Improving Health Literacy Final 2 21
“ W h a t D i d t h e D o c t o r S ay ? : ” I m p r o v i n g H e a l t h L i t e r a c y t o P r o t e c t Pa t i e n t S a fe t y
“What Did the Doctor Say?:”
Improving Health Literacy to
Protect Patient Safety
Another in the series of Health Care
at the Crossroads reports
© Copyright 2007 by The Joint Commission.
All rights reserved. This report is available for downloading on The Joint Commission’s Website,
www.jointcommission.org. You may print it off without permission from the Joint Commission.
To reproduce this report for mass distribution, you must obtain written permission from the publisher:
The Joint Commission
Attention: Director of Public Affairs
One Renaissance Boulevard
Oakbrook Terrace, Illinois 60181
“What Did the Doctor Say?:” Improving
Health Literacy to Protect Patient Safety
Joint Commission Public Policy Initiative
This white paper emanates from the Joint Commission’s Public Policy
Initiative. Launched in 2001, this initiative seeks to address broad issues that
have the potential to seriously undermine the provision of safe, high-quality
health care and, indeed, the health of the American people. These are issues
that demand the attention and engagement of multiple publics if successful
resolution is to be achieved.
For each of the identified public policy issues, the Joint Commission already
has relevant state-of-the-art standards in place. However, simple application
of these standards, and other one-dimensional efforts, will leave this country
far short of its health care goals and objectives. Rather, the Joint Commission
has devised a public policy action plan that involves the gathering of infor-
mation and multiple perspectives on the issue; formulation of comprehensive
solutions; and assignment of accountabilities for these solutions. The execu-
tion of this plan includes the convening of roundtable discussions and
national symposia, the issuance of this white paper, and active pursuit of the
suggested recommendations.
This paper is a call to action for those who influence, develop or carry out
policies that will lead the way to resolution of the issue. This is specifically
in furtherance of the Joint Commission’s stated mission to improve the safety
and quality of health care provided to the public.
“ W h a t D i d t h e D o c t o r S ay ? : ” I m p r o v i n g H e a l t h L i t e r a c y t o P r o t e c t Pa t i e n t S a fe t y
Table of Contents
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Executive Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Part I.
Make Effective Communications An Organizational Priority to Protect the
Safety of Patients . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Solutions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24
Part II.
Incorporate Strategies to Address Patients’ Communication Needs Across
The Continuum of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26
Solutions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
Part III. Pursue Policy Changes That Promote Improved Practitioner-Patient Communications . . 43
Solutions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47
Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48
Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50
Glossary of Terms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53
End Notes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 54
“ W h a t D i d t h e D o c t o r S ay ? : ” I m p r o v i n g H e a l t h L i t e r a c y t o P r o t e c t Pa t i e n t S a fe t y
Introduction
“Everything was happening so fast and everybody was
When literacy collides with health care, the issue of
so busy,” and that is why Mitch Winston, 66 years-old
“health literacy” – defined as the degree to which
and suffering from atrial fibrillation, did not ask his
individuals have the capacity to obtain, process, and
doctor to clarify the complex and potentially dangerous
understand basic health information and services need-
medication regimen that had been prescribed for him
ed to make appropriate health decisions10 – begins
upon leaving the hospital emergency department.1
to cast a long patient safety shadow.
When he returned to the emergency department via
ambulance, bleeding internally from an overdose of
Most Americans (44 percent) fall into the “intermediate”
Coumadin, his doctor was surprised to learn that Mitch
level of prose literacy. That is, they can apply informa-
had not understood the verbal instructions he had
tion from moderately dense text and make simple
received, and that he had ignored the written instruc-
inferences.11 Yet, health care information – such as
tions and orders for follow-up visits that the doctor had
insurance forms, consent forms, and medication
provided.2 In fact, these had never been retrieved from
instructions – is often very complex and seemingly
Mitch’s wallet.3 Despite their importance, they were
impenetrable. Even those who are most proficient at
useless pieces of paper. Mitch cannot read.4
using text and numbers may be compromised in the
understanding of health care information when they
The risk of miscommunication and unsafe care is not
are challenged by sickness and feelings of vulnerability.
solely the potential fate of those who cannot read. It is
a risk for a large segment of the American population
According to the Institute of Medicine, there is more to
who, according to the most recent national literacy
health literacy than reading and understanding health
study, have basic (29 percent) to below basic (14 per-
information.12 Health literacy also encompasses the
cent) prose literacy skills.5 An additional five percent
educational, social and cultural factors that influence
are non-literate in English.6 About half of the U.S. adult
the expectations and preferences of the individual,
population has difficulty using text to accomplish every-
and the extent to which those providing health care
day tasks.7 The ability of the average American to use
services can meet those expectations and preferences.13
numbers is even lower – 33 percent have basic and
Health care practitioners literally have to understand
22 percent have below basic quantitative skills.8 These
where their patients “are coming from” – the beliefs,
skills include the ability to solve one-step arithmetic
values, and cultural mores and traditions that influence
problems (basic) and simple addition (below basic.)9
how health care information is shared and received.
Effective communication is a cornerstone of patient safety.
4
“ W h a t D i d t h e D o c t o r S ay ? : ” I m p r o v i n g H e a l t h L i t e r a c y t o P r o t e c t Pa t i e n t S a fe t y
Introduction
The communications breakdown that Mitch Winston
Addressing health literacy issues is not the sole burden
experienced happens every day in every place where
of those providing health care services. There are
people seek health care services. It happened to a
implications as well for health care policymakers, pur-
concerned wife when she consented to have a “percu-
chasers and payers, regulatory bodies, and health care
taneous endoscopic gastrostomy tube” inserted into her
consumers themselves. For this reason, the Joint
husband, not knowing that it was a “feeding tube,”
Commission appointed an expert Roundtable panel
which was against the family’s wishes.14 It happened
that comprised a broad range of stakeholders who are
to the Hmong-speaking parents of infant Lia Lee, who
accountable for addressing health literacy. The
were unable to describe Lia’s epileptic seizures to the
Roundtable was asked to frame the issues that underlie
English-speaking emergency department doctor who
the health literacy problem and propose solutions for
was treating her, which led to her initial misdiagnosis
their resolution. Among the specific issues addressed
of pneumonia.15
by the Roundtable were the impact low health literacy
has on patients and their safety; the current state and
Effective communication is a cornerstone of patient
quality of health care communications and their
safety. The Joint Commission’s accreditation standards
impacts on all patients; health care provider and public
underscore the fundamental right and need for patients
health interventions aimed at improving health care
to receive information – both orally and written – about
communications; and the need to create organization
their care in a way in which they can understand this
cultures that place a high priority on culturally compe-
information. Further, accredited organizations are
tent and safe environments in which clear communica-
explicitly encouraged to ensure patient understanding.16
tions are intrinsic to all care processes and interactions.
Indeed, several of the Joint Commission’s National
Patient Safety Goals – requirements for accreditation set
This white paper represents the culmination of the
by an expert patient safety panel – specifically address
Roundtable’s discussions. If actively pursued, the mul-
communication issues. But health literacy issues which
tiple recommendations in this report offer a real oppor-
go unrecognized and unaddressed undermine the ability
tunity to improve health literacy, reduce communica-
of health care organizations to comply with accreditation
tions-related errors, and better support the interests of
standards and safety goals meant to protect the safety of
patients and providers of care alike.
patients. The safety of patients cannot be assured with-
out mitigating the negative effects of low health literacy
and ineffective communications on patient care.
The safety of patients cannot be assured without mitigating the negative effects
of low health literacy and ineffective communications on patient care.
5
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Executive Summary
Recommendation I: Make
literacy problems among specific groups. Those
Effective Communications
with literacy impairments come from all walks of
life; however, educational level, nativity, socio-eco-
An Organizational Priority to
nomic status, and elderly age are all potential
Protect the Safety of Patients
indices of low health literacy.
Health literacy issues and ineffective communica-
tions place patients at greater risk of preventable
Solutions to Make Effective Communications
adverse events. If a patient does not understand
An Organizational Priority to Protect the Safety
the implications of her or his diagnosis and the
of Patients:
importance of prevention and treatment plans, or
• Raise awareness throughout the organization
cannot access health care services because of com-
of the impact of health literacy and English
munications problems, an untoward event may
proficiency on patient safety.
occur. The same is true if the treating physician
• Train all staff in the organization to recognize
does not understand the patient or the cultural con-
and respond appropriately to patients with
text within which the patient receives critical infor-
literacy and language needs.
mation. Cultural, language and communication
• Create patient-centered environments that stress
barriers – together or alone – have great potential
the use of clear communications in all interac-
to lead to mutual misunderstandings between
tions – from the reception desk to discharge
patients and their health care providers.
planning – with patients.
• Modify strategies for compliance with The Joint
Health care organization leaders are responsible for
Commission’s National Patient Safety Goals to
creating and maintaining cultures of quality and
accommodate patients with special literacy and
safety. Among the key systems for which leaders
language needs.
must provide stewardship for is communications.
• Use well-trained medical interpreters for patients
Yet, awareness of the prevalence of health literacy
with low English proficiency.
issues is low among health care executives and
• Provide reimbursement to cover health care
other managers.
organization costs for providing trained
interpreters.
Health care organizations should know and reflect
• Create organization cultures of safety and quality
the communities they serve. This includes not only
that value patient-centered communications as
the primary ethnic groups and languages through
an integral component of delivering patient-cen-
which they express themselves, but also the gener-
tered care.
al literacy level of the community as well. The
• Assess the organization’s patient safety culture
quality of communications and the demographics
using a valid and reliable assessment tool, such
of the community served become even more
as the AHRQ Hospital Survey on Patient Safety
important in light of the prevalence of health
Culture.
6
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Executive Summary
• Assess the organization’s stewardship and accul-
not read well, or that they do not understand.
turation of patient-centered communications,
Physicians, nurses and other health professionals
such as through the AMA’s Patient-Centered
may never know that among the patients they have
Communication Framework.
seen for years, some have suffered silently, grasp-
• Become knowledgeable about the literacy levels
ing far less than others would have expected.
and language needs represented by the commu-
nity served.
Since a patient’s health literacy skills are typically
• Make cultural competence a priority as demon-
not evident during a health care encounter, health
strated by hiring practices that value diversity
care professionals need to err on the side of cau-
and the continuing education of the staff.
tion and make clear communications and plain lan-
• Pursue a research agenda to expand understand-
guage – in the language and at a level that the
ing of the impact that communication issues
patient can understand – standard procedure for all
have on patient safety, disparities in health care,
patient encounters. This applies to the written
and access to care.
materials and verbal information provided in the
informed consent process and to patient education.
Recommendation II: Address
Patients’ Communication Needs
During a hospital stay, a patient’s care is frequently
“handed-off” from one caregiver to the next during
Across The Continuum of Care
shift changes, for special procedures or therapy,
At all points across the continuum of care, low
or when the patient is transferred to a new unit.
health literacy levels and ineffective communica-
Patients may also be transitioned to different care
tions can compromise patient safety. Recognizing
settings rather than being discharged home.
potential symptoms and knowing when to go to
All of these scenarios create opportunities for
the doctor are more challenging for those with low
error related to communication breakdowns that
literacy; such individuals are also known to experi-
must be addressed.
ence poorer health outcomes. Health literacy is an
important factor in engaging patients in preventive
In order to self-manage their own health care, indi-
care as well. Once the need for care is recognized,
viduals must be able to locate health information,
patients with limited literacy may have difficulty
evaluate that information for relevance and credibil-
finding their way into and through the health care
ity, and analyze risks and benefits. For those with
organization, and be too intimated to approach
limited literacy skills, self-management may be too
others for assistance.
much of a challenge to be overcome, especially if
such challenges are undiscovered or ignored.
Many patients who have low literacy skills mask
what they feel are their inadequacies. For them,
there is too much shame in admitting that they do
7
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Executive Summary
Solutions to Address Patients’ Communication
• Emphasize learning of patient-centered commu-
Needs Across the Continuum of Care:
nication skills in all health professional education
Entry
and training.
• Eliminate “barriers to entry” in the care system
• Adopt disease management practices, such as
by educating patients, particularly those with low
individualized education and multi-disciplinary
health literacy, about when to seek care.
team outreach to patients, which are known to
• Develop and provide insurance enrollment
reduce the incidence of error and positively
forms, benefit explanations, and other insurance-
affect health outcomes.
related information that is “client-centered,” i.e.,
• Redesign the informed consent process to
written at a low literacy level in plain language.
include forms written in simple sentences and in
• Ensure easy access to health care organization
the language of the patient; use “teach back”
services by using clear communications in all
during the informed consent discussion; and
wayfinding materials and signage.
engage the patient in a dialogue about the
• Design public health interventions and commu-
nature and scope of the procedure.
nications that are “audience-centered,” including
• Partner with patients in shared decision-making
messages that are put in the context of the lives
and provide appropriate education – e.g.,
of the target population, and in familiar and
through employing patient decision support
preferred formats.
aids – to inform patient decisions.
• Engage patients in their role as safety advocates
Health Care Encounter
by communicating with them about safety and
• Apply communications techniques known to
giving them tools to permit their active involve-
enhance understanding among patients:
ment in safe practices.
-Use plain language always
-Use “teach back” and “show back” techniques
Transition
to assess and ensure patient understanding
• Standardize the approach to “hand-off” commu-
-Limit information provided to two or three
nications:
important points at a time
-Use clear language so that key information can-
-Use drawings, models or devices to
not be misinterpreted
demonstrate points
-Use “teach back” and “check back” methods
-Encourage patients to ask questions
-Standardize shift-to-shift and unit-to-unit reporting
• Employ a “universal precautions” approach to all
-Smooth transitions to new care settings
patient encounters by using clear communica-
-Give patients information about all of their
tions and plain language, and probing for under-
medications, diagnoses, test results, and plans
standing.
for follow-up care.
8
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Executive Summary
• Reconcile patient medications at each step along
Where higher levels of patient intervention and
the continuum of care, and provide each patient
education are required, incentives may be needed
with a “wallet” card that lists all current medica-
to facilitate constructive change in the dynamics of
tions and dosages, and encourage patients to
the relationships between patients and physicians.
keep it updated.
Physicians today are compelled to squeeze more
patients into their work day, thus creating the
Self-Management
“15-minute office visit.” Patients with limited
• Address the special needs of the chronically ill,
literacy skills may require more time – time to
many of whom have limited health literacy, so
“teach back,” time to repeat key points in the visit,
that they are better prepared to self-manage their
and time for patient education. Both time and
conditions, such as through modifying and
money work against patient education, as this is
applying the Wagner Chronic Care Model.
seldom a reimbursable physician service.
• Provide self-management education to patients
that is customized to the learning and language
As health insurance premiums continue to rise and
needs of the individual patient.
significant portions of these costs are shifted to
• Regularly place outreach calls to patients to
consumers, the pressure on consumers to become
ensure understanding of, and adherence to, the
well-informed, savvy users of health care services
self management regimen.
is increasing.
• Expand patient safety taxonomies to begin to
account for and understand patient safety risks
Solutions to Pursue Policy Changes that Promote
associated with self-management.
