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4
The Role of the University in
Improving States’ Health Literacy
HOW THE UNIVERSITY CAN ADVANCE
STATE HEALTH LITERACY
Dean Schillinger, M.D.
University of California, San Francisco
Schillinger reviewed the seven goals of the 2010 Department of Health
and Human Services (HHS) National Action Plan to Improve Health Lit -
eracy. He then described examples of community-engaged research that
improve the health literacy of the state’s population at the University of
California, San Francisco (UCSF) and at other health sciences campuses in
California. The UC campuses are a resource for training the future health-
care workforce, for providing clinical care, innovating care, advancing
public policy, and conducting impactful research.
The seven goals of the National Action Plan to Improve Health Lit-
eracy are to (HHS, 2010)
1. develop and disseminate health and safety information that is
accurate, accessible, and actionable;
2. promote changes in the healthcare system that improve health
information, communication, informed decision making, and
access to health services;
3. incorporate accurate, standards-based, and developmentally
appropriate health and science information and curricula in child
care and education through the university level;
33
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34 IMPROVING HEALTH LITERACY WITHIN A STATE
4. support and expand local efforts to provide adult education, Eng-
lish language instruction, and culturally and linguistically appro -
priate health information services in the community;
5. build partnerships, develop guidance, and change policies;
6. increase basic research and the development, implementation, and
evaluation of practices and interventions to improve health lit -
eracy; and
7. increase the dissemination and use of evidence-based health lit-
eracy practices and interventions.
Research on health literacy can be viewed as translational research.
The National Institutes of Health (NIH) has in the last few years revis -
ited its mission and has focused on developing expertise and products
in translational research, moving from bench to bedside, and then from
bedside to community. Over the past half century NIH primarily funded
Translational 1 (T-1) research, which is research on “the transfer of new
understandings of disease mechanisms gained in the laboratory into the
development of new methods for diagnosis, therapy, and prevention
and their first testing in humans” (Sung et al., 2003). Translational 2 (T-2)
research involves bedside-to-community research, as does some Transi -
tional 3 (T-3) research, which is defined as “the translation of results from
clinical studies into everyday clinical practice and health decision mak -
ing” (Sung et al., 2003). Much effort has been put into T-1 discovery. While
the gap in funding between T-1 and T-2 research is immense, increased
attention is now being paid to how T-1 discoveries can be incorporated
into clinical and public health practice to promote behavior change and
reduce health disparities. Unfortunately, the results of bench research
do not spontaneously diffuse throughout the practice community. For
example, the findings from randomized controlled trials may not affect
community practices for years to decades. The Clinical Translational Sci -
ence Awards from the NIH are accelerating the pace of discovery from the
bench all the way to population health, Schillinger said.
The UCSF received an NIH Translational Sciences Award and estab-
lished the Clinical and Translational Science Institute (CTSI). CTSI chal -
lenges, encourages, and supports UCSF researchers to take the research
capital at UCSF—the great wealth of clinical research discoveries, knowl -
edge, and know-how—and link it with community partners’ expertise
and priorities to effectively translate research into interventions that can
be scaled to make a measurable impact on the health of the local com -
munity and eliminate disparities. CTSI has developed four working prin -
ciples. These are as follows:
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35
THE ROLE OF THE UNIVERSITY
1. Take a population health perspective.
2. Invest in community partnerships.
3. Require transdisciplinary science.
4. Translation is itself a subject matter for research.
While there are outstanding schools of medicine, nursing, pharmacy,
and dentistry at UCSF, there is no school of communication or a school
of education, thereby hampering efforts to involve those disciplines in
research, Schillinger said. There are, however, pockets of expertise in these
areas, and collaboration with investigators at the University of California,
Berkeley, for example, help fill these transdisciplinary gaps.
A transdisciplinary research approach would ideally involve such
fields as epidemiology, biomedical science and technology, behavioral
science, psychology, communication and information technology, politi -
cal science, sociology, cognitive science, social marketing, and economics.
These fields are integral to understanding the ecological model for health.
This model assumes that many factors affect individual health and that
individuals can be considered to be striving for health and the mainte -
nance of health in the context of multiple environmental influences from
the family all the way up to local and national political decisions.
CTSI is committed to the notion that translation is itself a subject mat-
ter for research. There is a science to dissemination and a science to imple-
mentation. Schillinger pointed out that in such research, an emphasis on
external validity sometimes comes at the expense of internal validity.
