The National Academies Press: Building The Case For Health Literacy: Proceedings of A Workshop

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Building the Case for Health Literacy: Proceedings of a Workshop
Joe Alper, Rapporteur
Roundtable on Health Literacy
Board on Population Health and Public Health Practice
Health and Medicine Division
Copyright National Academy of Sciences. All rights reserved.

THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001
This activity was supported by contracts between the National Academy of Sci-
ences and AbbVie Inc.; Aetna Foundation; American Dental Association; Bristol-
Myers Squibb; East Bay Community Foundation (Kaiser Permanente); Eli Lilly and
Company; Health Literacy Media; Health Literacy Partners; Health Resources and
Services Administration (HHSH25034011T); Humana; Institute for Healthcare
Advancement; Merck Sharp & Dohme Corp.; National Library of Medicine; New
York University Langone Health System; Northwell Health; Office of Disease Pre-
vention 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.
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2018. Building the case for health literacy: Proceedings of a workshop. Washington,
DC: The National Academies Press. doi: https://doi.org/10.17226/25068.

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PLANNING COMMITTEE ON BUILDING

THE CASE FOR HEALTH LITERACY1
SUSAN BOCKRATH (Chair), Health Literacy Nebraska

LORI HALL, Director of Health Literacy, Eli Lilly and Company
STANTON HUDSON, Associate Director, University of Missouri Center
for Health Policy
LAURIE MYERS, Global Health Literacy Director, Merck Sharp &
Dohme Corp.
LAURA K. NOONAN, Director, Center for Advancing Pediatric
Excellence, Levine Children’s Hospital at Carolinas Medical Center
AUDREY RIFFENBURGH, President, Health Literacy Connections
BERNARD M. ROSOF, Chief Executive Officer, Quality HealthCare
Advisory Group, LLC, and Professor of Medicine, Donald and
Barbara Zucker School of Medicine at Hofstra/Northwell
STEVEN RUSH, Director, Health Literacy Innovations Program,
UnitedHealth Group
MICHAEL VILLAIRE, President and Chief Executive Officer, Institute
for Healthcare Advancement
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.


ROUNDTABLE ON HEALTH LITERACY1
BERNARD M. ROSOF (Chair), Chief Executive Officer, Quality

HealthCare Advisory Group, LLC, and Professor of Medicine, Donald
and Barbara Zucker School of Medicine at Hofstra/Northwell
WILMA ALVARADO-LITTLE, Associate Commissioner, New York State
Department of Health, and Director, Office of Minority Health and
Health Disparities Prevention
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
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
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 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, Executive Director, Partnership Health Center
LORI HALL, Director of Health Literacy, Global Medical Strategy and
Operations, Eli Lilly and Company
LINDA HARRIS, Director, Division of Health Communication and
eHealth Team, U.S. Department of Health and Human Services
JOAN KELLY, Chief Patient Experience Officer, New York University
Langone Health System
LAURIE MYERS, Global Health Literacy Director, Merck Sharp & Dohme
Corp.
CATINA O’LEARY, President and Chief Executive Officer, Health
Literacy Media
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

MICHAEL K. PAASCHE-ORLOW, Professor of Medicine, Boston

University School of Medicine
TERRI ANN PARNELL, Principal and Founder, Health Literacy Partners
KIM PARSON, Strategic Consultant, Proactive Care Strategies, Humana
KAVITA PATEL, Managing Director for Clinical Transformation and
Delivery, The Brookings Institution
ANDREW PLEASANT, Senior Advisor on Health Literacy Interventions,
Research, and Evaluation, Health Literacy Media
LINDSEY A. ROBINSON, Thirteenth District Trustee, American Dental
Association
STACEY ROSEN, Associate Professor of Cardiology, Donald and
Barbara Zucker School of Medicine at Hofstra/Northwell, 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
MICHAEL VILLAIRE, Chief Executive Officer, Institute for Healthcare
Advancement
EARNESTINE WILLIS, Kellner Professor in Pediatrics, Medical College
of Wisconsin
AMANDA J. WILSON, Head, National Network Coordinating Office,
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
Consultant
RUTH PARKER, Professor of Medicine, Pediatrics, and Public Health,
Emory University School of Medicine
Health and Medicine Division Staff

LYLA M. HERNANDEZ, Senior Program Officer
MELISSA G. FRENCH, Program Officer
ALEXIS WOJTOWICZ, Senior Program Assistant
ROSE MARIE MARTINEZ, Senior Board Director, Board on Population
Health and Public Health Practice
viii

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, evi-
dence, 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:
JULIE McKINNEY, Exceptional Lives, Inc.

GREG O’NEILL, Christiana Care Health System
HELEN OSBORNE, Health Literacy Consulting
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 HUGH H. TILSON, University of
North Carolina. He was responsible for making certain that an indepen-
dent 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


Acknowledgments
The sponsors of the Roundtable on Health Literacy made it possible to

plan and conduct the workshop Building the Case for Health Literacy, which
this publication summarizes. Federal 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 Library
of Medicine, and Office of Disease Prevention and Health Promotion.
Nonfederal sponsorship was provided by AbbVie Inc.; Aetna Foundation;
American Dental Association; Bristol-Myers Squibb; East Bay Community
Foundation (Kaiser Permanente); Eli Lilly and Company; Health Literacy
Media; Health Literacy Partners; Humana; Institute for Healthcare Advance-
ment; Merck Sharp & Dohme Corp.; New York University Langone Medical
Center; Northwell Health; and UnitedHealth Group.
The Roundtable on Health Literacy would like to thank each of the
speakers and moderators for their time and effort. Speakers and modera-
tors were Thomas K. Bauer, Chris Carlson, Jennifer Dillaha, Laurie Francis,
Cathryn Gunther, Lori K. Hall, Stanton Hudson, Laura K. Noonan, Jennifer
Pearce, Martin Ratermann, Audrey Riffenburgh, R. V. Rikard, Bernard M.
Rosof, Lawrence G. Smith, and Christopher R. Trudeau.
xi


Contents
ACRONYMS AND ABBREVIATIONS xvii
1 INTRODUCTION 1
Organization of the Proceedings, 2
2 THE PATIENT PERSPECTIVE ON THE NEED FOR

HEALTH LITERACY 5
Discussion, 11
3 IMPROVING HEALTH AND THE BOTTOM LINE:

THE CASE FOR HEALTH LITERACY 15
Presentation of the Commissioned Paper, 15
Discussion, 23
4 WHY HEALTH LITERACY? 29

A Pharmaceutical Company Perspective on Why Health Literacy
Matters, 29
Achieving the Quadruple Aim: Health Literacy Interventions as
an Essential Component, 32
Discussion, 40
5 ADOPTING HEALTH LITERACY IN AN ORGANIZATION 43

What Research Shows About Adopting and Implementing Health
Literacy in a Health Organization, 43
A Case Study: Adopting Health Literacy in a Health Plan, 47
xiii

xiv CONTENTS
A Case Study: Adopting Health Literacy in a Public Health

System, 53
Discussion, 57
6 WHERE DO WE GO FROM HERE? 61

Moderated Panel Discussion, 61
Discussion, 70
7 REFLECTIONS ON THE DAY 73
REFERENCES 79
APPENDIXES
A Workshop Agenda 83
B Biographical Sketches of Workshop Moderators, Speakers, and
Panelists 87
C Improving Health and the Bottom Line: The Case for Health
Literacy 95

Box, Figures, and Tables
BOX
1-1 Statement of Task, 2
FIGURES
3-1 Health literacy and the bottom line, 17
3-2 The ethical case for health literacy, 20
3-3 The difference between equality, equity, and eliminating the
structures and policies that contribute to inequity, 23
4-1 Priority areas for national action to transform health care quality in
the United States, 33
4-2 A patient’s experience of the cycle of crisis care in the absence of
health literacy, 34
4-3 A patient’s experience with health literate care, 36
4-4 A universal precautions approach in a health literate care model, 38
5-1 Building the case for health literacy interventions, 48

5-2 The inputs and outputs of health literacy at the moment of
interacting with the health care system, 49
5-3 The two components of the consumer’s journey in the health care
system, 50
5-4 RAND health literacy estimates by Arkansas County, 54
xv

xvi BOX, FIGURES, AND TABLES
TABLES
4-1 Estimated Effect of Health Literacy on Selected Health Outcomes,
Controlling for Education, Income, Race, and Language, 40
C-1 National Institutes of Health (NIH)—Number of Currently Funded

Health Literacy Projects, 124
C-2 Patient-Centered Outcomes Research Institute (PCORI) Funded
Health Literacy Projects, 125

Acronyms and Abbreviations
ACA Patient Protection and Affordable Care Act

ADH Arkansas Department of Health
AHRQ Agency for Healthcare Research and Quality
CANDOR Communication and Optimal Resolution

CMS Centers for Medicare & Medicaid Services
EHR electronic health record
FQHC federally qualified health center
HCAHPS Hospital Consumer Assessment of Healthcare Providers and

Systems
HHS U.S. Department of Health and Human Services
HIPAA Health Insurance Portability and Accountability Act
PCORI Patient-Centered Outcomes Research Institute
VA U.S. Department of Veterans Affairs
WIC Special Supplemental Nutrition Program for Women, Infants,

and Children
xvii


Introduction1
The field of health literacy has evolved from one focused on individuals
to one that recognizes that health literacy is multidimensional. Health lit-
eracy, explained Bernard Rosof, professor of medicine at the Zucker School
of Medicine at Hofstra/Northwell and chief executive officer of the Quality
HealthCare Advisory Group, includes both system demands and system
complexities, as well as individual skills and abilities. While communicat-
ing in a health literate manner is important for everyone, it is particularly
important when communicating with those with limited health literacy who
also experience more serious medication errors, higher rates of hospitaliza-
tion and use of the emergency room, poor health outcomes, and increased
mortality. “Over the past decade, research has shown that health literacy
interventions can significantly impact various areas including health care
costs, outcomes, and health disparities,” said Rosof in his introductory
remarks to the workshop. He continued:
It also has been noted that health literacy is key to delivering high-quality,
person-centered care, health services, and programs. Both in the medical
care system and for public health, it is critical that health literacy be con-
sidered when we are talking about person-centered care and involvement
of the person and family.
1 This section is based on the presentation by Bernard M. Rosof, chief executive officer,
Quality HealthCare Advisory Group, LLC, and professor of medicine, Donald and Barbara
Zucker School of Medicine at Hofstra/Northwell, and his statements are not endorsed or veri-
fied by the National Academies of Sciences, Engineering, and Medicine.

2 BUILDING THE CASE FOR HEALTH LITERACY
BOX 1-1
Statement of Task
An ad hoc committee will plan and conduct a 1-day public workshop that will
feature invited presentations and discussion on the impact of health literacy. A
commissioned paper will be presented during the workshop. The workshop may
include presentations and discussion of issues related to the effect of health lit-
eracy interventions on health and health care costs, quality, behaviors, outcomes,
and other areas as appropriate. The committee will define the specific topics to
be addressed, develop the agenda, select and invite speakers and other partici-
pants, and moderate the discussions.
To understand the extent to which health literacy has been shown

to be effective at contributing to the Quadruple Aim of improving the
health of communities, providing better care, providing affordable care,
and improving the experience of the health care team, the Roundtable on
Health Literacy established an ad hoc committee to plan and conduct a
public workshop on building the case for health literacy (see Box 1-1).2
The roundtable also commissioned a paper that would identify and describe
peer-reviewed evidence of the effect of health literacy in a variety of areas.
ORGANIZATION OF THE PROCEEDINGS

An independent planning committee organized this workshop in accor-
dance with the procedures of the National Academies of Sciences, Engi-
neering, and Medicine. (See Appendix A for the agenda.) The planning
committee’s members were Susan Bockrath, Lori Hall, Stanton Hudson,
Laurie Myers, Laura Noonan, Audrey Riffenburgh, Bernard Rosof, Steven
Rush, and Michael Villaire. This publication summarizes the workshop’s pre-
sentations and discussions, and it highlights important lessons about the role
of health literacy in meeting the Quadruple Aim, case studies of organizations
that have adopted health literacy, and discussions among the different stake-
holders involved in making the case for health literacy. Chapter 2 provides a
patient’s perspective on the need for health literacy and Chapter 3 recounts
2 The planning committee’s role was limited to planning the workshop, and the P
roceedings
of a Workshop was prepared by the workshop rapporteur as a factual summary of what
occurred at the workshop. Statements, recommendations, and opinions expressed are those
of individual presenters and participants, and are not necessarily endorsed or verified by the
National Academies of Sciences, Engineering, and Medicine, and they should not be construed
as reflecting any group consensus.

INTRODUCTION 3
the discussion on the commissioned paper. Chapter 4 discusses why health

literacy is important and Chapter 5 provides examples of how different
organizations adopt health literacy. Chapter 6 recaps a moderated discussion
on the future of the field of health literacy and Chapter 7 summarizes the
roundtable members’ reflections on the day’s discussions.
In accordance with the policies of the National Academies of Sciences,
Engineering, and Medicine, the workshop did not attempt to establish any
conclusions or recommendations about needs and future directions, focus-
ing instead on issues identified by the speakers and workshop participants.


The Patient Perspective on the

Need for Health Literacy1
To provide some context for the day’s discussions on the importance of

health literacy, the workshop began with two presentations: one by Martin
Ratermann, a craftsman, cancer survivor, and advocate for patient safety
and avoidance of medical errors, and one by Jennifer Pearce, who founded
Plain Language Health after experiencing firsthand how poor communica-
tion can adversely affect health. An open discussion, moderated by Bernard
Rosof, followed the two presentations.
Ratermann’s less-than-satisfactory journey in the health care system
began in 2001, when at age 49 he had his first colonoscopy at an aca-
demic teaching hospital and had a 1-inch malignant polyp removed from
his rectum. At the time, nobody told him that he needed to be seen on a
regular basis going forward, and even when his wife, who was employed
at this same institution, asked if her husband should get a second opinion,
she was told by the chief executive officer—a gastroenterologist—that he
was in capable hands.
In September 2005, Ratermann noted some blood in his stool and
mentioned that to his doctor, who had his medical history on hand. He was
examined and told he had a hemorrhoid. He voiced the same complaint
in late 2006, and again, nothing was done. “I felt assured. I did not think
it was my place to question,” said Ratermann. Referring to his physician,
1 This chapter is based on the presentations and discussions of Martin Ratermann, a
craftsman and cancer survivor, and Jennifer Pearce, founder of Plain Language Health. Their
statements are not endorsed or verified by the National Academies of Sciences, Engineering,
and Medicine.

he added, “She was the M.D., and I was the woodworker.” In mid-2007,
when the bleeding got worse, he was reassured again that the cause was
a hemorrhoid and not a cause for concern, until the following July when
he was diagnosed with stage IV rectal cancer. “I now know rectal bleed-
ing should be taken seriously. Mine was ignored,” he said. “What a hard
lesson. A whole academic health care system failed, and I nearly died

because I did not speak up and ask questions. Because I finally decided to
ask questions and speak up, I find myself here today.” Ratermann recalled
that when he began his career as a woodworker, a noted British furniture
maker told him that a good and successful commission starts out with good
conversation. “So does care of your health, and good conversation involves
listening and paying attention,” he said.
When first diagnosed, Ratermann was determined to deal with his
cancer with as much grit and integrity as possible, and he was bolstered by
the care and respect he experienced from the technicians who administered
the initial set of tests and imaging scans. However, he soon had two expe-
riences a few days apart that sent him into a tailspin. The first was with a
surgeon, who told him he had the worst case of rectal cancer she had ever
seen, that she was not sure she could help him, and that he was going to
have to wear a colostomy bag. “I felt embarrassed, and I was not certain
that I even knew what she was talking about,” he said. He left that appoint-
ment convinced that he did not want her as his surgeon.
The second negative experience came at the hands of the oncologist he
and his wife went to see. The oncologist talked too fast, was brusque, and
would not look Ratermann in the eye. The oncologist pronounced that he
was going to resect Ratermann’s liver in 2 days, and he and his wife left
the appointment shaken. When a nurse practitioner called the next day to
schedule surgery, Ratermann told her he would not be coming back. “I was
discouraged,” he said. “I knew I was in over my eyeballs, and I was ready to
give up, but my wife disagreed. She decided to ask for some help.” A phone
call to a close friend and physician in Kansas City led to an appointment
48 hours later with a specialist at the Siteman Cancer Center in St. Louis,
who told Ratermann that his initial polyp removal had not been complete
and that his cancer was actually a recurrence. “He pointed us in a very
different direction, and everything changed after that,” Ratermann said.
Ratermann’s new surgeon explained things well and reassured R atermann
that this was not the worst case he had ever seen. The surgeon also com-
mented that Ratermann asked many questions that most patients never
posed, and as Ratermann recalled, he seemed pleased to answer them and
even drew a picture of what was going to occur during surgery. Fortunately,
the surgery revealed that the tumor had not spread to his liver and that the
pathology reports were “the best we could have asked for.” His subsequent
therapy at Missouri Cancer Associates was superb, he said, and even when he

THE PATIENT PERSPECTIVE ON THE NEED FOR HEALTH LITERACY 7
was worn down and confused, the staff there were compassionate and caring,
even proactively asking him and his wife about their concerns and worries.
Communication, he said, was excellent. Even later, when he developed a fever
and had to go to a wound center, the nurses and doctors there were caring.
The first thing the doctor who saw him did was sit next to him, put her hand
on his arm, and let him know that she and her colleagues were there to help
him. “The touch of the human hand, and the tone of voice, I assure you,
can have a positive effect on the process we call healing,” said Ratermann.
His family, he said, has learned that there is no such thing as false hope,
and he credited the remarkable care he received from many dedicated care-
givers, particularly his wife. When he recovered his strength, he obtained
his medical records, wrote to the academic medical center where he was
first seen, and outlined the errors in care he had experienced with the hope
of preventing others from the same fate. Two months later, he met with the
vice chancellor of medical sciences whose response was that it was hard to
pay a primary care physician $150,000 per year.
Shortly thereafter, Ratermann received a call from the director of clini-
cal effectiveness, who incidentally had been his primary care physician
before receiving a promotion, and she invited him to bring his concerns to
a meeting at the hospital. After outlining what he had experienced and what
went wrong with his initial care, the head of risk management dismissed
it all by calling what Ratermann experienced a complication. “I was taken
aback,” he said. “I politely disagreed, everything remained cordial, and
before I left, I asked if anyone says they are sorry. I did not get an apology,
so even communication about how we deal with medical errors failed.”
That was not the end of his story, however. Six months later, he learned
that an entry was made in his medical record showing that he had normal
colonoscopy results in 2003 and 2005, neither of which took place. “A
thoughtful person would ask questions about ethics,” he said. “How do
you make corrections in a climate like this? We are human, and things
do go wrong, and how we deal with error and mistakes is the real measure
of who we are as human beings.” Noting that he has seen both the finest in
health care and some things that are unacceptable, he wondered how dif-
ferent his family’s life would have been had his doctors taken a little more
time and focused less on the bill.
“Change has to come from the top, but the catalyst for change has to
come from the bottom,” he said, referring to his new and reluctant role as
an advocate for patient safety. “The loss of personal privacy is now part of
who I am, and I do not want to let it define me. I want to be remembered
for my workmanship,” Ratermann explained. “I feel like I have achieved
my goal of doing this with integrity, and mentally, spiritually, and emotion-
ally, I have done well. This has allowed me to forgive and to harbor no
hard feelings, forgiveness beyond what I was taught, but forgiveness that

sets me free.” He also recalled something that an executive of a health care

system said at a conference: “Just because we know the right thing does
not mean we always do it.”
Ratermann said he does his best with the physical issues he deals with
now, but he feels disheartened by the medical system’s response to what
he experienced. Noting that he was not looking for sympathy, he said, “I
came here to be your partner, and it takes determination and spine.” He
also pointed out that his current caregivers have a keen sense of what the
error in his diagnosis cost him and seem determined to do everything they
can to support him going forward.
Regarding the prevention of medical errors, he noted the work of S orrel
King, whose 18-month-old daughter died because of a medical error, as
well as Atul Gawande, and others, who repeatedly point out that the most
common cause of error is a breakdown in communication. “Why would
we work so hard to be good at what we do and allow ourselves to fail
because we do not communicate effectively?” asked Ratermann. “It seems
senseless. It is costly to insurance companies, to business owners, and to
families.” What troubles him the most, he added, is the thought that others
might have done without because of what was spent on his care. “It should
trouble you, too,” he said.
In closing, Ratermann said that one lesson he learned from his experi-
ence is that medicine is a healing art as well as a science. “St. Francis tells
us that if you work with your hands, you are a laborer. If you work with
your hands and your mind, you are a craftsman, and if you work with your
hands, your mind, and your heart, you are an artist,” he said. “A number
of times, I have given this talk to the medical schools, and I leave them with
this thought: please do not lose your heart in your goal to heal.”
Jennifer Pearce began her story by noting that the worst part of it is
that it is not unique. “Details aside, it could be anyone’s story, and I know
this because I make my living talking with people just like me—regular
folks with no medical training,” she said. “What we all have in common
is being hurt by the very system that is designed to care for you, and I
am not talking about major medical errors. It is a hurt that comes from a
slow, steady erosion of confidence in people and organizations.” The one
thing that makes her story different, she said, is that she has spent the past
18 years working inside health systems to remedy the problems she expe-
rienced as a patient. It is a process she likened to digging a tunnel with a
tablespoon. “I think everyone in this room understands,” she added.
Over those 18 years, Pearce has learned three lessons. The first, she
said, is that efficiency has been allowed to supplant empathy, something
she learned in the summer of 1991 when she was battling what had been
initially diagnosed as whooping cough and syphilis, then a blood cancer,
and finally systemic lupus. She recalled asking the nurse who phoned her

at work on a Friday afternoon with the final diagnosis if she was going to
die. The nurse did not know, but she did say that she had an elevated risk
of stroke and likely would not be able to have children. Pearce then asked
what she was supposed to do next, and the nurse told her that the doctor
was away until Tuesday and that she should make an appointment with
a rheumatologist. “The next available appointment was 3 months away,”
said Pearce.
That first lesson was reinforced 10 years later after she had given pre-
mature birth to twin girls and developed serious complications. At some
point, she said, staff wheeled her in her hospital bed into the neonatal
intensive care unit, where the doctor began educating her about her girls,
a process a family member captured on video. “He delivered the requisite
detailed education directly to me, and at the end he asked if I had any
questions. I looked back at him and blinked slowly, once or twice I n odded
my head, and I said no,” she recounted, noting she had no memory of the
episode. “In both cases, the providers had news to deliver, and each deliv-
ered it efficiently. Both got to check the box. The problem was they did so
without showing empathy for their audience.” These examples and others
like them, she said, have made it hard for her to trust that people in the
health care system would do right by her.
The second lesson she learned is that information silos continue to
stymie the continuity of care. While she accepts responsibility for managing
her chronic illness every day, doing so has been made more difficult by the
inability for information about her care to flow smoothly among providers,
particularly on the occasions when she has had to switch doctors. “My
doctors’ efforts to find vital details in my previous records become time-
consuming hunts during my already too-short appointments,” she said, an
experience that seems the same today in the era of electronic health records
(EHRs) as it did when her records were all on paper. The result is that
the burden of tracking what tests and medications she needs falls on her
shoulders, and that lab result trend lines start over with each new provider,
a situation she called unacceptable. “While medical record portability and
meaningful use requirements could have significantly relieved patients of
the burden of having to remember all the details, their promise has been
hampered by the silos they were designed to bridge,” said Pearce. “These
experiences made me feel like my care, past and future, was less important
than the integrity of these systems’ EHRs.” What is particularly galling, she
said, is that EHRs have the capability of integrating information from other
systems, but that they do not appears largely to be a business decision.
Pearce called lesson three “labeling at the expense of connecting.”
“Every organization I have worked in has a unique vocabulary, and health
care is no different.” What labels such as “noncompliant” and “frequent
flyer,” and medical acronyms such as “DVT” (a blood clot) or “OFI”

(opportunity for improvement), do is dehumanize a person and their situa-

tion, she said, which gets in the way of expressing empathy. In her case, she
was labeled as high risk when it came to pregnancy, and one obstetrician
said he would not touch her with a 10-foot pole. “He dehumanized my
situation and made it about liability,” said Pearce. Another obstetrician, in
contrast, called her situation high risk but said he was willing to try. “The
risk was on me, and I accepted it,” she said, noting that her premature
twins just got their driver’s licenses.
In her mind, health literacy is not just about words but about the
experience of health care, raising the question of how health literacy can
infuse humanity into health care. “I am talking about creating health liter-
ate health care experiences, ones where people feel better when they come
out instead of worse,” said Pearce, who offered three steps for how health
literacy can lead to better care. First, she said, it is necessary to align care
with a patient’s needs, design workflows that revolve around the people
being served, and work with patients to find the best time and place to
deliver information. For example, the best time to have a patient consent
to anesthesia is not when the patient is on a gurney being wheeled into
surgery. “That may be the most convenient time for the anesthesiologist,
but how is that benefitting the patient?” asked Pearce.
Second, the health system must shift the burden of communication
from the patient to the system whenever possible, Pearce said. This requires
using EHRs to their full potential and using the Health Insurance Portabil-
ity and Accountability Act (HIPAA) and meaningful use requirement in
the Patient Protection and Affordable Care Act (ACA) to benefit patients,
as these laws intended. Information silos and an overemphasis on privacy
create roadblocks. Third, it is imperative to translate labels into dialogues
that reveal truth rather than obscure it, she said. As an example, Pearce
said that labeling someone “noncompliant” is a shortcut that leads to a
dead end, while inviting someone to share why they have chosen to not
take medication starts a dialogue. “Words matter,” said Pearce. She said:
Efficiency, information silos, acronyms, and labels are things we associ-

ate with business. Empathy, continuity, connection are things we want in
health care. Health care is a business, but it is the business of caring for
human beings, and it cannot be successful without humanity at its core.
Concluding her remarks, Pearce acknowledged that none of what she

suggests is easy and that it takes time and effort, but the evidence shows
that doing so leads to a more human system. “Most importantly,” she said,
“a humanity-driven system minimizes the harm, the burden, and the shame
that too often characterizes the status quo, leaving both patients and our
providers dissatisfied.”

DISCUSSION
Before opening the floor to questions, Rosof described a phenomenon
he calls the “hand on the doorknob syndrome,” which is when a patient,
after spending 30 to 40 minutes going through a physical examination and
discussion, gets up and does not exactly leave the room, but rather lingers
for a few moments with a hand on the doorknob. “If you notice this and
ask the patient if there was something you missed, you find out the true
reason for the patient’s visit, which you missed in the previous 45 minutes,”
said Rosof. “That hand on the doorknob, the ability to communicate, is
something that becomes innate for people who want to learn the methods
of communication.”
Catina O’Leary from Health Literacy Media asked Pearce for her
thoughts on how to stop thoughtless and lazy communication, given that
the health literacy field has been trying to accomplish that task for 20 years
or so. Pearce replied that in working with providers, they all say they want
to adopt innovations to improve communication, but only if they do not
affect their workflow. This attitude should not be surprising, she said, given
that physician incentives and performance metrics are about efficiency and
time spent using the EHR. “The EHRs run health care at this point, so I
think the patient is an afterthought,” said Pearce. What must happen, she
said, is for physician incentives to be based instead on how well they com-
municate with patients, which would not only benefit patients but ease the
burdens physicians are experiencing from spending so much time working
with EHRs.
Stacey Rosen from Northwell Health noted that there were two s tories
in The New York Times on the day of the workshop discussing those
burdens and their effect on clinician wellness. Pearce replied that Donald
Berwick, the Institute for Healthcare Improvement’s founder and current
Senior Fellow, has written about the three eras of health care, starting with
the paternalistic era that is ending, albeit slowly. The second era, which
represents today’s health care, measures everything, regardless of whether
it needs to be measured. The third, which is in its nascent stage, would
create a more health literate experience. Rosof recounted another story in
which Berwick was addressing his daughter’s medical school graduation
class. After giving his usual commencement speech, he told the new doctors
that the best thing they could to was to take off their white coats, sit with
their patients, and really learn what it takes to be a physician and how to
communicate with their patients.
Andrew Pleasant from Health Literacy Media asked Pearce and
Ratermann how medical education should be changed so that patients do
not have to experience what they went through because of poor communica-
tion. Ratermann said he did not know how to teach effective communication

skills other than to start in kindergarten and work from there. He added,
though, that listening and asking questions is a key piece of being a good
communicator, and being curious about the patient and putting them in the
center of the conversation is a good place to start. Pearce said she would
have medical schools pay attention to the work of Clifford Coleman at
Oregon Health and Science University, who has developed a health training
intervention for medical students (Coleman and Appy, 2012; Coleman and
Fromer, 2015; Coleman et al., 2013, 2016a,b). She also recommended that
physicians-in-training who are poor communicators should become special-
ists in a field that does not require contact with patients, such as radiology.
Cindy Brach from the Agency for Healthcare Research and Quality
(AHRQ) noted that research shows that people are more likely to sue
their physicians after a medical error when there is poor communication
(Kachalia et al., 2010; Robbennolt, 2009) and that her agency has devel-
oped the Communication and Optimal Resolution (CANDOR) toolkit
to help physicians develop apologies for errors and learn from their mis-
takes.2 Given that there are institutions that have not adopted this type of
technique, Brach asked if an apology would have made a difference to the
two speakers in terms of whether they sued for malpractice. Ratermann
said that he asked for an apology several times, and if there had been one,
“we could have started down a totally different road.” He said that physi-
cian friends of his have told him that he would have been a model for a
different approach to dealing with a series of mistakes, but instead, there
was constant finger pointing and denial. As he pointed out, it is hard to
correct a mistake when nobody will admit to making one. He noted, too,
that when he tried to get his medical records, he had to pay $100 to obtain
them, which in his opinion was an intentional barrier erected to discourage
him from having those records. He also said that when he received the right
diagnosis, he called his primary care doctor, who responded that he had
been focusing on Ratermann’s diabetes. Ratermann is not diabetic.
In the spirit of the moment, Suzanne Bakken from Columbia U niversity
commented that as a biomedical informatician, she wanted to offer an
apology for her field’s failure to develop an informatics solution that is
truly more patient-centered. “We know that our current situation certainly
makes it very difficult for both the patients and the providers,” said Bakken.
She then asked the speakers if they had any experience with the OpenNotes
movement in health care (Leveille et al., 2012; Trossman, 2013),3 and if
they did, if they would comment on its implications for a health literacy
agenda. Pearce said she is familiar with it and is all for anything that allows
2 See https://www.ahrq.gov/professionals/quality-patient-safety/patient-safety-resources/
resources/candor/introduction.html (accessed December 24, 2017).

3 See https://www.opennotes.org (accessed December 24, 2017).

medical records to be more portable. One of the great frustrations for

patients, she said, is that patient portals do not allow patients to feed infor-
mation into their EHR because health systems do not trust patients to enter
accurate information, even for something as simple as getting their flu shot
at the grocery store. “I think anything that circumvents these ‘nervous nelly’
health systems and their data integrity issues is a positive,” said Pearce, who
reiterated the common knowledge that EHRs are built as billing platforms.
“Every health system in the country is trying to put lipstick on a pig and
turn these EHRs into patient engagement tools, and that is not what they
are built for,” she added.
Pearce then suggested that there is a huge opportunity for the health
information technology field to develop proprietary or open-source prod-
ucts to fill that gap. One big issue, responded Bakken, is that she and many
of her colleagues work at institutions that had developed home-grown
EHRs with increased functionality, but that these institutions are now
adopting one of the large commercial products that in almost all instances
results in decreased functionality. Ratermann commented that he is the last
person to talk to about EHRs and that he is a word-of-mouth person. In
his case, he was fortunate that his wife knew someone who knew someone
who referred him to Missouri Cancer Associates for his treatment. Pearce
remarked that the health care system can and needs to do better than “care
by accident.”
Earnestine Willis from the Medical College of Wisconsin thanked
the two speakers for “letting us as physicians see a mirror of our system
and the consequences of what can happen with these errors.” She then
commented on the fact that Ratermann’s wife was his strongest advocate
at a pivotal time in his journey and the importance of patients having an
advocate when receiving critical information at times when it may be hard
to comprehend or even hear that information. Her question to Pearce was
whether the institution she worked at before becoming a consultant had
a system for incorporating advocacy for patients at critical times in their
care when it is easy to miss some of the finer pieces of information that
are critical for making good medical decisions. Pearce said that at the time
she left that institution in January 2017 there was no formal effort beyond
encouraging people to bring someone with them to their appointments. In
fact, the lack of such a system is why she emphasizes the after-visit summary
in her health literacy work. “For those of us who cannot bring someone
with us, it is the only record of what you may have missed,” said Pearce.
In her opinion, producing a health literate after-visit summary is sup-
posed to be one of the meaningful use requirements, yet in her experience,
most after-visit summaries are useless. “I think that is an area where our
field can effect some change,” she said, noting that she tried hard in her
previous position to get one of the major EHR vendors to add tools that

would produce better after-visit summaries only to be told that her system
was the only one asking for such tools. “I think we can exert some pressure
there as a profession,” said Pearce. Brach noted that the roundtable held a
workshop in March 2014 on after-visit summaries and discharge instruc-
tions (IOM, 2014) and that AHRQ has funded research that will be pub-
lished soon on after-visit summaries. As part of that project, the researchers
did qualitative work with patients regarding what they want to see in a
more understandable, actionable after-visit summary and found that there
was little flexibility in the common EHR platforms to produce that type of
information.
Wilma Alvarado-Little from the New York State Department of
Health noted that Ratermann’s wife worked for the organization that
misdiagnosed him and commented that just because someone works for a
health care organization does not mean that they are going to be getting
honest responses. If that is true, she said, it makes one wonder what mes-
sages people not associated with a health care organization are getting.
Gwen Ratermann, Martin’s wife, pointed out that for someone like her
husband or her 87-year-old mother, both of whom are computer illiterate,
the idea of being able to access their own EHRs means nothing, which in
her mind reinforces the importance of teaching physicians how to be good
communicators.
Sochan Laltoo, a public health instructor from Trinidad and Tobago,
remarked that in impoverished countries or countries where people may
not feel empowered to access their own medical records, people may not
be health literate enough to ask questions of their doctors and understand
the answers. Given the prevalence of health illiteracy, he asked if there were
any international efforts to promote health literacy. Pearce said there are,
and Rosof suggested that Laltoo pick up a copy of the summary from a
2012 workshop the roundtable conducted on health literacy around the
world (IOM, 2013).