Improved Practitioner-Patient Communications:
• Refer patients with low literacy to adult learning
Recommendation III: Pursue
centers, and assist them with enrollment proce-
Policy Changes That Promote
dures.
• Encourage partnerships among adult educators,
Improved Practitioner-Patient
adult learners and health professionals to
Communications
develop health-related curricula in adult learning
If subtle probing in the patient encounter reveals
programs, and conversely, to assist in the design
that a patient cannot read, the health care practition-
of patient-centered health care services and
er does have the option of encouraging the patient’s
interventions.
enrollment in adult learning programs. Adult
• Broaden reimbursement policies for patient
education centers have established track records
education provided in physician offices beyond
in raising reading, writing and math skills, but they
that for diabetes education to other diseases
can also specifically enhance health literacy levels.
and chronic conditions.
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Executive Summary
• Pursue pay-for-performance strategies that pro-
The amelioration of medical error and adverse
vide incentives to foster patient-centered com-
events must begin with creating cultures of
munications and culturally competent care.
safety and quality. In such cultures, systems and
• Expand the number of medical liability
processes of care – from accessing the “system”
insurance companies that provide premium
to the patient encounter, from informed consent
discounts to physicians who receive education
to discharge – must be designed to protect the
on patient-centered communications techniques.
patient’s safety and invite the patient’s participation
• Expand the development of patient-centered
in his or her care.
educational materials and programs to support
the development of informed health care
Attention especially needs to be paid to the
consumers.
“system” as it is today – the regulatory and
reimbursement infrastructure – and the opportunity
Conclusion:
it provides to effect a chain of changes that will
permit patients to receive more time, attention,
The communications gap between the abilities of
education and understanding of their conditions
ordinary citizens, and especially those with low
and their care.
health literacy or low English proficiency, and the
skills required to comprehend typical health care
information must be narrowed. Hundreds of stud-
ies have revealed that the skills required to under-
stand and use health care-related communications
far exceed the abilities of the average person. The
high rate of adverse events related to communica-
tion breakdowns, now widely recognized, is also
widely believed to be unacceptable.
Health care organization leaders are responsible for creating and maintaining
cultures of quality and safety. Among the key systems for which leaders must
provide stewardship for is communications.
10
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I. Make Effective Communications An
Organizational Priority to Protect the
Safety of Patients
Incommunicado
care providers or between care providers and their
In its 2004 report, Health Literacy: A Prescription
patients, is the primary root cause of the nearly
to End Confusion, the Institute of Medicine (IOM)
3,000 sentinel events – unexpected deaths and
states that “Although causal relationships between
catastrophic injuries – that have been reported to
limited health literacy and health outcomes are
The Joint Commission.23 Moreover, communication
not yet established, cumulative and consistent
issues are among the most cited causes underlying
findings suggest such a causal connection.”17
medical malpractice litigation.24
It is well documented that people with low health
literacy are hospitalized more often and for longer
Misadventures in the administration of drugs are
periods of time,18 use emergency departments
the most common category of medical error.25
more frequently,19 and for those with asthma20 or
These occurrences arise for a variety of reasons –
diabetes,21 manage their diseases less proficiently.
prescriber error, dispensing error, drug interactions
– but they can also be the result of communication
While there is substantial research linking health
problems.26 Indeed, the IOM’s 2006 report,
literacy and health outcomes,22 far less research has
Preventing Medication Errors, concludes that
been conducted to identify the precise linkages
current methods for communicating about medica-
between health literacy and medical error. Such
tions with patients are inadequate and contribute
research is important for purposes of establishing a
to incidences of medication errors.27 Among its
definitive evidence base, and needs to be pursued.
many recommendations, the report underscores the
But, despite this need, it is clear that low health
importance of patient-physician communications,
literacy and its associated miscommunications and
and the role of the practitioner in providing defini-
misunderstandings can – and do – increase the risk
tive education on drug usage.28 The report further
of adverse events in health care. For even the
recommends that written instructions from pharma-
most health literate, the high literacy demands
cies – on which patients most frequently rely for
of health care delivery provide ample opportunity
drug information – must be significantly improved
for miscommunication.
to take into account the literacy, language, age and
visual acuity of the individual.29 Another recent
If a patient does not understand the implications
study of prescription drug labeling found that while
of her or his diagnosis and prevention or treatment
patients with low literacy had particular difficulty
plans, an untoward event may occur. The same is
understanding medication warning labels, patients
true if the treating physician does not understand
at all literacy levels had difficulty understanding
the patient or the cultural context within which
multi-step instructions written at the high school
the patient receives critical information. In fact,
reading level.30
communication breakdowns, whether between
11
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Goal Oriented
Even verbally confirming a patient’s identity – as
The Joint Commission’s National Patient Safety
one of two methods required under Goal 1 which
Goals were created to prevent sentinel events from
requires accurate patient identification – may be
occurring. These Goals are based on the recom-
stymied by communications issues. Take the case
mendations of a group of national patient safety
of Mr. Garcia, who needed to have his staples
experts that advises The Joint Commission and are
removed.31 When a resident entered his room,
regularly updated to address identified areas in
he asked the man in bed if he was Mr. Garcia.32
health care delivery that present high risks for
The man smiled and agreeably nodded his head.
patient injury. For 2007, 24 setting-specific, Goal-
He then had his staples removed…prematurely.33
related requirements are in place. Accredited health
He was not Mr. Garcia.34 Rather, he was a man
care organizations are expected to be in compli-
who did not hear well and who had the habit of
ance with these requirements. The requirements
smiling and nodding in response to something he
specifically address patient care processes that are
did not understand.35 Though, in this case, it was
known to be vulnerable to error and associated
hearing impairment that contributed to the error,
with patient harm.
it very well could have been a language barrier.
Non-English speaking individuals and those with
Limited health literacy and ineffective practitioner/
limited English proficiency (LEP) may nod amiably
patient communications challenge the ability of
in agreement, without understanding – much less
health care organizations to meet the National
agreeing with – what has been said.
Patient Safety Goal requirements. For instance,
Goal 13, which requires that health care organiza-
The following table provides a review of National
tions encourage patients to be active participants
Patient Safety Goals that are particularly relevant to
in their care – to be the extra eyes and ears to
patient-provider communications. The table high-
protect their own safety – is especially challenging
lights the obstacles presented by low health literacy
for patients with low health literacy. People
and ineffective communications, and provides rec-
with low literacy skills or those who speak little
ommendations for addressing these communica-
or no English often respond passively during
tions issues.
care encounters.
Limited health literacy and ineffective practitioner/patient
communications challenge the ability of health care organizations to meet
the National Patient Safety Goal requirements.
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Impact of Limited
Health Literacy and
Selected NPSGs & Related Communications Issues
Communications-Related
Requirements
on Compliance
Solutions
Goal 1 Improve the accuracy of patient identification.
1A Use at least two patient identifiers
Language or communication barriers or
Never state the patient name and ask the
when providing care, treatment or
patient confusion or mental impairment
patient to confirm it. Having a patient
services.
may impede the patient’s ability to verbal-
state her/his name is safer practice.
1B
ly participate in the identification process.
Having a patient verify her/his identity is
Prior to the start of any invasive
A nod of agreement may not be a verifica-
appropriate as long as staff consider the
procedure, conduct a final verifica-
tion of identification.
patients’ reliability to do so.
tion process, (such as a “time out,”)
to confirm the correct patient, proce-
For procedures done under local anesthe-
Site verification and marking should ideally
dure and site, using active—not
sia or when the “time out” is done prior to
take place with the patient awake, involved
passive—communication techniques.
induction of anesthesia, the patient may
and aware if possible. A fail-safe method
be able to participate in the time out.
includes having all of the care team
Limited health literacy could compromise
involved, and not starting the procedure
the patient’s ability to participate.
until any and all questions and concerns
are resolved. The patient’s name, proce-
dure, and the site should be stated aloud,
exactly as they appear on the informed
consent form, and all team members
should actively acknowledge agreement.
Goal 2 Improve the effectiveness of communication among caregivers.
2A For verbal or telephone orders or for This requirement does not apply directly
Caregivers should practice “read back” or
telephonic reporting of critical test
to caregiver-patient communication, but it
“teach back” with their colleagues as well
results, verify the complete order or
is consistent with the process of using
as their patients.
test result by having the person
“teach back” – asking the patient to repeat
When do-not-use abbreviations are discov-
receiving the information record and
back or teach back the information pro-
ered, copy the page of the order or med-
“read-back” the complete order or
vided to confirm accurate understanding.
ical-related document that contains one or
test result.
Adherence to this requirement (2B) is
more of the do-not-use abbreviations and
2B Standardize a list of abbreviations,
especially important in patient communi-
send it to the clinician who generated the
acronyms, symbols, and dose desig-
cation since abbreviations, acronyms, and
order or document.
nations that are not to be used
other medical jargon are particularly chal-
Report all critical tests or results to the
throughout the organization
lenging for all patients, and may be partic-
appropriate responsible licensed caregiver
2C
ularly confusing for patients with limited
Measure and assess, and if appropri-
or authorized agent so that the patient can
health literacy.
ate, take action to improve the timeli-
be promptly and properly treated. Provide
ness of reporting, and the timeliness
Patients with limited health literacy and
patients with test orders to take with them
of receipt by the responsible licensed
even adequate literacy may not know the
to where the test is being done. Inform
caregiver, of critical test results and
specific tests being performed nor know
patients as to how and when they will get
values.
to, or feel empowered to, follow up on
test results, and encourage them to follow
the results.
up and not to assume that “no news is
good news.”
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Impact of Limited
Health Literacy and
Selected NPSGs & Related Communications Issues
Communications-Related
Requirements
on Compliance
Solutions
2E Implement a standardized approach
Hand offs to patients occur in every
Use clear language in communications
to “hand off” communications,
patient encounter – to take medications,
between caregivers and with the patient.
including an opportunity to ask
to encourage active prevention practices,
Incorporate effective communications
and respond to questions.
and to manage chronic illnesses – and
techniques, such as “teach back” or
at discharge from a health care setting.
“repeat back,” and limit interruptions.
For patients with limited health literacy,
If a patient has limited English proficiency,
hand-offs can be particularly perilous.
enlist the services of a qualified medical
interpreter. Encourage interactive question-
ing, and keep the communication patient-
centered, and avoid irrelevant details.
Smooth hand-offs between care settings.
On discharge, provide the patient with
information about discharge medications,
diagnoses and results of procedures and
tests in written and verbal language that
the patient can understand. A simple
follow-up call to the patient by a doctor,
nurse or pharmacist can prevent post-dis-
charge errors. Use technology that can
effectively transmit information across care
settings and providers.
Goal 3 Improve the safety of using medications.
3B Standardize and limit the number of
Patients need to be aware of the possibili-
Provide both the brand and generic drug
drug concentrations used by the
ty of drug confusion. This is especially
names on the medication label and in
organization.
difficult for low health literacy patients
the patient’s chart. Explain to the patient
3C
the purpose of the medication and, if
Identify and, at a minimum, annually
possible, what the pill will look like.
review a list of look-alike/sound-alike
drugs used by the organization, and
take action to prevent errors involv-
ing the interchange of these drugs.
3D Label all medications, medication
containers (for example, syringes,
medicine cups, basins), or other
solutions on and off the sterile field.
Goal 7 Reduce the risk of heath care-associated infections.
7A Comply with current Centers for
Patients with low health literacy may be
Encourage patients and families to
Disease Control and Prevention
unaware of common infection transmis-
speak up and ask health care workers
(CDC) hand hygiene guidelines.
sion modes, and/or do not feel empow-
to clean their hands, and remind them
7B
ered to raise concerns about hand
to wear gloves.
Manage as sentinel events all
hygiene with caregivers.
identified cases of unanticipated
As part of patient education, organizations
death or major permanent loss of
should teach effective hand hygiene
function associated with a health
practices.
care-associated infection.
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Impact of Limited
Health Literacy and
Selected NPSGs & Related Communications Issues
Communications-Related
Requirements
on Compliance
Solutions
Goal 8 Accurately and completely reconcile medications across the continuum of care.
8A There is a process for comparing the
The first step in the process is to gather a
Elicit from the patient as comprehensive a
patient’s current medications with
complete list of the patient’s current med-
medication history as possible. Consult
those ordered for the patient while
ications. It may be more difficult for a low
the responsible pharmacist(s) to fill in
under the care of the organization.
health literacy or LEP patient to provide
gaps or to compile the list, especially
8B
this information.
when the patient takes 10 or more drugs.
A complete list of the patient’s med-
ications is communicated to the next
People with limited literacy are at high
Improve the interviewing process with
provider of service when a patient is
risk for medication mix-ups and dosage
patients by prompting patients with open-
referred or transferred to another set-
errors. The elderly, who typically take
ended, specific questions about their
ting, service, practitioner or level of
several drugs daily are most likely to have
health as well as their medications. Be sure
care within or outside the organiza-
limited health literacy and decreased cog-
to ask if the patient uses over-the-counter
tion. The complete list of medications
nitive function, and are at particular risk.
drugs, herbals, and/or dietary supplements.
is also provided to the patient on dis-
People at all literacy levels are negatively
After reconciliation, the organization
charge from the facility.
affected by inadequate drug labeling and
should provide the patient with a medica-
preventable medication interactions.
tion card that includes the list of all the
medications he/she are taking and encour-
age timely updating of the list. The patient
should be encouraged to carry the card in
his/her heir wallet or purse.
Educate the community (for example,
through primary care physicians) so that
patients know to bring their medication lists
as well as insurance cards when entering a
health care organization for admission.
Goal 9 Reduce the risk of patient harm resulting from falls.
9B Implement a fall reduction program
An individual with limited health literacy
Communicate a patient’s fall risk to the
including an evaluation of the effec-
may have less understanding of the full
patient and family and remind the patient
tiveness of the program.
risks associated with her/his condition.
to call for assistance before getting out of
bed or up from a chair (reassure the
patient that this does not bother the staff.)
Ask the patient to “show back” or provide
a “return demonstration” on how to use
the call light button to call for assistance
to ensure her/his understanding.
Be aware that some patients are prone to
falls because of changes in levels of inde-
pendence, slow adaptation to environmen-
tal changes, short-term memory changes,
sensory changes (for example visual or
auditory), or communication difficulties.
Optimize the environment of care by
assuring that the patient’s needed objects
are accessible at all times, improving light-
ing, controlling noise, moving higher-risk
patients closer to the nurses’ station, elimi-
nating slippery floors or loose carpeting,
and installing handrails.
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Impact of Limited
Health Literacy and
Selected NPSGs & Related Communications Issues
Communications-Related
Requirements
on Compliance
Solutions
Goal 10 Reduce the risk of influenza and pneumococcal disease in institutionalized older adults.
10A Develop and implement a protocol The elderly, who are high priority for
The first step is to consider preventive
for administration and documenta-
receiving these vaccines, are also most
measures. In ambulatory settings, remind
tion of the flu vaccine.
likely to have low health literacy and
health care providers to offer both flu and
10B
impaired cognitive function. People
pneumococcus vaccines to older patients.
