for the Advancement of Underserved Children, Medical College of Wisconsin 1  The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speak- ers. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteur and the institution. v PREPUBLICATION COPY—Uncorrected Proofs

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ROUNDTABLE ON HEALTH LITERACY1 LAWRENCE G. SMITH (Chair), Dean, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell; Executive Vice President and Physician-in-Chief, Northwell Health ANNLOUISE R. ASSAF, Patient Health Activation Expert and Global Medical Impact Senior Director, Pfizer Worldwide Medical and Safety; Adjunct Professor, Brown University School of Public Health SUZANNE BAKKEN, Alumni Professor of Nursing and Professor of Biomedical Informatics, Columbia University GEMIRALD DAUS, Public Health Analyst, Office of Health Equity, Health Resources and Services Administration TERRY C. DAVIS, Professor of Medicine and Pediatrics, Louisiana State University Health Sciences Center—Shreveport JENNIFER DILLAHA, Medical Director for Immunizations, Medical Advisor, Health Literacy and Communication, Arkansas Department of Health JAMES DUHIG, Head, Risk Communication and Behavioral Systems, Office of Patient Safety, AbbVie Inc. ALICIA FERNÁNDEZ, Professor of Medicine, Director, UCSF Latinx Center of Excellence, University of California, San Francisco, Zuckerberg San Francisco General Hospital LISA FITZPATRICK, Senior Medical Director, DC Department of Health Care Finance, and Professorial Lecturer, The George Washington Milken Institute of Public Health LORI K. HALL, Director of Health Literacy, Global Medical Strategy and Operations, Eli Lilly and Company LINDA HARRIS, Director, Division of Health Communication and eHealth Team, Office of Disease Prevention and Health Promotion, U.S. Department of Health and Human Services NICOLE HOLLAND, Assistant Professor and Director of Health Communication, Education, and Promotion, Tufts University School of Dental Medicine ELLEN MARKMAN, Lewis M. Terman Professor of Psychology, Stanford University MICHAEL McKEE, Associate Professor of Family Medicine, University of Michigan Medical School LAURIE MYERS, Global Health Literacy Director, Merck Sharp & Dohme Corp. 1  The National Academies of Sciences, Engineering, and Medicine’s forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteur and the institution. vii PREPUBLICATION COPY—Uncorrected Proofs

CATINA O’LEARY, President and Chief Executive Officer, Health Literacy Media MICHAEL PAASCHE-ORLOW, Professor of Medicine, Boston University School of Medicine TERRI ANN PARNELL, Principal and Founder, Health Literacy Partners LINDSEY A. ROBINSON, Diplomate, ABPD, California Dental Association STEVEN RUSH, Director, Health Literacy Innovations, UnitedHealth Group OLAYINKA SHIYANBOLA, Assistant Professor, Division of Social and Administrative Sciences, University of Wisconsin–Madison School of Pharmacy VANESSA SIMONDS, Associate Professor, Community Health, Montana State University CHRISTOPHER R. TRUDEAU, Associate Professor, University of Arkansas for Medical Sciences EARNESTINE WILLIS, Kellner Professor in Pediatrics and Director, Center for the Advancement of Underserved Children, Medical College of Wisconsin AMANDA J. WILSON, Head, Engagement and Training, National Library of Medicine MICHAEL S. WOLF, Professor, Medicine and Learning Sciences, Associate Division Chief, Research Division of General Internal Medicine, Feinberg School of Medicine, Northwestern University WINSTON F. WONG, Medical Director, Disparities Improvement and Quality Initiatives, Kaiser Permanente Health and Medicine Division Staff MELISSA G. FRENCH, Senior Program Officer (until January 2020) ALEXIS WOJTOWICZ, Associate Program Officer ANNA W. MARTIN, Administrative Assistant (until March 2020) ROSE MARIE MARTINEZ, Senior Board Director, Board on Population Health and Public Health Practice viii PREPUBLICATION COPY—Uncorrected Proofs

Reviewers This Proceedings of a Workshop was reviewed in draft form by indi- viduals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical com- ments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process. We thank the following individuals for their review of this proceedings: DESIREE DE LA TORRE, Children’s National Hospital BONNI C. HODGES, State University of New York at Cortland ALICE HOROWITZ, University of Maryland KAREN C. LEE, National Institutes of Health Although the reviewers listed above provided many constructive com- ments and suggestions, they were not asked to endorse the content of the proceedings nor did they see the final draft before its release. The review of this proceedings was overseen by CLAIRE D. BRINDIS, University of California, San Francisco. She was responsible for making certain that an independent examination of this proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteur and the National Academies. ix PREPUBLICATION COPY—Uncorrected Proofs

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Acknowledgments The sponsors of the Roundtable on Health Literacy made it possible to plan and conduct the workshop Developing Health Literacy Skills in Children and Youth, which this proceedings summarizes. Federal sponsors from the U.S. Department of Health and Human Services are the Health Resources and Services Administration; National Library of Medicine; and Office of Disease Prevention and Health Promotion. Nonfederal sponsor- ship was provided by AbbVie Inc.; California Dental Association; East Bay Community Foundation (Kaiser Permanente); Eli Lilly and Company; Health Literacy Media; Health Literacy Partners; Merck Sharpe & Dohme Corp.; Northwell Health; Pfizer Inc.; and UnitedHealth Group. The workshop presentations were interesting and stimulated much discussion, and the Roundtable on Health Literacy would like to thank each of the speakers and moderators for their time and effort. Speakers and moderators were Marin Allen, Trina Anglin, Marina Arvanitis, Elaine Auld, Deena Chisolm, Sneha Dave, Steven Hoffman, Lloyd Kolbe, Hannah Lane, ­ Jennifer Manganello, Laura Noonan, Gail Nunlee-Bland, Rory Parnell, Terri Ann Parnell, Vanessa Simonds, Lawrence Smith, Earnestine Willis, and H. Shonna Yin. xi PREPUBLICATION COPY—Uncorrected Proofs