Improving Health and the Bottom Line:

The Case for Health Literacy
The workshop’s second session featured presentations by two of the four

authors of the paper commissioned for the workshop: Stanton H udson, asso-
ciate director of the Center for Health Policy at the University of M
issouri,
and R. V. Rikard, senior research associate in the Department of Media and
Information at Michigan State University. An open discussion followed their
presentation.
PRESENTATION OF THE COMMISSIONED PAPER1

Before discussing the commissioned paper, Hudson told the workshop
attendees that he and his colleagues also created a series of fact sheets that
can be used to present information on the impact of health literacy. He also
noted that his team’s plain language specialist revised the paper’s execu-
tive summary so it could be understood by people outside of the field, and
he thanked the more than 50 people he and his colleagues spoke with to
find out what new evidence was available and identify best and promising
practices that have not been published in the peer-reviewed literature. He
1 This section draws on a paper commissioned by the Roundtable on Health Literacy, Im-
proving Health and the Bottom Line: The Case for Health Literacy, by Stanton Hudson, R. V.
Rikard, Ioana Staiculescu, and Karen Edison (see Appendix C) and is based on the presenta-
tion by Stanton Hudson, associate director of the Center for Health Policy at the University
of Missouri, and R. V. Rikard, senior research associate in the Department of Media and
Information at Michigan State University, and the statements are not endorsed or verified by
the National Academies of Sciences, Engineering, and Medicine.
15

explained that there is a great deal of quality improvement work underway

in hospitals that has not yet appeared in the peer-reviewed literature.
At the start of their work on the commissioned paper, Hudson and his
colleagues realized that there are several challenges to making the case for
health literacy, and even with a compelling case, there are aspects of the
U.S. health care system that hinder the argument. Volume-based reimburse-
ment incentives, for example, are an impediment, although the ongoing
transition to value-based reimbursement should ease that barrier.
A second challenge is the overall lack of transparency in the U.S. health
care system. “We want people to be active, engaged health consumers,
health customers, but if you cannot shop around for price, or you cannot
tell the quality of the products you are buying, then it makes it virtu-
ally impossible,” said Hudson. Quoting James Duesenberry, Hudson said,
“Economics is all about how people make choices. Sociology is all about
why they don’t have any choices to make.” The goal may be to empower
patients to make choices, he said, but they are trying to work within systems
and against policies and structures that limit patient choice at almost every
level. He stated that until the health care system and policies that govern
it change, it will be challenging for well-intentioned patients to make well-
informed choices even when presented with health literate information.
A third challenge to making the case for health literacy is that the legal
profession has not yet embraced the literacy movement and can function
as a barrier. As an example, Hudson recounted how frequently he and his
colleagues have reworked documents, often with the help of patients, for
Missouri’s Medicaid program only to have lawyers reject the changes. He
did note that some of the younger lawyers are starting to get that plain
language can reduce, not increase, liability, but until the legal profession is
convinced about the importance of plain language, the legal profession will
continue to be a challenge.
Rikard then discussed the fourth challenge, which is the need for
research to support the efficacy of health literacy interventions. Most of
the research that has been done, he said, has looked at short-term out-
comes. There have been no longitudinal studies involving health literacy
that examine long-term outcomes related to cost, quality, satisfaction, and
effects of broad-based health literacy initiatives and interventions, which
makes it difficult to identify causal relationships between health literacy and
improved outcomes. Rikard conceded that there could be useful evidence
in the literature that does not turn up in a search using the term “health
literacy.” He also noted that Hudson heard in informal conversations with
researchers that when an intervention does not work, it is difficult to get
funding to try a different approach.
To prepare the case for health literacy, Hudson and his colleagues first
looked at what they called the business case, which he explained speaks

IMPROVING HEALTH AND THE BOTTOM LINE 17
FIGURE 3-1 Health literacy and the bottom line.

SOURCE: As presented by Stanton Hudson and R. V. Rikard at Building the Case
for Health Literacy: A Workshop on November 15, 2017.
to the factors that go into the Quadruple Aim and is aimed primarily at
hospitals. They then looked at the ethical case. There are areas of overlap
between the two, he said, given that health literacy can affect behavior
change and patient experience as well as cost, quality, and access.
When the authors of the commissioned paper looked at the business
case (see Figure 3-1) they started by looking for recent studies on cost that
had not been included in a systematic review published in 2011 (Berkman
et al., 2011a,b) and identified quite a few ways in which health literacy
can improve the bottom line. For example, one health literacy interven-
tion found that some 18 percent of individuals who received an automated
phone call to remind them to have a cancer screening did, in fact, get
screened, generating nearly $700,000 in additional income for the health
system in 2 months. When Massachusetts General Hospital hired a commu-
nity resource specialist, emergency department visits fell by 13 percent and
realized a net annual savings of 7 percent, generating a return on investment
of $2.65 for each $1.00 spent on the community resource specialist.2 Even
something simple, such as giving parents the book What to Do When Your
Child Gets Sick, produced savings of $1.50 for every $1.00 spent by giving
parents easy-to-understand information on how to deal with their child’s
2 Information available at http://www.partners.org/Innovation-And-Leadership/Population-
Health-Management/Current-Activities/Integrated-Care-Management-Program.aspx (ac-
cessed December 24, 2017) and https://www.advisory.com/research/market-innovation-center/
the-growth-channel/2017/04/health-disparities (accessed December 24, 2017).

health care at home. Another study found that using the teach-back method
at the appointment desk reduced no-shows by 15 percent. In short, said
Hudson, while health literacy is not a magic bullet for controlling health
care costs in the United States, there are many health literacy interventions
that can produce significant cost savings.
Behavior change is also part of the business case, and Rikard discussed
several examples that were not in the peer-reviewed literature. One study
found that when new mothers-to-be received What to Do When Your Child
Gets Sick, they used the emergency department less frequently because they
had an understandable resource at hand that they could use when their chil-
dren were sick. In another study, heart failure patients received phone calls
asking patients to call in and report their weight. Over the first 2 weeks,
the percentage of patients who reported their weight daily increased from
28 percent to 36 percent, and more importantly, these patients who called
in lost weight. A third study found that when an adult education class
added health literacy into the curriculum, the adult learners increased their
knowledge about health and what they needed to do regarding preven-
tion. “These are one-off studies, but we see that there are these behavioral
changes that happen as a result of maintaining a health literacy practice,”
said Rikard.
When Hudson and his colleagues looked at health outcomes, one
of the promising new developments they found was the increased use of
multimedia programs and associated YouTube videos as mechanisms to
provide information to people in forms they can understand. One study, for
example, found that individuals who used a video education program were
more likely to have controlled blood pressure, regardless of their blood
pressure control status, than were those who relied on written informa-
tion. Similarly, video education programs benefitted individuals with other
chronic conditions, such as producing improvements in glycemic control in
patients with diabetes. Combining online interactive media with automated
phone calls produced a 15-day delay in readmission for chronic obstruc-
tive pulmonary disease and a 69 percent reduction in length of stay when
patients did have to be readmitted to the hospital. Another study found that
a patient navigator program for individuals with heart failure produced a
15.8 percent decrease in unplanned readmissions. Hudson noted that the
Centers for Medicare & Medicaid Services (CMS) is now penalizing health
systems for readmissions and that private insurers are likely to follow suit,
so hospitals are desperate for approaches to reduce readmissions, such as
Project RED (Re-Engineered Discharge), which increases support for people
upon discharge from the hospital.
In some cases, said Hudson, realizing improvement can require some
unexpected interventions. His hospital, for example, has been struggling
with getting its congestive heart failure patients to report their daily weights.

The first issue, it turns out, was that many of these patients did not have
a scale at home or know how to use it. Even after providing a scale and
testing their knowledge about how to use it, the hospital staff was still
having trouble getting them to report their daily weight, which turned out
to be because they were being asked to report daily weight change, which
required them to do math. When the patients were asked to report daily
weight instead, compliance improved by 18 percent. Understanding these
little challenges and being able to put supports in place, said Hudson, can
help patients overcome these challenges.
Hudson said he was surprised how little literature there was that tries
to understand the causal relationship between health literacy and medical
errors. Perhaps the one exception is there have been quite a few studies
showing that health literacy improves medication adherence and reduces
medication errors (NASEM, 2017). There are clear guidelines, for example,
to use milliliters instead of teaspoons and tablespoons to stop people from
using kitchen cutlery to measure liquid medication, and these guidelines
have made a difference as far as reducing dosing errors. Hudson noted
that the U.S. Department of Veterans Affairs (VA) developed and adopted
a patient-centered medication label format to improve the quality of care
for veterans.
One of the statistics that Hudson quotes whenever talking about health
literacy is that patients forget between 40 and 80 percent of what the
doctor tells them as soon as they leave the doctor’s office. More worrisome,
though, is the fact that half of what patients do remember, they remember
incorrectly (Kessels, 2003). “That is where those mistakes are going to be
made that are really going to impact not only the health system and cost,
but the lives and quality of life of those patients,” said Hudson. He also
commented that the United States has a mixture of health care systems. “We
have socialized medicine in the VA and the Indian Health Service. We have
employer-sponsored health plans. We have a national health insurance,
Medicare, like they have in Canada, and trying to make these all work can
be very challenging,” he said.
In his opinion, the VA is leading the way when it comes to improving
the quality of care, and while the VA has its own challenges and issues,
one big advantage is that its EHR can communicate across the entire VA
system. As an aside, Hudson noted his hospital uses one vendor’s system
and the other hospital in town uses a second system, and the result is that
the two hospitals must fax patient information between them. Referring
to the VA’s patient-centered medication label, he said the label is currently
being tested and he is curious about whether it will make a difference in
reducing medication errors. He also noted that the one study he found that
looked at the relationship between health literacy and costs was conducted
at the VA (Haun et al., 2015). That study found that in a population of

more than 93,000 veterans, the ones with marginal to low health literacy
spent $143 million more over a 3-year period compared to those who had
adequate health literacy.
For the care experience, the authors of the commissioned paper found
an unpublished study showing that 100 percent of the hospitals employing
commercially developed and implemented video programs scored higher
on the Hospital Consumer Assessment of Healthcare Providers and Sys-
tems (HCAHPS), the patient experience survey CMS requires from all U.S.
hospitals. This survey may serve as a proxy for patient satisfaction. That
satisfaction is enhanced, said Rikard, by coupling video programming with
telephone-based education and support services. He also explained that
health literacy solutions do not have to be extensive or expensive. As exam-
ples, he cited rewording imaging and other diagnostic test reports, stan-
dardizing emergency department instructions, employing audio-recorded
messages, and encouraging patients to bring a family member or friend
to an appointment, all of which have been found to improve the patient’s
experience and satisfaction. The crucial step, said Rikard, is to meet people
where they are in terms of their health literacy.
Turning to the ethical case for health literacy (see Figure 3-2), Hudson
said that health literacy is the right thing to do. He referred to Martin
Ratermann’s challenge in the workshop’s first session to not be an industry
that does not take care of its customers and does not communicate well
with its consumers. “We need to get past that and become more customer-
oriented and customer-focused,” said Hudson.
FIGURE 3-2 The ethical case for health literacy.

SOURCE: As presented by Stanton Hudson and R. V. Rikard at Building the Case
for Health Literacy: A Workshop on November 15, 2017.

Regulations play a significant role in making the ethical case, as well

as the business case, Hudson explained. CMS regulations for home health
agencies and long-term care facilities, for example, require that information
be provided in ways the patient can understand and in culturally appropri-
ate forms. A bigger factor, however, will be the requirement in the Medicare
Access and CHIP (Children’s Health Insurance Program) Reauthorization
Act that states that half of all reimbursement for those two programs will be
through value-based payment arrangements, either through the merit-based
incentive payment system or one of several alternative payment models.
One aspect of these new reimbursement models is that they will pay for
health literacy activities, which Hudson called a promising development.
For Hudson, one of more interesting demonstration projects enabled by the
ACA bases physician bonuses on HCAHPS scores, which means the con-
sumer has a voice in how much the doctor and the health system get paid.
Another promising development is that most state Medicaid programs—42
by his count—are using an alternative payment model, such as medical
homes, to reimburse physicians and incentivize effective quality care. One
effect of these policy changes, said Hudson, is that they will force hospitals
to switch from a model that tries to keep beds filled to one that has to keep
people out of the hospital, which helps create a true health care system
rather than the current sick care system.
Health equity is another aspect of the ethical case, explained Rikard,
and from a health literacy perspective, health equity means that everyone
has equal access to health information on which they can act. In many
cases, he said, people who do not have health information also lack access
to health care services, and even if they have access, the information might
be understandable by some, but not all. In addition, he added, the 2016
CMS Quality Strategy includes two goals related to health literacy and
health equity.3 Goal 1 calls for improving safety and reducing unnecessary
and inappropriate care by teaching health care professionals how to better
communicate with people who have low health literacy and by more effec-
tively linking health care decisions to person-centered goals. Goal 3 calls for
enabling effective health care system navigation by empowering individuals
and families through educational and outreach strategies that are culturally,
linguistically, and health literacy appropriate
In Hudson’s opinion, the implications of health literacy for health
policy and practice are best laid out in the 2012 Institute of Medicine dis-
cussion paper Ten Attributes of Health Literate Health Care Organizations
(Brach et al., 2012). Once the case for health literacy is made, he said, this
3 See https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/
QualityInitiativesGenInfo/Downloads/CMS-Quality-Strategy.pdf (accessed December 24,

2017).

paper, “lays out the road map for what facilities can do to really address
that case and make a difference.” It is his hope, he said, that someday every-
thing measured in health care around health literacy will be based on these
10 attributes, and that the health care enterprise will come to realize that
these 10 attributes speak to the provider experience as much as the patient
experience. As an example, he recalled hearing a presentation several years
ago by Laura Noonan from the Carolinas HealthCare System showing that
physicians who integrate the teach-back method into their practice had
to spend less time with patients because they were using less jargon that
needed to be reexplained.
Rikard and Hudson concluded their summary of the commissioned
paper by listing recommended areas for future research. These included
• Assess the savings from long-term outcomes and behavior change,

conduct longitudinal studies of broad-based health literacy activities.
• Change health behaviors and health outcomes, study whether pub-
lic health literacy provides an upstream payoff.
• Ensure that information and communication technologies translate
into better health outcomes, examine the effect of eHealth literacy
interventions on health outcomes.
• Understand the direct relationship between health literacy and
medical errors, examine the causal link between health literacy
and adverse events.
• Examine the link between health literate organizations and
provider–patient communication, develop evidence on the direct
relationship between health literacy and provider satisfaction.
• Achieve health equity, focus on the effect of the health care power
dynamic on health equity and opportunities for people to achieve
a healthy life.
In thinking about health equity, which is where Hudson said his inter-
ests lie, he referred to the illustration showing the difference between equal-
ity and equity (see Figure 3-3). “Equality is where we give everyone the
same box to see over the fence, and equity is where we provide different
supports to patients,” he explained. “That is where we are now, identifying
our patients that struggle and trying to give them a little extra support.”
Where he would like to see the health care system move to is a place that
recognizes the structures and policies that create inequity, Hudson said:
It is the fact that we do not have EHR interoperability, so we have to rely

on patients for their information. It is the fact that we have siloed and
disjointed health care, which is something that stares patients in the face.
It is the fact that we do not have transparency of information. We need to

EQUALITY EQUITY JUSTICE

�STORY�BASED DD lntera�tion Institute R
w
th e 4th box . Com oa
OrigNlillushation
�STRATEGY forSocial Change byAngusMaguo<e
FIGURE 3-3 The difference between equality (left), equity (center), and eliminating
the structures and policies that contribute to inequity.
SOURCES: Image presented by Stan Hudson and R. V. Rikard at the Building the
Case for Health Literacy workshop, adapted from Angus Maguire, Interaction
Institute for Social Change, and from Craig Froehle.
tear down those systems and recreate them so that people can see through
that fence. Then we do not have to worry about providing special support,
and we create an equitable system for everybody to be able to navigate and
get in the game, so to speak.
DISCUSSION
Terry Davis from the Louisiana State University Health Sciences Center
in Shreveport opened the discussion by commenting on the use of auto-
mated call prompting. In her recent experience, automated text messages
are producing better responses from patients because so many people have
stopped answering their phones when they do not recognize the phone
number that is calling them. She also remarked that while research has
largely focused on what the system must do and some on what the patient
must do, there is little in the literature about family caregivers; but as
society ages, family caregivers are going to play an increasingly vital role
in health literacy.
Lawrence Smith from Northwell Health stated that the health care
system needs to teach patients two things: enough information about their
illnesses so they can be legitimate partners with the health care system
in the appropriate management of their illness, and equally important,
how the health care system works. “In fact, if the patients don’t under-

stand how the health system works,” said Smith, they will be “endlessly
surprised” by the “traps” they will encounter. He expressed concern about
the suggestion that the language of imaging reports and the like should be
changed so patients can understand them, when in fact, the precision of
medical terminology in a report intended to go from one expert to another
should not be diluted to the level of a lay person. “I would strongly object
to someone changing the way a neuroradiologist reports findings on an
MRI [magnetic resonance imaging] scan to a physician who ordered it look-
ing for specific things,” said Smith. Perhaps what is needed, he suggested,
is a summary that provides the take-home message for the patient who is
going to look at the medical record. He noted that this would require “a
tremendous culture change, and I do not know whether medicine is ready
or not.”
Smith then commented that patients who are mad at the health care
system need to realize that the physicians working in that system are also
unhappy. Each year, he said, Northwell Health surveys its 18,000 physi-
cians and asks if they think about leaving the practice of medicine, and if so,
why. Every year, the top reason why physicians think about giving up their
practices is frustration with the EHR. In fact, said Smith, the level of patient
dissatisfaction with the health care system pales in comparison to the dis-
satisfaction physicians express about the EHR. He reminded the audience
that the EHR was designed for chief financial officers, not physicians, and
relayed the cynical message he got from the vice president of one of the
major EHR vendors, which was his company did not care about doctors
or patients, because if the finance department was happy, they would keep
buying this vendor’s products for their hospitals. “We are talking about an
entire system that was designed to make everyone miserable except a very
select few people,” said Smith.
As a final comment, Smith said that in his opinion, efforts to conduct
randomized trials on interventions that involve partnering with patients and
caregivers to reconstruct the health care system are perhaps misplaced. His
suggestion was to find the natural experiments that have already take place
and to identify the physicians who are already great communicators and
health literacy teachers and find out how their patients have done.
Hudson responded to those observations with one of his own, which
is that the system largely blames the patient for being health illiterate. “We
expect individuals to have these skills, but we do not teach them,” he said.
“If we truly wanted to teach health literacy, we would teach it in elementary
and secondary school along with reading, writing, and math as a life skill
everyone needs.” In fact, when someone asked him the night before the
workshop for the most innovative study he found, he singled out a study in
which the researchers were “democratizing medical education” by taking
what medical students would learn and including it in elementary and sec-

ondary education. Until that happens on a large scale, however, patients are
not going to have the necessary health literacy skills. “When you are learning
on the fly, when you are sick, in pain, or worried about a family member,
that is not the most conducive learning environment,” said Hudson.
Regarding Smith’s concern about rewording imaging reports, H udson
clarified that the idea is not to reword those reports but to provide a
translation into a more understandable form for patients. The challenge
will be to develop the necessary translation tools that will take the report
designed to convey information from one expert to another into language
suitable for the patient who is going to look at their medical record or use
OpenNotes. The crucial step in developing such tools will be to involve
patients in end-user testing. “The golden rule of health literacy is to know
your audience and to test and develop with your audience,” said Hudson.
“That is something the health system does not do like other industries.”
Kim Parson from Humana reiterated Hudson’s message that the health
care system must stop blaming patients for what they do not know and
take responsibility for conveying information in a way that is suitable for
patients. “In my organization, we like to say, ‘It is not my fault, but it is
my problem,’ and I think that is how we have to approach things.” She
also agreed with Smith that it is right for two experts to use language that
conveys information precisely when communicating between themselves
and that it is just as right to recognize that not everyone is going to under-
stand that language. “Therefore, it is incumbent upon the system to design
and co-create with the people who are going to be the receivers of this
information, and for those that are going to be navigating the system,”
said Parson. “End-user testing is great, but I think we should start with the
user at the beginning.”
Terri Ann Parnell from Health Literacy Partners asked Hudson if the
videos used in the video-based interventions all came from the same com-
pany, which they did. Hudson noted that one thing this company does
better than others is that they partner with researchers to make sure they get
good evaluation data. This company also provides fact sheets and reports
that document the effectiveness of its products, and it also reports when the
videos have no effect and need further work. Parnell added that the videos
that she has used from this company are also noteworthy in that they use
language that is culturally appropriate.
In response to Parnell’s subsequent comment that medical schools are
now doing better at teaching health literacy skills to medical students,
Hudson said the problem is that similar efforts are not being made with
attending staff and preceptors. “Students come out all gung-ho to use the
teach-back method and they immediately get shut down by a doctor not
understanding what they are doing, saying they do not have time for it,”
said Hudson.

Laurie Francis from the Partnership Health Center remarked that the
United States does not have a true health system because every organization
and every state is different, which creates challenges. She also noted that the
discussion about health literacy does not include team-based care as often as
it should. Today, with patient-driven, patient-centered, team-based care, the
doctor does not have to do everything, and since most doctors are not great
communicators, perhaps more effort should be spent identifying those team
members who are good communicators and training them in health literacy
techniques. She then noted that teaching physicians motivational interview-
ing, health literacy, and power-sharing skills is an effective way of retaining
physicians. “Physicians really enjoy it once they learn how to ask questions,”
said Francis. She then asked if the VA studies that Hudson and Rikard found
look at whether the cost savings were associated with health literacy alone
or if the culture of the VA had an effect as well. Hudson replied that the
VA study he cited was a 3-year retrospective study in which patients took
a test to quantify their health literacy level and then the patients’ records
were examined retrospectively to look at direct medical costs. “They did not
extrapolate as much on other factors that could be playing out, and they
were just trying to tie it to health literacy,” said Hudson.
Commenting on the idea of bringing a family member to medical
appointments, Wilma Alvarado-Little from the New York State Department
of Health pointed out that family members should not serve as interpreters
because that robs the family member of their primary purpose, which is to
provide support. She also reminded the workshop that doctors and nurses
are not the only providers who see patients. Physical therapists, speech
therapists, and other health care professionals who enter a patient’s room
can be a provider who can be tapped to provide health literate information.
She then asked the two speakers if any of the studies looking at performance
measures did so through the lens of community-based organizations that do
not provide specific direct services but do affect patients and the partners
of those organizations. Hudson replied that the commissioned paper does
include studies that looked at public health literacy interventions. He also
noted that the Canyon Ranch Institute is using quality-adjusted life-years
and similar measures to measure the effectiveness of interventions on cost
and can identify extensive cost savings in that manner. One challenge, said
Hudson, is that most of the research is focused on direct costs. “What we
need is a longitudinal study that not only looks at multiple interventions at
once, because we usually do not do health literacy one thing at a time, but
also looks at indirect cost savings,” he said. “We do not talk about the lost
years of productivity that result from medical errors and the people who
die from them, and that is a huge cost to society.”
Stacey Rosen from Northwell Health asked the speakers if they found
any pilot studies or reports on bringing health literacy education to elemen-

tary, middle, and high schools. Hudson replied that he and his colleagues
only found one study, but they were not looking for them either since their
focus was on the business case. Rikard mentioned there are studies of that
type underway in Europe. Health Literacy Europe, he said, is implement-
ing health literacy curricula in Europe’s primary and secondary schools and
studying what happens to those children over time.4
Audrey Riffenburgh from Health Literacy Connections noted that
she recently met a professor at the Colorado State University College of
Veterinary Medicine and Biological Sciences who told her that the veteri-
nary students all receive 50 hours of health communication skills as part
of the standard curriculum. This faculty member told Riffenburgh that she
and her colleagues have made two observations regarding this training. The
first was that the clients of the veterinarians who had received this train-
ing were more likely to be repeat clients because they felt good about the
communications they had with the veterinarian (Shaw et al., 2012). The
second observation was that the clients were more likely to be compliant
with treatment recommendations for their animals (Kanji et al., 2012).
Jay Duhig from AbbVie Inc. asked the speakers to discuss the barriers
to conducting the future research they suggested. Rikard replied that the
main barrier is there are no incentives for people, particularly from differ-
ent fields, to work together on long-term projects. The National Institutes
of Health, for example, does not have grant mechanisms to fund cross-
discipline, long-term projects. Pleasant then asked what funders could do
to address this barrier. Hudson replied that one challenge specific to health
literacy studies is that many are funded by the Patient-Centered Outcomes
Research Institute (PCORI), and the legislation authorizing PCORI does
not allow it to fund cost-effectiveness research. While that may be a special
case because that funder was created by Congress, Hudson said that giving
more latitude to researchers to explore the breadth of the issue would be a
key first step. Rikard added that he would start approaching large nonprofit
institutions and foundations to interest them in the importance of health
literacy in improving the health of the nation.
Casey Quinlan from ThinkProgress asked how much of a barrier is
created by the status quo in a $3.5 trillion industry with little incentive to
change and if it would be possible to make faster progress by involving
patient communities in reform efforts. Hudson replied that he would like
to see more funding for projects that bring in community investigators as
equal members of the team and that involve the community in the planning
process for these projects. In his opinion, doing so would save time and
money by skipping the need for a redesign phase when a poststudy end-
user group finds a problem with an intervention. He noted that the field is
4 See https://www.healthliteracyeurope.net/hl-and-eu-policy (accessed February 15, 2018).

getting better at engaging with the community and valuing the knowledge
that community members bring to studies when they are involved at the
beginning rather than the end of a project. Rikard added that a study he
is working on regarding the water crisis in Flint, Michigan, is using paid
community investigators who have made important contributions to the
study design.
With the last comment of the discussion period, Cindy Brach from
AHRQ commended the speakers for including the ethical case for health
literacy in their paper because even if an intervention does not save money,
patients have a right to communicate with and understand their health care
providers. One part of the business case that was not mentioned, she said,
concerns market share and patient loyalty. She suggested that these should
be included in the business case because patients are more likely to return
to a health care organization that communicates clearly. She also noted
that changes in payment policies are providing new incentives that reward
outcomes and positive patient experiences; these changes should become
important pieces of the business case.

Why Health Literacy?
The third session of the workshop featured two presentations on why

health literacy is important to the health care enterprise’s stakeholders.
Cathryn Gunther, vice president for global population health at Merck
Sharp & Dohme Corp. (Merck), spoke about the importance of health
literacy from the perspective of a pharmaceutical company, and Bernard
Rosof, chief executive officer of the Quality HealthCare Advisory Group,
discussed the role of health literacy in achieving the Quadruple Aim. An
open discussion with the panelists followed the two presentations.
A PHARMACEUTICAL COMPANY PERSPECTIVE

ON WHY HEALTH LITERACY MATTERS1
One piece of good news about health literacy, said Gunther, is it is get-
ting increasing attention around the globe. Several European countries, for
example, found they were not getting the degree of comprehension about
health topics that they had anticipated and are now starting to address this
problem. Asian countries are also starting to address health literacy for the
first time. “There is enormous opportunity around the globe to improve
comprehension, and I would suggest all of us as key stakeholders in the
health industry have a responsibility to address it,” said Gunther.
1 This section is based on the presentation by Cathryn Gunther, vice president for global
population health, Merck Sharp & Dohme Corp., and the statements are not endorsed or
verified by the National Academies of Sciences, Engineering, and Medicine.
29

Why is health literacy so important to Merck? The reason, said G unther,

is that the number one goal of a pharmaceutical company is to get the right
medication to the right individual in a way that is comprehensible, that fits
into the total care plan, and that helps the patient feel empowered regarding
his or her health care. Reflecting on the health literacy experiences she has
had during her career, both within the pharmaceutical industry and outside
of it as a consultant, she said they all come back to appreciating the context
of a patient’s life—where they are, where they are coming from, and the
environment in which they live—and meeting them where they are.
The late George Merck, son of the company founder and company
president, embedded the patient experience into the center of the com-
pany’s philosophy when he said, “We try never to forget that medicine
is for the people; it’s not for the profits. The profits follow, and if we’ve
remembered that, they have never failed to appear,” explained Gunther
before listing some of the ways in which the pharmaceutical industry has
contributed to society—the development of medications that turned HIV/
AIDS from a death sentence to a treatable chronic illness; vaccinations for
measles, mumps, rubella, diphtheria, polio, and other childhood diseases;
and more recently, immunotherapies that are changing the prognosis for
many c ancers. Gunther said it is important to appreciate that Merck is a
research-intensive biopharmaceutical company, one that understands that
a new drug has no real value unless the person taking that drug under-
stands what that medication is going to do for them so they can take
ownership of their own care and adhere to the appropriate medication
schedule. Health literacy, she added, is a big part of realizing that value,
and the current objective at Merck is to focus a collaborative effort across
the o rganization—research, manufacturing, and sales and marketing—to
ensure that health literacy is an embedded theme throughout the company.
From that perspective, patients must be treated as partners in efforts to
help them gain the knowledge they need to take their medications properly.
Better yet, everyone, not just those who have a health issue, need to be
partners in the effort to expand health literacy to make it part of learning
to live a healthy life. As a sponsor for global population health efforts,
Gunther says she is interested in health creation, health promotion, and
prevention; to achieve those, health literacy should start at home. Often,
she said, health literacy starts with the women who are health providers for
the family, and sometimes the community and schools as well.
She then asked the workshop participants to imagine a person who,
along with 70 percent of the American population, is either overweight or
obese, and who is among the close to 6 percent of the population that has
diabetes and three or more other medical conditions, such as hypertension,
high cholesterol, sleep apnea, joint issues, and depression. That person, she
said, may be taking as many as 12 different medications, and it is nearly

WHY HEALTH LITERACY? 31
impossible to achieve what used to be called “compliance” and has now

been softened to “adherence.” “It is difficult for any individual to com-
prehend that and take all those medications as prescribed, assuming the
prescription and diagnoses are accurate,” said Gunther.
Many opportunities exist for communicating with patients and max-
imizing their comprehension about a medication, Gunther said. These
opportunities arise as early as the start of a clinical trial when patients
are given consent to join the trial, as well as when the company creates
materials about dosing that are provided to individuals enrolled in trials,
conducts targeted messaging to underrepresented populations as a means of
recruiting trial participants from those populations, and posts lay summa-
ries of each trial on a public website.2 One emerging area of contact occurs
when the company solicits patient input into trial design and outcomes.
Opportunities for engagement continue after a product is approved.
For example, when the company drafts the product label—the information
that accompanies every medication when a patient picks it up from the
pharmacy—it works with focus groups comprising individuals from the lay
community who help refine the label’s language. The company also tests
comprehension with panels of lay individuals, at least 25 percent of whom
are on the lower end of the health literacy scale. “We consistently achieve
about 90 percent comprehension across all levels of health literacy,” said
Gunther, who described this approach as a new paradigm for designing
patient inserts. She noted, too, that Merck has engaged in its own internal
health literacy activities to make sure its 65,000 employees can understand
the health-related benefits the company provides.
Antibiotic resistance is an important public threat that results, in part,
from patients failing to understand the importance of adhering to the
prescribed medication regimen. Gunther said that some patients believe
they become resistant to the antibiotics, not that the bacteria do, because
of inappropriate use of the drug. Patient comprehension, she said, plays a
critical role in managing antimicrobial resistance and improving steward-
ship. Zika is another area in which the company recently engaged in a
health literacy effort. In this case, Gunther and her colleagues worked with
the Centers for Disease Control and Prevention Foundation to ensure that
women of childbearing age in Puerto Rico had the necessary information
to make an educated decision about the types of birth control they would
choose to delay having a child during the Zika outbreak there.
Lastly, Gunther said:
From a global policy perspective, working with countries and policy

makers around the world, we have made significant contributions to the
2 The website is anticipated to be operational in Europe in early 2019.

research that’s being done in Europe as well as in the United States, be-
cause we feel that health literacy is an incredibly important issue and one
worth investing in.
ACHIEVING THE QUADRUPLE AIM: HEALTH LITERACY

INTERVENTIONS AS AN ESSENTIAL COMPONENT3
In delivering health care, communication is a key ingredient, said Rosof,
and achieving the Quadruple Aim of better care, improving the health of
the community and population, affordable care, and patient and health care
team satisfaction is not possible without a health literate population. As
the delivery of health care continues to evolve in the United States, he said,
health literacy can serve as an innovative and disruptive force that creates a
new value equation for health care that includes the Quadruple Aim. “Let
us think about health literacy that way, as a really disruptive technology
to achieve our goal,” said Rosof, “one supported by science and patient
experience and one designed to disrupt the old habits and existing ways of
thinking that get in the way of making progress.”
The current design of today’s health care system requires patients and
families to possess and demonstrate multiple skills, including understanding
and giving consent, interacting with health professionals, and applying health
information to different situations in a variety of life events. In that context,
health literacy is the degree to which individuals have the capacity to obtain,
process, and understand the health information needed to make appropriate
health decisions. Health literacy, said Rosof, can only occur when system
demands and complexities align with individual skills and abilities.
Two Institute of Medicine reports—To Err Is Human: Building a Safer
Health System (IOM, 2000) and Crossing the Quality Chasm: A New
Health System for the 21st Century (IOM, 2001)—detailed why health lit-
eracy is important, said Rosof. He noted that the only population-level study
of health literacy skills conducted to date, the U.S. Department of Educa-
tion’s National Assessment of Adult Literacy,4 found that only 12 percent of
U.S. adults are health literate enough to understand and use health informa-
tion effectively. “They may fail to understand critically important warnings
on the label of over-the-counter medications or find it difficult to define a
medical term, let alone negotiate the payer system and try to understand
insurance,” said Rosof. In addition, some 24 million Americans, or nearly
9 percent of the U.S. population, are not proficient in English.
3 This section is based on the presentation by Bernard Rosof, professor of medicine, Zucker
School of Medicine, Hofstra/Northwell, and chief executive officer, Quality HealthCare

Advisory Group, and the statements are not endorsed or verified by the National Academies
of Sciences, Engineering, and Medicine.
4 See https://nces.ed.gov/naal (accessed December 25, 2017).

