The Institute for
Twelfth Annual Health Literacy Conference:
"Operational Solutions to Low Health Literacy"
Recap of Friday May 10, 2013
Patient’s Perspective on the Health Literacy Myth
you prepare to be a patient? This is the question that Maria Ross, a
college-educated business owner with an interest in acting, asked her
audience. The story she told of her brain aneurysm and recovery was
ample proof that you can’t. Her point was that we can do a better job
of helping the health care system understand what it is like to be a
patient. Her talk, she said, would be about patient care versus patient
A common thread ran through Ross’s story about the weeks she spent in
intensive care, months of therapy and home care, and against the odds,
her recovery. It was the sensation that she had “dropped into a foreign
language.” The doctors had saved her life, but she and her family
struggled to understand what that life would be like. She recognized
through her experience, that ongoing maintenance and abilities for self
care are what patients need, just as much if not more than the medical
prowess that saved their lives. She quoted Lori McKitrick , a speech
therapist at the Survivorship Training and Rehab (STAR) program,
Greenville, S.C “In a lot of hospitals you will see patients fall
through the cracks after surgery….We are doing a great job saving
people’s lives but we have to help them live their lives, too.” (WSJ,
This recognition has led her to teaching health literacy skills like
teach back and serving as a Patient Advisor at the University of
Washington Medical Center. Among her recommendations: ditch
the jargon. The hospital is your world not ours. What’s
common knowledge in your business, your tribe, is not in ours. We all
take for granted that “our world” is everywhere. Similarly she advised
providers to understand the patient’s context. She recalled the story
of a person who came to her home during the recovery process to deliver
resources for the blind. Though she had successfully undergone surgery
to reverse blindness resulting from the aneurysm, she was not, at that
point, blind. The person dismissed this context, and did what he felt
was his job to do—he delivered those resources.
Ross reminded the audience that silence is not golden, nor is “yes.”
Patients need to ask for information to be repeated and to ask
questions like “what do you hope to find out from this test?” Providers
need to be looking at questioning as a sign of engagement, like taking
notes. Don’t assume that patients have been told something—either by
another person, or by you. Use checklists and scripts so you can be
sure you’ve said what needs to be said, and recommend reference
materials. And get creative--Use teaching aids, written materials, and
3-D models. One of the memories she has retained, in spite of the fact
that it happened when she had difficulty with short-term memory, was an
explanation given by a provider who used a model.
The recommendations Ross offered were clear and simple and perhaps
familiar to many in the audience, but particularly acute in the context
of her story. She pointed out that according to the U.S. Department of
Health and Human Services, “Nearly 9 out of 10 adults have difficulty
using the everyday health information that is routinely available in
healthcare facilities, retail outlets, media and communities “(2011).
This ratio, she said, would be considered an abysmal failure in any
other industry. Familiarity with solutions does not mitigate our need
to implement them.
Beyond Cultural Awareness: A Unified Approach to
Better Outcomes and Reduced Health Disparities
Olivia Carter-Pokras, Ph.D.
are health disparities? They are, according to Dr. Carter-Pokras, who
has spent three decades in the study of health disparities, differences
in health outcomes that we can measure, that we have the tools to
address, and that ethically, we are obligated to address. We know that
disparities do exist across all dimensions of access and quality of
health care, across many clinical conditions, and many subpopulations.
The Annual report on National Healthcare Disparities in 2012 noted no
changes in rates of poor communication, and no improvement in areas
like diabetes care and maternal and child health and thus a need to
accelerate progress. National developments, such as Healthy People 2020
and new CLAS standards have precipitated local developments, and rapid
embracement by legislators. A number of states have passed cultural
competency training mandates—though it is often the case that such
mandates are unfunded.
Another issue is that cultural competency research and training is at
work separately from health literacy training and research—and
Carter-Pokras wonders why. Each has common interests but they are not
on the same bus, or at the same conferences. In the October 2012 issue
of the Journal of Health Communication, Carter-Pokras and her fellow
authors note that “competencies have been developed for cultural
competence training (Lie et al., 2008), and health literacy
competencies are being developed. But educational research in each
field is being conducted independently despite overlapping constructs
and common desired patient outcomes.” Health literacy is often “housed”
in quality improvement, and cultural and linguistic competency are
aligned under patient satisfaction, when they are instead
complimentary. “What better place to begin than a collaborative of
health literacy and cultural competence educators working together to
share tools, training strategies, and resources for the common goal of
health disparities reduction, improved research agendas, and outcomes?”