The methodology underpinning the controlled clinical trial often dictates
that a narrowly defined set of people be included in the trial. Many times
individuals are excluded from participation if they are not within certain
age ranges or have comorbid health conditions. The clinical trial may be
internally valid insofar as it advances our understanding of important
questions for those groups represented in the trial, but it may have little
relevance to the real-world patients in real-world settings. Schillinger
suggested that a balance must be struck; that is, the representativeness
of study samples, the study settings, and the study interventions as they
relate to the real world all need to be attended to, while also trying to
maximize internal validity.
Schillinger cited the work of Lawrence Green, who through his work
at the Centers for Disease Control and Prevention (CDC) and the National
Cancer Institute, has eloquently and persistently advocated for the need
not only to put research into practice, but to also “put practice back
into research.” This principle has been at the heart of the primary care
practice-based research networks that have engaged community settings
in framing research questions, designing interventions that are feasible,
and testing them in the real world. This approach, if expanded beyond
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36 IMPROVING HEALTH LITERACY WITHIN A STATE
primary care research, would represent a sea change for research institu-
tions such as UCSF.
UCSF has used this community-based approach, for example, in
researching the role of chronic hepatitis B on the development of hepa-
tocellular cancer. Chronic hepatitis B-related cancer is a leading cause of
cancer deaths among Asian and Pacific Islanders in the San Francisco
Bay Area. Fundamental clinical and epidemiologic research has been con-
ducted on hepatocellular carcinoma, surveillance, screening, and antiviral
treatments, but high rates of infection and cancer death have persisted.
With the leadership of Dr. Tung Nguyen, CTSI has linked researchers and
clinicians with public health advocates and community members to try
to address these epidemics. To further public awareness, social marketing
campaigns among the Asian and Pacific Islander community in the San
Francisco Bay Area have emerged to promote testing, vaccination, and
treatment.
Schillinger provided another example of research at UCSF related to
health literacy, health promotion, and health communication, research
that is in response to the first goal of the National Action Plan to Improve
Health Literacy. With support from the Agency for Healthcare Research
and Quality (AHRQ), medication summary guides are being developed
for vulnerable populations with rheumatoid arthritis (RA) (Edward Yelin
is the principal investigator [PI]). In describing the context for the study,
Schillinger discussed how the treatment of RA has advanced greatly over
the last decade. A number of new biologic therapies are remarkably effec -
tive if prescribed to the patient early in the disease course. These medica -
tions can change the trajectory of the disease such that people are much
less likely to be disabled from RA than they were 15 years ago. Yet the
medications are very costly and have to be taken exactly as prescribed.
There can be serious side effects if too much medication is taken, there
is a narrow therapeutic window in terms of dosage, and monitoring for
adverse events is critical. To be effective, patients must be extremely
involved in their medication management and care. Descriptive studies
have shown that there are significant sociodemographic disparities in the
degree to which patients receive these highly effective treatments. The
investigators have hypothesized and shown that health communication
is one of the contributors to these disparities. Box 4-1 presents the study
objectives, and Box 4-2 lists the anticipated outcomes of the study.
Another example of UCSF research is the Bay Area Breast Cancer and
the Environment Research Program (Robert Hiatt, PI) which involves
basic, applied, and community-based approaches. There are three core
projects:
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THE ROLE OF THE UNIVERSITY
1. Environmental Influences and the Windows of Susceptibility in
Breast Cancer Risk Project—NCI funded, a highly technical project
that includes T-1 research
2. Early Environmental Exposures and Human Puberty Project, con-
ducted in collaboration with investigators at Kaiser Permanente
3. Community Outreach and Translation Core, in collaboration with
Zero Breast Cancer, a community-based advocacy organization
The context for the program is the observation of a trend that puberty
is occurring at younger ages among girls. Because early onset of puberty is
a risk factor for breast cancer, there is interest in whether early exposure to
certain environmental chemicals, obesity, genetics, and other factors raise
the risk of early puberty. There are tremendous challenges associated with
communicating to the public about findings related to environmental tox-
ins, their association with early puberty, and their potential relationship
to breast cancer risk. There is need for communication across disciplines,
among biologists, physical scientists, biochemists, community members,
BOX 4-1
Study Objectives
• ssess the knowledge of RA therapies among vulnerable populations and the
A
utility of current RA summary guides.
• evelop print and video adaptations of guides and a decision aid tool.
D
• onduct a pilot trial to test adapted guides and the decision aid, and evaluate
C
the impact of tools on outcomes.
SOURCE: Schillinger, 2010.