Regarding the priority areas for national action identified in Crossing

the Quality Chasm to transform health care quality in the United States (see
Figure 4-1), Rosof said quality is clearly a systems property. He noted that
the priority areas did not focus on improving treatments through biomedi-
cal research or technological innovation, but instead focused on ways to
improve the delivery of treatments and align system demands and priorities
with individual skills and capabilities, the true definition of health literacy.
He noted that the priority areas include acute care, preventive care, pallia-
tive care, and chronic care, all areas that should be familiar to the health
literacy community, as well as cross-cutting systems interventions such as
care coordination, self-management, and patient and family engagement
that all require the presence of a health literate population.
The cycle of crisis that characterizes health care delivery today (see
Figure 4-2) is all too familiar, said Rosof. One of the drivers of this cycle
is health illiteracy, which leads to patients taking their medications incor-
rectly or not understanding the importance of follow-up appointments. In a
FIGURE 4-1 Priority areas for national action to transform health care quality in
the United States.
SOURCE: As presented by Bernard Rosof at Building the Case for Health Literacy:
A Workshop on November 15, 2017.

Sick patient
seeks Staff at doctor’s
medical help office give patient
Patient is simple forms and
discharged; no offer to help fill
one follows up them out
with patient
Doctor explains
Hospital staff patient’s
give patient a condition and
new treatment treatment plan
plan, referrals, using medical
and jargon
prescriptions;
staff do not
confirm patient’s Doctor writes
understanding multiple
prescriptions and
referrals for tests
Patient’s
condition
worsens and
Doctor does not
patient goes to
confirm patient
the emergency
understanding
department
Staff send patient home

No one follows
with a complicated set of
up with patient
written instructions
= Direct action by office or hospital staff
= Direct action by doctor

= Effect on patient
FIGURE 4-2 A patient’s experience of the cycle of crisis care in the absence of
health literacy.
SOURCE: Adapted from a presentation by Bernard Rosof at Building the Case for
Health Literacy: A Workshop on November 15, 2017.

health literate patient experience (see Figure 4-3), the scheduler reminds the
patient about coming back to the office, the physician and other members
of the medical team explain things in a way that leads to comprehension,
discharge information and medication instructions are easy to understand;
and the result is a well-managed patient who does not need to return to the
emergency department and is not readmitted to the hospital. Rosof noted
that the way a team functions in the medical office is important in deliver-
ing health literate care.
Health literacy arrived at a tipping point, said Rosof, with the develop-
ment of several new federal policies, including the ACA, the U.S. Depart-
ment of Health and Human Services’ (HHS’s) National Action Plan to
Improve Health Literacy, and the Plain Writing Act of 2010. It was then
that health literacy was ready to move from the margins to the mainstream
of health care, and become a national priority for the U.S. population to
become health literate as a means of improving health care and health
for all, Rosof said. The National Action Plan to Improve Health Literacy
(ODPHP, 2010) is based on two principles: that everyone has the right
to health information that helps them make informed decisions, and that
health services should be delivered in ways that are understandable and
lead to health, longevity, and good quality of life. The Plain Writing Act of
2010 requires federal agencies to write documents clearly so the public can
understand and use them. “I’ll leave that to your judgement as to whether
that has actually occurred,” said Rosof.
One component of the ACA is that it required the Secretary of HHS
to establish a national quality strategy that would achieve what was
then called the Triple Aim, before the provision to improve patient and
health care team satisfaction was added. The National Quality Strategy
is an iterative, transparent, consultative, and consensus-building process
that continues to be updated on a regular basis. The six priorities of
the National Quality Strategy include health and well-being; prevention
and treatment of the leading causes of mortality; providing person- and
family-centered care; improving patient safety; engaging in effective com-
munication and care coordination; and making care affordable. “If I
had known enough about health literacy when we wrote the National
Quality Strategy, I would have changed effective communication to health
literacy,” said Rosof, who at the time chaired the committee that drafted
the National Quality Strategy.
As far as who is at risk for low health literacy, Rosof said that men
are at greater risk than women and that African Americans and Native
Americans are at greater risk than whites and Asian Americans. Hispanics
have the lowest skills among minority populations, and people 65 years
and older have the lowest level of health literacy overall. As was discussed
earlier in the workshop, patients with limited health literacy experience

Sick patient
seeks Staff at doctor’s
medical help office give patient
Patient is simple forms and
discharged; no offer to help fill
one follows up them out
with patient
Doctor explains
Hospital staff patient’s
give patient a condition and
new treatment treatment plan
plan, referrals, using medical
and jargon
prescriptions;
staff do not
confirm patient’s Doctor writes
understanding multiple
prescriptions and
referrals for tests
Patient’s
condition
worsens and
Doctor does not
patient goes to
confirm patient
the emergency
understanding
department
Staff send patient home

No one follows
with a complicated set of
up with patient
written instructions
= Direct action by office or hospital staff
= Direct action by doctor

= Effect on patient
FIGURE 4-3 A patient’s experience with health literate care.


lower-quality communication, increased confusion regarding medical termi-

nology, and insufficient time to express concerns. They fail to receive clear
explanation and are less likely than others to use preventive services, all of
which, Rosof explained, translates to poor outcomes. “When you begin to
discuss social determinants of health associated with health literacy, you see
that there are some areas of the United States where mortality and expecta-
tion for life may be 20 years less,” said Rosof.
A learning health system to better inform health literate practices
and achieve the Quadruple Aim could improve this situation. A learn-
ing health system is one in which progress in science, informatics, and
care culture align to generate new knowledge as an ongoing, natural by-
product of the care experience, and seamlessly refines and delivers best
practices for continuous improvement in health and health care (IOM,
2007). “Building a learning health system around the concept of health
literacy will enable an environment that has rapid-cycle learning and
knowledge dissemination in which health literate research is continuously
translated into practice and the care experience,” said Rosof. In simpler
language, he explained, the health care system must take advantage of
going digital and use the data available to compare outcomes, learn, and
improve those outcomes. The key, he said, is to figure out how to do this
routinely to create a learning health system. “Building a learning health
system around the concept of health literacy will enable us to do this more
efficiently,” he added.
Among the principles of health literacy that need to be articulated and
emphasized is that of universal precautions (see Figure 4-4). Just as hand-
washing has become a universal precaution in infection control based on
the assumption that every person in a health care setting is carrying a poten-
tially dangerous microorganism with them, so too should it be assumed that
every patient may have limited health literacy. “Health literacy is a state,
not a trait, and everyone benefits from clear communication,” said Rosof.
He explained that if there is a prepared, proactive, health literate health
care team and an informed, health literate, activated patient and family, the
result is a productive interaction and improved outcome.
AHRQ has developed a universal precautions toolkit.5 The 20-tool
toolkit, said Rosof, includes a quick start guide, a path to improvement,
sample forms, PowerPoint presentations, and worksheets. It also includes
tips for communicating clearly, lessons on the teach-back method, and the
brown bag medication review, which encourages patients to bring all of
their medications, including over-the-counter medications, to the doctor’s
office. None of this happens, however, in the absence of putting the patient
5 See https://www.ahrq.gov/professionals/quality-patient-safety/quality-resources/tools/literacy-
toolkit/index.html (accessed December 25, 2017).

FIGURE 4-4 A universal precautions approach in a health literate care model.

first and remembering that patient feedback is important to make the pro-
cess work. The Joint Commission has weighed in, Rosof added, by stating
the safety of patients cannot be assured without mitigating the negative
effects of low health literacy and ineffective communication on patient care.
The 10 attributes of a health literate health care organization (Brach et
al., 2012) are critical to creating a health literate health care organization,
which makes it easier for people to navigate, understand, and use informa-
tion to take care of their health, but it requires a charter for organizational
professionalism (Egener et al., 2017) in order to develop, said Rosof. The
charter for professional organizations includes four domains: patient part-
nership, organization of culture, community partnership, and operations
and business practices. These domains, said Rosof, require communication
in a health literate manner.
Rosof then noted 2 of the 10 attributes. Attribute 1 states that a health
literate organization has leadership that makes health literacy integral to
its mission, structure, and operations by not only making clear and effec-
tive communication a priority, but assigns responsibility for health literacy

oversight, sets goals for health literacy improvement, and allocates fiscal
and human resources to that effort.
Attribute 2 characterizes a health literate organization as one that
integrates health literacy into planning, evaluation measures, patient safety,
and quality improvement. “Health literacy and communication have to
be measured to be certain that it is happening in the organization,” said
Rosof. “It has to be integral to your quality improvement program, to your
performance improvement program, and to the efforts on patient safety.”
The commissioned paper presented at the workshop, said Rosof,
included published outcomes, all of which demonstrate clear improvements
in a health literate organization. These included
• A congestive heart failure self-management program, which reduced

hospitalization rates and mortality by 35 percent (Berkman et al.,
2011a);
• A diabetes self-management program using health literacy strate-
gies in patients with limited literacy achieved success of 42 percent
versus 15 percent without such strategies (Rothman et al., 2004);
• A randomized controlled trial of the “reengineered discharge”
reduced rehospitalization by 30 percent (Jack et al., 2009);
• Plain language, pictogram-based medication counseling produced
fewer medication errors (5.4 percent versus 47.8 percent) and greater
adherence (38 percent versus 9.3 percent) (Yin et al., 2008); and
• Improving providers’ communication skills resulted in patients
having higher colon cancer screening rates than a control group
(55.7 percent versus 30 percent) (Ferreira et al., 2005).
Rosof noted that many members of the American Hospital Insurance

Plan have undertaken explicit health literacy initiatives to improve patient
outcomes. One such study, for example, estimated the effect of health lit-
eracy on selected health outcomes, controlling for education, income, race,
and language, and found significant improvements in patient outcomes (see
Table 4-1), all of which should translate into greater income for a health
care institution. Rosof ended his presentation by drawing the following
conclusions:
• Best care and improved population health requires adherence to

health literate principles.
• Cross-cutting interventions to achieve the quality goals of the
National Academy of Medicine and the National Quality Strategy
require bilateral health literate communication and an alignment
of system demands and complexities with individual skills and
capabilities.

TABLE 4-1 Estimated Effect of Health Literacy on Selected Health

Outcomes, Controlling for Education, Income, Race, and Language
Population Average Impact of Moving from Low-
Outcome Population (County Level) to High-Literacy Community
Avoidable ED visit Commercial 44.1 per 1,000 Reduction of 4.3 per 1,000
rate UHC (−10.1%)
Avoidable Commercial 5.4 per 1,000 Reduction of 1.0 per 1,000
hospitalization rate UHC (−18%)
Medication Commercial 81.4% adherent* Increase of 2.4 percentage
adherence rate DM points in adherence (+3.1%)
Readmission rate FFS Medicare 17.7% Decrease of 1.2 percentage
points (−7%)
ED visit rate FFS Medicare 645.8 per 1,000 Reduction of 100.5 visits per
1,000 (−15%)
NOTES: * = adherence rate is lower than 81.4 percent in a general population; DM = diabetes
medication; ED = emergency department; FFS = fee-for-service; UHC = UnitedHealthcare.
SOURCE: Adapted from a presentation by Bernard Rosof at Building the Case for Health
Literacy: A Workshop on November 15, 2017.
• Efficiency in the delivery of health care, particularly in the treat-

ment of chronic disease, requires health literate skills.
• Enhancing patient and health care team satisfaction and mutual
trust, improving adherence, and diminishing burnout requires opti-
mum communication skills.
DISCUSSION
Jay Duhig from AbbVie Inc. began the discussion by asking if it is pos-
sible to make the process of creating health literate materials open source,
that is, could the process of creating those materials be transparent and
available for others to use to create their own materials? He noted that
his efforts, for example, benefitted from Laurie Myers at Merck sharing
best practices with him. In his mind, a mechanism like ClinicalTrials.
gov, where organizations would publish their materials, the goals of and
processes for developing those materials, and any outcomes data associ-
ated with the use of the materials, would accelerate progress and address
systemwide needs.
Gunther replied that she and her colleagues are starting to publish
some of their results. “My preference is always to elevate all the boats in
the ocean and share those because this is not a problem that just resides
with the one drug’s manufacturer, but it is a systemic opportunity,” she said.
She noted that the Food and Drug Administration has expressed interest in

Merck’s work and believes it is a result of the agency recognizing the impor-
tance of health literate labeling. “Perhaps we can provide insights such that
they will start to create some best practices that they would encourage all
device manufacturers, as well as diagnostics and pharmaceutical companies,
to abide by,” said Gunther. In her mind, that would be just one example
of the opportunities all stakeholders have to create a learning health care
system. Rosof agreed that total transparency would drive performance
improvement because there would be more shared data and more metrics
to demonstrate what improvement looks like.
Linda Harris from the Office of Disease Prevention and Health Pro-
motion at HHS noted that the commissioned paper and many of the com-
ments at the workshop have assumed that health literacy will thrive in
a value-based system of care, but given the current political climate, she
wondered about the prospects of getting to such a system in the absence
of federal leadership. Rosof said that he does not believe this transforma-
tion depends on a federal initiative, but rather on local initiatives. In his
experience and from what he sees happening, he believes that most health
systems are prepared to move from a fee-for-service environment to a value-
based environment. He believes, in fact, that it is already embedded in daily
activities and discussed at the level of health system boards, medical staff
meetings, and even in medical schools.
Harris then asked if anyone has built a case for health literacy to be
a driver of value-based organizations, rather than being dependent on the
existence of a value-based care. Rosof replied that if the assumption is that
consumer-based care needs to be health literate, then the evidence makes
that argument clearly because health literate care produces better outcomes,
reduces mortality, and saves money. “I do not see how we can ask for
anything more,” said Rosof. Christopher Dezii from Bristol-Myers Squibb,
commenting on Rosof’s remark that health literacy is essential for meeting
the four aims, added that without health literacy, patient engagement will
not happen, and neither will shared decision making or informed consent.
After reading the commissioned paper and hearing the authors’ presenta-
tion at the workshop, Dezii said he is convinced the case for health literacy
has been built. He suggested that the patient engagement literature would
be another place to look for research on the effectiveness of health literacy
interventions and future research should take the form of quality improve-
ment work as a means of generating the measures that matter. Rosof noted
that a newly published book on health literacy by Robert Logan (Logan
and Siegel, 2017) will help spread the word.
Katherine Atchison from the University of California, Los Angeles,
remarked that effective communication among the entire health care team,
not just the physicians and nurses, is imperative for achieving a health
literate health care organization. Rosof agreed completely, noting that the

health care team is not restricted to the team that sits within the hospi-
tal or within the ambulatory care setting; it can also include community
resources and social services. Wilma Alvarado-Little from the New York
State Department of Health said she would include someone from the spiri-
tual community and mental health community as part of the health care
team when appropriate, as well as interpreters for those who are visually
or physically challenged. Gunther added that there are other individuals on
the payer side who are also part of the care team, including case navigators
and case managers who work with insurance companies to help patients
navigate their care. In her opinion, there are opportunities for working with
employers to enhance wellness and health literacy. “I think there are many
strange bedfellows we could tap to increase communication and education
needed to improve health literacy,” she said.
asked Gunther to comment on how health literacy plays into the growing
acceptance of so-called natural remedies as replacements for pharmaceu-
ticals when there is little or no evidence for the efficacy of those natural
remedies. He also asked how increasing health literacy might reduce the
inappropriate use of antibiotics. On the antibiotic issue, Gunther said the
pharmaceutical industry is doing a great deal of work to (1) educate both
the public and the medical profession, including dentists, veterinarians, and
others, and (2) establish better guidelines on antimicrobial stewardship.
Regarding natural remedies, Gunther said her company’s responsibility is
to invent medications that prove effective in the clinic and provide as much
information as possible to regulators, so they can decide whether those
medications are safe and effective. It then becomes her company’s respon-
sibility to provide balanced marketing information about that new drug. In
her opinion, it is important for patients to take responsibility when they are
given a prescription to ask what the medication is, why they are taking it,
and if there are alternatives. “We have to appreciate, though, that not every
human being is equipped to ask those questions in that moment, and that is
where health literacy and improved communication skills from physicians
comes in,” said Gunther. “I think there are benefits to both of those types
of holistic, herbal, and medicinal drugs, but the risks and benefits should
be carefully weighed for each individual and it needs to fit their cultural
predisposition as well.”

Adopting Health Literacy

in an Organization
The workshop’s fourth panel featured three speakers and focused on

how different organizations can adopt health literacy effectively. Audrey
Riffenburgh, president of Health Literacy Connections, continued the dis-
cussion on the research base regarding adoption of health literacy. Chris
Carlson, senior vice president for consumer and customer experience at
UnitedHealthcare Shared Service Operations, then spoke about his orga-
nization’s experience with developing and adopting a health literacy plan.
Jennifer Dillaha, medical director for immunizations and medical advisor
for health literacy and communication at the Arkansas Department of
Health, described how her organization adopted health literacy as part
of the department’s strategic plan. An open discussion followed the three
presentations.
WHAT RESEARCH SHOWS ABOUT ADOPTING

AND IMPLEMENTING HEALTH LITERACY
IN A HEALTH ORGANIZATION1
To start her presentation, Riffenburgh noted that she would be shar-
ing the findings of her dissertation research, which she completed in 2017.
Her research focused on the early phases of adoption and implementa-
tion of health literacy initiatives. In particular, she looked for factors
1 This section is based on the presentation by Audrey Riffenburgh, president, Health Lit-
eracy Connections, and the statements are not endorsed or verified by the National Academies
of Sciences, Engineering, and Medicine.
43

that advance or impede implementation of health literacy initiatives. Her

research involved in-depth qualitative interviews with individuals in charge
of advancing health literacy in health care organizations around the coun-
try. In some cases, these individuals were employed as full-time health lit-
eracy change leaders, while others spent half or less of their time on health
literacy after somewhat grudgingly being given permission to do so. The
organizations varied in size, how long they had been working on and had
a person in charge of health literacy, and the populations they served. She
cautioned that while her research identified some important themes, the
findings are not generalizable to the entire U.S. health care system.
As with any study, Riffenburgh’s first step was to review the literature.
She reviewed three different areas of research: organizational theory, orga-
nizational change theory, and what she characterized as an interesting and
rich field called dissemination and implementation. (This last field is the
source of the often-repeated finding that it takes 17 years for 14 percent
of medical research to lead to care that benefits patients.) Riffenburgh’s
study found many of the facilitators and barriers to implementation of new
initiatives previously identified in the literature, such as the importance of
leadership support; making the initiative a strategic priority; having execu-
tive sponsors, champions, and a task force; dedicating full-time employees,
a budget, and an office; and having policies that support or mandate the
initiative. “When these were present, they were facilitative, and when they
were not present, it created all kinds of barriers,” said Riffenburgh. “It all
centered on leadership support. If the leadership support was not there,
then the things that flowed out from the leadership support were not
there, and progress was going to be tough.”
In addition to the findings related to factors previously identified in
the literature, there were findings and themes specifically related to health
literacy initiatives. First, two distinct types of organizations emerged in
the findings. In one type, advancing health literacy was so slow and dif-
ficult that one of the interviewees described it as “digging a tunnel with a
tablespoon.” In the other type of organization, advancing health literacy
was much faster and easier. In contrast to “digging with a tablespoon,” the
second type of organization could be described as “creating a path with a
backhoe.” In a “tablespoon” organization, people lack tools and resources,
and they labor away largely hidden from the view of the rest of the orga-
nization. In a “backhoe” organization, people have enough resources to
metaphorically “buy a backhoe instead of going to the thrift store to buy a
tablespoon,” Riffenburgh explained. “They’re out there making a path, and
it’s noisy, and everybody sees it. It’s clearly important to the organization
because they’re blasting away, and things are happening.” One interesting
finding, she said, was that the participating organizations were split almost
equally into the two types, with only one or two somewhere between these

ADOPTING HEALTH LITERACY IN AN ORGANIZATION 45
two types. She noted, however, that Brach conducted a similar study and
found more of a continuum between these two types (Brach, 2017).
Riffenburgh then presented a composite case study involving Carol,
a fictional health literacy leader. Carol has a “backhoe” at her disposal
because the leaders of her organization have made health literacy a prior-
ity: they named an executive sponsor and champion, created a taskforce,
ensured she has access to senior leaders, developed supportive policies and
mandates, allocated resources, and created a health literacy office with
organization-wide reach. As a result, Carol has been able to make wide-
spread progress in spreading and embedding health literacy through the
organization. When Riffenburgh asked one of the interviewees in this type
of organization what it was like being the change leader, the person replied,
“I’ve loved it. It’s significantly easier if leadership is on board. Without that,
change is not likely.” In Riffenburgh’s opinion, that was an understatement
because change is definitely not likely.
Jamie, another fictional health literacy leader, works in a “tablespoon”
organization, where she has little or no leadership support, no sponsor, no
resources, no mandates, and little access to leaders at any level. Health lit-
eracy is not a priority at her organization, and she is only allowed to work
on it part time. She has managed to find some allies in her organization,
but they are working mostly under the radar on small projects. Despite
having little in the way of resources or help, she and her team of volunteers
keep “digging with their tablespoons.” When Riffenburgh asked one of the
interviewees in this type of organization what it was like being the health
literacy change leader, the person replied, “We feel like our hands are tied.
We don’t have a voice or the attention of leadership.” The contrast between
the frustration this person expressed and the joy of the person working in
the “backhoe” organization was profound in Riffenburgh’s opinion.
A second theme the research identified was the significance of who was
bringing health literacy into an organization and where in the organiza-
tional structure they worked. If awareness of health literacy came from a
senior leader who had heard about health literacy at a conference or from
a colleague, for example, that person was in a position to start moving
things, Riffenburgh said. In contrast, health literacy initiatives that started
from the bottom up had a much harder time gaining traction. In many
cases, they not only did not have adequate access to organizational leaders,
but they could not even get the leadership’s attention. “Without awareness
and access, it was difficult to build support, but with both of those in place,
it was much easier,” said Riffenburgh.
Riffenburgh’s research showed that the location of health literacy initia-
tives within an organization was a third theme that seemed to influence the
level of success. Health literacy initiatives placed where they would have
organization-wide reach and authority, such as part of quality improve-

ment, patient experience, population health, or care coordination, were

more successful than initiatives situated in one area or service line, such as
in nursing education, the medical library, patient education, or marketing.
“If the initiatives were under the chief quality officer or chief experience
officer, things were going to be much easier,” said Riffenburgh. She added
that being placed in a silo, such as under the chief nursing officer, made it
easy for people in other parts of the organization to ignore health literacy.
It was often seen as irrelevant to their work unless it was led by a leader
with authority over their area or department.
The fourth theme identified in the study was the health literacy change
leader’s level of experience within their organization. The research suggested
that longevity in the position was a factor for success, as was the health
literacy leader’s passion and commitment to keep going despite setbacks. “I
would hear stories of incredible frustration, yet they were persistent. That
was remarkable,” said Riffenburgh. She noted, however, that there was a
“vast gap” between the background and training these individuals had and
the demands of their job. It was not surprising that almost none of the health
literacy leaders she spoke with had training in health literacy. However, it
was surprising how little training they had in areas such as making persua-
sive presentations to senior leadership, catalyzing organizational change, and
creating easy-to-read text-based information for their organizations.
The fifth theme that emerged related to how health literacy change
leaders made the case for health literacy to their organization’s leadership.
The majority of participants were unsure how to begin making the case.
They described somewhat randomly choosing a strategy and trying it out.
The strategies they most commonly tried included linking health literacy to
other initiatives, focusing on cost savings and return on investment, present-
ing statistics on health literacy, and relaying stories of patient experiences to
engage both the hearts and heads of organizational leaders. Of note, only
one interviewee mentioned using important legal, regulatory, and compli-
ance issues to justify addressing health literacy to leaders.
Based on her findings, Riffenburgh offered two sets of recommenda-
tions: one for the health literacy field and perhaps funders, and the other
for health literacy change leaders. For the field, her first recommendation
was to develop and implement strategies to increase health system leaders’
awareness of health literacy, perhaps by targeting the conferences they
attend or the publications they read. The challenge is to learn how to make
the case to health system leaders so they take the lead in starting health
literacy initiatives. Her second recommendation to the field was to identify
the most effective locations in an organization to establish health literacy
initiatives and then develop best practice guidelines for health care organi-
zations on locating their initiatives. Her third recommendation was for the
field to produce one or two current films with patient stories highlighting

their experiences in health care, because the films used now are quite old.
For health literacy change leaders, she recommended building their skills
for leading organizational change by learning their organization’s change
process. This might include talking to others who have had success at cre-
ating change both within and outside of the organization. She also recom-
mended that they learn how to better make the case for health literacy, be
persistent and patient, and, just as importantly, honor the struggle. Making
organizational change takes time, she said, but it is the best struggle to be
engaged in because it is so important.
A CASE STUDY: ADOPTING HEALTH LITERACY

IN A HEALTH PLAN2
“Ultimately, getting any initiative adopted by an organization is about
trust, and trust is a function of credibility, reliability, and intimacy,” said
Carlson. “Do you believe the source? Is it credible? Consistent?” he asked.
“When you have a conversation, when you interact, do you feel like they
are actually engaging with you, or are they saying something they have
been told to say or that is generic?” Earning and establishing trust unlocks
the potential of technology to enable a more human experience. In short,
said Carlson, trust begets engagement, and in the same way, health literacy
equals engagement when it is done right. The unique thing about health
care, he added, is that no matter what part of the health care system some-
one interacts with, the experience of health care is emotional, which makes
establishing trust even more important.
Carlson noted that the technological aspects of how people interact
with the health care system are getting more complex. Today, there is vir-
tual care delivery and virtual service processes. Chatbots may be replying to
questions online, but chatbots are not appropriate for all questions. When
a man calls in and says in a flat tone that he just got out of the hospital and
his wife just died and does not know what to do, responding to him with a
chatbot is not the way to go. “We want somebody to listen to him, under-
stand how unique his situation is, and then do whatever it takes to offer
assistance,” said Carlson. Technology alone, he added, does not help when it
comes to dealing with the complexity of health care. It can be a tremendous
burden or tremendously enabling.
Turning to the value of a health literacy intervention from
UnitedHealthcare’s perspective, Carlson explained that his organization
2 This section is based on the presentation by Chris Carlson, senior vice president for
consumer and customer experience, UnitedHealthcare Shared Service Operations, and the
statements are not endorsed or verified by the National Academies of Sciences, Engineering,
and Medicine.

insures some 14 percent of the U.S. population. If the cost to the nation result-
ing from poor health literacy is $240 billion annually, UnitedHealthcare has
the potential to save 14 percent of that total, or approximately $34 billion
per year, if it could eliminate the waste resulting from inadequate health
literacy (see Figure 5-1). That is money, said Carlson, that the company
could use more effectively to improve the health system. The company’s
internal research estimates that transforming a low health literacy com-
munity to a higher literacy level would affect medical costs, including an
estimated 10 percent drop in emergency department visits and 18 percent
decrease in hospitalizations.
As an example of the type of educational work his team does internally,
he explained how UnitedHealthcare trains its pharmacy advisors who work
with a Medicare population by putting them in real-life situations. “We
give them big, thick cotton gloves and ask them to open a pill bottle, or we
take glasses and scratch them, so you cannot really see through them and
have them try to read the label on the pill bottle,” said Carlson. “That is
the reality of the individuals they will talk to on the phone.” This type of
approach puts people in the shoes of those they will be serving.
One of the first big transformations at UnitedHealthcare was its
Advocate4Me initiative, which transformed how the company deliv-

FIGURE 5-1 Building the case for health literacy interventions.

SOURCE: As presented by Chris Carlson at Building the Case for Health Literacy:

ered health care services across roughly 30 million members in less than
18 months. The first steps in that initiative involved teaching everyone in
the organization who answered the phone to listen. He and his team then
built technology and analytic tools so that the person answering the phone
listens actively and positively, thereby placing the conversation in context
and engaging the caller. “If you do that, you can help keep people out of the
emergency department and you may keep people out of the hospital,” said
Carlson. Another component of that initiative improved adherence to treat-
ment plans by offering clear directions in simple language both in direct
conversation on the phone or in the service environment or via digital tools
such as a mobile app or patient portal. These tools helped the company’s
advocates talk to members using plain language, not the benefit structure
language that exists in some health industry documents.
There are many things going on in a person’s world when calling in to
a member advocate, logging onto the patient website, or using a mobile app
(see Figure 5-2). Many individuals with chronic illness, for example, have
comorbidities, depression, and other behavioral issues that affect their abil-
ity to comprehend information. In a health literate world, every individual
gets to participate in the decision-making process and will feel empowered
FIGURE 5-2 The inputs and outputs of health literacy at the moment of interacting
with the health care system.
NOTE: HC = health care.
SOURCES: Adapted from Paasche-Orlow and Wolf (2007), as presented by Chris
Carlson at Building the Case for Health Literacy: A Workshop on November 15,
2017. Reprinted with permission from PNG Publications, publisher of American
Journal of Health Behavior. Adaptation provided to Chris Carlson via personal
communication with K. Ellingworth, K. Froeber, D. Goldstein, S. Kibler, and S. Tai,
Optum Health, 2017.

to do so. They will have access to their own medical information, and they
will come into their appointments having done some research and being
prepared with questions. “That future state, I believe, is going to be acceler-
ated by our ability to incorporate literacy and engagement tools into every
interaction we have,” said Carlson.
Ultimately, though, patient motivation is critical for successfully engag-
ing with the health care system, because if a person is not motivated to
care for himself or herself, health literacy is irrelevant. However, Carlson
noted, “If someone has been frustrated by a system that they do not under-
stand, that is going to affect their motivation. That is a literacy issue, not
a motivation issue.” In fact, when individuals feel there are barriers and
complications that they cannot understand, they become demotivated.
For Carlson, there are two ways to look at the function of health lit-
eracy and engagement (see Figure 5-3). One way is through the interaction
points an individual has on the journey through the health care system.
When patients are “prospecting,” for example, they may be looking at the
options covered by various health plans to fit their current life situation.
“Onboarding” is when a new member registers for a plan or states their
preferences, and Carlson said there are too few tools available to help
members use their plans better. The other way to look at health literacy and
engagement is through the patient’s entire ecosystem at home.
FIGURE 5-3 The two components of the consumer’s journey in the health care
system.
SOURCE: As presented by Chris Carlson at Building the Case for Health Literacy:

UnitedHealthcare’s approach of advancing health literacy has been to

work on simplicity, accessibility, and developing understandable and rel-
evant content that is actionable. “Consumers do not want to engage unless
there is an action,” said Carlson. “Sometimes that action is to do nothing
but stop worrying.” One area of focus has been on readability and rel-
evance, and Carlson’s team developed a writer’s guide of internal language
that he called the Blue Book, which lists 10 big ideas for creating clearer
documents. They also developed an English-Spanish-Portuguese glossary
and the Just Plain Clear scorecard. Other areas of focus included ensuring
clarity on actions, using appropriate tone and personalization, employing
simplicity in messaging, changing burdensome processes, working to mini-
mize member anxiety during conversations, and listening when conversa-
tions do occur. This initiative, said Carlson, created a foundational set of
change actions that got people in the organization galvanized to embrace
health literacy as a necessity for driving the organization forward.
Carlson then listed a set of purposeful actions the company had taken
since 2012 to build health literacy best practices and standards into every
touchpoint and program across all business lines and functional areas. These
included establishing a top-down approach to communication directed by
a chief consumer officer. This effort includes rewriting every one of the
company’s 3,700 templates, affecting more than 100 million touchpoints
and eliminating those that were unnecessary. In 2017, for example, 690
templates were reworked and 44 were eliminated, producing a savings
of $217,000. Carlson’s team created health literacy trainings that more
than 200,000 UnitedHealthcare employees have taken, and the company
established a center of excellence with professionally trained writers to sup-
port the company’s functional team. The Just Plain Clear tools were made
publicly accessible and more than 150,000 people have accessed them in
just the past year. Usage of the Just Plain Clear glossary, which currently
has more than 12,000 terms, has tripled every year since the company
published it, said Carlson, and people from 68 countries accessed this tool
within 2017. The company, he added, tracks the top subjects, clinical, and
nonclinical words that users search.
Service agents have been trained in spoken word health literacy and
changing the way they listen to and talk with consumers to provide posi-
tive, clear, personal, and compassionate messages. Introduction of finan-
cial literacy practices are helping consumers understand cost and benefit
options, including proactive alerts and personalized videos, and the com-
pany now solicits communication preferences to help address personal
situations, such as the need for documents in large print or in alternate
languages. “We took very deliberate and actionable steps to incorporate
change, not just in what we did, but what we sent our consumers and our
members,” said Carlson.