So, we need to educate medical students in cultural competency and
health literacy together—but how? Carter-Pokras and others have created
a new “Primer: Cultural Competency and Health Literacy: A Guide to
Teaching Health Professionals and Students” from the University of
Maryland School of Public Health and the Maryland Department of Mental
Health and Hygiene, released in May. Its stated intent is to be a
resource guide to help “students and health care professionals learn
how to reduce health disparities and improve health outcomes through
culturally sensitive and effective communication across health
disciplines.” The Primer is free and easily accessible as a download.
There are six instruction modules, and learning objectives are arranged
by type of competency: knowledge, attitudes and skills. Contents come
from credible sources and to the extent possible, the resources in The
Primer are evidence-based, though Carter-Pokras cautioned that very
little research has been done—there are as few as seven studies that
look at outcomes. “Moving upstream from health services research to
health professions education as another solution is a logical, positive
response to the call to action.”
Closing Keynote - Panel
Michael Villaire, MSLM
Rima E. Rudd, Sc.D
Cecilia Doak, MPH
From left, Michael
Cecilia Doak, MPH,
Rima E. Rudd, Sc.D
Challenging Traditional Legal Communication: A
Drafting Toolkit for Non-Lawyers
Christopher R. Trudeau, J.D.
Mr. Trudeau began his presentation by leading his audience through his
Prezzi “Swimming with the Sharks,” a detailed list of strategies for
convincing lawyers to adopt plain language. He includes lawyers on the
list of causes of low health literacy. Among the rational arguments for
using plain language are that plain language is economical and the
public prefers it, including lawyers themselves, according to a study
conducted by Trudeau. He cited several examples of proof that plain
language is economical, including a clarified billing statement that
resulted in an 80% increase in patient payments at the Cleveland
Christopher R. Trudeau,
outlined the process and results of conducting a survey with 376
respondents, including details about the respondents’ education level
and specifics about the kinds of language choices they preferred.
Interestingly, as the education level of the respondents increased, so
did the preference for plain language. He asked participants to choose
between “traditional’ language examples and plain language examples.
Eighty percent of the participants preferred the plain language
version, which included choosing between active vs. passive
constructions, strong verbs vs. nominalizations, plain words vs.
complex words, and explaining vs. not explaining legal terms.
also discussed common myths about using plain language, among them that
using plain language prohibits the use of legal terms, and creates
vagueness or ambiguity. He elaborated on ways to challenge these myths
in the second part of his presentation, in which he described the
drafting process from the lawyer’s point of view.
spoke in sentence level detail about fixes for problems with three
different types of ambiguity (syntactic, semantic and contextual
ambiguity) and gave examples of each. In opposition to the usual rule
of using fewer words, he recommended giving time and space to define
legal terms. Trudeau spent the remainder of his presentation discussing
examples. He included an example of a consent form, an ever-present
challenge to plain language and health literate communication.
Tools to Assess and Teach Child Health Skills to
Parents with Low Basic Literacy
Doris Ravotas, Ph.D.
Deborah Boulware O’Neal, Ph.D.
As a dynamic duo, Dr. Deborah O’Neal and Dr. Doris Ravotas lead the
session on “Tools to Assess and Teach Child Health Skills to Parents
with Low Basic Literacy.” Though the session was divided in halves for
each speaker to present on her own research and findings, both found
common ground in implementing pilot programs that measured the effects
of parents using the book, ‘What To Do When Your Child Gets Sick,’ as
one of the first “hands-on” resource they can use when their child
becomes ill. The book covers over 50 common childhood illnesses,
injuries, and health problems including fever, sore throat, cold and
flu, throwing up, stomach pain, and more.
From left, Deborah Boulware O'Neal, Ph.D., Doris
began the session by mentioning that the U.S. racks up between $106 to
$238 billion in unnecessary medical expenditures every year due to poor
health literacy. Such costs account for the excess use of hospital
emergency services, medication and treatment errors, minimal use of
preventive services, and a lower chance in following through with
prescribed treatment plans.
these statistics in mind, Ravotas and O’Neal were very eager in finding
a solution for decreasing the number of ED visits by parents and
children through the promotion of the ‘What To Do When Your Child Gets
began using the book in head start programs. As time progressed, she
hoped to expand the book’s usage in doctor offices, hospitals, and WIC
centers. As a result, O’Neal began developing a health
education program that she was determined would reach the masses. The
4-hour program would train health professionals on: health literacy and
the impact of low health literacy skills, how to identify and
effectively instruct low literacy parents, the organizational format of
the book, and the curriculum materials needed to help educate parents.
