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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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Relevance of Health Literacy
to Precision Medicine

Proceedings of a Workshop

Joe Alper, Rapporteur

Roundtable on Health Literacy

Board on Population Health and Public Health Practice

Health and Medicine Division

images

THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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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.; the Aetna Foundation; the Agency for Healthcare Research and Quality (HHSP23337024); American Dental Association; Bristol-Myers Squibb; East Bay Community Foundation (Kaiser Permanente); Eli Lilly and Company; Health Literacy Missouri; Health Literacy Partners; Health Resources and Services Administration (HHSH25034011T); Humana; Institute for Healthcare Advancement; Merck & Co., Inc.; National Institutes of Health (HHSN26300054); National Library of Medicine; Northwell Health; Office of Disease Prevention and Health Promotion (HHSP23337043); 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: 978-0-309-44732-4
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Digital Object Identifier: 10.17226/23592

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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of health literacy to precision medicine: Proceedings of a workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

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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.

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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.

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Learn more about the National Academies of Sciences, Engineering, and Medicine at www.national-academies.org.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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Reports document the evidence-based consensus of an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and committee deliberations. Reports are peer reviewed and are approved by the National Academies of Sciences, Engineering, and Medicine.

Proceedings chronicle the presentations and discussions at a workshop, symposium, or other convening event. The statements and opinions contained in proceedings are those of the participants and have not been endorsed by other participants, the planning committee, or the National Academies of Sciences, Engineering, and Medicine.

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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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PLANNING COMMITTEE ON HEALTH LITERACY AND PRECISION MEDICINE: AN IMPORTANT PARTNERSHIP1,2

SUZANNE BAKKEN, Alumni Professor of Nursing and Professor of Biomedical Informatics, Columbia University

ELLEN W. CLAYTON, Craig-Weaver Professor of Pediatrics and Professor of Law, Vanderbilt University

W. GREGORY FEERO, Assistant Professor of Community and Family Medicine and Research Director, Maine-Dartmouth Family Medicine Residency

SPERO M. MANSON, Distinguished Professor of Public Health and Psychiatry and Associate Dean of Research, Colorado School of Public Health, University of Colorado Denver Anschutz Medical Center

RUTH M. PARKER, Professor of Medicine, Pediatrics, and Public Health, Emory University School of Medicine

CATHERINE A. WICKLUND, Associate Professor in Obstetrics and Gynecology–Clinical Genetics, Northwestern University Feinberg School of Medicine

___________________

1 The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteur and the institution.

2 This text was revised after release to reflect the correct planning committee name.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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ROUNDTABLE ON HEALTH LITERACY1

BERNARD ROSOF (Chair), Chief Executive Officer, Quality in Healthcare Advisory Group, LLC

MARIN P. ALLEN, Deputy Associate Director for Communications and Public Liaison and Director of Public Information, National Institutes of Health

WILMA ALVARADO-LITTLE, Principal and Founder, Alvarado-Little Consulting, LLC

SUZANNE BAKKEN, Alumni Professor of Nursing and Professor of Biomedical Informatics, Columbia University

CINDY BRACH, Senior Health Policy Researcher, Agency for Healthcare Research and Quality

GEM DAUS, Public Health Analyst, Office of Health Equity, Office of Special Health Affiars, Health Resources and Services Administration

TERRY DAVIS, Professor of Medicine and Pediatrics, Louisiana State University Health Sciences Center

CHRISTOPHER DEZII, Director, Healthcare Quality and Performance Measures, Bristol-Myers Squibb

JENNIFER DILLAHA, Medical Director for Immunizations, Medical Advisor, Health Literacy and Communication, Arkansas Department of Health

JAMES (JAY) DUHIG, Head, Risk Communication and Behavioral Systems, Office of Patient Safety, AbbVie Inc.

ALICIA FERNANDEZ, Professor of Clinical Medicine, Department of Medicine, Division of General Internal Medicine, University of California, San Francisco

LAURIE FRANCIS, Senior Director of Clinic Operations and Quality, Oregon Primary Care Association

LORI HALL, Advisor–Health Literacy, U.S. Medical Staff, Eli Lilly and Company

LINDA HARRIS, Director, Division of Health Communication and ehealth Team, U.S. Department of Health and Human Services

BETSY L. HUMPHREYS, Acting Director, National Library of Medicine

MARGARET LOVELAND, Senior Director, Global Medical Affairs, Merck & Co., Inc.

LAURIE MYERS, Global Health Literacy Director, Merck & Co., Inc.

CATINA O’LEARY, President and Chief Executive Officer, Health Literacy Missouri

___________________

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.

Page viii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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MARYLYNN OSTROWSKI, Executive Director, Aetna Foundation

MICHAEL PAASCHE-ORLOW, Associate Professor of Medicine, Boston University School of Medicine

TERRI ANN PARNELL, Principal and Founder, Health Literacy Partners, LLC

KIM PARSON, Strategic Consultant, Proactive Care Strategies, Humana

KAVITA PATEL, Managing Director for Clinical Transformation and Delivery, The Brookings Institute

ANDREW PLEASANT, Senior Director for Health Literacy and Research, Canyon Ranch Institute

LINDSEY A. ROBINSON, Thirteenth District Trustee, American Dental Association

STACEY ROSEN, Associate Professor of Cardiology, Hofstra Northwell School of Medicine at Hofstra University and Vice President, Women’s Health, The Katz Institute for Women’s Health

RIMA RUDD, Senior Lecturer on Health Literacy, Education, and Policy, Harvard School of Public Health