As an example, Carlson described what happened in 2012 when the

DC Department of Health mandated that all health plans send every
member who was a DC resident a letter about a preferred service to use
when fulfilling HIV/AIDS-related prescriptions, regardless if there was an
HIV diagnosis in the household. The letter had to (1) use wording pro-
vided by the federal regulators; (2) be on company letterhead; and (3) be
signed by the chief executive officer or medical director. Of the more
than 36,430 members who received the letter, about 15,300 telephoned
the company’s service center wanting to know why they got this letter.
Nearly 40 percent of the people who called had never called the service
center before, while 54 percent called at least twice, and nearly 30 percent
called three or more times. As evidenced by the content of the calls and
the repeated phone calls from people who had never called before, the
wording in the letters made them nervous that they were infected with
HIV. “That costs money,” said Carlson. “Every time somebody calls us, it
costs us $15 and it takes time out of the caller’s day.” Because of this inci-
dent, UnitedHealthcare has now instituted a health literacy control point
and includes a plain language explanation via a cover letter, as well as a
Web link to more information, that can help reduce member anxiety and
increase understanding. The company also started an effort to help state
partners and regulators become aware of how difficult content can be to
understand and how it can affect its members adversely.
Another case study Carlson presented involved a survey of the com-
pany’s Medicare Part D and Medicare Advantage group members. This
survey asked members how they felt about their understanding of the
materials they received and their medications. Part D members who rated
their understanding of their benefits from 0 to 4 called the service center
three times more frequently than did those who rated their understanding
between 9 and 10. That ratio was even higher among Medicare Advantage
members. At $15 per call, there was a clear incentive for the company to
rewrite its plan materials to reduce complexity and increase understand-
ability. Carlson placed the estimated cost savings at $4 million or more
annually for its Part D and Medicare Advantage populations.
In closing, Carlson said he wanted to underscore the importance of
engagement and trust developed through a series of positive experiences
that result from the simplicity, relevance, and actionable nature of the
conversations between members and the company. Those conversations,
he said, can be verbal, digital, and written. He referred to the people who
received the HIV letter and noted how it was irrelevant to most of them,
but sending it created relevance, which led to frustration, fear, confusion,
and a struggle to understand; this produced anxiety and problems those
individuals did not need. “At the end of the day, simple, clear, relevant,
and focused conversations, digital or otherwise, is what it is all about,”

said Carlson. “Ultimately, engagement and trust are based on literacy and
simplicity in the experiences we have with our consumers every day.”
A CASE STUDY: ADOPTING HEALTH LITERACY

IN A PUBLIC HEALTH SYSTEM3
Arkansas, explained Dillaha, has a unified health department, which
means the state agency she works for operates all 94 local health units
in the state’s 75 counties. Almost 3 million people live in Arkansas, with
19 percent of the population living in poverty and 17 percent living with a
disability. Only 14 percent of the state’s residents older than age 25 gradu-
ated college, and only 64 percent of the state’s households have a broad-
band Internet subscription, which is the second lowest in the nation. In
addition, the state was 48 out of 50 states in the 2016 America’s Health
ranking, and 37 percent of the state’s population—about 820,000 people—
have low health literacy (see Figure 5-4). Dillaha noted that the counties
with the lowest health literacy tend to have the lowest life expectancy in
the state. She also explained that at least one-quarter of the population
struggles with low health literacy even in counties with the highest level of
health literacy.
Not long after Dillaha had read the 2004 Institute of Medicine report
Health Literacy: A Prescription to End Confusion (IOM, 2004)—which
was her “Aha!” experience—she was appointed director of the A rkansas
Department of Health’s (ADH’s) Center for Health Advancement and
became aware that people in Arkansas struggled with grasping the infor-
mation made available to them and using it to make decisions about their
health. She and a local pediatrician who had gone through the American
Medical Association’s health literacy training gave a joint presentation to
the weekly grand rounds at the health department on health literacy. “You
would have thought we had set off a bomb,” said Dillaha. “It resonated,
and the ripple effects have continued even to this day.”
Dillaha and her colleagues at the health department spent the next
couple of years talking about health literacy to everyone they knew, and
on July 24, 2009, the ADH, Arkansas Literacy Councils, University of
Arkansas Cooperative Extension, and Arkansas Children’s Hospital held
a joint meeting to which they invited everyone they could find who was
working on health literacy. Out of that meeting came the Partnership for
Health Literacy in Arkansas, which became the health literacy section of the
3 This section is based on the presentation by Jennifer Dillaha, medical director for immuni-
zations and medical advisory for health literacy and communication, Arkansas Department of
Health, and the statements are not endorsed or verified by the National Academies of Sciences,
Engineering, and Medicine.

FIGURE 5-4 RAND health literacy estimates by Arkansas County.

SOURCE: As presented by Jennifer Dillaha at Building the Case for Health Literacy:
Arkansas Public Health Association, a broad-based coalition of individuals,

agencies, and organizations committed to improving health literacy among
all Arkansans. The coalition has had its ups and downs over the years,
said Dillaha, and it became somewhat dormant over the past few years,
although it is now taking off again.
What the coalition discovered over time was that low health literacy is
more than a literacy problem and that it cannot be solved with more health
information. They also learned that individual patients are not the only
ones with low health literacy—the health care system, including the public
health system, has a health literacy problem, too. By 2011, when the A
DH
had developed a strategic plan there was a broad consensus within the
agency to add strengthening and integrating health literacy strategies into

its overall plan for addressing high-burden health issues and strengthening
and expanding the clinical services that it offered through its 94 local health
units. Today, the health department’s 2016–2019 strategic plan infuses
health literacy into every one of its goals on childhood obesity, teen preg-
nancy, mental and community wellness, hypertension, immunizations, and
tobacco use. Every objective related to each of these goals now includes a
health literacy component, Dillaha explained.
“This was made possible because we had support from the highest levels
at the health department to make health literacy an important part of what
we do,” said Dillaha, echoing what Riffenburgh and Carlson said about the
importance of having support from the highest levels of an organization. In
Arkansas’s case, the director of the Office of Health Communications (who
has since retired) was an early participant in the partnership and an avid
supporter of the health literacy strategy. At the time of the initial strategic
plan, that office provided the staff support needed to address health literacy
in the agency, although there were no staff dedicated to this effort. “All
of the health literacy goals and interventions have been added on to what
people have already been trying to do,” she said. “That adds to their work-
load, and sometimes we have competing priorities that caused health literacy
and our capacity building to be put on the back burner.”
To build capacity, Dillaha and her colleagues started a plain language
learning community. All four of the department’s centers, as well as the
state laboratory and department administration, sent representatives, some
of whom Dillaha refers to as the “voluntolds,” because they were volun-
teered by others to participate. “It is one of those things in an agency or an
organization where you have some people who have a vision and under-
stand it and others who are not quite there yet, and they struggle with why
it is important,” she said. “That became the voluntold component.” How-
ever, all of the voluntolds had their “Aha!” moments, came to understand
why health literacy was important, and were able to take that perspective
and what they learned back to their part of the organization and encourage
others to have that perspective.
This was such an important experience that even after the project ended
in the spring of 2012, this group met with agency leadership and came up
with some plans to implement more plain language. “That was what we
really needed to take steps to integrate this with all that we were doing in
the health department and that we needed ongoing training opportunities,”
said Dillaha. The vision they developed was that people would rotate into
the plain language learning community for 6 months, but making this hap-
pen proved challenging because of the struggle to get a funded position to
oversee the learning community. However, reported Dillaha, the current
director of the Office of Health Communication is supportive and now has
funding to recruit and hire such a person.

The ADH did receive a grant from the Centers for Disease Control and
Prevention’s National Public Health Improvement Initiative to improve the
communications that the department issues, including the state health assess-
ment and health improvement plan the department published in 2013. This
document, which identified Arkansas’s big health problems and how the
department planned to solve them, was written using plain language prin-
ciples and has been extremely popular, according to Dillaha. She noted that
Nathaniel Smith, the department director and state health officer, has called
this the most important document the health department produced over the
past 5 years because it represents a paradigm shift in terms of serving as a
model for what the state needs to do going forward. She added that in the
past producing documents in plain language was challenging because many
of the contributors were epidemiologists who did not have plain language
skills. “We relied on our partner, the University of Arkansas for Medical
Sciences,” she explained. “They have helped with training, but we would
like to develop in-house capacity to provide that training to our staff.”
The ADH has also received funding for several other projects, including
one focused on maternal, infant, and early childhood home visiting that
at its core is a health literacy intervention. Currently, the program serves
53 counties using one of five models implemented through the depart-
ment’s local health units and partners. The idea behind these programs,
said Dillaha, is to provide individually tailored, evidence-based education
and information as well as resources and support to expectant parents and
families. In a 2001 report, The Pew Charitable Trusts found that well-
designed and implemented home visiting programs show a $5.70 return
on investment for every taxpayer dollar that is used for these programs
(PHVC, 2001).
One of the models, Baby Back Home, works on improving adherence
to medical appointments and immunizations, facilitates coordination of
health care, monitors a child’s growth and development, identifies local
resources to meet the needs of the family and infants, and promotes parent
education. “Does that sound like a health literacy intervention to you?”
asked Dillaha. “It does to me.” For babies in this program who weighed
less than 2,500 grams when they were born, the infant mortality rate has
been 8 per 1,000 compared to the infant mortality rate of 52 per 1,000 for
similar babies in the state who are not part of that program. In addition,
for children from 0 to 18 months in this program, the immunization series
completion rate is 94 percent, compared to approximately 50 percent for
the state overall. Sisters United, a program developed by the ADH’s Office
of Minority Health and Health Disparities and supported by the Region
VI Southwest Regional Health Equity Council, is another successful infant
mortality reduction program. Sisters United trains members of African
American sororities to go into the communities and use health literacy

principles to talk to African American women about taking folic acid before
they are pregnant, getting flu shots when they are pregnant, breastfeeding,
and following safe sleep practices as a means of reducing infant mortality.
Dillaha said she did not have time in the presentation to do justice to
the many activities the ADH has undertaken through its local health units.
For example, the local health units have learned to use the teach-back
method in the state’s HIV program, and the state’s Special Supplemental
Nutrition Program for Women, Infants, and Children (WIC) program pro-
vides children’s books so parents can read to their children about some of
the health lessons they are learning through the WIC program.
Dillaha concluded her presentation with some lessons learned. One
lesson is that in terms of organizational capacity, increased awareness of
low health literacy is not sufficient to improve health literacy. Awareness
must be accompanied by increased capacity for addressing low health
literacy. Another lesson is that efforts to change health behaviors that do
not address health literacy will be confounded. Dillaha said she recognizes
the ADH is not likely to get many additional resources to conduct health
literacy activities, so efforts to improve health literacy must be implemented
by using current resources differently. Perhaps the biggest challenge she has
faced has been acquiring funding for staff with time dedicated to working
on increasing health literacy capacity throughout the health department.
DISCUSSION
To begin the discussion, Brach commented that given the importance
of leadership and remembering that leadership can change, it is critical to
institutional health literacy practices to establish a health literacy infra-
structure even in a “backhoe” organization because subsequent leadership
may be less supportive. She also noted that just as there can be physician
burnout, health literacy champion burnout is a concern in “tunnel and
teaspoon” organizations. To help prevent champion burnout, Brach sug-
gested that the International Health Literacy Association should consider
developing a mentoring program to support those individuals. Riffenburgh
noted that three of the champions she interviewed have left their positions
in the past year because of burnout.
Brach then asked Carlson if there is a case for UnitedHealthcare to
invest in full-time staff to engage in health literacy activities to reap the
potential billions of dollars that the company could save. Carlson replied
by clarifying that the $34 billion figure he cited represents potential value to
members, which is different from savings. Having said that, he noted that
Steven Rush, the director of the health literacy innovations program at the
company, has full access to and is a consultant for his entire team, much
of which focuses on simplicity, relevance, and engagement. He explained

that where he sits in the organization allows him to build and implement
programs across the entire enterprise, whereas Rush sits in a policy-oriented
part of the company. At UnitedHealthcare, it is his team’s job to provide
Rush with enough capacity to create, administer, and direct policy and then
leverage his group to build systems that make that policy real for consumers
and for people in the organization.
Smith commented that he has seen many initiatives start in his health
system and eventually fade away because they are not solving a problem
that keeps company executives awake at night. Making that case, he
said, requires metrics that correlate with something that concerns those
executives. In that context, he asked Riffenburgh if any of the organiza-
tions she interacted with spent much energy producing robust, reliable
metrics that answer questions important to organizational leadership.
“Very few,” said Riffenburgh, even though there are multiple instruments
that those organizations could be using. One issue for many “tunnel and
teaspoon” organizations, she said, is that it is hard to know what the
issues are that most concern leadership if there is no access to leadership.
Carlson suggested focusing on loyalty measures, which are a concern for
every health system today. His organization, for example, has spent the
past 2 years focusing on net promoter score, a management tool that
can be used to gauge the loyalty of a firm’s customer relationships. In his
opinion, measuring health literacy itself is missing the mark because that
is not the direct issue that concerns most health system leaders.
Michael Villaire from the Institute for Healthcare Advancement asked
Riffenburgh how the health literacy leaders in “tunnel and teaspoon” orga-
nizations evaluated themselves and their activities to even maintain the little
support they received from their health systems. Riffenburgh said that she
did not delve into that issue in the limited time she had with the people she
interviewed. She did observe that in low-support organizations, the expec-
tations of the champions were unclear. “When the people above you do not
really know what health literacy is, and you do not have a way to tell them,
it is hard to figure out how your progress should be measured, or even
what you or they are doing, or if the people above you even know or care
what you should be doing,” she said. In those organizations, there was a
great deal of “stabbing in the dark and just starting,” she explained, with
no strategic plan. Rather, it was grabbing the low-hanging fruit of finding
a document that could be revised to be easier to read. In fact, she added,
one of her findings was that in “tunnel and teaspoon” organizations, the
health literacy champions did not even know if there was an organizational
change model in place, making it difficult to know what would be possible
to accomplish in those organizations.
Linda Harris from the Office of Disease Prevention and Health Pro-
motion asked Carlson if UnitedHealthcare believes that the health literacy

work at the company, which includes the larger issue of improving customer
experience, is something the company can use to increase market share and
to promote and differentiate UnitedHealthcare from its competition. “Yes,”
replied Carlson. “We feel strongly that our ability to engage will absolutely
be a differentiator and create a distinctive relationship between our orga-
nization, our brand, and the members and the providers with whom we
work. There is no doubt that we are spending time and resources to build
foundational capabilities and a strategy around that specific focal point. It
is our intention to differentiate on patient experience.”
Earnestine Willis from the Medical College of Wisconsin asked
Riffenburgh if she had any insights into why placing health literacy in the
nursing department resulted in it being siloed compared to putting it under
quality improvement, which led to wider dissemination in an organization.
Riffenburgh replied that those she interviewed said that it had to do with
perception—when put under the director of nursing, the attitude at those
organizations was that health literacy was only important to nurses, for
example. In contrast, when placed in an area that everyone in the orga-
nization was supposed to pay attention to, such as quality improvement
or patient experience, that sent a loud signal that health literacy was an
organization-wide priority. That attitude might be different, she said, in a
nurse-run organization, such as a magnet hospital. In fact, her professional
experience before starting her doctoral program was that she worked in an
organization dominated by nurses, and since her health literacy initiative
was in a different area, the nurses were not interested, and she could not
get any traction for her program.
Jennifer Pearce asked Carlson if UnitedHealthcare had plans to use
health literacy interventions to bridge the divide between insurer and pro-
vider. Carlson replied that the plan is to extend their work outside of the
company. “Our focus on experience and relationships inside the company
is on its way outside with the consumer as well as with the provider,” he
explained, saying:
We are starting to work with the provider systems across the country,
globally actually, around experiential attributes, ease of information ex-
change between systems, elimination of processes that are required based on
data we might already have, and simplifying everything we can do to auto-
mate and accelerate the access to care when it is required and certainly not
create hassles and barriers based on complexity and challenges with literacy.
Helen Osborne from Health Literacy Consulting commented that the

hospital she worked for 20 years ago did not even have a teaspoon, but
more of a medicine dropper. In fact, the hospital president had no under-
standing or tolerance for any health literacy activities. The lesson she

learned was the importance of having an entrepreneurial spirit and seeking

alternative paths to make a difference, often going outside an organization.
Riffenburgh agreed that it is sometimes more effective to come from out-
side an organization because leaders often listen more carefully to outside
voices. She then recounted that three of the people she interviewed from
“tunnel and teaspoon” organizations said their organizational leaders had
each called health literacy “fluff.” With leadership like that, it is not hard
to see why people experience burnout, she added.
Ruth Parker from the Emory University School of Medicine commented
that using health literacy to drive retention as an outcome makes good
sense, and she asked Carlson how the company sees health literacy relating
to consumer health activation and engagement, which could also be used to
build the case for health literacy. Carlson said patient engagement is criti-
cally important to UnitedHealthcare and the organization uses a tool—the
activation index—to measure it. In his view, if members do not understand,
they will not adhere, and if they do not adhere, they will not engage and be
activated. “Activation is a critical output and a function of interacting in a
way that enables simplicity, relevance, action, and literacy,” he said. “I see
a deliberate linkage between activation and literacy at the individual level.”
At the organizational level, he continued, the ability to engage and
activate communities differently or provider delivery systems differently is
critical to the overall health and well-being of the population, the family,
and the individual. Many of his organization’s interventions are now focus-
ing on activating the family unit as a means of providing more effective care
for a family member. Carlson added that in his opinion, effective activa-
tion will strengthen and accelerate the case for democratizing the health
care system, to which Parker added that democratization will not happen
without health literacy.

Where Do We Go from Here?
The final panel session of the workshop featured a moderated discus-

sion in which the panelists, each representing a different sector of the health
care enterprise, responded to specific questions developed by the workshop
planning committee and posed by moderator Laura Noonan, director of the
Center for Advancing Pediatric Excellence at Levine Children’s Hospital.
The panelists were Christopher Trudeau, assistant professor in the Univer-
sity of Arkansas for Medical Sciences’ Center for Health Literacy, represent-
ing the legal sector; Lori Hall, director of health literacy at Eli Lilly and
Company (Lilly), providing a pharmaceutical industry perspective; Thomas
Bauer, senior director of patient and family education at Johns Hopkins
Health Centers, providing insights from the health care system perspective;
Laurie Francis, executive director of Partnership Health Center, represent-
ing the federally qualified health center sector; and Lawrence Smith, dean of
the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell,
providing insights from the education and training sector. An open discus-
sion followed the moderated panel discussion.
MODERATED PANEL DISCUSSION1

The first question Noonan posed to the panel was to ask them to
think about how to increase the company leadership’s awareness of health
1 This section is based on the moderated discussion among Laura Noonan, director of the
Center for Advancing Pediatric Excellence, Levine Children’s Hospital; Christopher Trudeau,
assistant professor, University of Arkansas for Medical Sciences’ Center for Health Literacy;
61

literacy and its benefits. Smith said that if he was speaking with the chief
executive officer of Northwell Health, he would say that chronic disease
cannot be managed without health literacy. “We are now in the chronic
disease management business full-time,” said Smith, who noted that at
least half of his organization’s efforts focus on prevention. “You cannot do
prevention without health literacy because nobody will come for preventive
interventions. You will not have a patient base that thinks you treat them
respectfully without health literacy and interventions to assure that. I think
I could make a very strong business case on a moral, ethical, and medical
quality basis.”
Bauer said he agreed with Smith, and that his argument has always been
based on the quality and satisfaction aspects of the Quadruple Aim. “What
has worked more effectively for me is one-on-one meetings with key leaders
throughout the organization and finding those that also will support the mes-
sage,” said Bauer. The purpose of those meetings, he explained, is to have
advocates in the executive suite who engage in the critical conversations that
take place throughout the organization and to which he is not a participant.
From his experience in two organizations, he learned the importance of first
making the case in small demonstrations, celebrating and sharing those vic-
tories, and then allowing them to grow organically. “When that happens, the
word spreads through the organization and that organic growth becomes fire
and fire then leads to the spread,” said Bauer.
From her perspective as the executive director of a federally qualified
health center (FQHC), Laurie Francis said she feels certain that “health
literacy will only find purchase if we build it into quality, cost, access, and
equity. For those of us in health centers, it is absolutely about value
and value-based care, not just cost.” In her opinion, the field needs to do
more with metrics to better understand why a health literacy interven-
tion will improve control of hypertension. One action her organization in
Montana is doing is disaggregating populations to look just at those who
are currently in control of their chronic disease and better understand that
population using a social determinants screening tool. Francis also recom-
mended an article on organizational transformation (Halfon et al., 2014)
that her former health center in Oregon used to guide its efforts and to help
her understand the language that would resonate with leadership.
Trudeau, referring to Smith’s comment about the importance of under-
standing the critical issues for executives, noted that compliance and risk
Lori Hall, director of health literacy, Eli Lilly and Company; Thomas Bauer, senior director
of patient and family education, Johns Hopkins Health Centers; Laurie Francis, executive
director, Partnership Health Center; and Lawrence Smith, dean, Donald and Barbara Zucker
School of Medicine, Hofstra/Northwell, and the statements are not endorsed or verified by
the National Academies of Sciences, Engineering, and Medicine.

WHERE DO WE GO FROM HERE? 63
are major concerns among health system executives. Explanation of ben-

efits, informed consent, and patient care plans all have a compliance aspect
to them, and so from his perspective, tying health literacy to legal concerns
could make a compelling case in the executive suite. He considers health
literacy to be both sword and shield. The shield is the compelling evidence
laid out in the commissioned paper showing that health literate commu-
nication must be the standard of care. “We are starting to get information
on what type of interventions work and what interventions may not work
so well. That is the shield. Those organizations that adopt those principles
now are going over and above the standard of care. And those that do not,
they are subject to the sword,” said Trudeau. In his opinion, combining
return on investment and compliance makes a compelling argument to
move any type of organization toward a patient-centered approach and
having activated members.
Considering the question through a pharmaceutical industry lens, Hall
said that while a pharmaceutical company is full of people who care deeply
about patients, there is no one-size-fits-all message to deliver across an
entire organization. She reminded the room full of health literacy ambas-
sadors that they each had their moment when they realized how important
health literacy is, and the challenge is to find the message that will make the
light bulb go on for people with different roles and agendas in an organiza-
tion as large and diverse as a pharmaceutical company. What appeals to a
scientist in the organization will be different from what interests someone
in the marketing department. “By customizing the message and breaking
through the noise, we allow people to have the ‘Aha!’ moment first before
they are ready to hear and listen to supporting data,” said Hall. She has
had a great deal of success in taking this approach and acknowledged that
it takes work to customize a message for each new group in the organiza-
tion. In her mind, helping people in the organization feel they can become
heroes in their own story is the best path forward. “You have to do your
homework and have real insight into the one or two or three things that
they are working on and your message should start with ‘I understand
that you are focused on these three things in the next quarter. Here is how
health literacy can help you get there.’”
In a follow-up question, Noonan asked the panelists how the health
literacy community can get invited to speak at the meetings that executives,
legal staff, or pharmaceutical company representatives attend, knowing that
those people are not likely to attend a health literacy conference. Smith said
that at his medical school, the definition of a good doctor is someone who
creates a positive effect in the patients they treat. “Once you decide that
that is what a great doctor is, then health literacy and communication skills
and empathy and all those other things become tools for effectiveness, not
nice things to do to a patient,” said Smith.

One thing Bauer did when he was first starting a health literacy effort
in his organization was to send emails on a regular basis to key decision
makers relaying the results of studies he would hear about at health literacy
conferences. Eventually, those emails got through. “It was a powerful way
to get that message to a group of individuals who are too busy to go to
a conference on health literacy alone,” said Bauer. Francis suggested that
titling meetings or conferences, “the role of health literacy in improving
health equity,” would draw a wider audience, particularly from FQHCs,
as would “the role of health literacy in containing costs.”
Trudeau said that he had to break down two sets of walls in the health
care system and in the legal world. He noted that in 2016, he sent a pro-
posal to the Michigan Bar Association’s health law section for a conference
session on health literacy and why it matters to lawyers. Within hours, the
conference organizer called him and said she had been practicing health law
for 15 years and had never considered the relationship between health
literacy and her field. Since then, he has written articles for the Michigan
Bar Journal and similar publications. “We have to start targeting these new
markets that we do not often think of because we have to make the people
who do not hear our message or who are not predisposed to our message
have that ‘Aha!’ moment, then they can start making the connections them-
selves rather than having us do it for them,” said Trudeau.
When asked if she was seeing health literacy sessions at pharmaceutical
meetings, Hall said not as much as required, but health literacy is appearing
as a topic at conferences on medication adherence and patient experience.
She noted that in preparing for this workshop, she used her participation as
an opportunity to get in front of the senior executives at Lilly and get their
input. The answers, she said, were compelling. One leader acknowledged that
they have so many competing priorities that they do not even know what
they do not know, which in this case means they may not even know that the
field of health literacy exists. Another executive told her that the field needs
to make more noise and engage in more promotion with quick, repeatable
messages that break through the existing noise using creativity, humor, and
alternative media. A third executive, who is engaged with health literacy as
a critical issue and is one of her supporters at the company, suggested that
the field organize a health literacy forum for the pharmaceutical industry
that would exist in the noncompetitive space to share ideas and data and
stimulate research.
Noonan, commenting on advertising that tells people who have taken
a particular drug to call a legal team pursuing a class-action claim, asked
Trudeau if the day was coming when a commercial would tell people who
received a particular piece of patient education material that they could not
understand or act on to call a law office. “You raise an interesting point,
and I think that is the next frontier,” said Trudeau. “Now that we know

what we know regarding health literacy and what patients understand and
do not understand, that can guide our future development of the regula-
tions.” He predicted, however, that this would take time because laws
generally take time to change.
Before moving on to the second question, Noonan challenged the
panelists to advocate for a session or workshop on health literacy at all of
the professional conferences they attend. “Maybe that will also raise aware-
ness,” she said. She then posed the second question to the panel: “What are
the selling points or data that will move leadership in your specific industry
to take action?”
Bauer says he goes about tackling this problem differently. When he is
with a group of people from the health care industry, he asks them if they
are the health care experts in their family, and almost universally, everyone
raises their hand. Then he asks if anyone has taken a call from a friend
or family member and started shaking their heads because what they are
hearing is not true. Somebody in the group usually smiles at that point
and he asks them to share a story. “The reason this is so powerful is that
health literacy is about everyone,” said Bauer. “It is not about a group of
individuals that you could label. It affects everyone.” These stories, he said,
become powerful because they open the door to head and heart, and then
it is possible to share statistics and talk about readmission rates, patient
satisfaction, and reduced emergency department visit.
Francis responded with an admission. “I am still not a convert to
health literacy as a stand-alone entity,” she said. “I always use the term
patient-centered communication. Health literacy is a critical piece of that,
but as a pull-out, it does not work for me.” For the population she serves
through an FQHC, she is more concerned about literacy in general than
health literacy and more concerned about how people can become owners
of their own lives and not as much about keeping people with congestive
heart failure out of the hospital. “I think about power and equity and access
to the information that patients want to improve their lives, which does
have a health literacy piece, but I want it to be the information they want,
not the information we want them to have,” said Francis. For her, health
literacy, patient-centered communication, motivational interviewing, and
trauma-informed care together make a difference in creating vibrant orga-
nizations that serve people well, and that translates into improved quality
and contained costs.
Trudeau noted that a survey conducted several years ago by ProAssurance
Corp. found that 4 of the top 10 reasons for malpractice suits had to do with
weak patient education or a breakdown in communication between provider
and patient. In addition, one study found that the average 250-bed hospital
spends between $300,000 and $1 million annually defending medical mal-
practice claims. “This is not for paying the claims. This is for paying the

lawyers,” said Trudeau. A rough back-of-the-envelope calculation suggests

that U.S. hospitals spend between $173 million and $624 million annually
on legal fees associated with poor communication. “We need more focus on
this,” said Trudeau, suggesting it could be a powerful selling point to health
system executives.
Hall, who describes health literacy as a problem hiding in plain sight,
liked leveraging the idea that implementing health literacy practices would
allow health systems to stretch their dollars further. For pharmaceutical
industry executives, a message that would resonate with them would be that
health literacy could improve clinical trial awareness, increase enrollment
of diverse populations in clinical trials, reduce adverse events, and improve
medication adherence. At a more basic level, Hall has found that she needs
to be an excellent communicator with her colleagues and company leaders
and make sure she pays attention to the details, such as how she writes
and formats her emails to ensure the recipient can quickly scan, process,
and act upon a given request. “Make it as easy as possible for them to say
‘Yes!’” she said. Often, creating an effective, repeatable message that con-
nects health literacy to something important to the executive suite works
well. “There is a lot of strategy and psychology around what is successful,”
she said.
Bauer added that the executive suite is not homogenous, and chief
medical and chief nursing officers are going to need a different message than
the chief financial officer. “Understanding the pain points and addressing a
message to those pain points is the key,” said Bauer. He recalled that early
in his career, he was spreading the message to his organization’s physicians
and felt that while the message was getting across, he was not engaging or
activating them. Then he started talking to the providers and was able to
identify their pain point, which was that despite all their work in the office,
they were having to spend additional time answering emails and call backs
from patients and families seeking clarification of what they had heard in
the office. “When I started to address those things and how health literacy
might be a solution to that pain point, things started to change,” said
Bauer. He noted one study done at the Cleveland Clinic showing that the
teach-back method reduces the clinical encounter by 2 minutes, in addition
to preventing another call. After getting that type of information to physi-
cians and having them experience their own successes, the message spread
quickly.
Working in Queens, New York, where the residents speak more than
100 different languages and live largely in tight-knit communities, Smith
explained that delivering culturally sensitive care can win an entire com-
munity, not just the patients coming in for care. From a business model,
Northwell Health is now recognizing the power of becoming the preferred
provider for the Korean community, the Sikh community, the Russian-

Jewish community, and the hundreds of others spread throughout Queens.

“The payoff is tremendous, both in terms of loyalty and business,” said
Smith.
Taking off from that comment, Noonan asked the panel if there is a
business case for becoming the destination for medical care based on patient
experience rather than on offering robotic surgery or other technology.
Smith said absolutely, and his experience as a physician was that his prac-
tice increased during his 25 years as a primary care doctor because someone
walked out of his office satisfied. “When I got the next-door neighbor and
the uncles and aunts and cousins of the patient I saw that day, that is how
my practice grew,” he said. Francis agreed as well, although she extended
the idea to the entire health care team needing to be good at listening and
communicating to their patients. This is particularly true at an FQHC,
where the clients are often not heard in many aspects of their lives.
Noonan then posed the final question: “What do people who lead this
work in your organizations need to do to advance adoption of this work
if it is not already a highly reliable process in your organization or your
industry?” Francis replied that building leadership support is critical, as is
designing materials around both the internal customer and external cus
tomers, patients, and staff members. Also needed are metrics that reflect
the incorporation of changes in health literacy at the care team level and
with respect to quality of care.
Bauer joked that he is often asked how big his team is, and his answer
is, “You are looking at it.” In fact, though, he has an army working for him,
a group of people who do a little bit across the organization, such as patient
education teams at each of his health care system’s hospitals and in each of
its home health entities. He has people on the payer side and community
physician side at Johns Hopkins Health System who devote a little of their
time to this work because it has become their passion as a result of leader-
ship support and understanding that it is a vital component of delivering
good care. In fact, he said, leadership support has enabled him to create a
small amount of capacity for many people to spread the word about health
literacy, which is why he would reiterate what others have said about the
importance of cultivating leadership support as a first step.
In addition, Bauer said he would build strong partnerships with the
people who manage the organization’s EHR. Integrating health literacy
work into the EHR so it is easy for patients and the health care team to
access is essential to the work he is doing, said Bauer. Similarly, he would
establish a partnership with the quality assurance teams to create opportu-
nities to improve patient participation and satisfaction. He noted that in an
environment where finances are tight, he does not expect to get more money
or more people to drive his programs. “What becomes most incumbent
upon me is to share that message with passion, patience, and persistence to

continue that focus so in a time when there are so many conflicting priori-
ties, this remains one of them,” said Bauer.
Smith seconded the importance of building leadership support and
recruiting an army. His favorite tactic for recruiting that army is to collect
enough data to convince everyone there is a real problem. “Once everyone
believes we have a problem that has to be fixed, all of a sudden people get
activated,” said Smith. “It is very hard to ram a solution down someone’s
throat when they think you are trying to solve a non-issue.” Given the per-
vasiveness of the problem, he said it should not be hard to find supporting
data in any organization.
One takeaway Hall recognized in trying to activate the leaders in her
company is that there is much to borrow from the principles of health
literacy. This starts, she said, with understanding what leaders need, meet-
ing them where they are, and customizing the message according to what
is important to them, not what is important to her as the health literacy
director. It goes a long way, she said, when leaders feel understood regard-
ing the pressures they are under and the competing priorities they deal with
every day.
From a legal perspective, Trudeau would emphasize some of the ways in
which health literacy can advance the mission of risk compliance managers
and the legal staff. For the legal staff, it is important to get the message across
that health literacy and the law are not mutually exclusive. “I always talk
about law and health literacy,” said Trudeau. “It is a win-win, not one or
the other.” When Trudeau speaks to lawyers and risk compliance managers,
he mentions the regulations that support patient understanding, including
the caregiver acts that AARP has been advancing in some states. Delaware’s
regulation, for example, requires notice and training to the caregiver in ways
that they can understand, he explained. Another area he emphasizes is how
health literacy relates to organizational strategic priorities and regulations
about patient engagement, patient-centered care, and patient understanding.
At academic medical centers, regulations on informed consent are a big issue
with a tie-in to health literacy. The common rule, for example, focuses on
patient understanding of informed consent, and Trudeau believes it provides
a legal construct for arguing about the importance of health literacy.
All of those activities, said Trudeau, are just the first step. The second
step is training legal staff members and risk compliance managers on how to
weave health literacy principles into what they do. Picking up on Trudeau’s
last comment about training, Noonan equated the current situation for
health literacy to that which existed earlier when quality improvement was
introduced to health care and tens of thousands of physicians had no idea
what to do because they had not been trained. As the dean of a medical
school, she asked the panelists to address the challenge of how she is going
to train medical students and faculty in the principles of health literacy.

