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
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
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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
International Standard Book Number 10: 0-309-44732-1
Digital Object Identifier: 10.17226/23592
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Copyright 2016 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. 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.
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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.
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
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.
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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.
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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.
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Contents
Organization of the Proceedings
3 THE INTERSECTION OF HEALTH LITERACY AND PRECISION MEDICINE
Precision Medicine and Its Evolution
Health Literacy and Its Evolution
The Precision Medicine Initiative and Why Health Literacy Matters
4 HEALTH LITERACY IN PRECISION MEDICINE RESEARCH
Health Literacy, Informed Consent, and Communicating with Research Subjects
Making Decisions About Reporting Results
5 COMMUNICATING RISK AND UNCERTAINTY IN THE CLINICAL SETTING
Clinical Communication to Increase Patient Understanding
The Challenge of Low Health Literacy When Communicating Risk in the Context of Precision Medicine
Reactions to the Presentations
6 COMMUNICATING WITH THE PUBLIC
A Nursing Perspective on Health Literacy and Precision Medicine
Precision Medicine and Social Media
Reactions to the Presentations
B Biographical Sketches of Workshop Speakers, Moderators, and Reactors
Box, Figures, and Tables
BOX
2-1 Proposed Genetics Content for Introductory Biology Courses for Non-Science Majors
FIGURES
4-2 Preferred design for conveying information about blood pressure
4-3 An infographic to display results and actions to change those results
4-4 The EnTICE3 Framework and sample infographic
4-5 The continuum of community engagement in research
4-6 Survey results on the familiarity and importance of precision medicine
4-7 Vanderbilt’s PMI Direct Volunteers Pilot Preparatory/Prototyping Initiative
5-1 Framework for understanding oral literacy
5-2 The choice of information format depends on the communication purpose
5-3 Survival curves require expertise or training to interpret correctly
5-4 Icon arrays are better accepted by patients than by experts
6-1 AFIB Town, a patient portal designed to provide information on atrial fibrillation
6-2 A webpage with links to resources related to a specific gene variant associated with autism
TABLES
4-1 Benefits That Should Be Disclosed from Secondary Findings of Genome Sequencing
4-2 Risks That Should Be Disclosed from Secondary Findings of Genome Sequencing
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 |
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