Develop and implement a protocol
with limited health literacy often do not
for administration and documenta-
Speak slowly, avoid jargon and use “teach
understand when it is appropriate to seek
tion of the pneumococcus vaccine.
back” to ensure the benefits of the vac-
medical attention and to take active steps
10C
cines are understood.
Develop and implement a protocol
to prevent illness.
to identify new cases of influenza
If the patient cannot remember whether
and to manage an outbreak.
he or she has already received the vac-
cine, administer the vaccine again. (The
CDC has found this to be a safe practice.)
Goal 13 Encourage patients’ active involvement in their own care as a patient safety strategy.
13A Define and communicate the
People with limited health literacy are
Explain to patients and their families that
means for patients and their fami-
more likely to be passive about their care
the single most important way they can
lies to report concerns about safety
and treatment plans. Those with limited
help health care providers to prevent
and encourage them to do so.
English proficiency may be inhibited from
errors is to be active members of the
asking questions because of language and
health care team.
cultural barriers. All patients should be
Use “teach back” to ensure patient under-
encouraged to be active participants in
standing at every step of the care process
their care.
or encounter.
Provide explicit – and understandable –
information to patients and their families
about the risks associated with th health
care procedures or courses of care and
what to watch out for during or after
such care.
Provide information – that is patient-cen-
tered, reading level or language appropri-
ate, or in diagram form – about potential
side effects of treatment so the patient is
better prepared if known side effects do
occur or if something unexpected hap-
pens. Encourage the patient to report a
problem right away so he/she can get
help before it gets worse.
Encourage patients and their families to
feel comfortable enough to speak up
about any concerns they have about errors
or the quality of care they are receiving.
Acknowledge generational and cultural
factors that may prevent a patient from
wishing to be actively involved in patient
care decisions.
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Impact of Limited
Health Literacy and
Selected NPSGs & Related Communications Issues
Communications-Related
Requirements
on Compliance
Solutions
Goal 15 The organization identifies safety risks inherent in its patient population.
15A The organization identifies patients
The conduct of a risk assessment requires
Employ patient-centered, individualized
at risk for suicide.
effective communication between the
and empathetic communications with
15B
patient and the clinician.
the patient.
The organization identifies risks
associated with long-term oxygen
Death or major injury from fire in the
Provide access to information and commu-
therapy such as home fires.
home while receiving supplemental oxy-
nication opportunities, such as through a
gen therapy is the most frequently report-
crisis prevention hotline, for patients and
ed sentinel event in the home care setting.
families.
Inability to understand the risks associated
Provide education to the patient and fami-
with smoking when oxygen therapy is
ly regarding causes of fire and fire preven-
being provided or to understand the con-
tion activities.
ditions that can lead to a fire significantly
increase this risk for low health literacy or
Conduct a home safety risk assessment
LEP patients.
that addresses the presence or absence
and working order of smoke detectors,
fire extinguishers and fire safety plans,
and review all medical equipment.
Assess the patient’s level of comprehen-
sion and compliance and report any con-
cerns to the patient’s physician.
The numbering of National Patient Safety Goals is not sequential as some goals have been retired and others have been added. Certain
goals, such as Goal 11: Reduce the Risk of Surgical Fires in ambulatory care settings, Goal 12: Implementation of the National Patient
Safety Goals and Associated Requirements By Components and Practitioner Sites, and Goal 14: Prevent Health Care-Associated Pressure
Ulcers were not included in this table because there is not a clear link to patient communications. Solutions for meeting the needs of
patients, particularly for low health literacy or low English proficiency patients were derived from the Joint Commission Resources publica-
tions: Patient Safety Essentials for Health Care and Patients as Partners: How to Involve Patients and Families in Their Own Care, as well
as the Joint Commission’s Speak Up campaign. These are suggestions and do not necessarily represent compliance requirements.
Worlds Apart
inability of her Hmong-speaking parents and the
In her book, The Spirit Catches You and You Fall
English-speaking physicians to communicate with
Down, Anne Fadiman describes the several-year-
each another. At each discharge, Lia’s father signed
long medical plight of young Lia Lee, her parents,
consent forms he could not read and discharge
and the American medical professionals who treat-
instructions he neither read nor understood.
ed her. Twice, Lia Lee, a few months-old and suf-
fering epileptic seizures, was brought to the emer-
When Lia’s condition worsened and she was even-
gency department (ED) of the community hospital
tually correctly diagnosed, she was prescribed a
in Merced, California, where her refugee Hmong
remarkably complex pharmaceutical regimen that
parents had resettled the family. Twice, Lia was
included look-alike drugs, the labels of which her
misdiagnosed with pneumonia because of the
parents could not read. Her parents were also
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required to fractionate pills, administer liquids
language barriers – and the accompanying potential
through droppers, and gauge her temperature
for miscommunication – are a priority concern in
– the measures and markers for which they could
health care delivery.
neither figure nor read.
A research study conducted by The Joint
Through her young life, neither Lia’s parents nor
Commission sought to determine just what
her medical team ever fully understood each
happens to LEP patients in U.S. hospitals.
other’s perspectives on Lia’s illness. The physicians
The study examined the characteristics – impact,
and nurses who treated Lia conveyed extreme
type and causes – of adverse events experienced
frustration with what they perceived as Lia’s “non-
by LEP and English-speaking patients.
compliant” parents and their inability to prevent
Lia’s eventual grand mal seizure. Lia’s parents were
Among the important findings of the study were
equally frustrated because their cultural beliefs and
the differences in impact adverse events had on
traditional healing methods were not recognized
the LEP versus the English-speaking patients.
and respected by the care team. As a result, mis-
Some degree of physical harm occurred to 49.2
trust, intolerance, and a host of errors contributed
percent of the LEP patients that had reported
to – at the close of Fadiman’s book – a tragic
adverse events, but only 29.5 percent of English
outcome for Lia.
speakers suffered physical harm from adverse
events. Further, among those that did suffer harm,
Lia’s story has become an oft-noted cautionary
47 percent of LEP patients had moderate temporary
tale of cultural and communication barriers,
harm or worse, compared to only 25 percent of
and the negative outcome that may result from
English-speaking patients. The rate at which LEP
misunderstandings between caregivers and patients
patients suffered permanent or severe harm or
and their families.
death was 3.7 percent, compared to 1.4 percent
of English-speaking patients.
L.E.P. in the U.S.A.
The study does not explain the root cause for these
Approximately 21 million people in the U.S. speak
differences. It may be that the English-speaking
English “less than very well.”36 And, there will be
patients, though vulnerable to preventable adverse
significantly more in the years to come. People
occurrences, have more opportunity to participate
with limited English proficiency (LEP) can be high-
in their care, communicate expectations and
ly literate in their own languages, but given the
respond to new information, and to understand
immigrant profile of many in the U.S., a number
when transgressions or variations occur. In other
may be, like Lia Lee’s parents,37 unable to read or
words, they are better armed to protect themselves.
write in their native languages. Western methods
of measurement – such as using a thermometer –
Of course, the goal is to prevent errors and harm
and concepts of risk may be completely unfamiliar
that could occur because of language issues.
to some, as they were to the Lee family. In a
Since Lia Lee’s experience in the 1980s, health care
growing number of communities across the nation,
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organizations and practitioners are increasingly
are common and have potentially significant clinical
relying on interpreters in care encounters.
consequences.42 The study examined 13 pediatric
However, the only interpreters available are often
care encounters that involved hospital interpreters,
family members or others who work in the care
as well as ad hoc interpreters.43 Ad hoc interpreters
setting and have some degree of familiarity with the
included nurses, social workers, and an 11 year-old
language at hand. This can place both the patient
sibling.44 Each encounter, on average, resulted in
and the physician or other caregiver in a perilous
31 interpreter errors.45 The most common error
position. In a recent essay in Health Affairs, Alice
type was omission (52%), followed by false fluency
Chen wrote of the challenges and frustration she
(16%), substitution (13%), editorializing (10%), and
experienced when she had to rely on her patient’s
addition (8%).46 Sixty-three percent of all errors had
husband as the interpreter.38 Dr. Chen, concerned
potential clinical consequences.47 These errors were
that her patient’s aches and pains and evident
more likely to be committed by ad hoc interpreters
depression were the result of spousal abuse, was
(77%) than by hospital interpreters (53%). The
unable to ask such a question with the husband
errors included omitting questions about drug aller-
serving as interpreter.39 Instead, she had to work
gies; omitting instructions on the dose, frequency,
her way through other possibilities for her patient’s
and duration of antibiotics and rehydration fluids;
condition, without asking what would have been
adding that hydrocortisone cream must be applied
among her first questions.40
to the entire body, instead of only to the facial rash;
instructing a mother not to answer personal ques-
Title VI of the federal Civil Rights Act requires
tions; omitting a statement that a child had already
that hospitals provide interpretation services to
been swabbed for a stool culture; and instructing a
LEP patients and those with disabilities that affect
mother to put amoxicillin in both ears for treatment
their ability to communicate. This has long been
of otitis media.48
an un-enforced mandate, but now the Centers
for Medicare and Medicaid (CMS) has initiated a
Flores et al conclude that third-party payers should
requirement that all of its beneficiaries have access
consider reimbursing health care providers for their
to interpreters. In addition, several states require
use of trained interpreters to discourage the use of
that hospitals have formal Language Assistance
ad hoc interpreters and mitigate the resulting high
Programs, and others, such as New Jersey and
rate of errors.49 Indeed, according to a recent study
California, have specifically banned the use of
by the Health Research and Educational Trust,
children as interpreters.41 The reliability of inter-
only three percent of hospitals receive reimburse-
preters, however, merits much scrutiny, since poor-
ment for interpretation services, yet 80 percent of
ly trained or untrained interpreters can profoundly
hospitals treat LEP patients.50 Although the federal
contribute to, rather than prevent, medical errors
government has deemed medical interpreters a
and adverse events.
reimbursable expense under fee-for-service
Medicaid, it is up to states to determine whether
A 2003 study of the rate of errors in medical inter-
they will pay for these services and only eight have
pretation conducted by Flores et al found that errors
done so thus far.51
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Currently, there are no nationally recognized
Culture Clash
standards for the training of medical interpreters.
Language barriers are not the only obstacle to
Therefore, health care organizations are often
health literacy and effective communication.
left to set their own expectations for interpreter
Culture clashes can erode trust between caregivers
competency, or to rely on local or national training
and patients and their families and impede effective
organizations. This has resulted in a national pool
communication. When it was explained to Lia’s
of medical interpreters who have inconsistent skills
father that she would likely die within hours of
and qualifications. At the most basic level, organiza-
being removed from life-sustaining equipment, his
tions should have some mechanism for evaluating
impulse was to grab her and run, which is what
an individual’s bilingual language proficiency.
he did.53 In Hmong culture, it is deeply offensive
However, medical interpretation is a skill that
and threatening to predict the death of someone.54
requires more than language proficiency.
Similarly, when a Spanish-speaking interpreter
Professional medical interpretation training pro-
was asked to tell a Mexican mother that her child
grams should have curricula that include a basic
would die overnight and there was no more hope,
clinical orientation that addresses anatomy and
the interpreter refused because “you never tell a
common illnesses and procedures; interpreter skills,
mother in our culture to give up hope.”55
such as managing communication flow; general
language and medical terminology; legal and
To encourage “cultural competency” among health
ethical issues; reading comprehension; and cultural
professionals, the Office of Minority Health estab-
competence training.52 Guidance on setting per-
lished the Culturally and Linguistically Appropriate
formance and training expectations for medical
Services (CLAS) Standards. The Joint Commission
interpreters is available from the National Council
accreditation standards complement and echo the
on Interpreting in Healthcare, www.ncihc.org.
CLAS standards. Both the CLAS standards and
those of The Joint Commission recognize that
It may not be practical or economically feasible
culturally and linguistically appropriate services are
to always have in-person interpretation, given the
essential to safe, high-quality care. However,
range of languages and dialects that are represented
existing standards may not be sufficient. To raise
in many communities. For languages other than
the bar further, the Joint Commission, with funding
those primarily spoken in the community, many
from the California Endowment, is currently study-
health care organizations rely on interpreter
ing the extent to which hospitals are providing cul-
telephone services, often called “language lines.”
turally and linguistically competent care. Hospitals,
As with in-person interpretation, the skills and
Language and Culture is a three-year project to
training of the phone interpreters deserves careful
gather data from a sample of hospitals to assess
scrutiny. Staff should also be trained on whom
the challenges they face, and their capacity to
and how to call for language line services. Any
address the issues of language and culture that
devices needed to facilitate telephonic interpreta-
impact the quality and safety of care they provide.
tion, such as hands-free headsets and dual hand-set
The information gained from this study will be
telephones, should be readily available.
used to set realistic expectations for culturally
competent care in the future.
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Preliminary results from the study reveal that while
be too difficult. Creating an environment that wel-
health professionals truly wish to do right by all of
comes all individuals for the provision of safe, high-
their patients, there is a general lack of awareness
quality care is every health care leader’s obligation.
of the CLAS standards as well as the relevant Joint
Commission standards.56 Therefore, compliance
Proposed additions to Joint Commission standards
with either standard set is inconsistent.57 Despite
would require the leadership of an accredited
recent regulatory efforts, there is also a lack of
organization to maintain a culture of quality and
awareness of the pitfalls of using family members,
safety. For accredited hospitals, the leaders would
even children, as interpreters instead of trained
be expected to assess the hospital’s safety and
interpreters.58
quality culture using a valid and reliable evaluation
tool, such as the survey instrument developed by
According to the Health Research and Educational
the Agency for Healthcare Research and Quality
Trust, 52 percent of hospitals report that they collect
(AHRQ).61 Introduced in 2006, the AHRQ Hospital
information on patients’ primary language to
Survey on Patient Safety Culture will allow hospitals
include in their medical records.59 Only 20 percent
to compare their patient safety culture survey
collect information about patients’ literacy levels.60
results with those of other hospitals, and to identify
To raise these rates and to improve care for patients
areas for improvement.62 New Joint Commission
across the continuum of care, The Joint Commission
standards further require leaders to define how
has implemented a new requirement that accredited
members of the population served can participate
organizations document the patient’s language and
in the management of safety and quality issues
communication needs in the medical record. This
within the hospital. Among the key systems
requirement emphasizes that language and commu-
critical to safety and quality for which leaders
nication needs are a vital piece of demographic as
must provide stewardship is communications.
well as clinical information.
In a recent study of hospital executives’ awareness
Patient-Centered Places
levels respecting health literacy, 65 percent said
they were aware of the link between low health
“Mother states she went to MCMC [Merced
literacy and medical error; however, only 25 percent
Community Medical Center] as scheduled for
rated the issue as a priority that needed to be
blood test, but without interpreter was unable
addressed in their organizations.63 Given the
to explain reason for being there and could not
prevalence of literacy issues, this gap between
locate the lab. Is willing to have another appt.
perception and what is the more likely reality will
rescheduled….Mother states she feels intimidated
need to be narrowed.
by MCMC complex but is willing to continue treat-
ment there.” This notation in Lia Lee’s county
Several initiatives are underway to determine
health department record unwittingly describes
best practices in patient-centered communications.
what so many who have limited literacy or English
These are defined as communication that is
proficiency experience. Entering a hospital can be
respectful of and responsive to a health care
like entering another world. Interpreting naviga-
user’s needs, beliefs, values and preferences.64
tional signs – even getting past the front desk – can
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The American Medical Association’s (AMA) Ethical
and outpatient settings, as well as support services,
Forces Program has developed criteria for health
such as transportation, and home health and call
care organizations to use in assessing their perform-
centers. In addition to addressing health literacy
ance related to patient-centered communications.
issues in care delivery, the collaborative piloted
Among the areas addressed by this Patient-Centered
improvements in navigational aids.