Smith said that he would start with medical students because they are
“infinitely easier to train than faculty.” Medical education at his institution
uses a problem-based learning curriculum, and communication skills and
patient exposure are part of that curriculum from the first day of school.
“This is a very different, radically student-centered curriculum,” said Smith.
From day one, students engage in elaborate exercises involving complex
cases for which the students learn both the biologic science that under-
pins the case and the social determinants of illness, health literacy issues,
and compliance with medication challenges. “We throw other things into
those cases, so they understand that effectiveness is never just knowing the
[material]. It is also turning your knowledge of the [material] into effective
action,” said Smith. What the medical school has learned is that segregat-
ing the nonbiologic aspects into separate exercises relegated them to the
“touchy-feely stuff.” “But when we incorporate them into the solution to
the patient’s problem, suddenly they became as important as understanding
the biochemistry and physiology of the patient,” Smith said.
Smith acknowledged that while this approach works well with stu-
dents, he does not think it would work at all with the attending staff. “I
am not sure what would, except pointing out to them that when they are
misunderstood with what they think are crystal clear patient conversations,
bad things happen to the patient,” he said.
Trudeau recounted a story about an emergency department physician
whose patient satisfaction levels were very low. At the time, he was experi-
menting with the idea of using Ask Me 3 as the framework to present infor-
mation and teach-back to verify knowledge transfer. When Trudeau went
back to talk to this physician a month later, the physician said his experi-
ence was humbling because he had just learned that his patients had never
understood him completely. As a result, that physician began using those
methods as his own quality assurance mechanism. Trudeau added that in
that emergency department, patient satisfaction scores rose 40 percent and
the staff became one of the most powerful proponents for his work. He
noted that his current institution includes exposure to health literacy, social
determinants of health, and health equity in the interprofessional training
that all health professionals must take. Francis said that in her work at an
FQHC, she disaggregates the population and does subpopulation man-
agement as a way of creating health equity and bringing health literacy
principles into play.
Hall said that health literacy is still in its infancy in her organization,
and her challenge is to continue building awareness and break through
the noise. “People have to buy in to the problem before they are ready
to think about solutions,” she said. One approach she has been doing is
collecting myths and misconceptions about health literacy that exist in her
company and is creating an on-demand eLearning experience around myth

usters. She is using this approach to address the misconception that health
b
literacy applies only to the work of a few groups in the company, or that
this is a “government-manufactured health crisis,” or something that only
applies to certain vulnerable populations—not the rest of us. “I am hoping
that this myth busters approach will challenge people’s assumptions about
what this really is and who it applies to,” said Hall.
Noonan concluded the panel discussion with her reflections. Her first
was wondering how to pay for educating the entire medical profession
about how to use health literacy principles. Just training all of the nurses
at her institution on teach-back and Ask Me 3 cost $4 million. “How do
we get somebody to write the check?” she asked. “How do we get some-
body to say this is a line item just like the electric bill?” In her opinion,
this is the cost of doing business well for patients. Her second comment
concerned the concept of coproduction, which means involving the patient
in the design process, whether it is of a letter, a bill, or a process. To her,
that gets to the heart of a patient-centered approach.
DISCUSSION
Alicia Fernandez from the University of California, San Francisco,
remarked that she works with language barriers and the law has been a
wonderful sword and something of a shield, with most of the big advances
resulting from lawsuits brought by patients. From her understanding, lan-
guage barrier work is an affirmative case through the Civil Rights Act, but
to her knowledge, there is no equivalent to Title VI for the right to under-
stand, or at least attempt to understand, one’s physician. In her mind, this
diminishes the sword, and she asked Trudeau if there have been discussions
about creating an affirmative standard to move this field forward. Trudeau
agreed that the sword is dull regarding health literacy and said data are
needed to promote the case for an affirmative standard. There is the Plain
Language Act of 2010, he noted, but it lacks teeth and is more of a guide-
line for agencies, not for hospitals. One avenue for sharpening the sword
might be through Joint Commission standards.
commented that, like Francis, she does not use the term “health literacy,”
believing it to be jargon just like “health activation,” “health engagement,”
and “patient engagement.” “I am not sure this is a term we want to ride
on from now on,” she said. Francis said that all this discussion is about
improved health outcomes, maybe safety and equity, and about patient-
centered, team-based care, where there is a natural role for health literacy
to meet patients around their priorities. Bernard Rosof from the Quality
HealthCare Advisory Group and Donald and Barbara Zucker School of
Medicine at Hofstra/Northwell pushed back on the idea that health literacy

and the like are jargon. “But team-based care, patient-centered care, family
and patient engagement and health literacy have all focused on the patient
at the center of our activity. If you lose that perspective that the patient is
the center of our activities, then you have lost what we are trying to accom-
plish,” said Rosof. “I would not like to lose the phrase ‘health literacy’ in
what we are talking about going forward. That seems to me to be a step
backward.”
offered his opinion: health literacy is based more on solutions rather than
on problems, and to him, he sees it as a proactive approach to try to pre-
vent health crises from arising and that it should be applied at the popula-
tion level as part of disease prevention. “We should not have to deal with
patients,” he said. “We should be focusing on the population.” Trudeau
agreed with this idea and said that if the nation were designing a health
care system from the ground up from a policy perspective, health literacy
would be a population-based approach. He commended Jennifer Dillaha
and her colleagues in Arkansas for taking that approach and wondered if
that approach would benefit everyone.
Jay Duhig from AbbVie Inc. asked the panel for ideas on how to inte-
grate health literacy into mHealth, digital health, and other technological
developments that are making rapid inroads into the health care system.
“To me, it is frightening that we would import the same problems that we
have now when we shift to tools that could potentially address them,” said
Duhig. Bauer replied that he did a survey in 2016 with more than 1,000
health care professionals in his organization. “What we found when you
start talking of integration of health literacy into the electronic world is that
our staff did not know what educational materials were approved to use
and what was not approved, how to find approved materials, and which
documents are the right ones to use,” said Bauer. For example, a search of
his organization’s EHR for diabetes turns up 236 documents. “Which is the
right one to give to patients?” he asked.
One lesson Bauer learned was that it was harder to work in the EHR
than it is to go to Google and pull information, which is not the ideal situ-
ation, and as a result, he has been working to make it easier to work in the
EHR rather than going to Google for information. Today, when a health
care professional activates a care plan, the EHR deploys a teaching plan
with teaching points using health literate materials that support the patient.
The next step will be to make it easier for patients to access that informa-
tion themselves through the patient portal.
One concern going forward, he said, is the proliferation of health-
related apps for smart phones. “Are they good? How vetted are they? How
are they maintained?” he asked. His hope is to not end up where every
patient has a different app with no single source of vetted information. As

a model for what he hopes will develop, Bauer noted the learning process
that bariatric surgery patients go through before their surgery. There is a
6-month minimum educational period preceding surgery, and there are apps
built to support the patient that allow them to report to and interact with
their medical team.
Regarding mHealth, Trudeau is worried that the technologies being
developed are following the same path as EHRs, which is that they are
being developed with the goal of saving chief financial officers money
and not for the benefit of patients. In his opinion, the developers of these
technologies need awareness training and should be encouraged to design
their technologies from the ground up rather than to be compatible with
the leading EHR products. It may be necessary, he said, to incentivize that
type of development through regulations or grants.
Stanton Hudson from the University of Missouri noted that the discus-
sion has not included the patient as a member of the health care team, and
he wondered if any of the panelists had success partnering with patients to
strengthen the case for health literacy. Bauer replied that he had just had
his second meeting with his patient and family advisory council dedicated
to health literacy. “One thing they will tell you is to involve them at the
beginning,” said Bauer. His plan going forward is to have this group review
the strategic plan he developed to make sure the members’ perspective is
included in the plan to ensure that efforts going forward are driven by a
true partnership with the members of his health care organization.
Francis wondered if the field should start asking what the role of health
literacy is in health care and helping individuals improve their health and
well-being, listening to the answers, and then identifying natural insertion
points for health literacy. She noted that she uses a technique known as
empathic inquiry. The doctors and nurses found that once they started ask-
ing different questions that helped them better understand their patients’
lives and how they could help, they started getting completely different
answers. Smith added that his institution has experienced what he calls
sentinel events in which well-informed patients who understood their ill-
nesses warned their health care teams that something bad was going on,
and instead of being listened to, they were labeled as aggressive, disruptive
patients. “If we are going to educate and empower our patients, we have a
lot of work to do on the culture of the care team to have care teams actually
listen to the patient,” said Smith.

Reflections on the Day
As is customary at a Roundtable on Health Literacy workshop, the

final session was devoted to roundtable members’ reflections on the day’s
presentations and discussions. Catina O’Leary from Health Literacy Media
began the session by commenting that much of the discussion during the
day focused on patients and the care team, with only a slight nod to com-
munities and health literacy at the population level. The field needs to think
bigger and stop doing the same things that it has been doing for the past
20 years, she said. In the same vein, she agreed with comments made by
Partnership Federally Qualified Health Center’s Laurie Francis about the
terms the field uses. This struck her as highly relevant, given that health
literacy now sits under a bigger tent with more stakeholders and requires
different solutions and strategies that are more inclusive. She then referred
to observations made by the Hofstra/Northwell Zucker School of Medi-
cine’s dean, Lawrence Smith, about changing the culture of the care team;
O’Leary wondered how health care can create a culture that changes how
it thinks about power and privilege and decision making. She also voiced
the need to stop blaming the patient and for the health care system to adopt
the attitude that health literacy is not its fault, but it is now the system’s
problem to solve from the perspective of the patient.
Kim Parson from Humana focused on improvements she heard that the
health care profession needs to make time for, including eliminating silos
within and between organizations, eliminating the check box mentality of
an after-visit summary, making health records portable, developing health
literacy metrics that measure health outcomes, and designing and co-creating
policies, processes, and communications with its patients, caregivers, payers,
73

and policy makers. Parson said she heard the need for focusing on teaching
wellness and how to engage with the health industry from an early age, to
accept responsibility for mistakes and be held accountable for making things
right, to encourage patients to take an advocate or caregiver to all physi-
cian visits to record instructions and ensure the patient gets all questions
answered, and to rethink using the term “health literacy.” Also needed is
more effort incorporating health literacy into the solutions for a patient’s
problems, busting myths, and most importantly, finding time to listen.
Steven Rush from the UnitedHealth Group appreciated that the day’s
discussions moved out of the patient–clinician environment to hear what
pharmaceutical companies, health insurers, and others are talking about
regarding health literacy. He agreed that there may need to be new terms
to talk about health literacy with certain target audiences, and that it is
important to ask how a health literate communication solution will address
a specific problem. Rush also appreciated the idea that the National Com-
mittee for Quality Assurance is talking about creating communications in
clear, understandable, everyday language.
One message that Christopher Dezii from Bristol-Myers Squibb heard
was the need to recognize in building the case for health literacy that it inex-
tricably links to many other concepts. For example, he works on disparity
issues, which at their core contain a health literacy issue. Referring to the
hurricanes that struck the United States and its territories in the Caribbean,
he said it would be important and reasonable to declare the situation with
health disparities a national disaster, given what those events revealed.
That, he said, might mobilize action.
Michael Villaire from the Institute for Healthcare Advancement com-
mended the authors of the commissioned paper for assembling the evidence
supporting the case for health literacy and the ensuing discussions on how
to develop convincing arguments using that evidence to sway the people
who still think of health literacy as fluff, as a nice but not essential thing
to do. He then challenged everyone attending the workshop who provided
good examples of what they are doing in their organizations to “identify
a peer organization and ask them to step up to the plate and do the very
same thing so that we can start to spread this out,” said Villaire. “We need
to get outside of this room, have action, and start to have a domino effect
out there.” He voiced concern about the challenge of disseminating the
good programs that the authors found in the grey literature, rather than
in the peer-reviewed literature, and encouraged those who develop those
programs to talk about them with their peers.
Lori Hall from Eli Lilly and Company said an important message she
heard is that empathy cannot be outsourced, automated, digitized, or oper-
ationalized. Empathy, she said, emphasizes the power of human touch and
a kind, caring approach to change everything for a patient, including the

REFLECTIONS ON THE DAY 75
trajectory to meaningful conversation and an engaged, empowered patient

and family. She also encouraged the roundtable to include the patient voice
in its work going forward.
Cindy Brach from AHRQ heard that there is no single case for health
literacy, and that the argument depends on the audience. She was struck
by the importance of creating arguments based on solving problems that
are important to an organization’s leadership and suggested enlarging
that idea to issues that are important to an organization’s priorities. “Is it
patient safety? Is it patient engagement? Is it becoming a patient-centered
medical home? Health literacy fits into all of those,” said Brach. “Let
the health literacy case be a chameleon.” At the same time, buy-in from
leadership does not always result in change because change ultimately
results from the bottom up, from getting clinicians and other staff who
have contact with patients to act. “We need to grab teachable moments
as they occur, and we need to make health literacy work for the people
who have to do the transformation work and make the case at that level,
too,” she added.
She noted that she heard two strategies for getting people to the “Aha!”
moment. The first was to get staff to try some health literacy strategies
and realize their patients have not been understanding them. “Just try that
teach-back method with your last patient of the day or do a brown-bag
medication review and see whether there are any medication errors going
on,” Brach suggested. The second strategy is to use patient narratives to
win hearts and minds.
For Jay Duhig from AbbVie Inc., the message that stood out was on
the opportunities to apply health literacy principles when communicating
with caregivers. He also thanked the roundtable members for their willing-
ness to expand the definition of health literacy and the many dimensions
in which health literacy applies. He reiterated Brach’s comment about the
importance of using patient narratives when making the case for health
literacy, and noted that he has brought in patients and caregivers to speak
to audiences in his organization and has seen the effect their stories have
on winning hearts and minds.
Earnestine Willis from the Medical College of Wisconsin also appreci-
ated starting the day with the patient perspective and said those stories
drove home the point that health literacy is a tool or tactic to bring the
humanity back to the practice of medicine and to get providers to listen to
and engage their patients. She commented on the use of paid community
investigators and wondered if there should be paid community institutional
review boards to ensure that research reflects the community voice. Her
final comment was on the need for health care systems to be more nimble
and organic in how they serve their customers and to remember that com-
pliance does not equal success when it comes to consumers.

Wilma Alvarado-Little from the New York State Department of Health

thanked the speakers on the first panel for their powerful stories and hoped
they were not retraumatized by relaying their stories to the workshop.
The important points she heard from those presentations were that com-
munication breakdown was the most common cause of medical errors,
that Martin Ratermann told his story not looking for sympathy but to be
a partner in the roundtable’s efforts, and Jennifer Pearce’s comment that
health literacy is about experience, not words. Regarding the commissioned
paper, she thanked the authors for identifying gaps that she now sees as
opportunities to continue to move the field forward and look at the case
for health literacy from a strength-based perspective. She then commented
on Hall’s mention of motivational interviewing and trauma-informed care,
noting that those are about meeting patients where they are and that they
can apply equally to meeting the provider where she or he is when trying
to make them effective partners. Alvarado-Little also spoke about the need
to define leadership and remember that leaders are not always the people
who have a particular title, and she wondered how to help those doing this
work who see themselves as leaders or potential leaders in this field and in
their organizations.
Jennifer Dillaha from the Arkansas Department of Health said the mes-
sage that stood out the most for her in almost every presentation was the
supreme importance of listening and treating people with respect. “If we
do not find the time and a way to do that in whatever system we work in,
then we cannot succeed,” said Dillaha. She added that there must be ways
for those working in this field to live that message, promote it, and imple-
ment it in their organizations.
One important point for Suzanne Bakken from Columbia University was
that while technology can be a problem, it must be part of the solution, and
it can be when using the principles of co-producing and co-designing with
patients. She noted that the National Library of Medicine will be releasing
a strategic plan that completely changes the definition of what a librarian
is and has many initiatives related to the personal health library, which she
predicted will have major health literacy implications. She also predicted that
the OpenNotes movement will have great implications for health literacy
and present new opportunities for the field to make health information more
meaningful to patients.
Bakken then announced that the National Academies had opened a new
website centered around the 2017 Pathways to Health Equity report,1 which
includes a discussion of the link between health equity and health literacy
(NASEM, 2017). She also noted that the home for work on the science of
1 For more information, see https://www.resources.nationalacademies.org/infographics/
healthequity/healthequity.html (accessed February 1, 2018).

REFLECTIONS ON THE DAY 77
caregiving is at the National Institute of Nursing Research, which has a grant

program focused explicitly on creating health literate resources for caregivers
of individuals with Alzheimer’s disease and other forms of dementia.
Francis said that she started seeing health literacy differently as the day
progressed. She also wondered if someone could develop a smartphone app
that would combine 23andMe and the Adverse Childhood Events score
to look at how culture and epigenetics work together to create resilience
from a health literacy standpoint. She also thought about health literacy
as part of the health equity issue and suggested combining the health lit-
eracy and health equity efforts to work together on important drivers of
health and well-being.
Stacey Rosen from the Donald and Barbara Zucker School of Medicine
at Hofstra/Northwell commented that the needle will never move as long as
health literacy is bolted on rather than baked in. She noted how the novel
curriculum that Smith developed for medical students at his institution has
managed to bake health literacy into how students learn and has produced
physicians who care about how they listen to and speak with patients.
For her, that reinforces the idea that the definition of health literacy must
evolve to include how medical personnel communicate both as consumers
and providers of health. She reiterated Alvarado-Little’s comment on the
importance of meeting the health care workforce where it is and remem-
bering that nobody likes to communicate badly with patients. Just as
consumers need training to be more health literate, so too do members of
the health care profession. “If we are educating patients to come in with a
family member, to come in with a list of questions or a brown bag [with
their medications], then we need to educate the health care workforce on
how to deal with that educated consumer,” she said.
Andrew Pleasant from Health Literacy Media noted the importance of
including rigorous qualitative and quantitative evaluation with research.
Both are needed, he said. “Numbers will get you in the door, but stories will
win hearts and minds, and that is what we need to do for health literacy,”
said Pleasant. He also commented on the term “health literacy” as jargon
and said that it will become dogma. “Health literacy is a social construct,
which means it is a living idea that will and should evolve,” he said. He
reminded the workshop attendees that health literacy started in the clinical
context and that it took a deficit approach and often blamed consumers.
Most of health, however, exists outside of the clinic, and if the field remem-
bers that, it broadens the case for health literacy into prevention instead
of sick care. Sick care, he said, is not where most people live, and if health
literacy becomes part of prevention, it can then be seen as a resource for
life and not an end in and of itself.
said she loved starting the workshop with presentations by patients, who

she said communicated earnestly on so many levels. She also said she did
not care what the field calls health literacy and that what is important is
to recognize that health care is changing, so much so that the roundtable
has discussions today about things that did not exist when she joined
3 years ago.
Alicia Fernandez from the University of California, San Francisco, said
that she calls health literacy “effective patient care,” and that is how she
teaches medical students about communication issues. In that regard,
she resents having to build a case for health literacy or health equity
because why would anyone be in favor of ineffective patient care. What she
found useful in the discussion, and that she will use going forward, was the
idea of identifying pain points or other ways to communicate that did not
completely adopt the assumptions of the people who run an effective health
care system. One of her worries as a physician who works in a low-income
setting at San Francisco General Hospital is thinking that good care some-
times requires more money and more resources, and she dislikes the premise
that to discuss effective care, she has to say it will save money. “Sometimes
it will, but often it will not and that is okay, too,” said Fernandez.
Bernard Rosof from the Quality Health Care Advisory Group and the
Donald and Barbara Zucker School of Medicine at Hofstra/Northwell,
offering the final comments, said that while health care has changed and
will continue to change, the need for effective communication has not,
and in fact, it has only increased. “We can call health literacy what we
will, but the need for communication remains and skilled communication is
important,” he said. He then told a story about when he and Smith started
practicing medicine together during the first 20 years of their careers. At
that time, primary care doctors went to the hospital, and hospitalists and
emergency department physicians did not exist. Instead, physicians gath-
ered in the hospital coffee shop where they could talk to one another about
patient care, their concerns about health care delivery and how they were
practicing medicine, and about how to communicate with patients. “The
absence of the coffee shop obviously does not mean we still do not learn
communication skills, but it was a place you could practice it,” said Rosof.
Referring to his presentation, Rosof said the National Quality Strategy
and the Quadruple Aim are about improving care and improving the health
of the population and the community, which means taking the underserved
into consideration. In his opinion, it is not possible in the absence of effec-
tive communication to address the health disparities that affect underserved
populations. He also believes that the goal of improving health care for the
entire population is something that the young people who are going into
health care today are taking on, and that is something of which he is proud.
On that note, Rosof adjourned the workshop.

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Appendix A
Workshop Agenda
Building the Case for Health Literacy: A Workshop
November 15, 2017

Lecture Room, National Academy of Sciences Building
2101 Constitution Avenue, NW
Washington, DC 20418
8:15–8:30 Welcome and Introductions

Bernard Rosof, Roundtable Chair
8:30–9:30 Patient Perspective on the Need for Health Literacy

8:30–8:50 Marty Ratermann
8:50–9:10 Jennifer Pearce, M.P.A.
9:10–9:30 Julie Steffen
9:30–10:00 Discussion
10:00–10:05 Introduction of Speakers
10:05–10:25 Presentation of Commissioned Paper

Stanton Hudson, M.A., Center for Health Policy,
University of Missouri
R. V. Rikard, Ph.D., Senior Research Associate,
Department of Media and Information, Michigan
State University
83

10:45–11:00 BREAK
11:00–12:15 Panel: Why Health Literacy?

11:05–11:25 Why Health Literacy Is Important
Cathryn Gunther, Vice President, Global
Population Health, Merck Sharp & Dohme
Corp.
11:25–11:45 Achieving the Quadruple Aim: Health Literacy as an
Essential Component
Bernard Rosof, M.D., MACP, CEO, Quality
HealthCare Advisory Group
11:45–12:15 Discussion with Panel Speakers
12:15–1:00 LUNCH
1:00–2:45 Adopting Health Literacy in an Organization

1:05–1:25 Adoption and Early Implementation of Health
Literacy in a Health System: What Research Shows
Audrey Riffenburgh, Ph.D., President, Health
Literacy Connections
1:25–1:45 A Case Study: Adopting Health Literacy in a Health
Plan
Chris Carlson, Senior Vice President Consumer
& Customer Experience, UnitedHealthcare
1:45–2:05 A Case Study: Adopting Health Literacy in a Public
Health System
Jennifer Dillaha, M.D., Medical Director for
Immunizations, Medical Advisory for Health
Literacy and Communication, Arkansas
Department of Health
2:05–2:45 Discussion with Panel Speakers
2:45–3:00 BREAK

APPENDIX A 85
3:05–4:00 Moderated Discussion: Where Do We Go from Here?

Moderator:
Laura Noonan, M.D., Director of the Center
for Advancing Pediatric Excellence (CAPE) at
Levine Children’s Hospital
Panelists:
Legal
Christopher Trudeau, J.D., University of
Arkansas for Medical Sciences and University of
Arkansas William H. Bowen School of Law
Pharmaceutical
Lori Hall, Director of Health Literacy, Eli Lilly
and Company
Health Care System
Thomas K. Bauer, M.B.A., RT, Senior Director
of Patient and Family Education, Johns Hopkins
Health Centers
Federally Qualified Health Center
Laurie H. Francis, M.P.H., RN, Executive
Director, Partnership Health Center
Education/Training
Lawrence G. Smith, M.D., MACP, Dean,
Donald and Barbara Zucker School of Medicine
at Hofstra/Northwell
4:30–5:00 Reflections on the Day
5:00 ADJOURN


Appendix B
Biographical Sketches of Workshop

Moderators, Speakers, and Panelists
Thomas K. Bauer is the Senior Director of Patient and Family Education at

the Johns Hopkins Health System. Mr. Bauer has led the research develop-
ment and implementation of health literacy initiatives in two health systems
encompassing more than 40,000 health professionals in both the academic
and community health setting. Throughout his career, his primary focus
has been equipping patients with the knowledge necessary to become active
partners in their own care.
Mr. Bauer’s work has been recognized by the National Academies of
Sciences, Engineering, and Medicine for the successful deployment of health
literacy tactics addressing the 10 attributes of a health literate organization.
He has also been featured in two published case studies by the Agency for
Healthcare Research and Quality. Mr. Bauer is the Moderator Emeritus of
the World Health Organization course Population Health Community on
Global Health Delivery–Online.
Chris Carlson is the Senior Vice President, Consumer & Customer Experi-
ence at UnitedHealthcare Shared Service Operations. Mr. Carlson’s primary
responsibilities include developing and deploying strategic initiatives that
enable the consumer strategy and an improved experience for members.
These initiatives include consumer services and consumer communications
improvements, measurement and reporting tools that support consumer
vision, and collaboration across UnitedHealth Group.
Jennifer Dillaha, M.D., is the Medical Advisor for Health Literacy at the
Arkansas Department of Health (ADH). Under her leadership, low health
87

literacy has been recognized as an important public health problem in

Arkansas, and the ADH has integrated health literacy into its strategic plan.
Until recently, Dr. Dillaha served as the Chair of the Partnership for Health
Literacy in Arkansas, which is the Health Literacy Section of the Arkansas
Public Health Association.
Dr. Dillaha has been with the ADH since 2001, where she has played a
variety of additional leadership roles. In November 2013, Dr. Dillaha became
the Medical Director for Immunizations. Her charge in that role is to improve
Arkansas’s immunization rates, particularly among adults. She is uniquely
prepared for that role as a physician with specialty training in internal medi-
cine and subspecialty training in infectious diseases and in geriatric medicine.
She has faculty appointments as an assistant professor in the University of
Arkansas for Medical Sciences. She is currently serving as the Chair of the
Arkansas Cervical Cancer Task Force and Chair of the Arkansas Immuniza-
tion Action Coalition’s Board of Directors.
Laurie Francis, M.P.H., RN, has been working in health care for the past
20 years, constantly learning ways to reach deeper (or broader) to improve
health and well-being in individuals and communities. After working in
critical care and beginning a number of prevention-type programs, she
founded a community health center (medical, dental, behavioral health,
education) more than 17 years ago. Related to this work and more recent
exposures, she has given numerous talks concerning patient-centeredness,
staff engagement, organizational alignment, health literacy, and measure-
ment systems that drive improvement. Her publications are in the areas of
health literacy, outcomes, and self-efficacy.
During the summer of 2017, Ms. Francis returned to health center
leadership after 6 years at Oregon’s Primary Care Association as Senior
Director of Innovations. There she led an incredible team of talented indi-
viduals while advancing the understanding and implementation of advanced
and emergent models of care, services, and partnerships to move upstream
in order to dramatically improve population health and well-being. Now,
Ms. Francis resides in Missoula, Montana, and serves as Executive Director
of Partnership Health Center and continues to experiment with programs
that attend to drivers of health while focusing significantly on staff engage-
ment and joy at work. She serves on a number of boards as well as the
National Academies of Sciences, Engineering, and Medicine’s Roundtable
on Health Literacy. Her educational background includes a bachelor’s in
human biology from Stanford, a bachelor’s in nursing, and an M.P.H. from
the University of Washington.
Cathryn Gunther started her career with Merck in sales, health sciences,
and management in support of the commercial business. She was recruited

APPENDIX B 89
into the AstraMerck joint venture to design and launch the marketing and
sales organization. She co-led the steering committee and project teams that
reengineered traditional methods of marketing prescription drugs resulting in
rapid revenue growth from $600 million to more than $5 billion in 6 years.
In 1999, she founded and served as Managing Director of Graham
Group Consulting, providing executive consulting services to a diverse set
of health care clients, including Fortune 50 payers, life sciences, and con-
sumer products companies, as well as provider systems and policy organiza-
tions in the United States and globally. She served as Senior Vice President
of Market Development for a start-up mobile health care technology firm
developing end-to-end solutions designed to improve patient adherence to
chronic care management plans.
Ms. Gunther rejoined Merck in 2012 after working as an executive
health care strategist, innovator, and collaborator. She developed a new
U.S. market commercial strategy for Merck’s pharmaceutical business,
helped shape the corporate strategy, and led the execution of a transfor-
mational business-to-business strategic engagement model with Merck’s
top costumers. Ms. Gunther is recognized for respectfully challenging the
status quo, championing an externally informed perspective, and advanc-
ing the organization’s competencies to increase sustainable shared value
and business performance. As a health care consumer advocate, she led a
cross-functional team to design, develop, and pilot technology solutions
to improve medication adherence—a problem that costs the United States
$290 billion annually. She developed a U.S. Center of Excellence and a
global Community of Excellence in adherence.
Most recently, Ms. Gunther was appointed to launch Merck’s Global
Population Health platform to establish the corporate framework and
leadership for innovative population health approaches that create sustained
social and business value. Areas of focus include antimicrobial stewardship,
prevention through immunization, women’s health, noncommunicable dis-
eases, and Merck’s own employee health and well-being.
She serves on the Board of the National Business Group on Health and
its Institute on Health, Productivity, and Human Capital. She also serves on
the Board of Directors at Grand View Health Foundation and is a member
of the Global Chief Medical Officer’s Network. Ms. Gunther earned a B.S.
in biology, minor in chemistry, from the University of Connecticut.
Lori K. Hall, B.S.N., is the Director of Health Literacy at Eli Lilly and Com-
pany. Ms. Hall brings to this role more than 30 years of health care experi-
ence in the clinical setting as well as in the diagnostics and pharmaceutical
industries. Throughout her career, her focus has been in the areas of patient
education, adult learning, effective communication, project management,
training, and leadership development.

Ms. Hall serves as the source of health literacy expertise at Lilly to

support the creation of industry-leading patient experiences throughout the
drug development and commercialization continuum. Her scope of work
and responsibility are centered on providing visibility and guidance as well
as helping to set organizational expectations and accountability for all
aspects of communications with patients as it plays a direct role in support-
ing Lilly’s corporate priorities around medication adherence, patient safety,
clinical innovation, launch preparedness, real-world evidence, corporate
responsibility, value-based contracting, and informed patient engagement.
Stanton Hudson, M.A., is the Associate Director of the Center for Health
Policy at the University of Missouri. Mr. Hudson is a health literacy expert
and health policy analyst with 20 years of experience in health services
research and 13 years of experience in health literacy with a focus on cur-
riculum development. He earned an M.A. in sociology from the University
of Missouri and a B.A. in history, political science, and sociology from
Columbia College. Over the past decade he has led the development and
implementation of health literacy education programs and curricula for
consumers, health professionals, public health agents, consumer advo-
cates, and health educators. In 2014, he became a National Conference
for Community and Justice of Metropolitan St. Louis-Certified Diversity
Facilitrainer and has been developing and implementing innovative inclu-
sion and diversity workshops for education, health, public health profes-
sionals, and students that bridge cultural competency and health literacy.
Laura K. Noonan, M.D., joined the Department of Pediatrics at Carolinas

Medical Center (CMC) in 1994. She is a founding organizer and current
Director of the Center for Advancing Pediatric Excellence (CAPE) at Levine
Children’s Hospital at CMC. CAPE was established in 2007 to implement
a Quality Improvement (QI) curriculum for pediatric residents and provide
QI project and data management for the department. CAPE’s innovative
curriculum has been recognized at the national level with peer-reviewed
publications, national presentations, and it won the 2015 Children’s Hospi-
tal Association Pediatric Quality Award in the Delivery System Transforma-
tion category. For more than 20 years her focus has been on health care QI,
teaching courses at the local, regional, and national levels. She is currently
involved in QI teaching or coaching roles for a variety of state and national
collaboratives. In addition to being a QI consultant for PARTNERS Patient
Powered Research Network, she is a QI consultant and Parent Advisor for
Pediatric Rheumatology Care and Outcomes Improvement Network.
Dr. Noonan also has extensive experience teaching and advising about
health literacy. She was the Collaborative Director for Carolinas Health-
Care System’s QI-based health literacy initiative for 24 facilities across

APPENDIX B 91
the second largest nonprofit health care system in the United States. She
is currently co-chair of the system’s Health Literacy Governance Council,
and has been an advisor for subsequent phases of the original initiative.
She frequently lectures on this topic locally and nationally, including at the
National Academies of Sciences, Engineering, and Medicine’s Roundtable
on Health Literacy; the Institute for Healthcare Improvement’s National
Forum; the American Academy of Pediatrics’ National Convention; and
Boston University’s Health Literacy Annual Research Conference. From
2015 to 2016, she was included in an Agency for Healthcare Research and
Quality grant as part of a Technical Expert Panel for Organizational Health
Literacy. She continually works on a national level to integrate health lit-
eracy into broader health care discussions; for example, through her recent
participation in a roundtable hosted by the Secretary of Health and Human
Services and a think tank sponsored by RTI International.
Jennifer Pearce, M.P.A., is the founder of Plain Language Health, a consul-

tancy specializing in coproducing content and care experiences that patients
can easily understand and act on.
A passionate advocate for patient engagement through understanding,
she brings 18 years of experience collaborating with researchers, providers,
and patients to advance health literacy. Ms. Pearce pioneered and led Sutter
Health’s award-winning health literacy initiatives, in addition to directing
patient experience research within the 24-hospital system’s digital health
department. Prior to joining Sutter, she led national patient engagement
efforts for five National Institutes of Health–funded genetic studies of auto-
immune disease at the University of California, San Francisco. Ms. Pearce’s
work earned ClearMark Awards of Distinction in 2012 and 2013 from
the Center for Plain Language in Washington, DC. Today she serves on the
center’s board of directors and consults on health literacy initiatives for cli-
ents in the public, private, nonprofit, and academic and government sectors.
Martin Ratermann is a craftsman from central Missouri with roots in

St. Louis. He started in the carpentry trade in 1973 and started Ratermann
Woodworking in 1981. Mr. Ratermann has done residential cabinetry, high-
end architectural woodwork¸ and numerous liturgical commissions. He has
also built fine handcrafted furniture.
He represented Missouri in Phyllis George’s 1994 book: Celebrating the
Creative Work of the Hand. In 2009, his furniture was selected as one of
the top 100 sustainable products in the United States by Ogden Press and
Natural Home magazine. His work is in private homes and public spaces
in 22 states throughout the country. Mr. Ratermann is a survivor of cancer
that was the result of medical errors. He speaks publicly to medical schools,
health care providers, and advocates for patient safety.