BOX 4-2
Anticipated Study Outcomes
• low literacy, plain language, medication summary guide in English, Spanish,
A
and Chinese for vulnerable populations with RA.
• decision aid tool derived from the adapted medication summary guide to im-
A
prove patient-physician communication, reduce decisional conflict, and improve
adherence and outcomes in RA patients with limited health literacy.
SOURCE: Schillinger, 2010.
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38 IMPROVING HEALTH LITERACY WITHIN A STATE
and advocates. The program has created opportunities and products (The
Breast Biologues, bayrea.bcerc.org/cotcpubs) that communicate findings
to these various constituencies. It is a model that can be replicated for a
number of diseases and conditions.
In response to the second goal of the National Action Plan to Improve
Health Literacy, Schillinger described an AHRQ-funded project to provide
automated telephone self-management (ATSM) support for patients with
diabetes (Dean Schillinger, PI). The project involves the use of a simple
technology, automated telephone support, to provide patients with a
basic understanding of diabetes and access to self-management tools
and support. It is an interactive health technology relying on touchtone
telephones. The service places a call to patients weekly, and recorded mes-
sages are in the patient’s native language: English, Spanish, or Chinese. If
the patient reports an episode of hypoglycemia or low blood sugar, he or
she will get a call back from a nurse. If a patient reports that everything is
going well, that he or she is not smoking, that he or she is walking, then
there is no callback. Patients receive supportive messages, and they do not
receive another call until the following week. There is a hierarchical logic
used to deliver self-management support. In addition to the telephone
intervention, patients attend a weekly surveillance and education session
over a 9-month period.
A randomized trial examining usual care provided to diabetic patients
and the ATSM intervention was conducted in primary care practices using
very broad inclusion criteria (Handley et al., 2008; Sarkar et al., 2008;
Schillinger et al., 2009). Schillinger pointed out that usual care at UCSF
is fairly robust. In general, patients are seen by a primary care physi-
cian, diabetes educators, nutritionists, and when indicated, by specialists
(e.g., endocrinologists). When the automated telephone self-management
intervention was compared to the adjunctive group medical visits and
to usual care in a three-arm comparative effectiveness trial, the level of
engagement was much higher for ATSM than for the group medical visits.
Engagement was especially high for those with communication barriers of
limited literacy or English proficiency. The ATSM group also had the most
significant gains in their diabetes self-management behavior at 1 year
compared to where they were at a baseline. Quality-of-life outcomes were
also enhanced by the automated phone system. For example, days spent
in bed sick from diabetes decreased from 3.8 days per month to 1.7 days
per month, about a 50 percent reduction in days spent in bed for those
who received the automated telephone intervention. The results suggest
that this is a promising low-cost technology to redesign the healthcare
system and provide an adjunct to care.
The study also demonstrated that the intervention was cost-effective.
There has been great interest in the product. Medicaid Managed Care
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39
THE ROLE OF THE UNIVERSITY
Plans have expressed interest, with a large majority of Medicaid health
plans in California reporting an interest in employing ATSM-like technol -
ogies (Goldman et al., 2007). These plans enroll large numbers of diabetics
who do not speak English; and if they do, they have limited literacy and
numeracy skills. One health plan in San Francisco, with a high number of
non-English speaking patients, wanted to adapt and adopt the program
for their members with diabetes.
Working with health plans has been very productive. Health plans
have skills and resources that are not available in research settings. Their
marketing and outreach departments, for example, can identify new
enrollees as a Spanish-speaker, Chinese-speaker, or English-speaker, and
send an enrollment card for the diabetes program. The program is a cov-
ered benefit. The health plan program has been successful in engaging
their members with diabetes. On average, 60 percent of the members are
picking up and answering these automated calls on a weekly basis. This
rate does not appear to diminish over time. The Chinese language speak -
ers are the most engaged, followed by the Spanish speakers, and then the
English speakers. This has been a wonderful example of a community-
engaged research project, building on a prior RCT.
Another CTSI intervention implemented in both academic and com-
munity settings informs and involves people with cancer in their treatment
decisions (Jeff Belkora, PI). Breast cancer patients are sent decision aids
before their visits (i.e., videos and booklets). During the visit a number
of communication aids and techniques are used, including question list-
ing, audio recording, and note taking. After their medical visits, women
debrief with a “breast buddy,” and decide on a treatment plan. The goal
is to integrate evidence-based decision and communication aids into the
high-volume academic Breast Care Center at UCSF. The intervention is
also being implemented in a rural community setting, Mendocino County,
which is about a 4-hour drive north of San Francisco.