Communication Framework are organizational com-
mitment – the extent to which leadership, staff and
The IHS project also recreated informed consent
resources are committed to the mission of patient-
forms by adjusting reading levels from collegiate to
centered communications; community outreach
sixth- and seventh-grade levels, and promoted the
efforts; workforce composition and training; the
Partnership for Clear Health Communication’s Ask
engagement of patients, with particular attention to
Me 3 campaign across health delivery settings.67
respect for socio-cultural diversity; provision of lan-
Ask Me 3 – through posters, brochures and buttons
guage assistance services; consideration of health
– encourages patients to ask their health care
literacy and use of clear communication; and
providers these three key questions: What is my
application of quality improvement concepts.65 The
main problem? What do I need to do? Why is it
AMA Ethical Forces Program has also initiated a
important for me to do this?68
hospital recognition project to raise awareness of
innovative approaches to patient-centered commu-
The Health Literacy Collaborative also utilized the
nications and to reward hospitals that are leading
“teach-back” methodology. “Teach back” entails
the way in these efforts.
asking the patient to repeat – or teach back – to
the treating clinician the important health care infor-
One organization recognized by the AMA program
mation that has been communicated in the health
is the Iowa Health System (IHS). The IHS Health
care encounter to assess and ensure the patient’s
Literacy Collaborative was launched in 2003 to
understanding. The AMA makes a tool kit available
improve the quality of care provided to all patients
that educates health care professionals on the
and their families by raising awareness of health lit-
“teach back” method. “Teach back” is also includ-
eracy issues and developing effective strategies for
ed among the National Quality Forum’s Safe
enhancing communications throughout its health
Practices. The AMA tool kit also encourages physi-
system.66 To meet the goals of the collaborative,
cians to speak more slowly with patients and to use
key partnerships were identified that included the
plain language. Whenever possible, physicians
New Readers of Iowa – adult learners who advise
should show models or actual devices, or draw pic-
health system staff on the readability of their mate-
tures. Information should be limited to the two or
rials for people who struggle with reading – as well
three main things that patients need to know per
as patients and families, medical and pharmacy
visit, and be repeated during the visit. Patients
societies, and the department of public health.
should always be made to feel comfortable asking
The scope of the collaborative included inpatient
questions in a “shame-free” environment.69
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The Collaborative’s tactics heavily emphasize staff
and engaging of the patient, and received higher
education and training. Among the lessons learned
patient satisfaction ratings than physicians in
is that “administrative leadership is key,” and
race-discordant medical encounters.74
engagement of patients and families is fundamental
to successful strategies.70 The Collaborative also
The 2002 IOM report, Unequal Treatment, made
found that individuals who struggle with literacy
clear that distinct disparities exist both with respect
are often patients, but they may also be health
to access to care and to the quality of health care
system staff.71
for racial and ethnic minorities, regardless of their
insurance status or ability to pay.75 The study of
Inside and Out
race-concordant medical encounters underscores
the importance of increasing diversity among health
Health care organizations should know the commu-
professionals, as called for by the IOM. However,
nities they serve – not simply the primary ethnic
it also highlights the central role that effective
groups and languages that are represented, but the
communications can have on engendering trust
general literacy level of the community as well.
and building relationships among patients and
An interactive tool for determining state, county,
physicians of different races.76
town, and even subdivision literacy levels is avail-
able at www.casas.org/lit/litcode/search.cfm. While
The focus on the quality of communications
this tool currently relies on 1990 U.S. Census data,
and racial and ethnic status becomes even more
plans are underway to update the tool once the
important in light of the prevalence of health
requested microdata from the 2003 National
literacy issues among specific groups. Those with
Assessment of Adult Literacy are available.
literacy issues come from all walks of life; however,
educational level, nativity, socio-economic status,
In the 2001 Commonwealth Fund Health Care
and elderly age are all potential indices of low
Quality Survey, substantially higher rates of blacks,
health literacy.
Hispanics and Asians reported having “communica-
tion problems with their physicians” than did white
patients. Further, twice as many blacks as whites
(16% vs. 9%) reported being treated with disrespect
during a health care visit.72 Not surprisingly, race
concordance between patients and their physicians
has a positive effect on communications and
patients’ perceptions of the quality of their care.73
In a recent study, physicians in race-concordant
encounters spent more time – 2.2 minutes – with
their patients, were rated as “more participatory”
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Solutions to Make Effective Communications An
Organizational Priority to Protect the Safety of Patients:
Tactics
Accountability
• Raise awareness throughout the organization of the
Administrative and Clinical Leaders, Patient
impact of health literacy and English proficiency on
Safety Directors
patient safety.
• Train all staff in the organization to recognize and
Administrative Leaders, Patient Safety Officers,
respond appropriately to patients with literacy and
Social Services, In-Service Educators
language needs.
• Create patient-centered environments that stress the
Administrative Leaders, Department Heads,
use of clear communications in all interactions –
Social Services
from the reception desk to discharge planning –
with patients.
• Modify strategies for compliance with The Joint
Administrative and Clinical Leaders, Patient
Commission’s National Patient Safety Goals to
Safety Officers
accommodate patients with special literacy and lan-
guage needs.
• Use well-trained medical interpreters for patients
Administrative Leaders, Department Heads,
with low English proficiency.
Social Services
• Provide reimbursement to cover health care organi-
CMS, State Medicaid Agencies, Private Payers
zation costs for providing trained interpreters.
• Create organization cultures of safety and quality that
Administrative and Clinical Leaders
value patient-centered communications as an integral
component of delivering patient-centered care.
• Assess the organization’s patient safety culture using
Administrative and Clinical Leaders
a valid and reliable assessment tool, such as the
AHRQ Hospital Survey on Patient Safety Culture.
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Tactics
Accountability
• Assess the organization’s stewardship and accultura-
Administrative and Clinical Leaders, Patient
tion of patient-centered communications, such as
Safety Officer
through the AMA’s Patient-Centered Communication
Framework.
• Become knowledgeable about the literacy levels
Administrative and Clinical Leaders, Clinical
and language needs represented by the community
Staff, Social Services, Patient Advocates
served.
• Make cultural competence a priority, as demonstrat-
Administrative and Clinical Leaders
ed by hiring practices that value diversity and the
continuing education of the staff.
• Pursue a research agenda to expand understanding
Foundations, Health Care Researchers
of the impact that communication issues have on
patient safety, disparities in health care, and access
to care.
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II. Incorporate Strategies to Address
Patients’ Communication Needs Across
The Continuum of Care
The Yellow Baby
see Jose and that since she had an appointment in
Jose Cruz, the son of an immigrant mother, was
a few days anyway, she should bring him back
born in this country. At discharge from the hospi-
then. Feeling helpless, Mrs. Cruz brought Jose
tal, minimal jaundice was observed by the medical
home where she applied a native remedy – a
team and his mother was told to seek follow-up
“healing band-aid” – to his abdomen and tried to
care at a local community health center. When he
feed him rice water. When Jose’s cry became very
was ten-days old, his mother dutifully sought such
quiet, Mrs. Cruz returned to the clinic with him.
medical attention for Jose. At that visit, it was
This time, she told the receptionist that she thought
decided that Jose would need a lab test to deter-
Jose was dying. This time, the receptionist let her
mine whether blood incompatibility was the source
through. Only it was too late.
of his jaundice. Because Jose was an American
citizen, he was eligible for the Medicaid insurance
This sad tale of a mother and her infant son, para-
for which his mother was ineligible. But that
phrased from the story written by Fitzhugh Mullan
would take time and patience to acquire, time that
in Health Affairs, is fiction. But could it be true?
neither Jose nor Mrs. Cruz had. The doctor there-
Has it been true in some ways in some places in
fore decided to allow the clinic to cover the cost of
this country? The story illustrates the threat that a
the lab test. The test showed elevated but not dan-
bureaucratic, insensitive system poses for patient
gerous bilirubin levels. Mrs. Cruz was scheduled to
safety, especially for those who cannot forcefully
bring Jose back to see the doctor in one week, but
advocate for themselves.
was told to bring the baby back at once if his color
should become more yellow and he was not feed-
Step One in the Continuum: Entry
ing well. Five days later, Jose presented “basically
D.O.A.” at the clinic’s door.
The Welcoming
For people with low literacy skills, navigating the
The doctor’s first thought was that Mrs. Cruz had
health system is a nightmare. Deciphering hospital
ignored his instructions to monitor the baby. But
signage – “cardiac catheterization laboratory and
she had not. Worried that Jose was becoming sick-
outpatient radiology this way;” completing complex
er, she had brought him back to the clinic just as
forms; interacting with physicians; following med-
the doctor had instructed. The clinic, always busy,
ication instructions; and coping with real or per-
was especially busy that day. When she expressed
ceived slights from hospital personnel place high
her concerns about the baby to the clinic recep-
demands on those with low literacy skills.77 For
tionist – through the interpretation services provid-
some, these demands are too high and they simply
ed by another mother in the waiting room – the
avoid health care, to the detriment of their health.
receptionist said that the doctor was too busy to
One woman put it this way: “I’ve had a lot of
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illnesses, but I preferred to stay home, until I get
tionists and admissions clerks, at the point of entry
better by taking anything I can. Because being
– can be overwhelming for anyone, but especially
asked to fill this out, to fill that out, I feel embar-
for those who are vulnerable.
rassed to ask for help, to ask them to fill them out
for me. They might get upset or they would say,
A major barrier to entry into the health system is
‘This lazy lady, she never learned to read,’ that’s
obviously lack of insurance. People with low
how I think.”78
health literacy, who are also more likely to have
low income, are at greatest risk of being
For others, it is not a matter of choosing not to go;
uninsured.82 Those who may be eligible for
it is a matter of not understanding when to go. The
Medicaid, or whose children may be eligible under
very first step in the continuum of health care is rec-
the State Children’s Health Insurance Program
ognizing the need to seek care or to pursue preven-
(SCHIP), may not pursue benefits because the task
tive health strategies. Recognizing potential symp-
of applying is too onerous.83 In one study, 100
toms and knowing when to go to the doctor are
percent of enrollees with low literacy levels did not
more challenging for those with low health literacy,
understand the rights and responsibilities section of
who are also known to experience poorer health
the Medicaid application, compared to 93.7 percent
outcomes.79 People with low health literacy may
with marginal health literacy, and 17.3 percent with
delay seeking care, and suffer prolonged symptoms.
adequate health literacy.84 Typical public benefit
In one study, men who presented for care with
forms, like other health-related materials, are writ-
late-stage prostate cancer were found to have
ten at the 10th grade level of understanding and
lower reading levels than those who presented
above.85 Application forms are usually several
with early-stage cancer.80 The study authors suggest
pages long, have dense copy and are complicated
that disseminating culturally sensitive educational
– more than intimidating enough to turn potential
materials that reflect literacy levels in the community
applicants away or confuse them.
served can raise awareness of prostate cancer and
promote early identification of symptoms.81
To help state governments improve the approacha-
bility and readability of their program materials,
Once the need for care is recognized, the barriers
the Robert Wood Johnson Foundation funded the
to entry into the health system – whether getting
development of the Health Literacy Style Manual.86
the requisite clearance from a private or public
This style manual provides guidance on how
payer, or dealing with gatekeepers, such as recep-
to turn an application for benefits into a “visual
Deciphering hospital signage – “cardiac catheterization laboratory and outpatient
radiology this way;” completing complex forms; interacting with physicians; following
medication instructions; and coping with real or perceived slights from hospital
personnel place high demands on those with low literacy skills.
27
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invitation,” among other tips for improving commu-
populations.91 The concept of “patient-centered
nications with the intended audience.87 The goal of
communications” is applicable as well to communi-
the manual is to improve state program communi-
cations meant for broad audiences of potential
cations by using “client-centered communications”
patients. Putting information – conveyed in plain
that will elevate the health literacy of the insured
language – in the context of peoples’ lives, so
population.88 In turn, improved health literacy will
that they can identify with and apply it, is equally
result in better use of benefits, better outcomes,
important in a television or radio broadcast as it
and reduced costs. For instance, beneficiaries may
is in a one-to-one exchange.
take more advantage of well-baby care before
delivery; take children in for check-ups; and use
In research undertaken at the University of
emergency departments much less often.89
Michigan’s Center for Health Communication
Research, researchers tested the effectiveness of
The Public Good
public health messages meant to change behavior.
The messages that were most effective were those
Health literacy is a factor in engaging patients in
that framed health advice in a personal context for
preventive care as well. In fact, improving health
the audience. Where public health campaigns typi-
literacy is a goal set by Healthy People 2010, the
cally target an audience, say African-Americans, the
federal government’s public health report that lays
University of Michigan work revealed that tailoring,
out the nation’s health objectives for the first
not targeting, is the more effective strategy. For
decade of the 21st century. Key to achieving
instance, many African-Americans have little in
this goal – as well as improving the overall health
common – as in the span of difference between
status of the American public – are effective
Condoleeza Rice and Snoop Dogg, for instance.92
communications and the coordination of such
An elderly man may not respond to an admonition
communications, resource allocations and tactics
to stop smoking because he may die from it, but he
among public health officials, individual practition-
may respond to a plea to stop when it is linked to
ers, and health care organizations.
something else in his life he highly values, such as
being at his grandson’s wedding.
According to the Healthy People 2010 report, for
health communications to be effective, they must
To decipher individual differences, participants
be “audience-centered” – that is, the communica-
were invited to engage in an interactive, Web-based
tion activities must reflect audiences’ preferred for-
program that elicited personal health and lifestyle
mats, media and contexts.90 This is especially
information. This information was then used to
important in reaching diverse racial and ethnic
Putting information – conveyed in plain language – in the context of peoples’
lives, so that they can identify with and apply it, is equally important in a television
or radio broadcast as it is in a one-to-one exchange.