Audrey Riffenburgh, Ph.D., has more than 20 years of experience in health

literacy work. She holds a Ph.D. in health communication. Her dissertation
topic was the implementation of health literacy initiatives in health care
organizations. Dr. Riffenburgh is the President of Health Literacy Con-
nections (formerly Plain Language Works). The firm specializes in helping
health care systems and providers, public health departments, academic
researchers, tribal communities, and others effectively communicate health
information to patients, families, and the public. Its services also include
helping organizations align health literacy strategies to support their major
organizational goals. For several years, Dr. Riffenburgh was the Senior
Health Literacy Specialist for an academic health system, where she led
efforts to improve communication and access for patients and families and
to become a more “health literate organization.” She managed organiza-
tional change efforts and consulted with leaders at all levels on using health
literacy strategies to strengthen outcomes and meet organizational goals.
She was on the faculty of the Health Literacy Summer Institute (nationally
recognized as the premier learning opportunity in health literacy and plain
language) for more than a decade. Dr. Riffenburgh is a founding member of
the Clear Language Group, a national consortium of health literacy, plain
language, and intercultural communications specialists established in 2000.
She is co-author of Building Health Literate Organizations: A Guidebook
to Achieving Organizational Change (2014). Dr. Riffenburgh’s recent con-
tributions to the field include serving on the Technical Expert Panel for
the Patient-Centered Outcomes Research Translation Center, 2016–2018;
the Health Literacy Job Task Analysis Task Force, 2016; and the Techni-
cal Expert Panel for the research project “Making Patient Navigation
and Understanding Easier: Developing Quality Improvement Measures,”
2015–2016.
R. V. Rikard, Ph.D., is a Senior Research Associate in the Department of

Media and Information at Michigan State University. Dr. Rikard’s research
focuses on how the social determinates of health affect health literacy, the
intersection of health literacy and health disparities, and the social effect of
information and technology on health.
Dr. Rikard is a founding member of the International Health Literacy
Association, a member of the International Union for Health Promotion
and Education Global Working Group on Health Literacy, and the Health
Equity Initiative. Dr. Rikard is also an Honorary Fellow in the School of
Health and Social Development at Deakin University in Victoria, Australia.
Bernard M. Rosof, M.D., MACP (Roundtable Chair), is at the forefront

of national initiatives in the areas of quality and performance improve-
ment. Following completion of a fellowship in gastroenterology at the Yale

APPENDIX B 93
University School of Medicine, Dr. Rosof practiced internal medicine and

gastroenterology for 29 years. He is a Past Chair of the Board of Directors
of Huntington Hospital (Northwell Health) and is a current member of the
Board of Overseers of the Health System. He is a past member of the Board
of Directors of the National Quality Forum (NQF), and the Co-Chair of the
National Quality Partnership (NQP) convened by the NQF to set national
priorities and goals to transform America’s health care. The NQP was advi-
sory to U.S. Department of Health and Human Services former-Secretary
Sebelius in the development of the National Quality Strategy.
Dr. Rosof is a Past Chair of the Physician Consortium for Performance
Improvement convened by the American Medical Association that con
tinues to lead efforts in developing, testing, and implementing evidence-
based performance measures for use at the point of care. He was a member
of the Clinical Performance Measurement Committee of the National Com-
mittee for Quality Assurance and the Chair of the Physician Advisory
Committee for UnitedHealth Group. He has chaired committees for the
New York State Department of Health and the Institute of Medicine, and
is currently the chair of the Roundtable on Health Literacy of the National
Academies of Sciences, Engineering, and Medicine, and Chair of the New
York State Department of Health Committee on Quality in Office-Based
Surgery. Dr. Rosof is CEO of the Quality in HealthCare Advisory Group,
which provides strategic consultative services to the community of health
care providers interested in improving the quality and safety of health care
delivery in the United States. Dr. Rosof is a professor of medicine at the
Zucker School of Medicine at Hofstra/Northwell in New York. He is a
Master of the American College of Physicians (ACP) and Chair Emeritus of
the Board of Regents of the ACP. Dr. Rosof is the recipient of the Laureate
Award from the ACP and the Theodore Roosevelt Award for Distinguished
Community Service. He has also received the 2011 Founders Award pre-
sented by the American College of Medical Quality in recognition of his
long-standing national leadership and exceptional ability to foster and
support health care quality improvement. Dr. Rosof is also the recipient of
the 2012 Stengel Award from the ACP for outstanding service as well as
his influence in maintaining and advancing the best standards of medical
education, medical practice, and clinical research, and received the New
York University Alumni Leadership Award in 2016.
Lawrence G. Smith, M.D., MACP, is the Executive Vice President and

Physician-in-Chief of Northwell Health. As Physician-in-Chief, Dr. Smith
is Northwell Health’s senior physician on all clinical issues. He previously
served as Northwell’s Chief Medical Officer. Dr. Smith is the founding Dean
of the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell,

which received full accreditation by the Liaison Committee on Medical Edu-

cation and whose first class graduated in May 2015.
Dr. Smith earned a bachelor of science degree in physics from Fordham
University and a medical degree from the New York University School of
Medicine. His residency in internal medicine at Strong Memorial Hospital
was followed by military service as a captain in the Army Medical Corps
at Fitzsimmons Army Medical Center in Denver.
Dr. Smith has held senior leadership positions in national societies for
medical education and residency training, authored numerous peer-reviewed
publications in the area of medical education, and he has received many
awards and honors from national and international organizations. He is a
member-at-large of the National Board of Medical Examiners and a member
of the Board of Visitors of Fordham College. He is also a former Regent
of the American College of Physicians and a former member of the board of
directors of the American Board of Internal Medicine. In April 2011, he was
elected to Mastership of the American College of Physicians. The Arnold P.
Gold Foundation invited Dr. Smith to join its board in early 2017.
Christopher R. Trudeau, J.D., is an associate professor in the University of

Arkansas for Medical Sciences’ Center for Health Literacy, and he holds a
dual appointment with the Faculty of Law at the University of Arkansas
Little Rock William H. Bowen School of Law. He is an internationally rec-
ognized expert on health literacy, plain language, and informed consent. He
has spoken for the Food and Drug Administration, the Centers for Disease
Control and Prevention, and many health systems. He specializes in devel-
oping clear, health literate communication that both engages patients and
complies with health care regulations.

Appendix C
Improving Health and the Bottom Line:

The Case for Health Literacy
By
Stan Hudson, M.A., CDFT
R. V. Rikard, Ph.D.
Ioana Staiculescu, M.P.H., CDFT
Karen Edison, M.D.
Commissioned by the Roundtable on Health Literacy

Health and Medicine Division
of the National Academies of Sciences, Engineering, and Medicine1
1 The authors are responsible for the content of this article, which does not necessarily rep-
resent the views of the National Academies of Sciences, Engineering, and Medicine.
95


Center for Health Policy
School of Medicine
DC375.10 MA105D
Columbia, MO 65212
Phone: 573-884-7549
Email: [email protected]
R. V. Rikard, Ph.D.
Department of Media and Information
Michigan State University
409 Comm Arts, 404 Wilson Road
East Lansing, MI 48824
Phone: 919-995-2721
Ioana Staiculescu, M.P.H., CDFT

Center for Health Policy
School of Medicine
DC375.10 MA105C
Columbia, MO 65212
Phone: 573-882-6486
Karen Edison, M.D.

University of Missouri Health System
DC19, MA111
Columbia, MO 65212
Phone: 573-884-6415
Corresponding Author:

APPENDIX C 97
Disclaimer: The authors are responsible for the content of this article, which
does not necessarily represent the views of the National Academies of Sci-
ences, Engineering, and Medicine (the National Academies), the U niversity
of Missouri (UM), or Michigan State University (MSU).
Disclosures: The authors report no significant conflicts or financial disclo-

sures related to this work.
Acknowledgments: There are organizations and people we want to thank.

First, we thank the National Academies of Sciences, Engineering, and
Medicine (the National Academies) for this exciting opportunity to make
the case for health literacy. Specifically, we want to thank Lyla Hernandez,
National Academies staff, and members of the Roundtable on Health Lit-
eracy for their continued support and efforts to promote health literacy in
all aspects of life.
In addition, we would like to thank the diverse researchers and practitio-

ners across the field of health literacy who took time out to discuss the case
and share their own experiences, work, and findings with us. Thank you
Andrew Pleasant, Ann Gakumo, Audrey Riffenburgh, Bet Wong, Catina
O’Leary, Chris Trudeau, Christina Cordero, Cliff Coleman, Cynthia Baur,
Darren DeWalt, David Fleming, Diane Levin-Zamir, Elizabeth Fogle, Geri
Lynn Baumblatt, Glenna Bailey, Greg Smith, Jeff Greene, Jennifer Dillaha,
Joy Deupree, Julie McKinney, Katheryn Anderson, Kathleen M eehan,
Kristie Hadden, Laura Noonan, Laurie Francis, Laurie Myers, Linda

Shepard, Lori Henault, Ludmilla Wikkeling-Scott, Michael Paasche-Orlow,
Michael Villaire, Michael Wolf, Michele Erikson, Nick Collatos, Penny
Chumley, Polly Smith, Ruth Parker, Shelby Chapman, Steve Rush, Steve
Sparks, Terry Davis, and Tonya Meyer. We would also like to thank Jordan
Valley Health Center and Southeast Health for allowing us to include their
quality improvement work. Last, thank you to Dave Zellmer for his plain
language and health literacy assistance in creating the fact sheets and execu-
tive summary. Without the assistance and support from every one of these
individuals and organizations, this report would not have been possible.
Funding: This work was commissioned by the National Academies of Sci-

ences, Engineering, and Medicine’s Roundtable on Health Literacy.

EXECUTIVE SUMMARY
What Is the Case for Health Literacy?

Health care is a business. At the same time, health literacy is a way to
bring down costs and improve value. When health systems and those who
work in health care use health literate methods, there is a better chance that
patients will know what they need to do and they should be able to act and
manage their health.
Health literacy is not just the right thing to do for the patient. It is also
the right thing to do to make sure we control costs and improve quality.
We need this as we switch our payment model to value-based purchasing.
The business model we have now for providing health care is moving from
one where we make money by using more health care. Soon, providers will
make the most money when they keep people in better health and out of
the hospital. Health literacy is a vital tool to aid in this movement.
We looked at many factors to make the case. They include the effect
that health literacy has on:
• The quality of care

• The cost of care
• Providing equitable care
• The health of communities
• The care experience of patients and providers
Plus, we tried to find out if changing the way we pay for health care
(as well as other rules) would lead to improved health literate methods for
health systems and those who work in health care.
Where Did We Find the Information?

We found the information through three distinct ways. To start, we
searched for research that showed health literacy’s effect on one of the fac-
tors above. Next, we reached out and interviewed those who work in the
field of health literacy. We asked them to send us all research they might
have that showed the effect of health literacy. Then, we sent out a survey
to those who work the field of health literacy. We asked them for their own
stories about health literacy programs that work well in communities, clin-
ics, and adult classes.

APPENDIX C 99
Why Is Health Literacy So Vital?

Most of the time, health literacy is known as one’s ability to find, know,
and use health information to make choices each day. Plus, to be health
literate means health systems and health providers must teach patients in
such a way that helps the patient use what they have been taught with
ease. That means that all who work in health care need to do all they can
to help get rid of any health literacy problems patients (or their loved ones
and caregivers) may face. The use of good health literacy is vital for all who
work in health care from the “top down and bottom up.” Those who work
in public health need to do this, too.
The Business Case

In the United States, low health literacy is estimated to cost $105 bil-
lion to $238 billion each year in direct health care costs. Indirect costs
are between $1.6 trillion and $3.6 trillion each year. Good health literacy
plans can take more than one form. All forms are set up to help patients
(as well as their loved ones and caregivers) make their way through
detailed health information and systems to get the care they need and stay
in good health. Health literacy cuts health care costs through:
• Fewer emergency department (ED) visits

• Fewer hospital readmissions
• More screenings to prevent illness and increase medicine adherence
• Fewer dosing errors
Good health literacy plans work to change how patients act, which, in
turn, can lead to fewer costs for people, systems, and society. Giving help
through written guides and speech helps patients find their way through
health systems. Plus, a good plan can help patients get the follow-up care
they need. This would be for things like coming in for follow-up visits or
to report their weight each day. A good plan can lead to more control of
chronic illness such as asthma, diabetes, and high blood pressure. A change
in what a patient understands can lead them to do as their doctor or nurse
asks and lead to fewer stays in the hospital. Public health literacy plans have
been found to reduce the chance for disease.
If done right, a change in the way a patient acts can lead to better health
outcomes, both for the patent and for health systems. With more knowledge
and better care for chronic illness, health literacy helps to cut down on:
• Days in a hospital
• Needless ED use

• Preventable hospitalizations
• Readmission rates
At the same time, it helps to make the health of communities better.

These are just a few of the improved health outcomes. The full report gives
this and more evidence for how health literacy can change health outcomes
through better care at less cost.
A good health literacy plan also helps the patient make good health
choices. They will be more satisfied with their health care, too. This builds
trust and rapport for both patients and providers. This trust helps a patient
to learn more. Plus, the trust helps to align health care goals set by the
patient and doctor. Research has shown that hospitals with more satis-
fied patients make more money. Furthermore, there are some value-based
payment models being designed now. These models have bonus payments
linked to how many satisfied patients a health system has. The use of these
new models will help make the financial case for health literacy.
The Ethical Case

Health literacy is the right thing to do to reduce health disparities and
provide equal care for all. Good health literacy plans have been found to
reduce the effect of race and sex for some health outcomes. And good plans
tend to reduce racial and ethnic health disparities as well.
Health literacy is also the right thing to do to meet the policy demands
we have now. For example, the Patient Protection and Affordable Care Act
(ACA) has many terms that must be met that deal with health care that
is based on Culturally and Linguistically Appropriate Standards (CLAS).
CLAS were designed by the U.S. Department of Health and Human Ser-
vices. Plus, the ACA makes a point to emphasize that health literacy must
be a part of all health care training. The ACA also streamlines the way
patients sign up for health insurance. Those who sell health insurance must
write summaries in such a way that patients can know what their plan cov-
ers and how. And the summary must have clear and concise health informa-
tion. In much the same way, the rules set up by the Centers for Medicare &
Medicaid Services (CMS) state the same thing. The rules state that health
care providers must teach patients in a way that gives the patient the chance
to know what to do to get to or stay in good health.
The United States does not have a central health agency to set up rules
for how best to deliver health care. Because of this, from time to time pay-
ment models serve as the main force to shape the way we provide health
care. At this time, in the United States we often pay for the amount of
health care we give. As payment methods shift, we will soon pay for the
quality of health care we give.

APPENDIX C 101
As such, we would like to note that the Medicare Access and Children’s
Health Insurance Program (CHIP) Reauthorization Act (MACRA) set up
new rules that pay health systems and clinics to use health literacy methods.
These methods help the patient get more engaged to manage their health
care, as well as improve the course of their care.
Health Literacy and the Future

There is more and more proof that using health literacy strategies
reduces costs while boosting the quality, equity, and access to health care—
all while making the health care of the patient better. As payment models
change, clinics and health systems need to put good health literacy practices
in place that help the health of their patients, communities, and profits.
Once we have done that, then we can better meet future health reforms
and challenges.
In the appendices of this report you will find fact sheets that show
the benefits of health literacy on cost, quality, equity, outcomes, behavior
change, and satisfaction. Please use these with local, state, and federal
policy makers to allow them to make more informed decisions to prepare
patients and health systems for the future.
INTRODUCTION
The Roundtable on Health Literacy, Health and Medicine Division,
National Academies of Sciences, Engineering, and Medicine, commissioned
the Center for Health Policy, School of Medicine, University of M issouri, as
well as a health literacy expert from Michigan State University, to build the
case that health literacy is important for everyone. A key principle of health
literacy is to know and understand your audience. Previous roundtable
commissioned papers focus on disseminating the latest academic research.
Our paper goes beyond the usual readership to gain traction in the corpo-
rate offices of hospitals and health systems. This report is accompanied by
a health literate, plain language executive summary and fact sheets designed
specifically for policy makers.
We expand on a broad definition of health literacy that Sorensen and
colleagues (2012, p. 3) developed as our guide:
Health literacy is linked to literacy and entails people’s knowledge, motiva-

tion, and competencies to access, understand, appraise, and apply health
information in order to make judgments and make decisions in everyday
life concerning health care, disease prevention, and health promotion to
maintain or improve quality of life during the life course.

Add to this that until we begin teaching health literacy as a life skill in
elementary and secondary education like reading, writing, and math, we
cannot blame the victim by placing the sole responsibility on patients, fam-
ily members, and caregivers. The health system and health professionals
must take responsibility to simplify systems and information, as well as
provide support to minimize all potential health literacy challenges that
people face.
Many cases could be made for the importance of integrating and
addressing health literacy. We make numerous cases, which fall under two
primary categories:
• The business case, which includes health literacy’s effect on cost,

quality, behavior, access, and patient experience, and
• The ethical case, which includes health literacy’s effect on health
equity, as well as the legal/regulatory case.
The roundtable asked us to bring together evidence on the effect of

health literacy in achieving the Quadruple Aim (Bodenheimer and Sinsky,
2014). The Quadruple Aim framework focuses on health literacy as a
primary way to: (1) enhance the quality of care, (2) improve the health
of communities, (3) reduce costs, and (4) improve the care and experi-
ence of patients and providers. Health literacy is especially important for
those people who experience medication errors, higher rates of hospital-
ization and emergency room use, poorer health outcomes, and increased
illness and early death (Williams and Parker, 1995). Through numerous
scoping reviews, a survey of the field, and informal interviews with key
health literacy informants, we have attempted to gather as much evidence
as possible about health literacy’s best and promising practices and their
implications for health care delivery and public health in America. We hope
that advocates use this evidence to put into action best practices in places
where people live, learn, work, play, and heal together.
METHODS
Best Practices (Peer-Reviewed)

One of the authors maintains an extensive database of peer-reviewed
health literacy research. He identified peer-reviewed evidence through a
comprehensive review of pertinent literature from his and existing data-
bases for peer-reviewed articles that address at least one or more of the
four foundational issues of health literacy within the Quadruple Aim frame-
work. In addition, through scoping literature searches, we incorporated
recently published and submitted articles and manuscripts.

APPENDIX C 103
We began the citation collection process by searching for the phrase

“health literacy” in either the title, abstract, or keywords of peer-reviewed
articles published from 1950 to August 2017 and indexed all articles in
research databases. The databases included PubMed, ISI Web of S cience,
Academic Search Premier, Cumulative Index to Nursing and Allied Health
Literature (CINAHL), PsycARTICLES, Ingenta, ProQuest, and Science
Direct. Conducting multiple searches within and across the databases
yielded duplicate citation data. Duplicate citations were removed and/or
collapsed into a single citation. From 1950 to August 2017 there were
13,509 unique articles that included the phrase “health literacy” in the
title, abstract, or keywords. We also used Google Scholar to fill in missing
citation information.
Promising Practices (Not Peer-Reviewed)

The team searched the grey literature using MedNar, EthOS, O penDOAR,
and Worldwidescience. The team also reached out to their respective col-
leagues and networks and posted repeated messages to the Health Literacy
Discussion List (HLDL) requesting people to identify any non-peer-reviewed
evidence and promising practices of the effect of health literacy on cost, qual-
ity, access, satisfaction, equity, behavior change, organizational change, and
other issues outlined in the workshop’s Statement of Task. The team also
requested that everyone send us any recently published articles and/or manu-
scripts submitted for peer review that are relevant to the overall project but
not in publication yet. We posted the same request to several health literacy
discussion groups on LinkedIn as well as Twitter, Facebook, Google+, and
Google Newsstand.
We designed and implemented a survey of health literacy p rofessionals
to further collect non-peer-reviewed literature and anecdotal evidence
(stories) that highlight and humanize best and promising practices from
community-based initiatives, clinical quality improvement programs, adult
learning settings, and public health campaigns.
Survey Results
The survey was conducted between June 23, 2017, and July 15, 2017.
The responses (n = 138) were collected using the online survey applica-
tion Qualtrics.2 The survey was distributed via the HLDL, LinkedIn, and
Twitter. If we found existing policies, programs, or initiatives that met
the framework criteria outlined in the Roundtable on Health Literacy’s
Statement of Task, we contacted the organization and conducted in-depth
2 See https://www.qualtrics.com (accessed February 15, 2018).

interviews via telephone with an identified organizational leader when

allowed. Participants were given the option of providing their name and
email address at the end of the survey if they were willing to be contacted
for follow-up questions; otherwise, their responses were anonymous.
Respondents represented programs and institutions from the United
States of America, Canada, Germany, Italy, Taiwan, Australia, Japan, Abu
Dhabi, and more. Seventy-seven percent of respondents said that they or
their organization had worked on a project exploring the effect of health
literacy on any of the following areas: finance, behaviors, health outcomes,
quality of care, patient satisfaction, provider satisfaction, equity, organi-
zational culture, or another area related to the Quadruple Aim. The areas
explored by the projects were behaviors (16 percent of programs), patient
satisfaction (15 percent of programs), health outcomes, quality of care,
equity, etc. Sixty-five percent of respondents presented their work at state
or national conferences or published the research that resulted from their
health literacy programs. Forty-four respondents provided contact informa-
tion for further follow-up.
The survey also asked about the target population for many of the
health literacy projects represented. Most of these studies targeted educa-
tion or health care. For the projects taking place in educational settings,
the populations included were eighth grade, suburban middle school stu-
dents, adults seeking GED or enrolled in literacy classes, English language
learners, and teachers in primary and secondary schools.
For projects that focused on organizational infrastructure and creating
health literate institutions, projects targeted leadership, senior leaders and
department chairs, and other key decision makers in hospitals, p harmacies,
and primary care practices. Other projects focused on frequent emergency
room patients; medically underserved patients; hospitalized patients;
pediatric patients and their caregivers; patients receiving services for various
acute and chronic conditions like asthma, breast cancer, colonoscopy,
diabetes, cancer, or HIV; mental health diagnoses; and substance abuse.
Some studies have looked at low-income patients, immigrants, refugees,
Australian Aboriginal communities, older adults, people with disabilities,
and inmates in a county jail setting.
Health care professionals were the focus of programs and interventions
for more than half of the survey respondents. They represented doctors,
nurses, registered nurses, dentists, dental hygienists, nurse practitioners,
dietitians and dietetic interns, and other clinic and hospital providers and
staff members.
Thirteen respondents included information about health literacy pro-
grams that have not been presented at conferences nor published in peer-
reviewed literature. The focus of these projects included

APPENDIX C 105
• Building health literacy collaborations between health professionals

and community-based organizations serving new immigrants and
refugees;
• Determining an overall, basic understanding about health and health
care in middle school students;
• Providing medication review to ensure patients understand why
they are taking the medicines and answering any questions patients
may have;
• Revealing to patients the true risks of proposed procedures;
• Patients rating the health information provided by care team
members;
• Providing various educational opportunities for health care providers;
• Integrating health literacy and the teach-back method into clinical
practice;
• Providing health literacy workshops for patients and family care-
givers; and
• Assessing the organization’s health literacy competencies based
on the 10 attributes of a health literate organization (Brach et al.,
2012).
Challenges to the Case for Health Literacy

In building the case for health literacy, we identified several potential
challenges from a diverse variety of perspectives that need to be acknowl-
edged and contemplated as we continue to strengthen the case.
1. Current volume-based reimbursement and traditional fee-for-service

payments for health services do not incentivize good health literacy
practices. Value-based reimbursement (for example, the Medicare
Access and CHIP Reauthorization Act of 2015) does incentivize
health literacy practices. Until we fully move to value-based pur-
chasing, existing reimbursement incentives will be structured against
the integration of health literacy principles into practice and may
undermine the case for health literacy.
2. Consumer information in health care is not as transparent as in
other consumer-based industries. One attribute of a health literate
organization directs that an organization “communicates clearly
what health plans cover and what individuals will have to pay
for service” (Brach et al., 2012). Rarely, if ever, are the out-of-
pocket costs for health care services communicated before they are
delivered. Duesenberry famously stated: “Economics is all about
how people make choices. Sociology is all about why they don’t
have any choices to make” (1960, p. 233). Health literacy is a

similar paradox in that we expect people to be empowered to use

health literacy skills once learned, yet they are confined by com-
plex health systems, structures, policies, and procedures that limit
choice and restrict the equitable information exchange necessary to
navigate the health care market and insurance marketplaces. Until
there is a movement toward cost and quality transparency, imple-
menting comprehensive health literacy practices will be difficult.
3. Research is needed to support the efficacy of health literacy inter-
ventions. Many professionals in the field fear that a lack of support-
ing evidence hampers future funding, initiatives, and interventions.
During personal interviews conducted as part of this paper, numer-
ous health literacy experts hypothesize that the lack of research will
contribute to the lack of sufficient evidence.
4. There is sufficient evidence of short-term outcomes that support
the effectiveness of specific health literacy interventions. To date,
however, there are no large-scale longitudinal studies that examine
long-term outcomes related to cost, quality, satisfaction, and effects
of broad-based health literacy initiatives and interventions. Fund-
ing is needed to support such an endeavor.
5. The legal profession has not embraced the literacy movement and
can be a barrier in health care. For example, patient consent forms
for procedures in health care crafted with health literacy in mind
are commonly rejected by the health system legal team. This same
dynamic is at play in state Medicaid departments across the United
States.
6. There are numerous initiatives and interventions that fall into the
broadening scope of health literacy but do not fall under the label
of health literacy. As a result, there is available evidence that may
not be uncovered by traditional methods (for example, literature
reviews, surveys, and informant interviews) when searching more
broadly for data in the domain of health literacy.
The Business Case for Health Literacy
The Financial Case

The health literacy field has a long history of forecasting the potential
cost savings of addressing health literacy from a societal standpoint. An
early systematic review reported a range of an additional 3–5 percent in
total health costs attributable to limited health literacy for the health care
system and a range of $143–$7,798 of additional expenditures for indi-
vidual patients with low/limited health literacy compared to those with
adequate health literacy (Eichler et al., 2009). In 2017, the United States

APPENDIX C 107
was estimated to spend $3.5 trillion on total health expenditures (CMS,

2016b). Translating the reported range into 2017 U.S. health care dollars
reflects a potential cost savings of $105–$175 billion per year. Others have
estimated that low health literacy costs the U.S. economy between $106
and $238 billion annually in direct health costs and between $1.6 and
$3.6 trillion annually when you include the costs of current public health
activities (or lack of action) that would result from healthy eating, exercis-
ing, smoking cessation, and so on (Vernon et al., 2007). A 3-year retrospec-
tive service utilization study of nearly 93,000 veterans found that veterans
with marginal and inadequate health literacy cost $143 million more than
veterans with adequate health literacy (Haun et al., 2015).
More specific research has demonstrated the financial effect of inte-
grating health literacy in two primary arenas: public health and health
care delivery. In public health, savings have been documented using the
quality-adjusted life year (QALY) measures that use preference-based mea-
surements of health-related quality of life to provide an assessment of the
overall burden of diseases associated with both mortality and morbidity
(Neumann et al., 2016). For example, a computer-delivered intervention
targeting HIV medication adherence found a net cost savings per user
and per QALY for high health users and wider deployment (Ownby et al.,
2013). Using the change in QALYs in the first year, the Life Enhancement
Program estimated the cost of improved health status for participants was
between $376,400 and $570,500 lower than other interventions that would
produce similar health gains (Pleasant, 2017).
The Institute of Medicine report A Prescription to End Confusion
documented numerous ways that health literacy can potentially reduce
health care costs, ranging from underuse of preventive and other ser-
vices; inefficient access to health services, such as unnecessary ED visits
and preventable hospitalizations; medication errors and mismanagement
of chronic conditions; patient noncompliance caused by not understand-
ing care instructions; and inappropriate health services (IOM, 2004). In
addition, many specific health literacy health care delivery interventions
have been found to be cost-effective, including using cell phones to deliver
health education via text messaging (Zhuang et al., 2016), a multipronged
intervention targeting colorectal cancer screenings involving health lit-
eracy training for physicians and establishing a feedback loop to monitor
patient compliance (Khankari et al., 2007), a pharmacist intervention for
those with heart failure to increase cardiovascular medication compliance
(Murray et al., 2007), and a cancer screening intervention among Korean
women led by community health workers (Schuster et al., 2015).
Health literacy can be implemented in a variety of ways and can save
money in many different ways. For example, first-time colonoscopy patients
who watched an educational video had significantly lower anxiety scores

the day of the procedure and as a result required 18 percent less sedation
medication and had a 14 percent decrease in procedure time (The Beryl
Institute, 2015). Patients were 11 percent more knowledgeable about the
procedure, and that increased knowledge saved the system both time and
money. Massachusetts General Hospital reported significant savings from
employing a community resource specialist (CRS). After hiring a CRS, Mass
General reduced ED visits by 13 percent; and combined with a decline in
unnecessary hospitalizations, it experienced a 7 percent annual net sav-
ings on enrolled patients and generated $2.65 in savings for every dollar
spent on the CRS (Vuletich and Farooqi, 2017). Integrating health literacy
can also increase incoming revenue. After implementing an automated
phone notification to a group of 3,137 patients with recent orders for a
colonoscopy or upper endoscopy, one health system found that 18 per-
cent of patients contacted went ahead and got the procedure, resulting in
$684,930 of estimated revenue generated during the 2-month campaign,
based on national averages (West Healthcare, 2015). A dental diversion
program in Missouri led to an additional 3,107 tooth extractions over an
18-month period, increasing clinic revenue by more than $680,000 while
providing savings to patients by ensuring the right level of care at the right
price (Pfannenstiel and Brown, 2017).
Some long-standing health literacy programs have demonstrated time
and again behavior change that results in direct and indirect cost savings
to systems, individuals, and society. For example, the guidebook What to
Do When Your Child Gets Sick has been deployed in numerous places
and ways and continues to provide new findings. In Wisconsin, this book
empowered parents to deal with health problems at home instead of calling
a hospital or clinic, or visiting an ED or urgent care center, demonstrating
that approximately $1.50 was saved in health care usage for every dollar
spent on the project (Cook, 2013). In a pilot study in Michigan, parents
stating they would seek care in the ED decreased by 14.6 percentage points
and a review of claims found that after 1 year of using the books with
additional support there was a decrease in ED costs for children younger
than 2 years (Molina, 2005). Implementing a What to Do When Your
Child Gets Sick program in Kansas led to numerous cost savings to the
health system and society, with 46 percent fewer unnecessary doctor visits,
55 percent fewer emergency room visits, 64 percent fewer school days
missed by children because of illness or injury, and 56 percent fewer work
days missed by parents because of their children’s illness (O’Neal, 2012).
Last, a What to Do… partnership between the University of California, Los
Angeles, and Head Start in California found that Medicaid can potentially
save at least $554 per family annually in direct costs related to clinic/ED
visits. Costs were extrapolated from a 42 percent reduction in doctor’s visits
and a 58 percent reduction in ED visits after implementation (UCLA, n.d.).