Patients reported that the recordings and notes were invaluable in
recalling the conversation with the doctor and helpful in clarifying options,
understanding the consequences of available choices, and making deci-
sions. Results indicate that the intervention is associated with improved
patient knowledge, increased question asking, and improved recall of
information. The communication and decision aids have also shifted the
time, place, and people who are involved in information exchange. The
healthcare experience improved not only for patients, but also for clini-
cians. Physicians report that the patients coming in with decision aids are
more prepared and ask questions that make good use of the available time.
In support of the fourth goal of the National Action Plan to Improve
Health Literacy, UCSF, under the leadership of Ricardo Munoz, is attempt-
ing to improve linguistically appropriate mental health services by lever-
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40 IMPROVING HEALTH LITERACY WITHIN A STATE
aging the Internet and mobile technology. Munoz is director of the Latino
Mental Health Research Program at San Francisco General Hospital. He
is developing and testing automated self-help Internet interventions and
is particularly interested in depression, depression prevention, cogni-
tive behavioral therapy, and recently, smoking cessation. Munoz believes
that current health care relies too heavily on consumable interventions.
Medications can only be used once. Time spent in a face-to-face interven-
tion can never be used again. In contrast, the Internet can be used more
effectively with a greater reach and at marginal cost. The Internet-based
smoking-cessation program has been accessed by individuals across the
country and internationally. There is a Spanish-language website, and a
site is being developed for Chinese speakers. Munoz is tailoring the web -
site content to meet varying levels of literacy.
Schillinger described a multisite heart failure study (Michael
Pignone, University of North Carolina, PI, with UCSF, UCLA, and
Northwestern University collaborators). In general, one in five Medicare
patients who are hospitalized, are hospitalized with heart failure. Inves -
tigators compared a single educational session to a tiered educational
approach for heart failure patients in reducing heart failure admissions.
The inpatient quality measure used by the Center for Medicare and
Medicaid Services (CMS) calls for patients to be given written materials
regarding such factors as diet, weight monitoring, and medication man -
agement. Over 600 patients were enrolled in the trial, including 40 per-
cent who had limited health literacy. The single-session intervention was
compared to a goal-directed, layered teaching program using the Teach
to Goal approach. The teach-back method is used to ensure that patients
understand the core elements of self-management for heart failure, such
as the need to weigh oneself daily. Those who were randomized to the
Teach to Goal arm had very robust short-term improvements in self-
efficacy, heart failure self-care, and heart failure-related quality of life.
The gains in quality of life were clinically significant. One-year outcomes
look very promising, especially for those with limited health literacy.
Freedman and others have advanced the concept of “public health
literacy” (Freedman, 2009). They define it as the degree to which indi-
viduals in groups can obtain, process, understand, evaluate, and act upon
information needed to make public health decisions that benefit the com -
munity. In the case of secondhand smoke, the target population was the
public, and the purpose of the educational campaign has been to improve
the health of the public. Public health literacy involves engaging stake -
holders in public health efforts to address the underlying determinants
of health. It also involves many constructs, including some conceptual
foundations about the influence of environment on individual health,
critical skills, and a civic orientation.
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THE ROLE OF THE UNIVERSITY
Schillinger pointed out that the public’s awareness of the dangers of
secondhand smoke is an example of a health literacy success story. The
target audience for knowledge about secondhand smoke was the general
public. The recognition that one person’s smoking behavior is not only
bad for that person, but also bad for others in the community was a major
accomplishment. According to UCSF researcher Stan Glantz, an estimated
600,000 people a year have been saved as a result of research related to
secondhand smoke.
Kirsten Bibbins-Domingo (UCSF Center for Vulnerable Populations,
San Francisco General Hospital) studied the overuse of salt and sugar in
the diet. It is well established that lowering salt lowers blood pressure.
The association between daily salt intake and systolic and diastolic blood
pressure is fairly linear. Individuals who consume 8 grams of salt a day
have much higher systolic blood pressures than those who take in four,
for example. Using a sophisticated modeling technique, Bibbins-Domingo
showed that everyone’s blood pressure is lowered with lower salt, but
the elderly, those who have hypertension, and African-Americans have a
greater reduction in blood pressure with lower amounts of salt.
