HEALTH LITERACY
AND CONSUMER-FACING
TECHNOLOGY
WORKSHOP SUMMARY
Joe Alper, Rapporteur
Roundtable on Health Literacy
Board on Population Health and Public Health Practice
Institute of Medicine
THE NATIONAL ACADEMIES PRESS
Washington, D.C.
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001
This activity was supported by contracts between the National Academy of Sciences and the Aetna Foundation; the Agency for Healthcare Research and Quality (HHSP233200900537P); Bristol-Myers Squibb; California Dental Association; East Bay Community Foundation (Kaiser Permanente); Eli Lilly and Company; Health Literacy Missouri; Health Literacy Partners; Health Resources and Services Administration (HHSH25034004T); Humana; Institute for Healthcare Advancement; Merck & Co., Inc.; National Institutes of Health; North Shore–Long Island Jewish Health System; Office of Disease Prevention and Health Promotion; and UnitedHealth Group. The views presented in this publication do not necessarily reflect the views of the organizations or agencies that provided support for the activity.
International Standard Book Number-13: 978-0-309-37690-7
International Standard Book Number-10: 0-309-37690-4
DOI: 10.17226/21781
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.
Copyright 2015 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. 2015. Health literacy and consumer-facing technology: Workshop summary. Washington, DC: The National Academies Press.
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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. C. D. Mote, Jr., 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.
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Learn more about the National Academies of Sciences, Engineering, and Medicine at www.national-academies.org.
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PLANNING COMMITTEE ON HEALTH LITERACY
AND CONSUMER-FACING TECHNOLOGY1
SUZANNE BAKKEN, Alumni Professor of Nursing and Professor of Biomedical Informatics, Columbia University School of Nursing
GILLIAN CHRISTIE, Health Innovation Analyst, The Vitality Institute
GARTH GRAHAM, President, Aetna Foundation
LINDA HARRIS, Division Director, Health Communication and eHealth Team, U.S. Department of Health and Human Services
PAMELA JEFFRIES, Vice Provost for Digital Initiatives, Johns Hopkins University
ANDREW PLEASANT, Senior Director for Health Literacy and Research, Canyon Ranch Institute
TED VICKEY, Founder and President, FitWell, Inc.
_______________
1 Institute of Medicine 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 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, 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 Company
JENNIFER DILLAHA, Medical Director for Immunizations, Medical Advisor, Health Literacy and Communication, Arkansas Department of Health
ALICIA FERNANDEZ, Professor of Clinical Medicine, University of California, San Francisco
LAURIE FRANCIS, Senior Director of Clinic Operations and Quality, Oregon Primary Care Association
GARTH GRAHAM, President, Aetna Founation
LORI HALL, Consultant, Health Education, Eli Lilly and Company
LINDA HARRIS, Division Director, Health Communication and eHealth Team, U.S. Department of Health and Human Services
BETSY L. HUMPHREYS, Deputy Director, National Library of Medicine
MARGARET LOVELAND, Senior Director, Global Medical Affairs, Merck & Co.
LAURIE MYERS, Leader of Health Literacy Strategy, Merck & Co.
CATINA O’LEARY, President and Chief Executive Officer, Health Literacy Missouri
MICHAEL PAASCHE-ORLOW, Associate Professor of Medicine, Boston University School of Medicine
_______________
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.
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 and Vice President, Women’s Health, The Katz Institute for Women’s Health, Hofstra North Shore–Long Island Jewish School of Medicine
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
IOM Staff
LYLA M. HERNANDEZ, Senior Program Officer
MELISSA FRENCH, Associate Program Officer
ANDREW LEMERISE, Research Associate
ANGELA MARTIN, Senior Program Assistant (through April 3, 2015)
EMILY VOLLBRECHT, Senior Program Assistant (April 6, 2015, to present)
ROSE MARIE MARTINEZ, Director, Board on Population Health and Public Health Practice
Reviewers
This workshop summary 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 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:
MATT KREUTER, The Brown School, Washington University in St. Louis
SYDNEE LOGAN, U.S. Food and Drug Administration
JOSUHA SEIDMAN, Avalere Health
DAVID C. TORRES, MAXIMUS
Although the reviewers listed above have provided many constructive comments and suggestions, they did not see the final draft of the workshop summary before its release. The review of this workshop summary was overseen by Ned Calogne, The Colorado Trust. He was responsible for making 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.
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Acknowledgments
We are grateful to the sponsors of the Institute of Medicine Roundtable on Health Literacy who made it possible to plan and conduct the workshop on health literacy and consumer-facing technology, which this report summarizes. Sponsors from the U.S. Department of Health and Human Services are the Agency for Healthcare Research and Quality, Health Resources and Services Administration, National Institutes of Health, and Office of Disease Prevention and Health Promotion. Non-federal sponsorship was provided by the Aetna Foundation; Bristol-Myers Squibb; California Dental Association; East Bay Community Foundation (Kaiser Permanente); Eli Lilly and Company; Health Literacy Missouri; Health Literacy Partners; Humana; Institute for Healthcare Advancement; Merck & Co., Inc.; North Shore–Long Island Jewish Health System; and UnitedHealth Group.
The workshop presentations were extremely interesting and stimulating and we would like to thank each of the speakers for their time and effort. Speakers are Patricia Dykes, Read Holman, Dean Hovey, Elizabeth Jordan, Katherine Kim, Alex Krist, Lana Moriarty, Catina O’Leary, Alison Rein, Lygeia Ricciardi, Rebecca Schnall, and Winston Wong. Thanks also go to the excellent moderators Suzanne Bakken, Pamela Jeffries, and Bernard Rosof.
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Contents
2 CONSUMER-FACING TECHNOLOGY: WHAT IS IT AND WHAT ARE THE ISSUES?
3 HEALTH LITERATE DIGITAL DESIGN AND STRATEGIES
Design Specification for Apps: A Case Study
The Federal Digital Strategy and Health Literacy
Reactions to the Panel Presentations
4 CATALYZING WIDESPREAD INFORMED ENGAGEMENT
Consumer-Generated Health Information: Provider “Readiness,” Attitudes, and Skills
Incentives for Consumer Engagement
Building a Fabric of Trust: Ethical, Legal, and Social Issues in the Era of eHealth and Big Data
Box, Figures, and Table
BOX
FIGURES
3-1 An information systems research framework used to design an end-user focused app
ACP | American College of Physicians |
AHRQ | Agency for Healthcare Research and Quality |
CDC | Centers for Disease Control and Prevention |
CHIP | Children’s Health Insurance Program |
EHR | electronic health record |
FDA | U.S. Food and Drug Administration |
FERPA | Family Educational Rights and Privacy Act |
GPS | global positioning system |
HHS | U.S. Department of Health and Human Services |
HIPAA | Health Insurance Portability and Accountability Act |
HITECH | Health Information Technology for Economic and Clinical Health |
HRSA | Health Resources and Services Administration |
IDEA | Innovation, Design, Entrepreneurship and Action Lab |
IOM | Institute of Medicine |
LIJ | Long Island Jewish |
NCAI | National Congress of American Indians |
NCI | National Cancer Institute |
NIH | National Institutes of Health |
NLM | National Library of Medicine |
ONC | Office of the National Coordinator for Health Information Technology |
PCORI | Patient-Centered Outcomes Research Institute |
PROSPECT | Promoting Respect and Ongoing Safety through Patient-centeredness, Engagement, Communication, and Technology |
WIC | Special Supplemental Nutrition Program for Women, Infants, and Children |
USPSTF | U.S. Preventive Services Task Force |
VA | U.S. Department of Veterans Affairs |