Subsequently, parents would then receive 20-minute trainings on how to
use the book and the importance of using it as a first-hand resource.
From her efforts, O’Neil succeeded in hosting 18 trainings across
Kansas with over 288 health professionals from 98 different clinical
sites. The effects of this program were far-reaching with a decrease in
doctor’s visits by 46%, a decrease in ER visits by 55%, a decrease in
the number of school days missed by 64% and the number of work day
missed by over half. O’Neal exclaims, “This shows that this program and
book really impacts the quality of lives for families in Kansas.”
Although a success story has already been written, O’Neal hopes to
expand this program across the rest of Kansas and touch as many lives
of her fellow Kansans as she possibly can.
Ravotas shared a very similar mission with O’Neal, her research
approach differed in many respects. Ravotas’ research targeted
Kalamazoo County with a low basic literacy population exceeding 13%.
Ravotas sought to identify which training approach would be most
effective in getting parents to use the book and ultimately, reduce the
number of ER visits and days of work and school missed due to illness.
Three training models were tested on individuals who varied in their
reading proficiency score. Study group #1 was given the ‘What To Do
When Your Child Gets Sick’ book and received no how to use the book.
Study group #2 was given the book and received basic training on common
care topics and how to use the book. Study group #3 was given the book,
received training in common care topics and how to use the book, and
received literacy tutoring on vocabulary, language skills, computation
skills, inferential skills, text search skills, and application skills.
Although Ravotas is in the process of collecting data for her study,
her insight and findings will be ground-breaking in informing health
professionals of the best practices for educating parents on how to
handle the day-to-day ailments and illnesses of their children. We look
forward to her research findings in the near future!
Designing Health Information: What Every Health
Professional Needs to Know
Stacy Robison, MPH, MCHES
Xanthi Scrimgeour, MHEd, MCHES
Too often as health professionals, we take care of the content of our
messages but give away the power of design when we send it off to
someone else. In their presentation, Stacy Robison and Xanthi
Scrimgeour encourage health professionals to take back their power for
the benefit of their audiences by learning the basic elements of design
to create documents and resources that are not only useful and usable
but also attractive—because “attractive things work better.” If in
creating attractive, well-designed materials we can ease the mental
burden placed on the user, we can free up space for them to better use
in trying to understand and absorb the material.
From left, Xanthi
Scrimgeour, MHEd, MCHES,
Stacy Robison, MPH, MCHES
this, Robison and Scrimegour offer the following ten basic tips for
1. Create an obvious path for the eye to follow.
2. Use visual hierarchy.
3. Use a grid to keep content and images aligned.
4. Incorporate white space.
5. Use bulleted and numbered lists.
6. Use conceptual cues.
7. Use images to facilitate understanding.
8. Use icons or images to call out important content.
9. Consider sans serif fonts.
10. Increase your font size.
is about much more than appearances. If we can successfully utilize
tools of visual communication, we can help the readers of our materials
to find what they need, understand it when they find it, and remember
it after they have read it.
How to Get Your Health Literacy Program Funded
S. Eric Anderson, Ph.D.
Dr. Anderson explained how to calculate the break-even point for a
program, determine whether the program is targeting theoretical or
risks, evaluate programs where odds can be calculated and each decision
has a value, assign dollar values to costs and benefits to determine if
program benefits exceed costs, assign dollar values to benefits to
determine which program is cost effective in a per-unit outcome and
compare alternatives where program benefits are expressed with a
S. Eric Anderson, Ph.D.
Break-even analysis (BEA) identifies the volume at which point
operations change from being a loss to profitable. Costs are classified
as either fixed or variable, depending upon whether they vary with the
volume of output. Profits occur when total revenues exceed total costs
- fixed costs plus variable costs. The break-even point is the point at
which total revenue is equal to total costs. In one scenario, Dr.
Anderson explained when it is beneficial to continue programs that
don’t break-even and strategies on how to price appropriately.
Risk management (RM) attempts to maximize areas where one has control
over the outcome while minimizing areas where one has little control.
It should be realized that risks can’t be eliminated only reduced. Dr.