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tailor health messages that were responsive to the
Step Two in the Continuum:
particular needs of each user. This work has result-
The Health Care Encounter
ed in the development of tailored interactive com-
munications programs that are accessible through
Suffering Silently
publicly placed computer kiosks in support of
Why would a 64 year-old man who was clearly
public health outreach campaigns, such as one for
interested in getting and being well – thus his
asthma, and others that are tailored to health care,
repeat appearances at the community clinic – not
employer, pharmaceutical, and government settings.
take his diabetes and heart medications for weeks
on end?95 His medication regimen and the dire
Locating the Lab
need for it were clearly spelled out for him again
Once the need for care is recognized, getting
and again. He had his wits about him, he was
through the front door – and down the corridor –
insured, and he was able to obtain his medications
should not be an intimidating experience. Front
at reduced cost. None of the obvious reasons for
desk staff should receive training to ensure that
his “history of non-compliance” were evident.
they understand how to respond if someone does
During his third visit, a medical student, who had
not speak English well or appears to have “left
been caring for him together with the attending
their reading glasses” behind and needs assistance
physician, was the first to catch on. The answer
in reading an appointment slip. All staff in the
came after a glimpse at the man’s glucose log. It
organization should receive appropriate training
was a nonsensical mess. The man was illiterate,
in how to recognize and respond to people who
having left school in the second grade, and was
have a language barrier, or are unable to read or
unable to read his pill bottles and name his med-
decipher signage.
ications. Despite the fact that he had seen many
physicians, nurses and social workers over the
Wayfinding – the visual and contextual clues to aid
years, none had solved the puzzle of his apparent
a person’s navigation through the organization –
“non-compliance.”96
should be able to accommodate the directional
needs of everyone – from staff to the non-English
Neither this man nor Mitch Winston, whose story
speaking patient. Universal symbols, such as those
was shared at the beginning of this paper, told the
used in airports across the globe for wheel chair
health care professionals treating them that they
accommodations, bathrooms and taxis, may have
could not read. Individuals who do not read or do
a place in hospitals as well. The Universal Health
not read well also do not announce this limitation.
Care Symbols initiative lead by Hablamos Juntos,
Many who have low literacy skills mask what they
a Robert Wood Johnson Foundation funded project
feel are their inadequacies. For them, there is too
to improve patient-provider communications for
much shame in admitting that they do not read
latinos that is based at the University of California-
well, or that they do not understand. Physicians,
San Francisco, has developed and tested a set of
nurses and other health professionals may never
symbols for potential use in hospital signage.93
know that among the patients they have seen for
Twenty-eight symbols covering major clinical
years, some have suffered silently, grasping far less
departments and services have been developed and
than would have been expected.
are in the public domain and available for use.94
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A major clue to these patients’ underlying literacy
low glucose levels were discovered just prior to
problems is their inability to adhere to medication
surgery during the “teach back” process when he
regimens. Low literacy is in fact associated with
was found to be too impaired to “teach back.”103
greater rate of poor medication adherence.97 In
turn, poor adherence to medication regimens
Some advocate that patients’ literacy levels be
results in substantial worsening of disease, death,
assessed at the beginning of the care encounter,
and increased health care costs.98
and there are new methods for briefly assessing
patients in a less obtrusive fashion than having
Universal Precautions
them fill out a survey. The Newest Vital Sign is a
method that asks patients to answer six questions
Since a patient’s health literacy skills are not typical-
about a nutrition label.104 One physician, who is
ly evident during a health care encounter, health
also a noted health literacy expert, carries a pill bot-
care professionals need to err on the side of
tle in her pocket and asks new patients to briefly
caution in making clear communications and plain
read the label and instructions.105 Yet, assessing
language standard practice in all patient encounters.
patient literacy levels in care encounters remains
Such an approach benefits everyone. It may also
controversial. For those who do not read well, tak-
be necessary to probe for understanding. Utilizing
ing any sort of reading test in the doctor’s office is
the “teach back” methodology described in an
demeaning and recalls the negative experiences
earlier section of this paper and encouraging
associated with test-taking in school.106
patients to ask questions are typical effective ways
in which to assess understanding.
Educating the Educated
Many have reported concern about the time burden
Many clinicians may be “blind” to the issue of
of utilizing the “teach back” approach. However,
health literacy.107 Despite the ubiquity of literacy
anecdotal reports indicate that “teach back” takes
and language issues in this country, many clinicians
about one minute to complete, particularly where
seem to feel – like the hospital executives in the
the care provider has become proficient in the
previously cited study – that this is not a problem
practice and has fine-tuned her/his technique.99
that affects their practice. However, there is grow-
Given the patient safety implications of flawed
ing acknowledgement that ineffective communica-
communications, this is a minute well spent. Using
tion – such as rushed conversations, reliance on
“teach back,” a patient’s use of the drug Coumadin
jargon, language discordance, purposeful ambiguity,
was discovered just before the patient was about to
and cultural insensitivity – are contributing to
undergo anesthesia with an agent that was incom-
unsafe, poor quality care and the uncaring manage-
patible with Coumadin, thus avoiding a potentially
ment of too many patients.
fatal interaction.100 “Teach back” was used to
ensure that a Spanish-speaking woman understood
Since the 1950s, tension has existed in medical edu-
that the tubal ligation she was about to undergo
cation between the teaching of science-based clini-
was a permanent sterilization technique, which she
cal skills and the development of communication
heretofore, had not understood.101 She promptly
skills – the goal of which has historically been to
left the hospital.102 A diabetic patient’s dangerously
develop the young physician’s competence in
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exhibiting compassion.108 Through the decades,
that was evident in medical education in the 1950s,
some medical educators have decried the giving
and through subsequent decades, persists.
over of precious time in the curriculum to the
teaching of humanities that could better be used
In a recent survey conducted by the American
for increasing student knowledge of rapid advances
Medical Students Association, one-quarter of med-
in medical science.109
ical student respondents said that they had not
received any education on health disparities, and
If there has been an ebb and flow in the prioritiza-
more than one-third were not required to study
tion of physician communication skills over time,
medical ethics.114
the tide is definitely in today. Through rigorous
study, strong physician communication skills have
Indeed, concern over the growing gap between
been linked to higher physician and patient satisfac-
contemporary patient needs, and the ability of
tion, greater adherence to medical regimens,
health professional schools to prepare the health
improved patient psychological outlook regarding
care workforce to meet those needs led to the
disease control, and enhanced physical and mental
release of another important IOM report, Health
health status.110 Acknowledging the importance of
Professions Education: A Bridge to Quality – the
effective communication in the delivery of care, the
third report in its Quality Chasm series addressing
United States Medical Licensing Examination
health care quality and safety. In this report,
(USMLE) now requires medical students, between
the IOM called for the incorporation of five core
the third and fourth year of school, to take a clinical
competencies into the education of all health
skills examination using standardized patients. The
professionals. The IOM’s vision is that “all health
objective of the exam is to determine the ability of
professionals should be educated to deliver 1)
the student to gather information from patients, per-
patient-centered care 2) as members of an interdis-
form a physical exam, and communicate their find-
ciplinary team, 3) emphasizing evidence-based
ing to patients and colleagues.111 Communication
practice, 4) quality improvement approaches, and
skills are also an expected competency of medical
5) informatics.”115
residents under the standards of the Accreditation
Council for Graduate Medical Education (ACGME)
Patient-centered communication is the linchpin
and a key component of the Maintenance of
of patient-centered care. Care cannot be patient-
Certification model developed by the American
centered if it does not effectively involve the
Board of Medical Specialties (ABMS).112
patient. Patient-centered communication engages
the patient and fosters understanding by portraying
Professional and regulatory standards reinforce the
medical information within the context of the
prioritization of communication skills, though they
patient’s life – no matter what that context is. Such
alone do not define and foster the elements that
communication skills need to be incorporated into
comprise effective communication. Today, the
all health professional education and
extent to which communication skills are taught –
training. Conversely, communication that is not
and how those skills are assessed – is highly
patient-centered serves to exacerbate low health
variable across U.S. medical schools.113 The tension
literacy and health care disparities. Development
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of patient-centered communication skills, including
givers. Plain language and terms in common usage
the address of the needs of patients with low health
should be used in place of or to explain medical
literacy and low English proficiency, needs to be
terminology, e.g. using “high blood pressure”
woven into health profession school curricula to a
instead of “hypertension;” “fever” instead of
far greater extent than is true today.
“febrile;” “by mouth” instead of “orally.”
Jargon-less
Some terminology may even cause misperceptions
of illness. The term “congestive heart failure,”
Mrs. Walker – a well composed, articulate woman
commonly called “CHF” by practitioners, may
who reads at the third-grade level – described the
sound to a patient that death is imminent, though
dilemma of patients straining to understand the
it is in fact not a disease but rather a description
lingo of physicians this way: “Can you imagine
of clinical syndromes that can be controlled over
what it’s like being sick, and you know that you
decades.116 One study suggests that CHF would
have limited skills, okay, and you’re talking to
best be described to the patient as a common
an intelligent doctor… And these people are
chronic condition, and a better term might be
using words that you really don’t know because
“stiff muscle syndrome” or “fluid retention.”117
they’re not speaking in layman’s terms, okay?
Most doctors are just presuming that everybody’s
Each medical discipline has its own jargon that
as intelligent as they are. And that is just not the
must be translated for patients. One study of
case. So . . . you come out of that room, that
health literacy in relation to colorectal cancer
examination room with this intelligent man or
screening found that many participants with
woman thinking: God, I hope I don’t make a
low health literacy did not know the meaning of
mistake with my medicine, because I did not
commonly used terms, such as “polyp,” “tumor,”
understand anything he or she said to me.”
“lesion,” or “blood in the stool.”118 None of the
participants knew what the colon or bowel was
Mrs. Walker was interviewed for the video, “Health
nor where it was located.119
Literacy: Help Your Patients Understand,” that is
available from the American Medical Association
As Mrs. Walker suggests, health care practitioners
Foundation. Another patient on the video, when
should speak in layman’s terms whenever possible.
asked by his doctor if he understands what she
After all, the goal of using language is to be
means when she says he has “hypertension,”
understood.120
answers that she means he is “hyper…when you
can’t be still.” This patient had been under treat-
ment for his hypertension for years.
Educational Exchange
The “tyranny of time” – that is reflected by the
The scientific language of medicine – the lingua
15-minute office visit which governs most physi-
franca of physicians – is often a barrier to patient
cian/patient encounters – makes probing for
understanding since patients typically have a far
understanding and investing in patient education
less expansive health vocabulary than their care-
far from standard practice in the office or clinic
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today. Time pressures leave even the most highly
taking medications by acknowledging to the patient
literate searching the Internet for answers to
the difficulty of taking medications regularly and
questions that they did not have time to ask – or
asking if he or she ever misses taking them.127 The
have answered – within their own 15-minute
physician should also ask whether the patient is
allotment of clinician time.
experiencing any side effects, if he or she knows
why medication was prescribed, and what the ben-
Several studies have demonstrated the positive
efits of the medication are.128 Interventions that
effects that applying a disease management
include pharmacists, nurses and behavioral special-
approach to patients with chronic conditions and
ists can also improve patient adherence.129 Patients
low health literacy can have. In one study, low
should be provided simple, clear instructions and
literacy patients with diabetes who received
the medication regimen should be made as simple
individualized communication and education, as
as possible.130
well as intensive disease management interventions
from a multidisciplinary team, were more likely to
Uninformed Consent
achieve targeted glucose levels.121
When Toni Cordell – a well-spoken working
woman and mother – consented to her hysterecto-
Better patient education and understanding can
my, everything went well. Toni had a good
also lead to better outcomes, and a better bottom
outcome from her surgery. The only problem was
line. In the University of Virginia Health System,
that Toni did not know she was having a hysterec-
eight percent of operating room cancellations
tomy until after it had occurred. And, she did not
were traced to poor patient comprehension of
learn she had a hysterectomy from her doctor.
instructions.122 Idle operating time results in lost
Several weeks after her surgery, at her post-op
revenue.123 Now, with nurses using “teach back”
check-up, a passing remark from the office nurse
and placing calls to patients the evening before
tipped her off. At the time, Toni did not read well,
surgery, the cancellation rate has dropped ten-
and was unable to read the informed consent form
fold.124 In addition, the health system uses “teach
she signed. The only verbal explanation given to
back” in its informed consent process, and was
her by her doctor was that he was going to “give
among the first to have a health literacy curriculum
her an easy repair.” Repair, indeed. Luckily for
for physicians in training.125 For these reasons, the
Toni, her child-bearing days were behind her, but
University of Virginia Health System has also been
the experience left her feeling poorly about herself
recognized by the AMA’s Ethical Forces program
and the medical system whose care she had sought
for its patient-centered communication initiatives.
when she was most vulnerable. Since then, Toni
has become an adult learner and literacy advocate
The common problem of medication adherence
who regularly speaks to health care professional
can also be mitigated through more rigorous patient
groups, including medical students, about the
education, and improving communication between
perceptions and needs of those with low literacy
the patient and the physician is known to be an
skills. Toni often chides physicians and other
effective strategy.126 The physician can elicit the
health professionals to remember that “what is
patient’s level of adherence and concerns about
clear to you is clear to you.”
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Informed consent forms that are written by lawyers
developed a Readability Toolkit to help research
for lawyers do not increase the knowledge of those
teams improve the quality of study materials. The
who, with their signature, are committing to allow
Toolkit describes strategies for improving readabili-
the performance of treatments and procedures that
ty, including information on how to lower the read-
may be associated with significant risks. The typi-
ing level necessary to understand the study text,
cal informed consent form is unreadable for any
offers alternative suggestions for words commonly
level of reader. Researchers have found that
used by researchers, and provides template lan-
among patients who sign an informed consent
guage that can be adopted for consent forms.
form, 44 percent do not know the exact nature of
the operation to be performed, and most – 60 to 70
Decisions, Decisions
percent – did not read or did not understand the
Communicating risk is often as challenging for the
information contained in the form.131
clinician as understanding risk is for the patient.
Physicians receive little training in communicating
In order to promote change in the way informed
risk, and, in fact, little is known about the best way
consent is sought, the National Quality Forum
to do so.133 The low level of numeracy among
(NQF) has developed a guide to help organizations
patients is an obstacle to comprehending risk that
comply with its Safe Practice 10 – one of 28 Safe
is conveyed in quantitative terms.134 The type of
Practices endorsed by the NQF – which calls for
information preferred – verbally or numerically
organizations to ensure that patients or legal surro-
described – and how people understand it, is
gates understand proposed treatments and their
affected by several factors, including the severity
complications. According to the NQF, a safe
of the illness, its potential complications, and
informed consent process includes asking patients
patient characteristics such as age, educational
or surrogates to recount what has been told to
level, health status, and recent illness experiences.135
them during the informed consent discussion; using
Therefore, great flexibility is required in matching
forms written in simple sentences and in the pri-
information about treatments or care to the needs
mary language of the patient; engaging the patient
of individual patients.136
in a dialogue about the nature and scope of the
procedure covered by the consent form; providing
Coming to health care decisions that reflect
readers or interpreters to assist patients with low
each patient’s preferences and values requires
English proficiency, low literacy, or visual or hear-
“shared decision-making” – the process by which
ing impairments; and conveying the potentially
patients are actively involved with their health
greater risk associated with low-volume providers
care providers in reaching health care decisions.137
of high-risk surgeries and procedures.132
In the absence of shared decision-making,
“interventions are provided to people who
For those considering participants in health care
would not choose them and withheld from those
research studies, study materials should be easy to
who would.”138
read and understand. The Group Health Center
for Health Studies in Seattle, Washington has
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Shared decision-making is a critical element of
re-engineering of care processes.144 Further, since
patient-centered care. Patient-centered care, as
use of patient decision aids has been shown to
called for by the IOM in its Crossing the Quality
result in decreased reliance on medical interven-
Chasm report, includes customization based on
tions, there may be economic consequences for
patient needs and values, specifications of the
practitioners and providers that should be
patient as the source of control, shared knowledge
addressed, such as through reimbursement for
and the free flow of information, and evidence-
educational counseling services145 and medical
based decision-making.139
malpractice insurance premium discounts.