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Contents ACRONYMS AND ABBREVIATIONS xvii 1 INTRODUCTION 1 References, 2 2 SETTING THE STAGE 5 Health Literacy in Youth: Milestones and Development, 5 Discussion, 13 References, 16 3 PLACES: WHERE YOUTH CONFRONT HEALTH LITERACY CHALLENGES AND DEVELOP SKILLS 19 Health Literacy in Schools, 19 Health Care Organizations, 24 Health Literacy and Youth Online, 30 Discussion, 34 References, 37 4 PEOPLE: RESEARCH AND LESSONS FROM ADDRESSING SPECIFIC POPULATIONS’ HEALTH LITERACY NEEDS 41 Health Literacy for Youth with Special Health Care Needs, 41 Communicating with a High-Risk Young Adult Population: W.E.I.G.H.T. Study, 48 Health Literacy in Young Adults Aging Out of Foster Care, 51 xiii PREPUBLICATION COPY—Uncorrected Proofs

xiv CONTENTS Discussion, 55 References, 59 5 PARTNERSHIPS AND COMMUNITY: WORKING WITH YOUTH AND THEIR COMMUNITIES TO ADDRESS THEIR HEALTH LITERACY NEEDS 61 Developing Youth Participatory Research, 61 Working with Parents, Students, and Community Organizations to Implement Health Literacy in a School, 65 Finding Community and Developing Self-Advocacy Skills, 68 Discussion, 70 Reference, 73 6 REFLECTIONS ON THE WORKSHOP 75 Prepared Remarks, 75 Discussion, 75 References, 82 APPENDIXES A Workshop Agenda 83 B Biographical Sketches of Workshop Moderators, Speakers, and Panelists 87 PREPUBLICATION COPY—Uncorrected Proofs

Boxes and Figures BOXES 1-1 Statement of Task, 3 2-1 Questions and Considerations for Future Research on Developing Health Literacy Skills in Children and Youth, 14 3-1 Areas for Future Research as Identified by Laura Noonan, 29 3-2 Areas for Future Research as Identified by Jennifer Manganello, 33 4-1 Key Takeaways Identified by Deena Chisolm, 48 4-2 Patient Activation Measure (PAM-10), 49 4-3 Compounding Problems Associated with Health Literacy Among Young Adults Formerly in Foster Care, 52 4-4 Key Practical and Research Highlights Identified by Steven ­Hoffman, 54 5-1 Best Practices for Youth Participatory Research Identified by H ­ annah Lane, 65 6-1 Remarks by Trina Anglin, 76 6-2 Remarks by Vanessa Simonds, 78 6-3 Remarks by Earnestine Willis, 79 xv PREPUBLICATION COPY—Uncorrected Proofs

xvi BOXES AND FIGURES FIGURES 3-1 The working relationship between child literacy and child health outcomes, 26 4-1 Health care transition measures among teens and young adults in a cross-sectional study, 43 4-2 Self-reported confidence in e-health literacy skills compared with previous assessment of general health literacy skills among teens and young adults in a cross-sectional study, 46 4-3 Self-reported assessment of health literacy skills among study p ­ articipants by race, 47 5-1 Health literacy partnership to close the access gap, 66 PREPUBLICATION COPY—Uncorrected Proofs

Acronyms and Abbreviations ACA Patient Protection and Affordable Care Act ACO accountable care organization ADAPT Action Plan Targeting: T2D Prevention BMI body mass index CBO community-based organization CCMC Cohen Children’s Medical Center CCNY Child Center of New York CDC Centers for Disease Control and Prevention ECE early childhood education ED U.S. Department of Education eHEALS eHealth Literacy Scale HAS Health Advocacy Summit HHS U.S. Department of Health and Human Services HRSA Health Resources and Services Administration IEP individualized education program IOM Institute of Medicine IRB Institutional Review Board KSS Kids SIPsmartER xvii PREPUBLICATION COPY—Uncorrected Proofs

xviii ACRONYMS AND ABBREVIATIONS LTA less than adequate NHES National Health Education Standards NHW non-Hispanic white NIH National Institutes of Health NIMHD National Institute of Minority Health and Health Disparities NVS Newest Vital Sign PAL Preparing for Adult Living PAM Patient Activation Measure Pre-K prekindergarten QUICCC–R Questionnaire for Identifying Children with Chronic Conditions–Revised SHCN special health care needs SOPHE Society for Public Health Education SSB sugar-sweetened beverage STEM science, technology, engineering, and mathematics WSCC Whole School, Whole Community, Whole Child PREPUBLICATION COPY—Uncorrected Proofs

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Young people develop health literacy skills in a variety of environments, facing critical thinking challenges about their health from school, home and family life, peers and social life, and online. To explore the development of health literacy skills in youth, the Roundtable on Health Literacy convened a workshop on November 19, 2019, in Washington, DC. Presenters at the workshop discussed factors relating to health literacy skills and ways to further develop those skills among youth from early childhood to young adulthood. This publication summarizes the presentation and discussion of the workshop.

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