STEVEN RUSH, Director, Health Literacy Innovations, UnitedHealth Group

PAUL M. SCHYVE, Senior Advisor, Healthcare Improvement, The Joint Commission

MICHAEL VILLAIRE, Chief Executive Officer, Institute for Healthcare Advancement

EARNESTINE WILLIS, Kellner Professor in Pediatrics, Medical College of Wisconsin

MICHAEL WOLF, Professor, Medicine and Learning Sciences, Associate Division Chief, Research Division of General Internal Medicine, Feinberg School of Medicine, Northwestern University

WINSTON WONG, Medical Director, Community Benefit, Disparities Improvement, and Quality Initiatives, Kaiser Permanente

Consultant

RUTH PARKER, Professor of Medicine, Pediatrics, and Public Health, Emory University School of Medicine

Health and Medicine Division Staff

LYLA HERNANDEZ, Senior Program Officer

MELISSA FRENCH, Program Officer

EMILY VOLLBRECHT, Senior Program Assistant

ROSE MARIE MARTINEZ, Senior Board Director, Board on Population Health and Public Health Practice

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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Reviewers

This Proceedings of a Workshop has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published Proceedings of a Workshop as sound as possible and to ensure that this Proceedings of a Workshop meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain privileged to protect the integrity of the process. We wish to thank the following individuals for their review of this Proceedings:

CHRISTOPHER M. DEZII, Bristol-Myers Squibb Company

CARLA L. EASTER, National Institutes of Health

RIMA E. RUDD, Harvard University

CARA TENNENBAUM, Food and Drug Administration

Although the reviewers listed above have provided many constructive comments and suggestions, they did not see the final draft of the Proceedings of a Workshop before its release. The review of this Proceedings of a Workshop was overseen by Hugh Tilson, University of North Carolina at Chapel Hill. He was responsible for making certain that an independent examination of this Proceedings of a Workshop was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of the Proceedings of a Workshop rests entirely with the rapporteur and the institution.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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In Memoriam

This Proceedings of a Workshop is dedicated to Dr. Margaret Loveland, an accomplished physician and advocate in the field of health literacy, a valued member of the Roundtable on Health Literacy, and an irreplaceable colleague and friend.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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Page xiii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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Acknowledgments

We are grateful to the sponsors of the National Academies of Sciences, Engineering, and Medicine’s Roundtable on Health Literacy who made it possible to plan and conduct the workshop on the relevance of health literacy to precision medicine, which this publication summarizes. Federal sponsors included the Agency for Healthcare Research and Quality, Health Resources and Services Administration, National Institutes of Health, National Library of Medicine, and Office of Disease Prevention and Health Promotion at the U.S. Department of Health and Human Services. Nonfederal sponsorship was provided AbbVie Inc., by the Aetna Foundation; American Dental Association; Bristol-Myers Squibb; East Bay Community Foundation (Kaiser Permanente); Eli Lilly and Company; Health Literacy Missouri; Health Literacy Partners; Humana; Institute for Healthcare Advancement; Merck & Co., Inc.; Northwell Health; and UnitedHealth Group.

The workshop presentations and reactions to those presentations were both interesting and stimulating, and we would like to thank each of the speakers and panel reactors for their time and effort. Speakers and reactors were, in alphabetical order, Marin P. Allen, Jessica Ancker, Paul S. Appelbaum, Suzanne Bakken, Terry Davis, Jennifer Dillaha, Carla Easter, William Elwood, Lori Erby, Chris Gunter, Kathleen Hickey, Joseph D. McInerney, Benjamin Solomon, Sara Van Driest, Catherine Wicklund, Consuelo Wilkins, and Michael S. Wolf.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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Page xviii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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Acronyms and Abbreviations

AAAS

American Association for the Advancement of Science

CBPR

community-based participatory research

CDRN

clinical data research network

EnTICE3

Electronic Tailored Infographics for Community Engagement, Education, and Empowerment

HIPAA

Health Insurance Portability and Accountability Act

ICD

implantable cardioverter–defibrillator

IRB

institutional review board

NHGRI

National Human Genome Research Institute

NIH

National Institutes of Health

NLM

National Library of Medicine

OBSSR

NIH Office of Behavioral and Social Sciences Research

PMI

Precision Medicine Initiative

WICER

Washington Heights/Inwood Informatics Infrastructure for Comparative Effectiveness Research

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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On January 20, 2015, President Obama announced the Precision Medicine Initiative (PMI) in his State of the Union address. The PMI, by developing new approaches for detecting, measuring, and analyzing a wide range of biomedical information including molecular, genomic, cellular, clinical, behavioral, physiological, and environmental parameters, is intended to enable a new era of medicine in which researchers, providers, and patients work together to develop individualized care. Part of this effort included the creation of a national, large-scale research participant group, or cohort. The PMI Cohort Program is aimed at extending precision medicine to many diseases, including both rare and common diseases such as diabetes, heart disease, Alzheimer’s disease, obesity, and mental illnesses such as depression, bipolar disorder, and schizophrenia, by building a national research cohort of 1 million or more U.S. participants.

An important challenge to assembling the PMI Cohort will be to reach individuals who are socioeconomically disadvantaged. Individuals who are socioeconomically disadvantaged have lower health literacy; often belong to racial, ethnic, and minority communities; and are often less likely to participate in research studies and biorepositories. To explore possible strategies and messaging designs, the Roundtable on Health Literacy formed an ad hoc committee charged with planning and conducting a 1-day public workshop on the intersection of health literacy and precision medicine. The workshop participants discussed a variety of topics including an overview of precision medicine and its potential, the relevance of health literacy to the success of precision medicine efforts, and perspectives and understanding of different groups, such as health care providers, consumers, and insurers. This publication summarizes the presentations and discussions from the workshop.

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