Anderson provided insight on the risks of allocating funds targeting
unlikely risks (bio-terrorism) at the expense of likely dangers
Expected value (EV) provides a rational means for selecting the best
alternative if the odds can be calculated and each decision has a
value. Dr. Anderson evaluated dozens of risk reduction measures to see
if they valued out (exceeds 100%) and provided insight on determine if
a healthcare service or prevention program values out (exceeds 100%).
Cost benefit analysis (CBA) assigns dollar values to costs and benefits
to determine whether the benefits realized exceed costs for a
particular a program. Results of CBA are expressed as net benefits
(benefits minus costs). Dr. Anderson showed us how to calculate and
determine if the economic benefits exceed the costs (exceeds 100%) for
a variety of programs: stop smoking programs, weight management,
Cost effectiveness analysis (CEA) is better than CBA in situations when
assigning dollar values to benefits for which market prices do not
exist, such as a person’s life. In these scenarios, CEA may be a more
appropriate method since it uses a cost-per-unit outcome. Units of
measurement for CEA might include disease prevented, head injuries
averted, number of lives saved or cost per year of life. Dr. Anderson
pointed out that government agencies assess the value of life at $7.5
million, but how much they spend money is an entirely different story.
They will spend millions to save the life of a single miner trapped in
a cave, but balk at an extra $20,000 on a highway guardrail that would
save an average of one life per year. Superfund hazardous waste clean
ups prevent cancer at a cost of $5 billion per life saved.
Cost utility analysis (CUA) compares alternate strategies where net
benefits are expressed as the number of life years saved, with a
quality-of-life adjustment. The common measurement for CUA is
quality-adjusted life years (QALY). Rather than relying on implicit
judgments about the quality of life, CUA makes these values explicit in
the calculation. However, Dr. Anderson noted that QALY are subjective
determinations, are difficult to measure and not universally accepted.
The Language Tipping Point: Identifying the Drivers
of Language Access
Elizabeth Abraham, M.A., M.Sc., C.Tran.
Language access in health care involves finding ways to ensure that
language barriers do not affect health outcomes. Ms. Abraham focused
first on building a case for health care systems to improve safety and
quality of care for patients with limited English proficiency (LEP).
She identified five important building stones: quality, risk
management, compliance with federal and state law, equity and cost
Elizabeth Abraham, M.A.,
can’t be managed effectively without proper language access. Two
leading causes of errors are deficient consent and inadequate
medication instructions. Without a qualified medical interpreter, you
do not have informed consent. These problems are disproportionate among
LEP patients. Errors of clinical consequence can often be attributed to
improperly trained interpreters. Abraham identified several hallmarks
of poor communication leading to torts. One lawsuit, she said, would
pay for many interpreters.
and state laws that compel language access include Joint Commission
requirements, Title VI of the Civil Rights Act, language access
legislation in every state, and the Hill-Burton act of 1946.
cited a long list of costs attributed to lack of language access for
limited English speakers. The list included entering the healthcare
system in advanced and more costly stages of disease because of limited
access to primary care, a higher likelihood of being hospitalized, and
disproportionate use of emergency services.
also spoke about health inequalities. She told the story of Willie
Ramirez, whose life was changed due to a mistranslated word, resulting
in damages of $71 million dollars. (The story can be found at the
Health Affairs Blog: “Language, Culture, And Medical Tragedy: The Case
of Willie Ramirez” by Gail Price Wise.) Abraham pointed out that
interpretation is recreating language live, as it happens. Without
interpreters, there is no possibility for clarification—wrong meanings
do not get changed.
an interactive exercise in which participants exchanged horror stories
involving lack of language access at their places of work, Abraham
wrapped up the session with four steps for creating a comprehensive
language access plan. Enlisting champions from both the legal
and finance departments is crucial. Ways of achieving long term
solutions without project-killing expense include shared hires of
interpreter and creating consortiums of HCOs who can negotiate bulk
purchase of services.
she said, there are also ways to accomplish short-term solutions;
creating a staff Language Access Task Force and Communication Plan,
using over the phone interpretation, and video interpretation (her
organization uses ipads).
she said, there are quick wins—specifically, there are steps to make
phone interpretation work. They include staff training, instructions
posted on phones for how to use phone interpreters, department
“champions,” and concentration on high demand areas like the emergency
room and family medicine. There are wonderful ways, she concluded, to
make systems transformation in small steps.