APPENDIX C 109
Recommended Areas for Future Study

To date, studies have only examined the short-term effect of specific
health literacy practices. Longitudinal studies of broad-based health literacy
activities are needed to truly assess the savings from long-term outcomes
and behavior change, especially innovative ones that propose a paradigm
shift in how we share and teach health education, such as integrating medi-
cal curricula normally targeted for medical students into elementary and
secondary education (Weinstein et al., 2017). These and similar upstream
approaches have the potential for a much greater return on investment once
implemented and fully evaluated.
The Behavioral Case

The relationship between health literacy and behavior change has been
explored in many studies, from targeted interventions to broader ones
that integrate health literacy strategies with social support. For example, a
randomized controlled trial found that people with heart failure were more
likely to report daily weights when provided picture-based instructions,
a digital scale, and follow-up phone support (79 percent in intervention
versus 29 percent in control) (DeWalt et al., 2006). The Neighborhood
Health Plan began distributing the What to Do When Your Child Gets Sick
books to expecting mothers in 2006 and reported statistically significant
reductions in total ED visits, especially for common diagnoses such as fever
and viral, ear, and urinary tract infections (NHP, 2008). Sometimes, these
returns can be realized very quickly. Significant increases (between 28 and
36 percent) in those reporting their daily weights occurred within the first
2 weeks of implementing interactive phone calls for recently discharged
heart failure patients (Emmi Solutions, 2016a).
Other studies looked specifically at the links between health literacy
and behavior change. Health literacy has been linked to behavior change
for people with hypertension through knowledge and self-efficacy pathways
(Osborn et al., 2011c). Similarly, health literacy and numeracy were directly
and indirectly associated with greater self-efficacy or social support, which
was linked to better glycemic control (Osborn and Egede, 2010; Osborn et
al., 2010a,b). A 2011 systematic review found that low/limited health literacy
was associated with numerous behavior-influenced health outcomes includ-
ing more use of the ED, increased hospitalizations, and lower use of some
types of preventive care such as mammography screenings and flu vaccines
(Berkman et al., 2011a). In fact, the evolving definition of health literacy has
even included models such as the Calgary Charter definition (Coleman et al.,
2009) that posit health literacy as a theory of behavior change, with behavior
change as the true outcome of improved health literacy.

Health literacy has also been linked to patient activation (Smith et al.,
2013), and patient activation has been shown to improve management
of chronic conditions such as diabetes and high blood pressure, healthy
behaviors, and preventive screenings, while reducing ED visits and hospi-
talizations (Smith et al., 2013). Both patient activation and health literacy
have been found to be significantly associated with positive effects on
decision making and patient engagement in health care–related activities,
healthy behaviors, and chronic disease self-management (Greene et al.,
2005; Hibbard, 2013). A more recent study found that patient activation
mediates or transfers the relationship among education, health literacy,
and hospital use, reporting that higher patient activation scores were sig-
nificantly associated with reduced odds of use among whites (Charlot et
al., 2017). Those with higher patient activation scores are more likely to
access and use online heath information (Smith et al., 2015). Integrating
patient activation into health literacy interventions could not only improve
the public’s health information–seeking ability but also further enhance
population-based health.
Studies are starting to examine the effect of public health literacy
interventions on behavior change. For example, an initiative using educa-
tion classes, a teach-back call, and interactive voice response calls led to
reductions in drinking sugar-sweetened beverages, resulting in small but
significant decreases in body mass index (Zoellner et al., 2016). Health
literacy has also been associated with increased physical activity in Latinos
(Dominick et al., 2013, 2015a,b) and with parents’ preferences for rotavi-
rus vaccination (Veldwijk et al., 2015), suggesting that health literacy plays
a role in addressing these and many other public health challenges.
There is also evidence that community-based interventions focusing
on the combination of health literacy, self-efficacy, sense of empowerment,
self-esteem, and/or social support influence beneficial health behaviors. For
instance, adult learners who receive health literacy-based education had
increased knowledge about health issues and self-efficacy because of the
health literacy instruction (Chervin et al., 2012). Other studies suggest that
health literacy and self-efficacy are critical for preventive health screening
(Davis et al., 2014; Tiraki and Yilmaz, 2017), intention to take an HIV
test (Rikard et al., 2016), smoking cessation (Parisod et al., 2016; Stewart
et al., 2013), and diabetes management (Rak, 2014; White et al., 2015).
In addition, interventions to increase health literacy that use existing social
support resources improve patient–provider communication (Fry-Bowers
et al., 2013, 2014).

APPENDIX C 111

With the growing focus on population health under value-based pur-
chasing, more research is needed on the effect of public health literacy and
behavior change in three important areas. First, there must be an under-
standing that people do not live, learn, work, and play in clinics and hospi-
tals. The social determinants of health are significant factors that shape the
resources, or lack of resources, for behavior change. It is unclear whether
health literacy is a social determinant of health or a result of those social
determinants. Second, interventions must focus on increasing public and
individual health literacy, as well as self-efficacy, sense of empowerment,
self-esteem, social support, mastery, and/or sense of mattering. Third, pub-
lic health literacy provides an upstream “pay off” in terms of the opportu-
nity to change health behaviors and health outcomes.
The Case for Health Outcomes

Lower health literacy has been found to be clearly associated with
poorer health status and a higher risk of mortality for seniors, as well as
decreased ability to take medications appropriately and interpret labels
and health messages (Berkman et al., 2011b). Health literacy has also
been associated with preventable ED visits. Patients with limited liter-
acy had 2.3 times the number of preventable ED visits resulting in hos-
pital admission compared to individuals with adequate health literacy,
1.4 times the number of treat-and-release visits, and 1.9 times the number
of total preventable ED visits (Balakrishnan et al., 2017). Interventions to
increase health literacy and self-efficacy provide greater improvements in
hemoglobin A1c, glucose, and total cholesterol (Kim et al., 2013), regularly
taking diabetic medication (Al Sayah et al., 2013; Hofer et al., 2017; Lee
et al., 2016), and HIV medication (Colbert et al., 2013). The same con-
nection among health literacy, self-efficacy, and social support improves
mental health outcomes, such as depression, among racial/ethnic minorities
(Hernandez and Organista, 2013, 2015; Lee et al., 2013).
Videos and multimedia programs have been showing promise on affect-
ing outcomes. Those who viewed a video education program were more
likely to have controlled blood pressure regardless of blood control status
and experienced shorter length of stay for total knee or hip replacement
(Emmi Solutions, 2015b,c). Moreover, coupling online interactive media
with automated phone calls resulted in a 15-day delay in readmission
for chronic obstructive pulmonary disease with a 69 percent reduction in
readmission length of stay and a 4-day delay in readmissions for conges-
tive heart failure with a 51 percent reduction in readmission length of stay
(Emmi Solutions, 2016b).

Because CMS started implementing readmission penalties in 2012,

there is a plethora of studies that have examined health literacy’s effect on
readmission rates. Health literacy has been found to be a significant and
independent predictor of 30-day all-cause readmission (Bailey et al., 2015;
Mitchell et al., 2012). Medicare enrollees with above basic health literacy
had a 12 percent lower risk of 30-day readmission after a heart attack and
a 16 percent lower incidence rate compared to those with basic or below
basic health literacy (Bailey et al., 2015). Other studies have found health
literacy to be a contributing factor to readmissions among individuals with
diabetes (Rubin et al., 2014), those receiving maintenance dialysis (Flythe
et al., 2017), individuals with heart failure (Cox et al., 2017), those who
experience postdischarge falls (Jaffee et al., 2016), and those transitioning
to surgical care (Martin et al., 2017).
In addition, numerous evidence-based health literacy practices have
been found to reduce readmission rates for many conditions. In a pilot
study in an urban pediatric hospital, coupling a discharge bundle with the
use of the teach-back method was found to significantly reduce readmission
by 8 percent for 7-day readmissions and by 10 percent for 30-day readmis-
sions (Shermont et al., 2016). Implementing a patient navigator program
for individuals with heart failure resulted in a 15.8 percent decrease in
unplanned readmission (Di Palo et al., 2017). Similarly, individuals receiv-
ing postdischarge follow-up from a care transition pharmacist were signifi-
cantly less likely to be readmitted within 30 days (Fera et al., 2014).
There is quite a bit more evidence for integrating health literacy to
improve readmission rates being undertaken by hospital quality improve-
ment programs. However, much of the evidence is not published in the
peer-reviewed literature and could not be discovered using traditional
literature methods. Also, many hospitals do not call this work “health
literacy” even though the work fits within the health literacy umbrella.
For example, a two-phase readmission reduction initiative employing the
teach-back method and patient admission interviews reduced pneumonia
readmission rates by 9.62 percent and heart failure readmission rates by
7.28 percent in phase 1. Phase 2 added the patient readmission interview to
their electronic medical record, increased patient support through follow-
up phone calls and appointments, and collaborated with local and regional
skilled nursing facilities to reduce all-cause readmission by 4.67 percent
(SoutheastHEALTH, 2017).

With the emergence and adoption of information and communication
technologies to access eHealth resources, there is a significant gap in studies
examining eHealth literacy interventions and their effects on outcomes

APPENDIX C 113
(Watkins and Xie, 2014). A recent systematic review (Kim and Xie, 2017)
revealed only nine intervention studies examining the effect of websites or
online app use on health literacy. Of the nine studies, six education-based
interventions among low-literacy adults and older adults reported positive
effects on knowledge about health conditions, use of computers and the
Web, search skills, confidence finding and using eHealth resources, and use
of health information for one’s own health care (King et al., 2013; Mein et
al., 2012; Robinson and Graham, 2010; Strong et al., 2012; Xie, 2012). As
we continue in the digital age, more research is needed to ensure that these
electronic tools translate into better health outcomes.
The Case for Quality of Care

It must be noted that many findings documented in the sections on the
case for finance, behavior, outcomes, satisfaction, and equity also provide
sufficient evidence of health literacy’s effect on quality of care. To avoid
redundancy, the findings documented in those sections are not repeated
here. Health literacy has a long-recognized role in patient safety. This is
why heath literacy is widely endorsed through initiatives by the Institute
for Healthcare Improvement and the National Patient Safety Foundation
(NPSF, 2017), the Centers for Disease Control and Prevention (CDC, 2017),
the American Medical Association (Weiss, 2007), the Joint Commission
(2007), the U.S. Department of Health and Human Services (HHS, 2010),
and the Agency for Healthcare Research Quality (AHRQ, 2017). Despite
the widespread recognition, when the literature for specific studies linked
to medical errors is examined, there is extensive research in only one area
and broad gaps in all others.
Numerous studies have examined the role health literacy plays in medi-
cation adherence and dosing errors (Davis et al., 2006a,b; IOM, 2008;
Mira et al., 2015; Persell et al., 2010). Even employing simple health
literacy universal precautions can have an effect, such as listing specific
times to take doses (Davis et al., 2009), using milligrams as the standard
unit for liquid medication (Yin et al., 2014), and using oral syringes over
cups for small doses (Yin et al., 2016). A systematic review of the use of
pictograms to assist caregivers in dosing liquid medication found limited
but clear evidence that integrating pictograms into verbal or text-based
instructions reduced dosing errors and enhanced comprehension and recall
of instructions, while improving adherence (Chan et al., 2015).
Likewise, the use of patient-centered medication labels has been found
to improve adherence for those with limited health literacy (Wolf et al.,
2016). The U.S. Department of Veterans Affairs developed and adopted
a patient-centered medication label format in an attempt to improve the
quality of care for its more than 9 million veterans (Trettin et al., 2015).


We point out that most of the direct studies on health literacy and quality
only examined liquid medication, and more research is needed to examine
the role that health literacy can play in reducing nonliquid dosing errors and
adherence. It also must be noted that no study directly links health literacy
to medical errors. One study did identify health literacy–related adverse
events and found that they led to outcomes such as delaying or cancelling a
procedure, surgery, treatment, or test; falls; premature removal of catheters;
and wrong procedure or site (Gardner, 2016). The study provided recom-
mendations on health literacy universal precautions to employ to avoid
adverse events but did not explore the relationship or causal link between
health literacy and adverse events. More research is needed to understand
the direct relationship between health literacy and medical errors.
The Case for Health Care Experience
Patient Experience
Inadequate health literacy has been associated with reduced patient
satisfaction (MacLeod et al., 2017; Shea et al., 2007). Likewise, interven-
tions addressing health literacy have been found to improve patient satis-
faction in medication adherence and management (Graumlich et al., 2016;
Murray et al., 2007; Ruiz et al., 2014), hypertension management (Piette
et al., 2012), obtaining informed consent (Hallock et al., 2017), eye health
education (Rhodes et al., 2016), and maternal health education (Stikes et
al., 2015). Shared decision-making models also continue to show much
promise in improving patient satisfaction in the health care setting (Bozic,
2013; Joosten et al., 2008; Olomu et al., 2016; Slover et al., 2012).
Using video materials to improve patient knowledge and expectations has
been found to enhance patient satisfaction for individuals receiving radiation
therapy (Matsuyama et al., 2013), those prepping for a c olonoscopy (Hayat
et al., 2016), and recent stroke survivors (Denny et al., 2017). In a compre-
hensive study of nearly 100,000 Hospital Consumer Assessment of Health-
care Providers and Systems (HCAHPS) surveys from hospitals employing
commercially developed and implemented video programs, 100 percent of
hospitals had a higher aggregate HCAHPS Top Box percentage, 69 percent
of aggregate Top Box answers were 4 percent higher or more, 86 percent of
hospitals had higher “doctor communication” dimension scores, 62 percent
of hospitals had higher “discharge information” dimension scores, and 59
percent of hospitals had higher “nurse communication” dimension scores
(Emmi Solutions, 2015d).
In addition to video, use of Web-based applications has been linked

APPENDIX C 115
to enhanced patient satisfaction, such as employing automated illustra-

tions for cardiovascular education (Hill et al., 2016) and using Web-based
interventions allowing diabetes patients to better track glucose levels, com-
municate directly with health providers, and interact with other individuals
with diabetes (Brown et al., 2007). Satisfaction can be further enhanced by
coupling these with telephone-based education and support services (Emmi
Solutions, 2015a; Wolf et al., 2014).
Solutions do not have to be extensive or expensive to develop and
implement. Even following simple health literacy universal precautions
like rewording MRI reports (Bossen et al., 2013), standardizing emergency
room instructions (Isaacman et al., 1992), employing audio-recorded mes-
sages (Santo et al., 2005), and encouraging patients to bring a family
member or friend with them to the visit (Rosland et al., 2011) have been
found to enhance patient satisfaction. Increased satisfaction translates into
increased revenue. An analysis conducted by Accenture found that those
hospitals that offer a superior patient experience have 50 percent higher
hospital margins (Collier and Basham, 2015).
Provider Experience
Perhaps because of the recent addition of provider experience to the
Triple Aim to form the Quadruple Aim, there is little evidence published
on the direct relationship between health literacy and provider satisfac-
tion. One study reported that orthopedic surgeons were more satisfied
with patient visits when patients received a video and written informa-
tion describing treatment alternatives for hip and knee osteoarthritis and
developed a structured list of questions for their surgeon in consultation
with a health coach (Bozic, 2013). Another study found higher satisfaction
rates for bowel preparation prior to a colonoscopy when patients received
a patient-centered educational video versus traditional print materials,
with those not receiving the video having higher rates for needing a repeat
colonoscopy within 3 years (Hayat et al., 2016). More research is clearly
needed to examine the link between becoming a health literate organization
and provider satisfaction in communicating with patients, ensuring patient
understanding, and overall job satisfaction.
The Ethical Case for Health Literacy
Because It Is the Right Thing to Do (The Regulatory Case)

Numerous articles draw attention to the ethical case for health lit-
eracy. Early calls focused on the duty of health care organizations and
professionals to ensure that their patients are equipped and provided with

supports to make truly informed and appropriate choices about their health
(IOM, 2004; Mayer and Villaire, 2003; Parker et al., 2003), and it is the
duty of public health agencies, professionals, and organizations to ensure
that critical health messages to the public are actionable and understand-
able (Gazmararian et al., 2005; Nelson et al., 2005). Mission-based health
and public health organizations have a responsibility to meet their patients
where they are and provide health information and care with appropriate
and adequate supports to empower health and public health consumers.
Indeed, addressing health literacy lies at the heart of providing truly patient-
centered care.
In addition to the integral role of health literacy in providing patient-
centered information and care, health literacy is the right thing to do to
comply with current regulatory requirements. Communication is at the
core of health care experiences. As such, health literacy is an integral part
of the CLAS developed by the U.S. Department of Health and Human
Services (OMH, 2013). The Joint Commission adopted these standards
and the ACA contains many conditions related to providing culturally and
appropriate services. The ACA incorporates health literacy into profes-
sional training and streamlines the procedures for enrollment into federal
and state insurance programs. Health plans and insurers are now required
to provide patient-oriented summaries that give them clear, consistent,
and comparable health information in a standardized way (Somers and
Mahadevan, 2010).
CMS has integrated patient understanding in numerous regulations.
Under Medicare and Medicaid Program: Conditions of Participation for
home health agencies (HHAs), § 484.50(a)(1):
We proposed that the HHA provide the patient and patient’s representative
with verbal notice of the patient’s rights in the primary or preferred lan-
guage of the patient or representative, and in a manner that the individual
can understand, during the initial evaluation visit, and in advance of care
being furnished by the HHA.
According to the CMS State Operations Manual Appendix PP—Guidance

to Surveyors for Long-Term Care Facilities § 483.10(b)(3):
The resident has the right to be fully informed in language that he or she
can understand of his or her total health status, including but not limited
to, his or her medical condition.
Several national medical associations and boards have deemed health lit-
eracy as the right thing to do. The American Medical Association has long
recognized the importance of health literacy in meeting patients’ needs,

APPENDIX C 117
improving quality of care, and enhancing patient safety (Weiss, 2007). The
American College of Physicians has also valued the importance of health
literacy and through its Center for Patient Partnerships in Healthcare has
been developing and implementing innovative health information tools to
ensure patient understanding and empowerment (ACP, 2017). The Ameri-
can Board of Pediatrics developed online training modules, including a
Practice Improvement Module released in 2013 (ABP, 2013). The American
College of Obstetricians and Gynecologists (2016) makes the following
recommendations for addressing health literacy to promote quality of care:
Because of the potential effect of health literacy on patient outcomes,

obstetrician–gynecologists should take the appropriate steps to ensure
that they communicate in an understandable manner so patients can make
informed decisions about their health care.
Personnel at all tiers of the medical system must learn to communicate
with patients in a way that takes into account each individual’s unique
circumstances and abilities for comprehending health-related information.
As mentioned earlier, under current fee-for-service reimbursement

mechanisms there is an actual disincentive to address health literacy.
Reimbursement penalties have begun to restructure these incentives. In
October 2014, CMS began reducing Medicare payments for hospitals that
rank in the lowest quartile regarding hospital-acquired conditions (HACs)
(CMS, 2017). In 2011, 21 states already had nonpayment penalties for
HACs, and section 2702 of the ACA has prohibited the federal govern-
ment from providing payments to states for HACs and other provider-
preventable conditions since July 2012 (NCSL, 2017).
In October 2017, CMS increased penalties for 30-day readmissions by
reducing Medicare payments to facilities whose readmission ratios exceed
the national average. This reflects CMS’s continuing commitment “to
increasingly shift Medicare payments from volume to value” with a goal
of linking half of all Medicare payments to value-based reimbursement by
2018 (Whiteman, 2016). These new reimbursement structures place more
risk on hospitals and providers and truly incentivize the integration of health
literacy in providing enhanced patient supports to ensure people have the
understanding and access to home and community resources to successfully
negotiate the road to recovery. As more insurers follow suit, there will be
increasing financial pressure to integrate health literacy practices to enhance
profit margins. Hospitals are also being compelled to reduce Medicaid
readmissions because of payment reforms, such as accountable care orga-
nizations and other alternative payment models, and through regulatory
actions from state governments that require hospitals to demonstrate reduc-
tions in avoidable admissions and readmissions (Boutwell, 2014).

In addition, many state Medicaid programs are starting to implement

payment mechanisms that incentivize more continuity and efficiency in care
delivery. So far, 22 states have implemented Medicaid payments through
health home models, 26 have Medicaid payments through medical homes,
and 12 have implemented delivery system reform incentive payment pro-
grams (NASHP, 2015). Using bundled and global payment mechanisms
shifts financial responsibility and risk to the provider. Integrating health
literacy universal precautions into practice can assist providers in reducing
risk and strengthening the health of their patients and their bottom line.
The shift toward value-based purchasing will strengthen in the next
few years as MACRA replaces the sustainable growth rate formula and
establishes “a new payment framework for rewarding health care pro-
viders for giving better care and not more care” (CMS, 2015). MACRA
began implementation in 2015, and by 2021 physician Medicare payments
will be truly aligned to quality and performance measures. Some have sug-
gested that combined with more private-sector attention to inefficiencies
in physician payment, MACRA may trigger a “disruptive innovation” in
health care delivery (Findlay, 2015). Under MACRA, providers will only
be paid through two ways: Merit-based Incentive Payment System (MIPS)
and Alternative Payment Models (APMs).
Under MIPS, providers will be measured on quality, resource use, clini-
cal practice improvement, and meaningful use of electronic health/medical
records. Several 2017 MIPS improvement activities are focused on elements
of care that are enhanced by health literacy:
• Engagement of patients, family, and caregivers in developing a plan

of care (MIPS activity IA_BE_15),
• Engagement of patients through implementation of improvements
in patient portal (MIPS activity IA_BE_4),
• Enhancements/regular updates to practice websites/tools that also
include considerations for patients with cognitive disabilities (MIPS
activity IA_BE_5),
• Use of toolsets or other resources to close health care disparities
across communities (MIPS activity IA_PM_6),
• Evidenced-based techniques to promote self-management into
usual care (MIPS activity IA_BE_16), and
• Implementation of medication management practice improvements
(MIPS activity IA_PM_16).
These are a few of the MIPS activities that could be supported by health
literacy improvement (TCPI, 2017). Under APMs, beginning in 2019 some
participating providers will receive lump sum payments through bundled

APPENDIX C 119
payment, and accountable care organizations and patient-centered medical

home models with higher annual payments being implemented in 2026.
Because It Is the Right Thing to Do (The Case for Health Equity)

Equity or providing equitable health services is one of the six dimen-
sions of quality care defined in a seminal report by the Institute of Medicine
(2001). As such, there has been a movement to integrate social justice and
health literacy by making the moral or ethical case for the equitable distri-
bution of health information across diverse cultures and communities with
a focus on underserved populations, which tend to have higher rates of low/
limited health literacy (Marks, 2009; Volandes and Paasche-Orlow, 2007).
Two goals of the 2016 CMS Quality Strategy to eliminate disparities
included health literacy:
• Goal 1: Improve safety and reduce unnecessary and inappropriate

care by teaching health care professionals how to better commu-
nicate with people of low health literacy and more effectively link
health care decisions to person-centered goals.
• Goal 3: Enable effective health care system navigation by empower-
ing persons and families through educational and outreach strategies
that are culturally, linguistically, and health literacy appropriate.
In fact, one of the desired outcome measures focused on reducing admis-

sion and readmission for Goal 3 is increased health literacy (CMS, 2016a).
According to the Robert Wood Johnson Foundation (RWJF), health
equity means:
Everyone has a fair and just opportunity to be healthier. This requires

removing obstacles to health such as poverty, discrimination, and their
consequences, including powerlessness and lack of access to good jobs
with fair pay, quality education and housing, safe environments, and
health care. (Braveman et al., 2017)
From a health literacy perspective, health equity also means that every-
one has equal access to health information that people can act upon. Health
information should be targeted, tailored, easy to read, understandable,
culturally appropriate, and available where people live, learn, play, work,
and worship. Many of the reasons people might not have equitable access
to appropriate health information is a lack of access to health care services.
For those with some level of access to health care services, the information
provided meets the needs of some patients and caregivers, while the needs
of others are not met.

The majority of the health literacy research and interventions are

focused on clinical outcomes and health care use (Berkman et al., 2011a).
Most peer-reviewed and nonpublished work in health literacy is not
addressing social determinants of health at the community and individual
levels (Logan, 2015).
Perhaps because of its strong relationship with the social determinants
of health, health literacy has been found to mediate the effect of race on
health outcomes, including conditions that kept people from working,
chronic illness, self-reported health status, flu vaccination rates, quality of
life, prostate-specific antigen levels, medication adherence, and enrollment
in health insurance (Berkman et al., 2011a,b). Health literacy also mediated
or transferred the effect of both race and sex in interpreting medication
labels (Berkman et al., 2011b). Rothman and colleagues showed that a
diabetes disease management program addressing literacy may be particu-
larly beneficial for patients with low literacy, and that increasing access to
such a program could help reduce health disparities (Rothman et al., 2004).
A systematic review published in 2015 examining the relationship
between health literacy and health disparities found that many studies and
interventions do not describe the nature of the disparity that is explored.
Most studies looked at racial and ethnic health disparities. Some have found
evidence of the mediating function of health literacy on self-rated health
status across racial and ethnic disparities, as well as on the potential effect
of health literacy and numeracy on reducing racial/ethnic disparities in
medication adherence and understanding of medication intake (Mantwill
et al., 2015).
In a 2015 discussion paper published by the National Academy of
Medicine, health literacy experts provided arguments that health literacy is
a necessary element for achieving health equity because of the strong rela-
tionship with the social determinants of health and because health literacy
interventions and best practices are a contributing factor to achieving health
equity and social justice (Logan, 2015). The authors found that tailored
and culturally competent programs, delivered where people live and learn
using evidence-based health literacy tools, improved participant knowledge,
attitudes, and behaviors were also successful in reducing health disparities
in the target populations (Aiken, 2010; Herman, 2012; Neuhauser et al.,
2007).

The power dynamic in health care is one subject that needs more
research. Specifically, research must focus on the effect of the power dynamic
on health equity and on the opportunities that people have to achieve a
healthy life. Traditionally, health care providers and institutions have had

APPENDIX C 121
more power in health care encounters. To achieve health equity, there must
exist a more equal power dynamic in health information exchange that
values the knowledge that the provider brings equally with the knowledge
that patients, family members, and caregivers bring to the encounter.
IMPLICATIONS FOR HEALTH POLICY AND PRACTICE

In 2012, health policy and health literacy experts analyzed health
policy initiatives like the Patient Protection and Affordable Care Act, the
National Plan to Improve Health Literacy from the U.S. Department of
Health and Human Services, and the Plain Writing Act of 2010 and identi-
fied the incredible opportunities that are available to further health literacy
research and practice (Koh et al., 2012). The current health policy arena is
changing and poses challenges to health care organizations, systems, com-
munities, and patients. These challenges might interfere with many of the
health literacy approaches to patient-centered care, provider training, and
community-based interventions.
The National Plan to Improve Health Literacy highlights clearly what
health care organizations and professionals can do (HHS, 2010). It will
take everyone working together in a linked and coordinated manner to
improve access to accurate and actionable health information and usable
health services.
The plan’s seven goals are:
1. Develop and disseminate health and safety information that is

accurate, accessible, and actionable.
2. Promote changes in the health care system that improve health
information, communication, informed decision making, and
access to health services.
3. Incorporate accurate, standards-based, and developmentally appro-
priate health and science information and curricula in child care
and education through the university level.
4. Support and expand local efforts to provide adult education, E
nglish
language instruction, and culturally and linguistically appropriate
health information services in the community.
5. Build partnerships, develop guidance, and change policies.
6. Increase basic research and the development, implementation, and
evaluation of practices and interventions to improve health literacy.
7. Increase the dissemination and use of evidence-based health literacy
practices and interventions.
In 2012, the Institute of Medicine published a discussion paper on

the 10 attributes of health literate health care organizations. The paper

highlighted many opportunities and strategies that organizations have to

create more opportunities for patients to access health care, access health
care information, and be able to use as they navigate the health care system
(Brach et al., 2012). The 10 attributes of a health literate organization are:
1. Has leadership that makes health literacy integral to its mission,

structure, and operations
2. Integrates health literacy into planning, evaluation measures,
patient safety, and quality improvement
3. Prepares the workforce to be health literate and monitors progress
4. Includes populations served in the design, implementation, and
evaluation of health information and services
5. Meets the needs of populations with a range of health literacy skills
while avoiding stigmatization
6. Uses health literacy strategies in interpersonal communications and
confirms understanding at all points of contact
7. Provides easy access to health information and services and naviga-
tion assistance
8. Designs and distributes print, audiovisual, and social media content
that is easy to understand and act on
9. Addresses health literacy in high-risk situations, including care
transitions and communications about medicines
10. Communicates clearly what health plans cover and what indi
viduals will have to pay for services
The white paper provides clear examples of how organizations and

institutions can take immediate steps to improve how they communicate
with patients, caregivers, providers, and staff. Yet, it is unclear how many
organizations throughout the country or around the world are implement-
ing these strategies.
As mentioned in the report, health literacy research and practice is
mainly focused on clinical interventions, whereas other areas like quality
of care, patient safety, cost, outcomes, medication adherence or medication
errors, health equity, and health disparities research and practice often do
not include health literacy as a major component, with professionals work-
ing in these areas often operating in silos. Some interventions take place in
clinical settings, others in community-based settings. Many times funding
targeting these other areas does not emphasize health literacy and vice
versa, so there is little incentive to collaborate with professionals and con-
duct research across all of these domains. A 2009 review of health literacy
and child health promotion research and practice recommended and dis-
cussed cross-domain interventions that included targeting all areas of care,
from patient care, health system characteristics, educational systems like

APPENDIX C 123
preschool and the K–12 curricula, and community-based approaches such

as home visiting programs and after-school programs (Sanders et al., 2009).
Along with incentivizing cross-domain collaborations in our organi-
zations and systems, policies should encourage improvement in health
care professional competencies that include knowledge about community
resources, everyday lived experience, and community partners. A compre-
hensive approach to integrate appropriate professional and community
resources in order to meet the needs of the populations is critical.
Funding Support
When asked about the funding source for health literacy programs
on our survey, respondents identified the national ministries of health
and the World Health Organization for countries other than the United
States. Within the United States, programs were funded by state agencies,
realigning resources within health care institutions, operational funding,
scholarships and fellowship programs, the National Institutes of Health, the
Centers for Disease Control and Prevention, CMS, Adult Learning Centers,
public health funding, private foundations, other grants, donations, and
in-kind support.
National Institutes of Health (NIH)

One of the primary sources for health literacy research related funding
was the “Understanding and Promoting Health Literacy” (PAR-13-130-
132) funding mechanisms. However, the funding series was not reissued
as of May 2016. We searched the NIH RePORT Expenditures and Results
Tool (RePORTER) system for currently funded projects that include “health
literacy” in the project title, abstract, or scientific terms.3 The results of the
search are presented in Table C-1. The NIH is made up of 27 institutes and
centers. Each institute or center focuses on a specific disease or body system
and a specific funding strategy for research projects.
We point out that the National Library of Medicine (NLM) actively
supports health literacy projects that address the Quadruple Aim frame-
work. For example, the NLM’s Information Resource Grants to Reduce
Health Disparities (RFA-LM-17-002) funding opportunity focuses on
projects that develop or upgrade usable tailored health information for
populations who experience health disparities and increase the information
capacity of health care providers.
3 See https://report.nih.gov (accessed February 15, 2018).