In order to be partners in making critical decisions
It is also important to determine what decision sup-
regarding their health, patients must be well-
port aids and risk communication approaches work
informed. To impart the requisite knowledge, a
best in achieving effective patient communications.
series of patient decision aids – most commonly
A new initiative of the University of Texas MD
educational software and multi-media programs –
Anderson Cancer Center and Baylor College of
have been developed. These have primarily been
Medicine, funded by the Agency for Healthcare
focused on common surgical interventions.140
Research and Quality’s Centers for Education and
Testing through clinical trials has found that a
Research on Therapeutics (CERTs), is assessing
number of decision aids improve the ability of
effective risk communications strategies.146
patients to make informed decisions; however,
Related projects include the development of
these decision aids have largely addressed a limited
health decision aids for low literacy populations,
number of procedure-based medical interventions.141
as well as computerized health decision aids.147
The application of patient decision aids to the care
decisions of the chronically ill remains untested.142
Serve and Protect
Patients should be encouraged and educated during
Technology-based patient decision aids have not
the health care counter to participate in decision-
yet been developed specifically for use by patients
making, and also to take steps to protect their own
with limited literacy.143 Development of such deci-
safety. This begins with encouraging their partici-
sion aids should proceed in partnership with the
pation in the care delivery process. The more
adult education community, as well as with input
involved a patient is in their care, the less likely an
from adult learners to help ensure the applicability
error will occur. However, such involvement may
of these tools for narrowing the information gap for
be challenging for patients with low health literacy
these patients.
or low English proficiency, since they often cope
by being passive or appearing to be uninterested.148
There are challenges as well to the widespread
Cultural norms also affect how people react during
adoption of decision aids by health care practition-
the care process. Indeed, some may choose not to
ers. Incorporating their use in the care cycle may
be active participants, and these differences need to
disrupt the current work flow of physicians and
be honored.
health care organizations and, therefore, require
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The Joint Commission encourages organizations to
5. Bridge the gap between patients and providers.
engage patients in their role as safety advocates
Train patient representatives (such as ombuds-
through the following five steps:149
men, social workers, or other patient advocates)
on patient safety issues and publicize their avail-
1. Communicate with patients about safety. Let
ability to patients and the community. Create a
patients know that mistakes can and do happen,
patient and family advisory council.
but that they can help prevent them. Encourage
them to ask questions. Be sensitive to cultural
The public at-large is generally well aware of safety
beliefs and practices to avoid misunderstandings.
issues in health care. According to a July 2004 Wall
Street Journal/Harris Poll, 63 percent of Americans
2. Actively involve the patient in safety procedures.
are “extremely concerned” or “very concerned”
Urge patients to become active and informed
about hospital-based medication errors, and 55 per-
participants on the health care team. Ask
cent are concerned about hospital-based surgical
patients to remind staff to identify themselves or
errors. There is probably much less awareness
to wash their hands. Accredited organizations
of the role that patients themselves can play in
are required to involve patients in marking the
preventing adverse events. Several years ago,
sites for invasive procedures.
The Joint Commission launched a campaign to
encourage patients to “speak-up” to their care
3. Give patients safety tools. Provide wallet cards
providers – to ask care-related questions and to
to list medications, allergies, chronic conditions,
be well-informed about their care. The Speak Up™
provider contact information, and so forth. Give
campaign provides patients with information and
patients information on common side effects of
specific questions, in easy-to-read language, that
medications and procedures and when it is
they should ask their caregivers under various
important to call a physician or pharmacist.
circumstances. These include receiving medica-
tions, undergoing surgery, and being discharged
4. Be accountable to patients. Make a commitment
from the hospital, among others. Similar patient
to be transparent with patients about outcomes,
safety tools for patients are available from AHRQ,
whether good or bad. Approach errors with an
the National Patient Safety Foundation, the
intent of full, open disclosure. Invite patients to
Partnership for Patient Safety, PULSE, and others.
approach staff with safety concerns and foster a
culture of safety in the organization that will per-
mit staff to accept this feedback as an opportuni-
ty to learn and improve. Include patients or
consumers in the conduct of root cause analyses
of sentinel events.
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Step Three in the Continuum:Transition
of information is shared.153 Hand-offs between
settings should also be smoothed to prevent
The Bermuda Triangle
problems.154 On discharge, the patient should
Forgotten Do Not Resuscitate (DNR) orders, lost
be provided with information about his or her
lab results, misinterpreted treatment orders, wrong
medications, diagnoses, results of procedures and
patient information – the list of potential “fumbles”
laboratory tests,155 and plans for follow-up care.
in patient hand-offs, or care transitions, goes on
A follow-up call to the patient by a doctor, nurse or
and on – earning the dubbing of “the Bermuda
pharmacist has been shown to effectively prevent
triangle” of health care delivery.150 In the course of
post-discharge medical errors from occurring.156, 157
a hospital stay, a patient’s care is frequently “hand-
ed-off” from one caregiver to the next during shift
Reconcilable Differences
changes, for the performance of invasive or other
A 68-year-old man with a history of diabetes and
procedures, or when the patient is transferred from
atrial fibrillation maintained on warfarin presented
on unit to another. Patients also transition to differ-
to the emergency department (ED) with fever
ent care settings, or are discharged home. All of
and mental status changes. A lumbar puncture was
these scenarios create opportunities for error, that
attempted three times without success, and empiric
relate primarily to communication breakdowns.151
treatment for meningitis was started. Further exami-
As the patient’s care moves from one doctor or
nation revealed an area of cellulitis, and intra-
nurse to the next, across hospital units and to other
venous antibiotic therapy was changed accordingly.
settings of care, the only constant is the patient.
At the time of admission, the patient was unable to
Where care transitions create significant vulnerabili-
recite his medication history, and his wife was
ty to patients, it is vital that patients be educated
unclear about his medications or their doses.158
and empowered to protect their own interests.
This case from the Agency for Healthcare Research
Because of the prevalence of miscommunication
and Quality’s Morbidity and Mortality Rounds on
that puts patients at risk during hand-offs, The Joint
the Web illustrates a common deficit in patients’
Commission has established a requirement among
knowledge about their medications, especially
its National Patient Safety Goals (2E): “Implement a
when they are impaired, and the challenges this
standardized approach to ‘hand-off’ communica-
poses to the delivery of safe health care. Indeed,
tions, including an opportunity to ask and respond
more than half of all medication errors occur during
to questions.” In order to demonstrate compliance
transitions in care, such as, like this patient, at the
with this requirement, The Joint Commission
time of admission.159
encourages practitioners to use clear language so
that key information about a patient cannot be
Medications, once identified and/or newly
misinterpreted, and to utilize communication tech-
prescribed, often do not follow the patient through
niques, such as “repeat-back” and “check-back” to
the care process. In one study, one-third of
ensure common understanding.152 Organizations
patients who were discharged from hospital inten-
should also standardize shift-to-shift and unit-to-unit
sive care units had at least one important outpatient
reporting to ensure that the right and right amount
medication inadvertently discontinued.160
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Preventing such medication errors from occurring
Step Four in the Continuum:
can be accomplished through medication
Self Management
reconciliation – the process of collecting the
best medication history possible, verifying the list,
A Chronic Problem
and comparing it to orders written at admission,
More than 90 million Americans live with chronic
transfer, and discharge.161 Medication reconciliation
illnesses.167 Chronic disease accounts for more than
is especially crucial when patients are unable to
75 percent of the nation’s $1.4 trillion in medical
provide an accurate medication history or when
care costs, and it is estimated that 75 percent
the history is not available to those who must
of people with a chronic physical or mental illness
make treatment decisions.162
have limited health literacy skills.168 Better manage-
ment of chronic conditions and prevention of
To promote medication reconciliation to the status
complications – complications that lead, most
of standard practice, The Joint Commission made
importantly, to poor health outcomes, as well as
it a National Patient Safety Goal (requirements 8A
increased costs – is a top priority for all health care
and 8B). In addition to requiring communication
stakeholders. A key aspect to successful chronic
of a complete and accurate list of medications to
disease management is self management – the
caregivers at each step along the patient’s continu-
ability for patients to understand their conditions
um of care, the Goal requires that the patient be
and be actively involved in their care regimens.
given the list upon discharge or transfer to another
setting.163 In compiling medication information,
Self management – according to the IOM – also
staff members must, to the extent possible, involve
requires that individuals be able to locate health
the patient
information, evaluate that information for credibility
in this process.164 To improve the interviewing
and quality, and analyze risks and benefits.169
process for obtaining medication information from
The chronically ill must also be able to describe
patients, the Joint Commission encourages staff to
their symptoms in ways that can be understood by
prompt patients with open-ended, specific ques-
their caregivers.170 For those with limited literacy
tions about their health as well as their medications
skills, self-management may be too great of a chal-
– for instance, by reviewing with the patient all
lenge to be overcome, especially if such challenges
of their health conditions and asking what he or
are undiscovered or ignored. Unfortunately,
she takes for each of these.165 Patients should also
because patient safety taxonomies and databases
be prompted to share information about use of
do not currently address preventable adverse events
over-the-counter drugs, herbal remedies and dietary
that happen to patients when under their own care,
supplements.166
the precise relationship between self-management
and patient safety is unknown.
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What is known is that adequate care is being pro-
In light of the prevalence of health literacy issues
vided to all chronically ill patients only about half
among patients with chronic illness, some have
the time.171 This is a problem for which the pursuit
foreseen the need to include within the Wagner
of solutions cuts across the entire continuum of
Chronic Care Model framework, interventions that
health care delivery – the education of practitioners
specifically address the needs of those with limited
and their actual practice, the oversight framework
health literacy.175 One such intervention – an auto-
for practitioners and health care organizations,
mated telephone diabetes management system for
and health care payment policies and practices.
patients with limited health literacy – has been
The model for chronic care delivery developed
implemented at San Francisco General Hospital.176
by Dr. Edward Wagner of the Group Health
A key aspect of the telephone system is that it
Cooperative of Puget Sound seeks to improve care
was designed with the active involvement of
and health outcomes for the chronically ill. The
adult learners and others with limited literacy.177
Wagner Chronic Care Model recognizes that the
If successful chronic care depends on an informed,
chronically ill suffer from the physical, psychologi-
active patient and an equally proactive practice
cal and social demands of their illness, and that
team, as Wagner suggest, then patient-centered
a primary care team, not solely a physician, is
communications – for all patients – is itself an
needed to best meet these varying demands.172
essential element of chronic care management.
The Wagner Chronic Care Model includes six
To support patients’ self management skills, organi-
essential elements: community resources and poli-
zations such as the American Diabetes Association
cies, health care organizations, self-management
and the American Cancer Society have developed
support, delivery system design, decision support,
online tools to help patients to better understand
and clinical information systems.173 When each of
their diseases, make treatment decisions, and partic-
these interdependent elements are optimized
ipate in the management of their health and care.
to best serve the chronically ill, the model
“envisions an informed, active patient interacting
with a prepared, proactive practice team, resulting
in high-quality, satisfying encounters and improved
outcomes.”174
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Solutions to Address Patients’ Communication
Needs Across The Continuum of Care:
Tactics
Accountability
Entry
• Eliminate “barriers to entry” in the care system by
Medical and Public Health Practitioners
educating patients, particularly those with low health
literacy, about when to seek care.
• Develop and provide insurance enrollment forms,
Public and Private Payers, State-based Social
benefit explanations, and other insurance-related
Services
information that is “client-centered,” i.e., written at
a low literacy level in plain language.
• Ensure easy access to health care organization
Administrative Leaders, Facilities Services
services by using clear communications in all
wayfinding materials and signage.
• Design public health interventions and
Public Health Professionals, Payers, Disease
communications that are “audience-centered,”
Management Companies and Advocacy
including messages that are put in the context of
Organizations
the lives of the target population, and in familiar
and preferred formats.
Health Care Encounter
• Apply communications techniques known to
Physicians, Nurses, Pharmacists and Other
enhance understanding among patients:
Health Professionals
-Use plain language always
-Use “teach back” and “show back” techniques
to assess and ensure patient understanding
-Limit information provided to two or three
important points at a time
-Use drawings, models or devices to demonstrate
points
-Encourage patients to ask questions
• Employ a “universal precautions” approach to all
Physicians, Nurses, Pharmacists and Other
patient encounters by using clear communications
Health Professionals
and plain language, and probing for understanding.
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Tactics
Accountability
• Emphasize learning of patient-centered
Health Professional Schools, Training Programs
communication skills in all health professional
and Continuing Education; Oversight Bodies
education and training.
• Adopt disease management practices, such as
Multi-disciplinary Care Teams, Administrative
individualized education and multi-disciplinary team
and Clinical Leadership, Patient Educators,
outreach to patients, which are known to reduce
Payers
the incidence of error and positively affect health
outcomes.
• Redesign the informed consent process to include
Administrative and Clinical Leadership,
forms written in simple sentences and in the
Clinical Staff, Risk Managers, Legal Counsel
language of the patient; use “teach back” during
the informed consent discussion; and engage the
patient in a dialogue about the nature and scope
of the procedure.
• Partner with patients in shared decision-making
Physicians, Nurses, Patient Educators
and provide appropriate education – e.g., through
employing patient decision support aids – to inform
patient decisions.
• Engage patients in their role as safety advocates by
Administrative and Clinical Leadership,
communicating with patients about safety and giving
Physicians, Nurses and Patient Educators
them tools to permit allow for their active involve-
ment in safe practices.
Transition
• Standardize the approach to “hand-off”
Administrative and Clinical Leadership,
communications:
Clinical staff
-Use clear language so that key information cannot
be misinterpreted
-Use “teach back” and “check back” methods
-Standardize shift-to-shift and unit-to-unit reporting
-Smooth transitions to new care settings
-Give patients information about all of their
medications, diagnoses, test results, and plans
for follow-up care.
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Tactics
Accountability
• Reconcile patient medications at each step along the
Multi-disciplinary Care Team, Discharge Planner
continuum of care, and provide each patient with a
“wallet” card that lists all current medications and
dosages, and encourage patients to keep it updated.
Self Management
• Address the special needs of the chronically ill, many
Multidisciplinary Care Team, Administrative
of whom have limited health literacy, so that they
and Clinical Leadership
are better prepared to self-manage their conditions,
such as through modifying and applying the Wagner
Chronic Care Model.
• Provide self-management education to patients that
Multi-Disciplinary Care Team, Patient Educator
is customized to the learning and language needs
of the individual patient.
• Regularly place outreach calls to patients to
Multi-Disciplinary Care Team
ensure understanding of, and adherence to, the
self-management regimen.
• Expand patient safety taxonomies to begin to
Health Care Researchers, Patient Safety Experts
account for and understand patient safety risks
associated with self management.
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III. Pursue Policy Changes That Promote Improved
Practitioner-Patient Communications
Reach Out and Read
educators.182 ROR trains doctors and nurses to
Recall the 64 year-old man described earlier, who
advise parents about the importance of reading
was not taking his diabetes and heart medications,
aloud.183 Through the program, books are given
and his doctors discovered that he could not
to children at their check-up visits from the ages
read?177 With the help of a social worker, he was
of 6 months to five years.184 Children growing
enrolled in an adult reading program which he
up in poverty are especially targeted for an ROR
attends regularly.178 His physician reports that
intervention.185 The mission of ROR is to make
after three years, it is not clear that he dutifully
literacy promotion a standard part of pediatric
takes his medicine as prescribed, but he can
care so that children grow up with books and a
now read his pill labels and he feels better able
love of reading.186 When physicians and nurses
to function in the world.179
stress the importance of reading during a health
care appointment, that importance is not lost on
In the patient care encounter, if subtle probing
the parents.187
reveals that a patient cannot read, the health care
practitioner has the option of encouraging the
Adult education centers effectively elevate reading,
patient’s enrollment in an adult learning program.
writing and math skills, but they can also specifical-
Given the established link between literacy
ly enhance health literacy levels. Incorporation of
and health status,180 such counseling should be
health concepts into lessons directed at improving
considered as health promotion that is at least as
core skills enriches learning and engages students,
important as smoking cessation, eating well and
while providing health information that is relevant
exercising. And adults with low literacy need
to them.188 The National Center for the Study of
more encouragement.
Adult Learning and Literacy (NCSALL) is developing
curricula and materials for teaching health literacy
Of course, these services must also be accessible.
in adult learning programs in three specific areas:
Federal funding for adult education programs has
health system navigation, management of chronic
grown slowly over the years, and presently seven
disease, and screening and early detection.189
states (California, New York, Massachusetts, Illinois,
These are high-priority health care areas for adult
Michigan, Florida and North Carolina) account for
learners, who are also health care’s most vulnerable
80 percent of all state funds available for adult
patient population.190
learning programs.181
As exemplified by the Iowa Health System
But there is precedent for literacy intervention in
Collaborative, literacy advocates as well as adult
the health care encounter. Reach out and Read
learners, can provide valuable counsel to health
(ROR) is a program that originated in 1989 at
care practitioners, providers and systems in the
Boston Medical Center through collaboration
design and delivery of health care services that
between pediatricians and early childhood
are truly patient-centered.191
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Off the Dime
Any physician practice with an American Diabetes
Where more patient intervention and education
Association-recognized certified training program is
may be required, it follows that more attention
eligible for such payments.192 Expanding education
needs to be paid to the incentives to make change
reimbursement policy to cover other chronic condi-
happen. In the face of managed care, capitation,
tions could help to improve the self-management
public payer reimbursement rates, skyrocketing
skills of a broader swath of patients.
malpractice premiums, and a host of other financial
pressures, physicians are now compelled to
Newly implemented pay-for-performance (P4P)
squeeze more patients into their work day, thus
programs could provide a real opportunity to
making the “15-minute office visit” a necessity if
reward physicians for providing patient-centered
not a luxury itself. Within this 15-minute office
communications, outside of their own professional
visit, patients may need to share their health history
satisfaction. If patient-centered communications
and current symptoms, undergo an examination,
were to a basic pillar of P4P programs across the
receive an explanation of potential diagnoses,
public and private sectors, that would provide
review a therapeutic regimen, and plan for next
a major boost to aligning improved health care
steps. Patients with low-literacy skills require more
communications with health care payment policy.
time throughout this process – time to “teach
Measures of performance would need to be
back,” time to repeat key points in the visit, etc.
determined, but these would logically include
This is time well spent as it may help to avoid an
outcomes measures such as frequencies of
error, an adverse event, or an unnecessary hospital-
preventable adverse events and hospitalizations,
ization. However, it is extra time that the physician
as well as patient satisfaction and relevant process
does not have under current payment models.
of care measures.
Both time and money work against patient educa-
One such program has been implemented by Blue
tion. Patient education is almost always an unreim-
Cross/Blue Shield of Florida. As part of its P4P pro-
bursable expense of the doctor’s office. The one
gram, participating physicians are encouraged to
exception is for diabetes education. In 1998,
improve their performance respecting the delivery
CMS expanded its reimbursement policy to cover
of culturally sensitive care. Physicians are given the
programs that educate and train diabetics how to
opportunity to voluntarily participate in an interac-
self-manage and control their blood glucose levels.
tive e-learning course called “Quality Interactions.”
Where more patient intervention and education may be required, it follows that
more attention needs to be paid to the incentives to make change happen.
44
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This course is designed to help physicians identify
decisions and care closer to the patient-centered
cross-cultural issues and perform culturally compe-
ideal advocated by policymakers.”
tent medical exams, identify the impact of culture
on medical decision-making, address language
Health care payers and medical liability insurers
barriers, and effectively explain diagnoses and
should also benefit from the use of patient decision
management options to patients.193 Physician
aids and other interventions that support the
performance related to cultural competence is
evolution of well-informed health care consumers.
then measured through patient satisfaction ratings.
That should be reason enough to provide incen-
tives to providers and practitioners in the form of
Notwithstanding the opportunities to tie increased
expanded reimbursement and premium discounts,
attention to health literacy to payment policy, P4P
respectively, for taking the extra time to educate
initiatives in this areas area will need to be carefully
patients and to use technologies to support these
monitored to assure the avoidance of unintended
efforts where appropriate.
consequences. For instance, if an improvement
objective to reduce average blood glucose levels
Acknowledging the link between physician
of diabetic patients in physician practices were
communication skills and liability claims, medical
established, physicians could be motivated to
liability insurers are investing in communications
drop patients from their practices whom they
skills training and considering premium discounts.
view as “non-adherent” – patients who may be
One such insurer is ProMutual of Massachusetts.
compromised by low health literacy or by cultural
The four-month long communications course
barriers to communication.
offered by ProMutual includes online learning
modules, video-taped simulated patient sessions,
Patient-centered decision-making could also be
small work groups, and questionnaires that address
folded into P4P programs to create incentives for
communication, health care outcomes, risk and
patients to be provided the care they want and
liability.196 The content of the training also includes
need.195 In a recent Health Affairs article, Sepucha
how to respond to LEP patients.197 Physicians from
et al propose that “documenting gaps in patients’
academic medical centers have developed and
knowledge and lack of concordance between
teach some of the course work.198
patients’ values and preferences and the care
received could stimulate rapid change, moving
Steps need to be taken to help people jump through the hoops of bureaucracy so that
they can access benefits and care services. Steps need to be taken to ensure that
patients understand their health conditions and how to take their medications safely.
45
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Consumer Conscious
and other cultural barriers in health care delivery.
As health insurance premiums continue to rise and
Through education and outreach, the goal of the
significant portions of these costs are shifted to
initiative is to reduce health care disparities and
consumers, the pressure on consumers to become
optimize communication between Spanish-speaking
well-informed, savvy users of health care services
Marriott employees and their health care practition-
is increasing. But the expectation that consumers
ers. The initiative is being piloted in Miami and
at all literacy levels become knowledgeable health
Houston and offers outreach calls and targeted
care decision-makers creates an obligation on
mailings to Marriott members and primary care
the part of public and private sector payers both
physicians in those cities. Measures of success
to provide, to support financially, and to create
for this initiative include improved adherence to
incentives for the provision of consumer education
medication regimens, and improvements in hospital
that will make this goal achievable.
use, emergency room visits, and enrollment in
disease management programs.200
It is also in the best interests of employers and
payers to enhance employee access to requisite
services and to eliminate barriers to effective health
care delivery. Aetna and Marriott International
have launched an initiative to address health care
concerns among Marriott employees who had
significantly high rates of diabetes, elevated
cholesterol values and hypertension.199 The initia-
tive seeks to address health literacy, language,
46
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Solutions to Pursue Policy Changes That Promote
Improved Practitioner-Patient Communications:
Tactics
Accountability
• Refer patients with low literacy to adult learning
Physicians, Social Workers
centers, and assist them with enrollment procedures.
• Encourage partnerships among adult educators, adult
Adult educators, Adult Learners, Health
learners and health professionals to develop health-
Professionals
related curricula in adult learning programs, and
conversely, to assist in the design of patient-centered
health care services and interventions.
• Broaden reimbursement policies for patient education
CMS, Private Payers
provided in physician offices beyond that for diabetes
education to other diseases and chronic conditions.
• Pursue pay-for-performance strategies that provide
CMS, Private Payers
incentives to foster patient-centered communications
and culturally competent care.
• Expand the number of medical liability insurance
Medical Liability Insurers
companies that provide premium discounts to
physicians who receive education on patient-cen-
tered communications techniques.
• Expand the development of patient-centered
Public and Private Payers
educational materials and programs to support the
development of informed health care consumers.
47
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Conclusion
When Archie Willard, an adult learner and literacy
The communications gap between the abilities of
advocate, goes to the doctor’s office and is given
ordinary citizens, and especially those with low
forms to fill out or information to read, he “feels a
health literacy or low English proficiency, and the
tightening inside.”201 And he will not read in front
skills required to comprehend everyday health
of you.202 For Toni Cordell, being presented with
care information must be narrowed. Hundreds
forms and medical information for her to read is
of studies have revealed that the skills required
like “asking me to climb Mt. Everest.”203 If there is
to understand and use health care-related commu-
more than one page, she too will not read in front
nications far exceed the abilities of the average
of you.204 It is likely that almost everyone has
person.205 As a result, communications break
been, at some time, put off by densely worded
down, and untoward events occur.
forms, and confused by complex medical regimens,
conflicting health care advice, poorly worded
The high rate of medical errors and adverse events
instructions, and medical speak that few on the
related to communication breakdowns, now widely
receiving side of health care can understand.
recognized, is also widely acknowledged to be
Many leave the doctor’s office with questions
untenable. In the Joint Commission’s sentinel
unspoken and unanswered, either because they do
event database, 65 percent of the identified adverse
not want to appear unknowledgeable or feel that
events have been found to have communications
their questions – perhaps proffered in the chaos
failures as the underlying root cause. Some inde-
that Mitch Winston described – will be unwelcome.
terminate number of these have been complicated
by low health literacy problems. The precise
Language barriers and cultural clashes also inhibit
impact of health literacy and language issues on
effective bilateral communications, leaving both
patient safety needs to be further evaluated with
sides of the care equation short-changed of infor-
some urgency so that data, rather than anecdotes,
mation that is necessary to the provision of safe,
can properly illuminate the problem.
high-quality care. Interpreter services are essential
and can break down barriers, but care providers
still need to grasp where their patients are
“coming from.”
The communications gap between the abilities of ordinary citizens, and especially
those with low health literacy or low English proficiency, and the skills required to
48
comprehend everyday health care information must be narrowed.
“ W h a t D i d t h e D o c t o r S ay ? : ” I m p r o v i n g H e a l t h L i t e r a c y t o P r o t e c t Pa t i e n t S a fe t y
The amelioration of all medical errors begins with
creating a culture of safety and quality. In that
culture, systems and processes of care – from
accessing the “system” to the patient encounter,
from informed consent to discharge – must be
designed to protect the patient’s safety and invite
the patient’s participation in her or his care.
Steps need to be taken to help people jump
through the hoops of bureaucracy so that they
can access benefits and care services. Steps need
to be taken to ensure that patients understand
their health conditions and how to take their
medications safely. Steps need to be taken to
help patients recognize risks to their health and
how these can be mitigated. And whenever the
opportunity presents itself, steps need to be taken
to help the non-reader read.
It is not sufficient to say, “Thou shalt be done.”
Attention needs to be paid to modifying the
“system” as it is today. This specifically includes
the existing regulatory and reimbursement
infrastructure, and its potential – with appropriate
modifications – to effect a chain of changes that
will make it possible for patients to receive more
time, more attention, more education and more
understanding.
All of health care’s major stakeholders need to
know where Toni and Archie are coming from, and
so too the many patients who could be harmed as
the result of ineffective communications between
them and those whom they entrust with their care.
49
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Acknowledgements
The Joint Commission sincerely thanks the Roundtable members for providing
their time and expertise in the development of this report.
David W. Baker, M.D., M.P.H., F.A.C.P.
Ronald M. Davis., M.D.
Associate Professor of Medicine
Chair, The Joint Commission Health Literacy
Chief, Division of General Internal Medicine
Expert Roundtable
Northwestern University, Feinberg School of Medicine
Director, Center for Health Promotion and
Chicago, IL
Disease Prevention
Henry Ford Health System
Cynthia Bauer, Ph.D
Detroit, MI
Senior Health Communication and E-Health Advisor
Office of Disease Prevention and Health Promotion
Terry C. Davis, Ph.D.
U.S. Department of Health and Human Services
Professor of Medicine and Pediatrics
Washington, DC
Louisiana State University Health Sciences Center
Department of Medicine and Pediatrics
Anne Beale, M.D., M.P.H.
Shreveport, LA
Senior Program Officer, Quality of Care for
Underserved Populations
Martin Hatlie, J.D.
The Commonwealth Fund
President
New York, NY
Partnership for Patient Safety
Chicago, IL
Cindy Brach, M.P.P.
Senior Health Policy Researcher
Jean Krause
Agency for Healthcare Research and Quality
Executive Vice President
Center for Delivery, Organizations and Markets
American College of Physicians Foundation
Rockville, MD
Philadelphia, PA
Toni Cordell
Julianne Fischer Haefeli
ReadUp - From Stumbling Blocks to Stepping Stone
Hospital Trustee
Charlotte, NC
2008 18th Avenue
Greeley, CO
Ilene Corina
President
Fred Hobby
PULSE of New York, Inc.
President and CEO
Wantagh, NY
Institute for Diversity in Health Management
Chicago, IL
50
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Linda Johnston-Lloyd, M.Ed.
Ruth Parker, M.D., F.A.C.P.
Senior Advisor
Associate Professor of Medicine and Associate
HRSA Center for Quality
Director of Faculty
Health Resources and Services Administration
Development for the Division of General Medicine
U.S. Department of Health and Human Services
Emory University School of Medicine
Rockville, MD
Atlanta, GA
Edwin C. Marshall, O.D., M.S., M.P.H.
Guadalupe Pacheco, M.S.W.
Professor
Office of Minority Health
Indiana University, School of Optometry
1101 Wootton Parkway
Bloomington, IN
Rockville, MD
Edward L. Martinez, M.S.
Rima Rudd, M.S.P.H., Sc.D.
Assistant Vice President formerly
Senior Lecturer on Society, Human Development,
National Association of Public Hospitals
and Health
and Health Systems
Department of Society, Human Development,
Washington, DC
and Health
Harvard School of Public Health
Rose Marie Martinez, Sc.D.
Boston, MA
Board Director
Institute of Medicine
Dean Schillinger, M.D.
Washington, DC
Department of General Internal Medicine
University of California at San Francisco,
Gail Nielsen
San Francisco General Hospital
Clinical Performance Improvement Education
San Francisco, CA
Administrator
Iowa Health System
Joanne Schwartzberg M.D.
Des Moines, IA
Director, Aging and Community Health
American Medical Association
Dennis S. O’Leary, M.D.
Chicago, IL
President
The Joint Commission
Susan C. Scrimshaw, Ph.D.