TABLE C-1 National Institutes of Health (NIH)—Number of Currently

Funded Health Literacy Projects
Administering Institute or Center Number
Agency for Healthcare Research and Quality 7
National Cancer Institute 44
National Center for Complementary and Integrative Health 1
National Center for Injury Prevention and Control 1
National Heart, Lung, and Blood Institute 13
National Human Genome Research Institute 4
National Institute of Allergy and Infectious Diseases 3
National Institute of Arthritis and Musculoskeletal and Skin Diseases 2
National Institute of Biomedical Imaging and Bioengineering 1
National Institute of Child Health and Human Development 17
National Institute of Dental and Craniofacial Research 3
National Institute of Diabetes and Digestive and Kidney Diseases 35
National Institute of Environmental Health Sciences 31
National Institute of General Medical Sciences 7
National Institute of Mental Health 12
National Institute of Neurological Disorders and Stroke 6
National Institute of Nursing Research 18
National Institute on Aging 21
National Institute on Alcohol Abuse and Alcoholism 1
National Institute on Deafness and Other Communication Disorders 3
National Institute on Drug Abuse 2
National Institute on Minority Health and Health Disparities 35
National Library of Medicine 17
Office of the Director 13
Patient-Centered Outcomes Research Institute (PCORI)

The Patient-Centered Outcomes Research Institute (PCORI) is an
independent nonprofit, nongovernmental organization authorized by the
U.S. Congress in 2010. PCORI supports comparative clinical effectiveness
research focusing on outcomes important to helping patients, caregivers,
clinicians, employers, insurers, and policy makers make better-informed
health decisions. PCORI is not allowed to fund research projects that
examine cost-effectiveness outcomes for any interventions. PCORI involves

APPENDIX C 125
patients and other health care stakeholders during the research process with
the goal that the resulting evidence addresses the most important ques-
tions and concerns. The team searched the PCORI Funding Portfolio for
all p
rojects with the phrase “health literacy.” Table C-2 provides a list of
health literacy-funded projects, specifically the names of the organizations,
budget amount, type, and related funding announcement.
TABLE C-2 Patient-Centered Outcomes Research Institute (PCORI)

Funded Health Literacy Projects
Organization Project Budget Project Type Funding Announcement
Boston Medical $249,821 Engagement in Meeting and Conference
Center Research Project Support, Engagement
Award
Colorado Center $13,930 Engagement in Tier I, Pipeline to
for Primary Care Research Project Proposal
Innovation
University of $249,999 Engagement in Engagement Award
Maryland Research Project
University of Alabama $1,339,684 Research Project Addressing Disparities
at Tuscaloosa
American Institutes Research
for Research Dissemination and
Implementation
Project
El Poder de Decidir $14,996 Engagement in Tier I, Pipeline to
Research Project Proposal
Matrix Institute on $14,966 Engagement in Tier I, Pipeline to
Addictions Research Project Proposal
Spina Bifida San Diego $50,000 Engagement in Tier III, Pipeline to
Research Project Proposal
Multicultural AIDS $15,000 Engagement in Tier I, Pipeline to
Coalition Research Project Proposal
The $46,500 Engagement in Meeting and Conference
Cholangiocarcinoma Research Project Support, Engagement
Foundation Award
Trustees of Dartmouth $2,089,937 Research Project Communication and
College Dissemination Research
University of New $2,053,631 Research Project Addressing Disparities
Mexico Health
Sciences Center
continued

TABLE C-2 Continued
Organization Project Budget Project Type Funding Announcement
University of North $2,092,443 Research Project Communication and
Carolina at Chapel Dissemination Research
Hill
University of Alabama $9,494,562 Research Project Testing Multilevel
at Birmingham Interventions to
Improve Blood
Pressure Control in
Minority Racial/Ethnic,
Low Socioeconomic
Status, and/or Rural
Populations (UH2/UH3)
Mayo Clinic $8,780,420 Research PCORnet: Clinical Data
Infrastructure Project Research Networks
(CDRN) Phase II
Vanderbilt University $2,061,238 Research Project Addressing Disparities
Pennington $9,854,769 Research Project Obesity Treatment
Biomedical Research Options Set in Primary
Center Care for Underserved
Populations
University of Illinois $2,039,965 Research Project Improving Health Care
at Chicago Systems
University of $2,020,806 Research Project Asthma Treatment
Pennsylvania Options for African
Americans and
Hispanics/Latinos
Emory University $2,143,727 Research Project Assessment of
Prevention, Diagnosis,
and Treatment Options
University of North $2,112,206 Research Project Assessment of
Carolina at Chapel Prevention, Diagnosis,
Hill and Treatment Options
University of $15,496,215 Research Project The Effectiveness of
Kentucky Transitional Care
Icahn School of $3,153,311 Research Project Asthma Treatment
Medicine at Mount Options for African
Sinai Americans and
Hispanics/Latinos
Georgetown $2,019,316 Research Project Addressing Disparities
University
SOURCES: Patient-Centered Outcomes Research Institute (PCORI) Funding P

ortfolio Search.
See https://www.pcori.org/research-results?keywords=%22health%20literacy%22&f%
5B0%5D=field_project_type%3A320#search-results (accessed February 15, 2018).

APPENDIX C 127
Summary of Funding Support

With some exceptions, funding support for health literacy research and
practice is primarily focused on clinical interventions to reduce health care
disparities and facilitate preventive screening and treatment. Both areas are
critical to inform the shift in reimbursement and regulatory policy. However,
as stated above, there remains little incentive for professionals across a range
of disciplines to collaborate and examine health literacy across a range of
domains. Funding agencies and organizations should invest in interdisciplin-
ary research and practice that is inclusive of new and experienced investiga-
tors. In addition, funding portfolios need to emphasize involving participants
in the initial phase of the research project, sharing the research findings with
participants and listening for participant feedback, and translating findings
to policy makers.

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APPENDIX C 139
The Fiscal Case for Health Literacy

In the United States, low health literacy is estimated to cost $105 to $238 billion
each year in direct health care costs. Indirect costs are between $1.6 to $3.6 tril-
lion each year [1]. A 3-year study of close to 93,000 veterans found that those
with low or limited health literacy cost $143 million more that those with ample
health literacy [2].
There are lots of diverse ways that health literacy can be used to cut costs or
boost profits. Some ways to do this are:
• Increase the use of preventive health care

• Lower unneeded emergency room (ER) visits
• Lower preventable stays in the hospital and readmissions
• Lower dosing errors and poor management of chronic conditions [3].
More in depth examples are:
• Massachusetts General Hospital hired a Community Resource Specialist

(CRS). This move cut ER visits by 13%. At the same time, they increased
annual net savings by 7%. For each $1 spent on the CRS, Mass General
saved $2.65 [3].
• About 18% of those who received an automated phone call to remind them
to have a cancer screening, were screened. This led to an increase of close
to $684,930 in income in just 2 months [4].
• A program to divert those who showed up at the ER for dental problems to
a nearby clinic led to a more than $680,000 in revenue for the clinic. And it
gave those patients the right kind of care at the right price [5].
• Patients who got their first colonoscopy and watched an education video
had much less anxiety scores the day of the procedure. This lead to 18%
drop in sedation medicine, as well as, a 14% drop in procedure time [6].
• The What to Do When Your Child Gets Sick book gave parents the knowl-
edge to know what to do to deal with their child’s health care at home. This
is instead of taking their child to urgent care. An average of close to $1.50
in health care costs for each $1 spent was saved [7].
• A What to Do When Your Child Gets Sick partnership by UCLA and Head
Start in California found that Medicaid can save at least $554 per family
each year in direct costs. The savings were attributable to less clinic and
ER visits [8].
Health literacy gives a broad range of schemes and tools to support patients,
their loved ones, and caregivers. This helps the health of patients while strength-
ening the bottom line of clinics and health systems.

1. Vernon, J.A. and U.o.C.D.o. Finance, Low health literacy: Implications for na-
tional health policy. 2007: University of Connecticut, Department of Finance.
2. Haun, J.N., et al., Association between health literacy and medical care costs
2 an integrated healthcare system: a regional population based study. Bmc
Health Services Research, 2015. 15: p. 249.
3. Vuletich, D. and N. Farooqi, A win-win: How Mass General cut ED visits by 13%
and addressed health disparities, in Growth Channel Blog. 2017, The Advisory
Board Company.
4. Healthcare, W., Ochsner Improves Colorectal Test Screening Rates through
West Outreach. 2015, Author.
5. Pfannenstiel, N. and A. Brown, ER Diversion Programs Right Care. Right
Place. Right Time, in Missouri Rural Health Conference. 2017: Camdenton MO.
6. The Beryl Institute, Reducing Patient Anxiety and Improving Patient Knowl-
edge. 2015, Author.
7. Cook, M., “What to Do When Your Child Gets Sick” Book Combined Projects
Report. 2013, Wisconsin Literacy.
8. UCLA/Johnson & Johnson Health Care Institute, A Breakthrough Health Lit-
eracy Program Empowering Parents - Benefiting Children - Improving the
Health Care System.

APPENDIX C 141
The Behavioral Case for Health Literacy

There is proof that health literacy programs helps patients get healthy. Some
programs try to change one behavior at a time. Other programs try to change
more than one behavior at the same time.
Low or limited health literacy can lead to patients acting in ways that nega-
tively affect their health. Patients such as this might use emergency rooms (ER)
for care when they don’t need to. Or they may spend more days in the hospital.
Or they may avoid some types of preventive care such as screenings for cancer
and flu shots [1]. Health literacy is a way to help the patient act in ways that can
lead to better health.
Here are some ways health literacy has helped:
• The What to Do When Your Child Gets Sick books to were given to new
moms who would soon give birth to a child. This led to less ER use [2].
• An interactive phone call was made to patients who had heart failure. In
the first 2 weeks, the percentage of patients who called in to tell their daily
weight increased from 28% to 36% [3].
• An adult education class added health literacy into the course. This gave a
boost in knowledge of health to the learners [4].
• Health literacy is linked to patient activation. Patient activation helps the
patient to know how to treat their chronic conditions such as asthma and
high blood pressure. Plus, patients from a study were more likely to act in
healthy ways like getting screened for breast cancer and not having to stay
in the hospital [5].
• Health literacy plays a role in addressing public health burdens. These
would be things like more exercise for people who need to lose weight [6-8],
or parents might make the choice to have their child get a flu shot [9].
• Good health literacy plans and having faith in one’s ability to care for one’s
health are key to better health outcomes. As a result, patients tend to get
more health screenings when they need them [10, 11]. Plus, patients tend
to be more willing to take an HIV test [12], stop smoking [13, 14], care for
their asthma [15, 16], and be more honest with their doctor [17, 18].
As we move more towards payment models that are based on value, health
literacy gives an upstream payoff in terms of the chance to change patient and
population health outcomes.

1. Berkman, N.D., et al., Low Health Literacy and Health Outcomes: An Updated
Systematic Review. Annals of Internal Medicine, 2011. 155(2): p. 97-W41.
2. Neighborhood Health Plan, Reducing Non-Emergent ER Utilization: Interven-
tion Addressed to Mothers of Newborns. 2008.
3. emmi Solutions, EMMI Helps Drive Positive Behaviors Post-Discharge. 2016.
4. Zoellner, J.M., et al., Effects of a behavioral and health literacy intervention to
reduce sugar-sweetened beverages: a randomized-controlled trial. The inter-
national journal of behavioral nutrition and physical activity, 2016. 13: p. 38.
5. Smith, S.G., et al., Skill Set or Mind Set? Associations between Health Literacy,
Patient Activation and Health. Plos One, 2013. 8(9): p. e74373.
6. Dominick, G.M., et al., Health Literacy Predicts Change in Physical Activity
Self-efficacy Among Sedentary Latinas. Journal of Immigrant & Minority Health,
2013. 15(3): p. 533- 539.
7. Dominick, G.M., et al., Health Literacy Moderates Change in Physical Activity
among Latinas in a Randomized Trial. Annals of Behavioral Medicine, 2015. 49:
p. S220-S220.
8. Dominick, G.M., et al., Moderating Effects of Health Literacy on Change in
Physical Activity Among Latinas in a Randomized Trial. Journal of racial and
ethnic health disparities, 2015. 2(3): p. 351-357.
9. Veldwijk, J., et al., Preferences for Vaccination: Does Health Literacy Make a
Difference? Medical Decision Making, 2015. 35(8): p. 948-958.
10. Tiraki, Z. and M. Yilmaz, Cervical Cancer Knowledge, Self-Efficacy, and Health
Literacy Levels of Married Women. J Cancer Educ, 2017.
11. Davis, T.C., et al., Improving mammography screening among the medically
underserved. J Gen Intern Med, 2014. 29(4): p. 628-35.
12. Rikard, R.V., R. Head, and M.S. Thompson, Know Your Status: Health Literacy,
Self-Efficacy & HIV Testing Attitudes. Journal of Behavioral and Social Sci-
ences, 2016. 3: p. 52-62.
13. Stewart, D.W., et al., Associations between health literacy and established
predictors of smoking cessation. Am J Public Health, 2013. 103(7): p. e43-9.
14. Parisod, H., et al., Determinants of tobacco-related health literacy: A qualitative
study with early adolescents. International Journal of Nursing Studies, 2016. 62:
p. 71-80.
15. White, R.O., et al., Health communication, self-care, and treatment satisfaction
among low-income diabetes patients in a public health setting. Patient Educ
Couns, 2015. 98(2): p. 144-9.
16. Rak, E.C., Employment Outcomes in Persons With Diabetes: The Role of
Health Literacy and Diabetes Management Self-Efficacy. Rehabilitation Coun-
seling Bulletin, 2014. 57(3): p. 159-169.
17. Fry-Bowers, E.K., et al., Health literacy and interpersonal interactions as predic-
tors of maternal perception of ambulatory care for low-income, Latino children.
Patient Educ Couns, 2013. 91(2): p. 213-20.
18. Fry-Bowers, E.K., et al., The association of health literacy, social support, self-
efficacy and interpersonal interactions with health care providers in low-income
Latina mothers. J Pediatr Nurs, 2014. 29(4): p. 309-20.

APPENDIX C 143
The Health Literacy Case for Health Outcomes

Low health literacy has been found to have a strong link with worse health. It
increases the risk of death for seniors. Plus, it can make a person less likely to
know how to take their medicine like they should. And there is less of a chance
they will know what a health label or message means [1]. A good health literacy
plan will yield improved health outcomes and better 30-day readmission rates [2].
Plus, those with low health literacy have been known to use the Emergency
Room (ER) more than they should [3]. Those with low health literacy had:
• More than twice the number of ER visits that led to a stay in the hospital,
• 1.4 times the number of hospital visits where they were seen and released,
and
• Almost twice the number of total ER visits that were not needed.
A patient who has a good health literacy plan and who feels like he or she
knows how to control their health care can do better with:
• Hemoglobin A1c, glucose, and total cholesterol [4]

• Regularly taking diabetic medication [5–7], and
• HIV medication [8].
The same connection between health literacy, self-efficacy, and social sup-
port improves mental health outcomes, such as depression, among racial/ethnic
minorities [7, 9, 10]. What is the impact on readmission rates?
• Health literacy has been found to be a great source for predicting readmis-
sions that occur in thefirst 30 days [11, 12].
• Medicare patients with more than basic health literacy had a 12% less risk
of coming back to the hospital after a heart attack in the first 30 days. The
same group was 16% less likely to actually come back [11].
More studies have found health literacy to be a factor to readmissions. They

found it to affect the rates for those who:
• Have diabetes [13],

• Get maintenance dialysis [14],
• Have had heart failure [15],
• Have had a post-discharge fall [16], and
• Are moving to surgical care [17].
There is strong support that addressing health literacy can improve health
outcomes.

2. Shermont, H., et al., Reducing Pediatric Readmissions: Using a Discharge
Bundle Combined With Teach-back Methodology. Journal of Nursing Care
Quality, 2016. 31(3): p. 224-232.
3. Balakrishnan, M.P., et al., The Association of Health Literacy With Preventable
Emergency Department Visits: A Cross-sectional Study. Academic emergency
medicine: official journal of the Society for Academic Emergency Medicine, 2017.
4. Kim, M., et al., The Effect of a Community-based Health Literacy-enhanced
Behavioral Intervention in Korean American Seniors With High Blood Pressure.
Circulation, 2013. 128(22).
5. Al Sayah, F., et al., Health literacy and health outcomes in diabetes: a system-
atic review. J Gen Intern Med, 2013. 28(3): p. 444-52.
6. Hofer, R., et al., Mediators and Moderators of Improvements in Medication
Adherence. Health Educ Behav, 2017. 44(2): p. 285-296.
7. Lee, Y., et al., Pathways of empowerment perceptions, health literacy, self-
efficacy, and self-care behaviors to glycemic control in patients with type 2
diabetes mellitus. Patient Educ Couns, 2016. 99(2): p. 287-94.
8. Colbert, A.M., S.M. Sereika, and J.A. Erlen, Functional health literacy,
medication-taking self-efficacy and adherence to antiretroviral therapy. J Adv
Nurs, 2013. 69(2): p. 295-304.
9. Hernandez, M.Y. and K.C. Organista, Entertainment-education? A fotonovela?
A new strategy to improve depression literacy and help-seeking behaviors in
at-risk immigrant Latinas. Am J Community Psychol, 2013. 52(3-4): p. 224-35.
10. Hernandez, M.Y. and K.C. Organista, Qualitative Exploration of an Effective
Depression Literacy Fotonovela with at Risk Latina Immigrants. Am J Com-
munity Psychol, 2015. 56(1-2): p. 79-88.
11. Bailey, S.C., et al., Health literacy and 30-day hospital readmission after acute
myocardial infarction. Bmj Open, 2015. 5(6): p. e006975.
12. Mitchell, S.E., et al., Health Literacy and 30-Day Postdischarge Hospital Utiliza-
tion. Journal of Health Communication, 2012. 17: p. 325-338.
13. Rubin, D.J., et al., Early readmission among patients with diabetes: A qualitative
assessment of contributing factors. Journal of Diabetes and Its Complications,
2014. 28(6): p. 869-873.
14. Flythe, J.E., et al., Psychosocial Factors and 30-Day Hospital Readmission
among Individuals Receiving Maintenance Dialysis: A Prospective Study. Amer-
ican Journal of Nephrology, 2017. 45(5): p. 400-408.
15. Cox, S.R., et al., Association between health literacy and 30-day healthcare
use after hospital discharge in the heart failure population. Research in Social
& Administrative Pharmacy, 2017. 13(4): p. 754-758.
16. Jaffee, E.G., et al., Postdischarge Falls and Readmissions: Associations with
Insufficient Vision and Low Health Literacy among Hospitalized Seniors. Jour-
nal of Health Communication, 2016. 21: p. 135-140.
17. Martin, L.A., S.R.G. Finlayson, and B.S. Brooke, Patient Preparation for Transi-
tions of Surgical Care: Is Failing to Prepare Surgical Patients Preparing Them
to Fail? World Journal of Surgery, 2017. 41(6): p. 1447-1453.

APPENDIX C 145
The Health Literacy Case for Quality Care

The role health literacy plays in patient safety is well known. This is why heath
literacy is widely endorsed by:
• Institute for Healthcare Improvement and the National Patient Safety Foun-
dation [1],
• Centers for Disease Control and Prevention [2],
• American Medical Association [3],
• Joint Commission [4],
• U.S. Department of Health and Human Services [5], and
• Agency for Healthcare Quality [6].
Health literacy can enhance all six aims of quality improvement [7] and can
make health care more:
1.
Safe,
2.
Effective,
3.
Patient centered,
4.
Timely,
5.
Efficient, and
6.
Equitable.
Many studies have looked at the role health literacy plays to help patients take
their medicine like they should [8–12]. Some things that help patients are:
• Use universal precautions such as giving exact times to take medicine [13].
• Use only milligrams as the set unit for liquid medicine [14].
• Use oral syringes, not cups, when the dose is small [15].
• Add pictures to voice or text instructions. This will cut down on dosing errors.
This helps the patient know and recall what they’ve been told to do. Both
lead to better adherence [16].
• Use medicine labels that are clear and easy to read [17, 18].
Most studies on health literacy and quality focus only on medicine in liquid
form. We need more research to understand the role health literacy can play in
reducing dosing errors and improving adherence for medicine in other forms.

1. National Patient Safety Foundation, I.f.H.I. Health Literacy. 2017 9-25-2017];

Available from: http://www.npsf.org/?page=healthliteracy.
2. CDC. Health Literacy: Accurate, Accessible, and Actionable Health Information
for All. 2017; Available from: https://www.cdc.gov/healthliteracy/index.html.
3. Weiss, B.D., Health literacy and patient safety: Help patients understand.
Manual for clinicians (2nd edition). American Medical Association Foundation
and American Medical Association. Nedlastet, 2007. 24.
4. The Joint Commission, “ What Did the Doctor Say?”: Improving Health Literacy
to Protect Patient Safety. 2007: The Joint Commission.
5. DHHS, U.S., National Action Plan to Improve Health Literacy., O.o.D.P.a.H.P.
U.S. Department of Health and Human Services, Editor. 2010.
6. AHRQ. Health Literacy. 2017 9-25-2017]; Available from: https://www.ahrq.
gov/professionals/clinicians-providers/resources/health-literacy.html.
7. IOM, Crossing the Quality Chasm: A New Health System for the 21st Century.
2001, Institute of Medicine: Washington, D.C.
8. Davis, T.C., et al., Low literacy impairs comprehension of prescription drug
warning labels. Journal of General Internal Medicine, 2006. 21(8): p. 847-851.
9. Davis, T.C., et al., Literacy and Misunderstanding Prescription Drug Labels.
Annals of Internal Medicine, 2006. 145(12): p. 887-W246-887-W246.
10. Institute of Medicine, Standardizing Medication Labels: Confusing Patients
Less: Workshop Summary, ed. L.M. Hernandez. 2008, Washington, DC: The
National Academies Press. 116.
11. Mira, J.J., et al., A systematic review of patient medication error on self-
administering medication at home. Expert Opinion on Drug Safety, 2015. 14(6):
p. 815-838.
12. Persell, S.D., et al., Medication Reconciliation and Hypertension Control. The
American Journal of Medicine, 2010. 123(2): p. 182.e9-182.e15.
13. Davis, T.C., et al., Improving Patient Understanding of Prescription Drug Label
Instructions. JGIM: Journal of General Internal Medicine, 2009. 24(1): p. 57-62.
14. Yin, H.S., et al., Unit of Measurement Used and Parent Medication Dosing
Errors. Pediatrics, 2014. 134(2): p. E354-E361.
15. Yin, H.S., et al., Liquid Medication Errors and Dosing Tools: A Randomized
Controlled Experiment. Pediatrics, 2016. 138(4): p. e20160357.
16. Chan, H.K., et al., Using pictograms to assist caregivers in liquid medication
administration: a systematic review. Journal of Clinical Pharmacy and Thera-
peutics, 2015. 40(3): p. 266-272.
17. Trettin, K.W., et al., Implementation of VA patient-centered prescription label
and patient medication information. Vol. 3. 2015, Amsterdam: Elsevier Science
Bv. 1-5.
18. Wolf, M.S., et al., A Patient-Centered Prescription Drug Label to Promote
Appropriate Medication Use and Adherence. Journal of General Internal Medi-
cine, 2016. 31(12): p. 1482- 1489.

APPENDIX C 147
Improving Patient Experience: The Case for Health Literacy

Low health literacy has been linked to low patient satisfaction with their health
care [1, 2]. Tackling health literacy has been found to boost patient satisfaction in:
• Medicine adherence and management [3-5],

• High blood pressure management [6],
• Getting informed consent [7],
• Eye health education [8], and
• Maternal health education [9].
Plus, when a patient can give their say on their own health care (which is a big
part of health literate care), patient satisfaction grows [10–13].
In a recent study of close to 100,000 Hospital Consumer Assessment of
Healthcare Providers and Sys- tems (HCAHPS) surveys from hospitals that used
videos made by experts:
• 100% of hospitals had a higher aggregate HCAHPS Top Box percentage

scores,
• 69% of aggregate Top Box answers were 4% higher or more,
• 86% of hospitals had a higher “doctor communication” dimension scores,
• 62% of hospitals had higher “discharge information” dimension scores, and
• 59% of hospitals had higher “nurse communication” dimension scores [14].
Plus, the use of web-based tools has been known to boost patient satisfaction
too. These tools are things like:
• The use of pictures to teach about heart disease [15], and

• The use of web-based tools to help patients with diabetes better track glu-
cose level, talk directly to health care providers, and talk to other patients
with diabetes [16].
Satisfaction can be helped by pairing these tools with education and support
through the phone [17, 18].
Solutions do not have to be large scale, nor do they need to cost a lot to start.
Just the use of simple health literacy universal precautions has been known to
help with patient satisfaction. These would be things such as:
• Putting MRI reports into plain language [19],

• Using standard emergency room instructions [20],
• Using audio-recorded messages [21], and
• Urging patients to bring a friend or loved one with them to the visit [22].
Increased satisfaction improves patient experience and leads to more profits.

A study done by Accenture found that hospitals whose patients felt their health
care was great, made 50% more money [23].

1. MacLeod, S., et al., The impact of inadequate health literacy on patient satis-
faction, healthcare utilization, and expenditures among older adults. Geriatric
Nursing, 2017. 38(4): p. 334-341.
2. Shea, J.A., et al., Health literacy weakly but consistently predicts primary care
patient dissatisfaction. International Journal for Quality in Health Care, 2007.
19(1): p. 45-49.
3. Graumlich, J.F., et al., Effects of a Patient-Provider, Collaborative, Medication-
Planning Tool: A Randomized, Controlled Trial. Journal of Diabetes Research,
2016: p. 2129838.
4. Murray, M.D., et al., Pharmacist intervention to improve medication adherence
in heart failure: a randomized trial. Annals of Internal Medicine, 2007. 146(10):
p. 714-725.
5. Ruiz, J.G., et al., Computer-Based Programmed Instruction Did Not Improve
the Knowledge Retention of Medication Instructions of Individuals With Type 2
Diabetes Mellitus. Diabetes Educator, 2014. 40(1): p. 77- 88.
6. Piette, J.D., et al., Hypertension Management Using Mobile Technology and
Home Blood Pressure Monitoring: Results of a Randomized Trial in Two Low/
Middle-Income Countries. TELEMEDICINE AND E-HEALTH, 2012. 18(8): p.
613-620.
7. Hallock, J.L., R. Rios, and V.L. Handa, Patient satisfaction and informed con-
sent for surgery. American Journal of Obstetrics and Gynecology, 2017. 217(2):
p. 181.e1-7.
8. Rhodes, L.A., et al., Eye Care Quality and Accessibility Improvement in the
Community (EQUALITY): impact of an eye health education program on
patient knowledge about glaucoma and attitudes about eye care. Patient-
Related Outcome Measures, 2016. 7: p. 37-48.
9. Stikes, R., K. Arterberry, and M. Cynthia Logsdon, A Leadership Project to
Improve Health Literacy on a Maternal/Infant Unit. Journal of Obstetric, Gyne-
cologic & Neonatal Nursing, 2015. 44(5): p. E20-E21.
10. Joosten, E.A.G., et al., Systematic Review of the Effects of Shared
Decision-Making on Patient Satisfaction, Treatment Adherence and Health
Status. Psychotherapy and Psychosomatics, 2008. 77(4): p. 219-226.
11. Olomu, A., et al., Implementing shared decision making in federally quali-
fied health centers, a quasi-experimental design study: the Office-Guidelines
Applied to Practice (Office-GAP) program. Bmc Health Services Research,
2016. 16: p. 334.
12. Slover, J., J. Shue, and K. Koenig, Shared Decision-making in O rthopaedic Sur-
gery. Clinical Orthopaedics and Related Research, 2012. 470(4): p. 1046-1053.
13. Bozic KJ, B.J., Chan V, Youm J, Zhou T, Dupaix J, Bye AN, Braddock CH 3rd,
Chenok KE, Huddleston JI 3rd., Shared decision making in patients with osteo
arthritis of the hip and knee: results of a randomized controlled trial. J Bone
Joint Surg Am, 2013. 95(18): p. 1633-1639.

APPENDIX C 149
14. emmi Solutions, Improved HCAHPS Scores at 29 U.S. Hospitals: A com-

prehensive study of nearly 100,000 HCAHPS surveys reveals patients who
viewed an Emmi program had higher HCAHPS scores. 2015, emmi Solutions.
15. Hill, B., et al., Automated pictographic illustration of discharge instructions
with Glyph: impact on patient recall and satisfaction. Journal of the American
Medical Informatics Association, 2016. 23(6): p. 1136-1142.
16. Brown, L.L., M.L.A. Lustria, and J. Rankins, A Review of Web-Assisted Inter-
ventions for Diabetes Management: Maximizing the Potential for Improving
Health Outcomes. Journal of diabetes science and technology (Online), 2007.
1(6): p. 892-902.
17. emmi Solutions, EMMI Helps Drive Positive Behaviors Post-Discharge. 2015.
18. Wolf, M.S., et al., Clinic-based versus outsourced implementation of a diabetes
health literacy intervention. JGIM: Journal of General Internal Medicine, 2014.
29(1): p. 59-67.
19. Bossen, J.K.J., et al., Does Rewording MRI Reports Improve Patient Under-
standing and Emotional Response to a Clinical Report? Clinical Orthopaedics
and Related Research, 2013. 471(11): p. 3637-3644.
20. Isaacman, D.J., et al., Standardized Instructions: Do They Improve Communi-
cation of Discharge Information from the Emergency Department? Pediatrics,
1992. 89(6): p. 1204.
21. Santo, A., A.M. Laizner, and L. Shohet, Exploring the value of audiotapes for
health literacy: a systematic review. Patient Education and Counseling, 2005.
58(3): p. 235-243.
22. Rosland, A.M., et al., Family and Friend Participation in Primary Care Visits of
Patients With Diabetes or Heart Failure Patient and Physician Determinants
and Experiences. Medical Care, 2011. 49(1): p. 37-45.

The Health Equity Case for Health Literacy

The term equity (or to give health care that is the same for all patients) is one of
the six aims of quality care [1]. To reach health equity, we must take out all barriers
to good health care. These barriers include things such as being poor or facing
discrimination, the result of which might include feeling helpless to change one’s
life. Or it might be a lack of access to good jobs with fair pay, good education, a
safe place to live, and having good health care [2].
Plus, health equity means that we all have the same access to health care
knowledge. Health information should be:
Targeted, tailored, easy to read, understandable, and culturally appropriate,

•
and
Available where people live, learn, play, work, and worship.
•
There has been a movement in health justice to make the moral or ethical case
for equal access to health information for all patients. This includes the underserved.
They tend to lack the means that others have to get and stay healthy [3, 4].
Findings:
Most of the health literacy research looks at clinical outcomes and the way
•
we use health care [5].
Most peer-reviewed work (as well as work not published) in health literacy
•
does not look at the social determinants of health at the community nor the
patient level [6]
Health literacy has been found to mediate the effect of race on such health
•
outcomes as:
o Illness that keeps people from working,

o Chronic disease,
o Self-reported health status,
o Flu vaccination rates,
o Quality of life,
o Prostate-specific antigen levels,
o Medicine adherence, and
o Enrollment in health insurance [5].
Health care should fit each patient’s own life. And they should get the health in-
formation where they live and learn. The use of health literacy can improve patient
knowledge, attitudes, and skills. And it can be a path to health equity for all [9–11].

APPENDIX C 151
1. IOM, Crossing the Quality Chasm: A New Health System for the 21st Century.
2001, Institute of Medicine: Washington, D.C.
2. Braveman, P., et al., What Is Health Equity? And What Difference Does a
Definition Make?, N.R.W.J.F. Princeton, Editor. 2017.
3. Marks, R., Ethics and Patient Education: Health Literacy and Cultural D ilemmas.
Health Promotion Practice, 2009. 10(3): p. 328-332.
4. Volandes, A.E. and M.K. Paasche-Orlow, Health Literacy, Health Inequality and
a Just Healthcare System. American Journal of Bioethics, 2007. 7(11): p. 5-10.
6. Logan, R.A., W.F. Wong, M. Villaire, G. Daus, T.A. Parnell, E. Willis, and M.K.
Paasche- Orlow, Health literacy: A necessary element for achieving health
equity. 2015, Institute of Medicine, Washington, DC.: Discussion Paper.
7. Mantwill, S., S. Monestel-Umaña, and P.J. Schulz, The Relationship between
Health Literacy and Health Disparities: A Systematic Review. PLOS ONE,
2015. 10(12): p. e0145455.
8. Rothman, R.L., et al., Influence of patient literacy on the effectiveness of a
primary care- based diabetes disease management program. Jama, 2004.
292(14): p. 1711-6.
9. Aiken, N., L. Tarullo, L. Hulsey, et al. , A year in Head Start: Children, families
and programs. 2010, Administration for Children and Families, Office of Plan-
ning, Research, and Evaluation.
10. Herman, A., Nelson, B. B., Teutsch, C., & Chung, P. J., “Eat Healthy, Stay
Active!”: A Coordinated Intervention to Improve Nutrition and Physical Activity
among Head Start Parents, Staff, and Children. American Journal of Health
Promotion, 2012. 27(1): p. e27-e36.
11. Neuhauser, L., et al., Promoting Prenatal and Early Childhood Health: Evalua-
tion of a Statewide Materials-Based Intervention for Parents. American Journal
of Public Health, 2007. 97(10): p. 1813-1819.


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Building the Case for Health Literacy: Proceedings of a

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Joe Alper, Rapporteur

Roundtable on Health Literacy

Board on Population Health and Public Health Practice

Health and Medicine Division

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International Standard Book Number-13: 978-0-309-47429-0

Copyright 2018 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.

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The National Academy of Sciences was established in 1863 by an Act of

The National Academy of Medicine (formerly the Institute of Medicine) was

The three Academies work together as the National Academies of Sciences,

Copyright National Academy of Sciences. All rights reserved.

Consensus Study Reports published by the National Academies of Sciences,

Proceedings published by the National Academies of Sciences, Engineering, and

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PLANNING COMMITTEE ON BUILDING

SUSAN BOCKRATH (Chair), Health Literacy Nebraska

1 The National Academies of Sciences, Engineering, and Medicine’s planning committees

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Copyright National Academy of Sciences. All rights reserved.

ROUNDTABLE ON HEALTH LITERACY1

BERNARD M. ROSOF (Chair), Chief Executive Officer, Quality

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MICHAEL K. PAASCHE-ORLOW, Professor of Medicine, Boston

Health and Medicine Division Staff

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This Proceedings of a Workshop was reviewed in draft form by indi-

JULIE McKINNEY, Exceptional Lives, Inc.

Although the reviewers listed above provided many constructive com-

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Copyright National Academy of Sciences. All rights reserved.

The sponsors of the Roundtable on Health Literacy made it possible to

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ACRONYMS AND ABBREVIATIONS xvii

2 THE PATIENT PERSPECTIVE ON THE NEED FOR

3 IMPROVING HEALTH AND THE BOTTOM LINE:

4 WHY HEALTH LITERACY? 29

5 ADOPTING HEALTH LITERACY IN AN ORGANIZATION 43

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A Case Study: Adopting Health Literacy in a Public Health

6 WHERE DO WE GO FROM HERE? 61

7 REFLECTIONS ON THE DAY 73

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Box, Figures, and Tables

5-1 Building the case for health literacy interventions, 48

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xvi BOX, FIGURES, AND TABLES

C-1 National Institutes of Health (NIH)—Number of Currently Funded

Copyright National Academy of Sciences. All rights reserved.

Acronyms and Abbreviations

2 THE PATIENT PERSPECTIVE ON THE NEED FOR

3 IMPROVING HEALTH AND THE BOTTOM LINE:

5-1 Building the case for health literacy interventions, 48

C-1 National Institutes of Health (NIH)—Number of Currently Funded

2 Information available at http://www.partners.org/Innovation-And-Leadership/Population-