Oakbrook Terrace, IL
Dean, School of Public Health formerly
University of Illinois at Chicago
Chicago, IL
51
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Hugh Tilson, M.D., Dr. P.H., Ph.D.
Michael Wolf, Ph.D., M.P.H.
Clinical Professor, Public Health Leadership
Research Assistant Professor
School of Public Health
Center for Healthcare Studies
University of North Carolina at Chapel Hill
Northwestern University, Feinberg School of Medicine
Chapel Hill, NC
Chicago, IL
Barry Weiss, M.D.
Helen W. Wu, M.S.
Professor of Clinical Family and Community Medicine
Program Director formerly
University of Arizona College of Medicine
The National Quality Forum
Tucson, AZ
Washington, DC
Josie Williams, M.D., M.M.M.
Matthew K. Wynia, M.D., M.P.H.
Director, Rural and Community Health Institute
Director, The Institute for Ethics
Assistant Professor of Internal Medicine and
American Medical Association
Family Medicine
Chicago, IL
Texas A&M University System Health Science Center
College Station, TX
Romana Hasnain-Wynia, Ph.D.
Vice President, Research
Archie Willard
Health Research and Education Trust,
Health Literacy Advocate
American Hospital Association
Eagle Grove, IA
Chicago, IL
52
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Glossary of Terms
Audience-centered communications –
Jargon – Specialized language of a trade, profes-
Communications that are tailored to meet the
sion, or similar group
literacy and learning needs of targeted segments
of the public
Lumbar puncture – (Also called a spinal tap)
A test to evaluate the fluid surrounding the brain
Atrial fibrillation – Irregular heart beat
and spinal cord
Cellulitis – A skin infection that if sever or left
Meningitis – An infection of the tissues and
untreated, can be life-threatening
sometimes the fluid surrounding the brain and
spinal cord
Chronic illness – An illness of long duration and
possibly slow progression
Patient-centered communications –
Communications that are tailored to meet the litera-
Client-centered communications –
cy and learning needs of the individual patient
Communications that are tailored to meet the litera-
cy and learning needs of health plan enrollees
Repeat back – A method to ensure understanding
of information being communicated, often used
Colorectal cancer – Cancer of the colon or rectum
between members of a care-giving team, by asking
the receiver of the information to “repeat back”
Coumadin – A drug that helps prevent clots from
what was said.
forming in the blood
Taxonomies – Classification systems
Congestive Heart Failure (CHF) – A condition in
which the heart can no longer pump enough blood
Teach back – A method to ensure understanding
to rest the body
of information being communicated, often used
between a caregiver and a patient, by asking the
Diabetes – a disease in which the body does not
receiver of the information to “teach back” the
produce or use adequate levels of insulin
what was said.
Glucose level – The amount of sugar in the blood
Tubal ligation – A surgical procedure in which a
woman’s fallopian tubes are blocked, tied, or cut
Glucose log – The record kept by people with dia-
betes to monitor their blood sugar levels
Show back – A method to ensure understanding
of information being communicated, often used
Hypertension – High blood pressure
between a caregiver and a patient, by asking the
receiver of the information to demonstrate, or
Hysterectomy – Surgical removal of part or all of
“show back” what was demonstrated.
the uterus
Warfarin – The generic version of the drug,
Intravenous antibiotic therapy – Administration
Coumadin, which prevents clots from occurring
of a liquid, such as a liquid antibiotic, into the vein
in the blood
53
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Endnotes
1-4Wachter, Robert M., Shojania, Kaveh G., Internal Bleeding, Rugged Land, New York, NY, 2004, pages 242-244
5-92003 National Assessment of Adult Literacy (NAAL), National Center for Education Statistics, U.S. Department
of Education
10Institute of Medicine report, Health Literacy: A Prescription to End Confusion, National Academies Press, 2004
11-13NAALS
14Joint Commission Resources, Patients as Partners: How to Involve Patients and Families in Their Own Care, 2006
15-16Fadiman, Anne, The Spirit Catches You and You Fall Down, Farrar, Straus, and Giroux, New York, NY 1997
17IOM report, Health Literacy
18Baker DW, Gazmararian JA, et al, “Functional health literacy and the risk of hospital admission among Medicare man-
age care enrollees,” American Journal of Public Health, 2002;92: 1278-1283
19Baker DW, Parker RM, et al, “The health care experience of patients with low literacy, ” Archive of Family Medicine,
1996 5:329-334
20Williams, Mark V., David W. Baker, Eric G. Honig, et al., Inadequate Literacy Is a Barrier to Asthma Knowledge and
Self-Care (PDF file), Chest, Vol. 114 (4), American College of Chest Physicians, 1998.
21Schillinger D, Grumbach, K, et al, “Association of health literacy with diabetes outcomes,” JAMA 2002;288:475-482
22DeWalt, Darren A., Berkman, Nancy D., Sheridan, Stacey, et al, “Literacy and health outcomes: A systematic review of
the literature,” Journal of General Internal Medicine, 2004: 19, 1228-1239
23Joint Commission Sentinel Event Data, available at www.jcaho.org
24Hickson Gerald B., Federspeil, Charles F., Pickert James, “Patients Complaints and Malpractice Risks,”
JAMA, 2002:2951-3297
25-29Institute of Medicine, Preventing Medication Errors: The Quality Chasm Series, National Academies Press, 2006
30Davis, Terry C., Wolf, Michael S., Bass III, Pat f., et al, “Low literacy impairs comprehension of prescription drug warn-
ing labels,” Journal of General Internal Medicine, 2006:21:847-851
31-35Wachter, Shojania, Internal Bleeding
36U.S. Census data, www.uscensus.gov
37Fadiman
38-41Chen, Alice, “Doctoring across the language divide,” Health Affairs, Volume 25, No. 3, May-June 2006
42-49Flores, Glenn, Laws, M. Barton, Mayo, Sandra J., et al, “Errors in medical interpretation and their potential clinical
consequences,” Pediatrics, 111;1 January 2003: 6-14
50AHA News, October 11, 2006
51Chen
52Hablamos Juntos
53-54Fadiman
55Rosana Scolari speaking at the IOM Health Literacy Roundtable meeting, January 25, 2006
54
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Endnotes
56-58Wilson-Stronks, Amy, “Healthcare Language and Culture: What the Joint Commission is Learning” presentation
given at the national conference, Health Literacy: The Foundation for Patient Safety, Empowerment and Quality
Health Care, June 26-27, 2006
59HRET
60HRET
61-62AHRQ, www.ahrq.gov/qual/hospculture/overview.html
63The California Health Literacy Initiative, Low Literacy, High Risk: The Hidden Challenge Facing Health Care
in California, October 2003
64American Medical Association Consensus Report, Improving Communication - Improving Care, 2005
65www.ama-assn.org
66-67Iowa Health System , AMA site visit, learning session 5 materials
68www.askme3.org
69AMA Foundation Toolkit
70-71Iowa Health System
72The Commonwealth Fund, “Patient-centered communication, ratings of care, and concordance of patient and
physician race,” www.cmwf.org/publications, viewed 9-05
73-74Cooper, Lisa A., Roter, Debra L., “Patient-centered communications, ratings of care, and patient and physician race,”
Annals of Internal Medicine, December 2003, 139:11.
75-76Institute of Medicine, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, National
Academies Press, March 2002
77-78Baker, David W., Parker, Ruth M., Williams, Mark V., et al “The health experience of patients with low literacy,”
Archives of Family Medicine, Vol. 5, June 1996
79Dewalt, Darren A, Berkman, Nancy D, Sheridan, Stacey, et al, “Literacy and health outcomes: A systematic review
of the literature,” Journal of General Internal Medicine, 2004:19:1228-39
80-81Bennett, CL, Ferreira, MR, Davis, TC, et al “Relation between literacy, race, and stage of presentation among low
income patients with prostate cancer,” Journal of Clinical Oncology, Vol 16, 3101-3104
82Commonwealth Fund
83The Health Literacy Style Manual, Covering Kids and Families, October 2005
84Gazmarian, Julie A., David W. Baker, Mark V. Williams, et al., “Health Care Literacy Among Medicare Enrollees in
a Managed Care Organization”, JAMA, Vol. 281, No. 6, 1999.
85-89The Health Literacy Style Manual, Covering Kids and Families, October 2005, available at
http://coveringkidsandfamilies.org/resources/index.php?InfoCenterID=194
90-91Healthy People 2010, Health Communications, 11-6
92Victor Strecher speaking at the Health Literacy: The foundation for Patient Safety, Empowerment, and Quality
Health Care, national conference, June 26-27, 2006
55
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Endnotes
93Hablamos Juntos, www.hablamosjuntos.org
94http://www.hablamosjuntos.org/signage/symbols/default.using_symbols.asp
95-98Marcus, Erin N., “The silent epidemic - The health effects of illiteracy,” New England Journal of Medicine, 355:4,
July 27, 2006
97DeWalt, Darren a., Berkman, Nancy D., Sheridan, Stacey, et al “Literacy and health outcomes: A systematic
review of the literature,” Journal of General Internal Medicine, Volume 19, December 2004: 1228-1239
98Osterberg, Lars, Blaschke, Terrence, “Adherence to medication,” New England Journal of Medicine, 353;5,
August 4, 2005: 487-497
99-103National Quality Fourm, Implementing a National Voluntary Consensus Standard for Informed Consent, A User's
Guide to Healthcare Professionals, 2005
104Weiss, Barry D., Mays, Mary Z., et al, “Quick assessment of literacy in primary care: The newest vital sign,”
Annals of Family Medicine, 3:514-522, 2005
105Dr. Ruth Parker interview in Marcus article
106Archie Willard speaking at the roundtable meeting
107Marcus
108-109Ludermer, Kenneth M. Time to Heal: American Medical Education from the Turn of the Century to the Era of
Managed Care, Oxford University Press, 1999
110Roter, Debra L., Hall, Judith A., Aoki, Yutaka, “Physician gender effects in medical communication: A meta-analytic
review,” JAMA, August 14, 2002 - Vol. 288, No. 6
111USMLE, www.usmle.org
112-114Makoul, Gregory, “Communication skills education in medical school and beyond,” JAMA January 1, 2003, Vol.
289, No. 1
115IOM, Health Professions Education, p. 3
116-117Bedell, Susanna E., Graboys, Thomas B., et al, “Words that harm, words that heal,” Arch Intern Med, vol. 164,
July 12, 2004
118-119Davis, TC, Dolan, NC, Ferreira, MR, “The role of inadequate health literacy skills in colorectal cancer screening,”
Cancer Investigation, 2002;19(2): 193-200
120Bedell, Graboys, et al
121Rothman, Russell L., DeWalt, Darren A., Malone, Robb, et al, “Influence of patient literacy on the effectiveness
of a primary care-based diabetes disease management program,” JAMA 2004;292: 1711-1716
122-125IOM Health Literacy Roundtable presentation, September 14, 2006
126-130Osterberg
131-132National Quality Fourm, Implementing a National Voluntary Consensus Standard for Informed Consent, A User's
Guide to Healthcare Professionals, 2005
56
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Endnotes
133Schwartz, Lisa M., Woloshin, Steven, Welch, H. Gilbert, “Risk communication in Clinical Practice: Putting cancer
into context,” Journal of the National Cancer Institute, Monographs No. 25, 1999
134NAALS
135-136Edwards, A., Elwyn, G., “Understanding risk and lessons for clinical risk communication about treatment
preferences,” Quality in Health Care, vol. 10, 2001
137-138Sepucha, Karen R., Fowler, Floyd J., Mulley, Albert G., “Policy support for patient-centered care: The need
for measurable improvements in decision quality,” Health Affairs, October 7, 2004
139Institute of Medicine, Crossing the Quality Chasm: A New Health System for the Twenty-first Century, National
Academies Press, 2001
140Sepucha et al
141-142Blumenthal, David, “Decisions, decisions: Why the quality of medical decisions matter,” Health Affairs,
October 7, 2004
143-145IOM, Health Literacy
146-147http://www.certs.hhs.gov/centers/houston.html
148IOM, Health Literacy
149Joint Commission Resources, Patient Safety Essentials for Health Care, 4th edition
150Landro, Laura, “Hospitals confront errors at the hand-off,” The Wall Street Journal, June 28, 2006
151-155Joint Commission Resources, Patient Safety Handbook
156Schnipper, JL, Kirwin, JL, Cotugno, MC, et al, “Role of pharmacist counseling in preventing adverse drug events
after hospitalization,” Archives of Internal Medicine, 2006; 166: 565-571
157-158Federico, Frank, “Reconciling doses,” AHRQ WebM&M, November 2005
159Bell, CM, Rahimi-Darabad, P., Orner, AI, “Discontinuity of chronic medications for patients discharged from the
intensive care unit,” Journal of General Internal Medicine, 2006 Sep;21(9):937-41
160-161Frederico
162-165Joint Commission Resources Patient Safety Handbook
166-167Centers for Disease Control and Prevention, Chronic Disease Overview, www.cdc.gov
168-170IOM, Health Literacy, page 168
171Wagner, Edward H., Austin Brian T., Davis, Connie, et al, “Improving chronic illness care: Translating evidence
into action,” Health Affairs, Novermber/December 2001, Vol. 20, No. 6
172-173Bodenheimer, Thomas, Wagner, Edward H., Grumbach, Kevin, “Improving primary care for patients with
chronic illness,” JAMA, October 9, 2002, Vol 288, No. 14
174-176Schillinger, Dean, “Improving chronic disease care for populations with limited health literacy,” Appendix B,
Health Literacy: A Prescription to End Confusion, Institute of Medicine, National Academies Press, 2004
177-179Marcus
57
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Endnotes
180Dewalt et al
181National Center for the study of Adult Learning and Literacy, John Comings, Lisa Soricone, “Massachusetts:
A Case Study of Improvement and Growth of Adult Education Services”
182-187Reach Out and Read, www.reachoutandread.org
188-191Rudd, Rima, “When words get in the way: The importance of health literacy,” Literacy Update, vol. 13, No.3,
January 2004
192CMS, www.cms.gov
193-194Robert Mirsky, presentation at the “Mini -Conference on Health Literacy and Health Disparities,” Northwestern
Hospital, July 21, 2005
195Sepucha et al
196-198Hollmer, Mark, “Can sensitivity lower premiums?” Boston Business Journal, November 4, 2005
199-200Hispanic Association of Corporate Responsibility
201-204Speaking at Health Literacy: The foundation for Patient Safety, Empowerment, and Quality Health Care, national
conference, June 26-27, 2006
205Rudd
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“ W h a t D i d t h e D o c t o r S ay ? : ” I m p r o v i n g H e a l t h L i t e r a c y t o P r o t e c t Pa t i e n t S a fe t y
For more information on
The Joint Commission
visit us at www.jointcommission.org,
or call 630-792-5800.
“ W h a t D i d t h e D o c t o r S ay ? : ” I m p r o v i n g H e a l t h L i t e r a c y t o P r o t e c t Pa t i e n t S a fe t y
60
“ W h a t D i d t h e D o c t o r S ay ? : ” I m p r o v i n g H e a l t h L i t e r a c y t o P r o t e c t Pa t i e n t S a fe t y
“What Did the Doctor Say?:” Improving
Health Literacy to Protect Patient Safety
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