Bibbins-Domingo modeled what would happen to the health of
Americans if sodium in processed foods were reduced by 20 to 30 per-
cent, a very modest reduction (Bibbins-Domingo et al., 2010). She found
that mortality would fall across all age groups, with the greatest mortality
benefit among the young and African Americans. With a reduction in salt
intake there would be between a 5 and 12 percent reduction in mortality
from cardiovascular disease, stroke, and hypertension. This reduction is
equivalent to the public health gains achieved if half of American smok -
ers stopped smoking. This intervention was triple the effect of a 5 percent
weight loss among those who were obese. It was 10 times more effec -
tive than putting everybody on cholesterol-lowering medications (e.g.,
statins), and was as effective as having everyone with hypertension on
optimal blood pressure treatment.
The World Health Organization estimates it costs a dollar per person
to reduce salt through regulatory means, public campaigns, and monitor-
ing. The cost savings are $7 saved for every dollar spent.
Schillinger concluded that salt in foods, and consumption of sugar-
sweetened beverages (that is also promoted by high-salt food, which
drives the thirst response) are major contributors to the rise in hyperten -
sion, diabetes, and obesity in the United States. Public health efforts are
needed to change these dangerous trends. Health literacy and interven-
tions and new policies will be key to informing and activating the pub-
lic to bring about change among individuals, communities, and policy
makers, Schillinger said.
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42 IMPROVING HEALTH LITERACY WITHIN A STATE
WORKFORCE TRAINING AND PREPAREDNESS
Carol Mangione, M.D., M.S.P.H.
University of California, Los Angeles
As mentioned earlier, health literacy is “the degree to which indi-
viduals have the capacity to obtain, process, and understand basic health
information and services” (Ratzan and Parker, 2000). Only 52 percent
of patients understand what health providers tell them or give them to
read (IOM, 2004). According to the 2003 National Assessment of Adult
Literacy (NAAL), almost 45 percent of the U.S. population (or 93 million
Americans) have only basic or below basic literacy skills. The NAAL cat -
egorizes “Below Basic” as the ability to perform only the most simple and
concrete literacy skills such as signing a form, adding amounts on a bank
deposit slip, and searching in a simple text to find out whether a patient
is allowed to drink liquids before a medical test.
The NAAL only measures adult literacy, that is, the ability to read.
Health literacy is much broader, involving the ability to read, understand,
and act upon health information. Numeracy is also an important compo -
nent of health literacy. The estimates from the NAAL survey are low when
the complexity that the health setting confers is taken into consideration.
In 2003 the California Health Literacy Initiative found that 23 percent
of California residents lacked basic prose literacy levels. Nearly 70 percent
of the immigrants who have resided in California for 10 or fewer years
are functionally illiterate. To be functionally illiterate means that you are
unable to read the label on a medicine bottle, complete a medical his-
tory form, or find an intersection on a street map (http://www.cahealth
literacy.org). Statewide estimates of health literacy are not available, but
they are likely to be higher than low literacy levels overall.
Being health literate has become a challenge in light of the increasing
complexity of medical care and the healthcare system, Mangione said.
Written patient materials that are often lengthy and delivered quickly
during stressful medical encounters are being provided to patients to help
them understand verbal instructions. Even the most well-educated and
experienced individuals can have difficulties navigating the healthcare
system.
There is a strong association between low health literacy and pro-
cesses and outcomes of care. Having low health literacy is associated
with delays in diagnosis (Bennet et al., 1998), in poor disease management
skills (Williams et al., 1995), and in higher healthcare costs (Weiss et al.,
1994).
When physicians were asked, as part of a survey conducted by the
California Health Literacy Initiative, whether low literate adults get lower
quality of care, 94 percent of physicians said that they thought that was
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43
THE ROLE OF THE UNIVERSITY
the case (http://www.cahealthliteracy.org). Most (89 percent) physicians,
when asked whether they had received any formal training in health
literacy, said no. Herein lies the educational challenge, Mangione said.
The survey results identified the need to better understand necessary
components of medical professional training and effective methods of
instruction. While there are some techniques that are being used by some
medical providers, for example, the teach-back method and reduction in
the use of medical jargon, Mangione said that more techniques should be
tested and applied. The survey results suggest that many physicians have
received the message that health literacy, as an issue, exists. This message
now needs to be spread to all allied health professionals, including phar-
macists, nurses, nurse practitioners, and medical assistants. It is probable
that the nursing profession is ahead of physicians on this issue because
of their proximity to patients and the amount of time they spend decod -
ing the complex instructions that physicians tend to leave patients with.
There are many challenges when considering the health workforce
training needs. First, most of the literature on health literacy has focused
on patient factors that put people at greatest risk, whether it is not speak -
ing English as a first language, being an older adult, or not having fin -
ished high school. There are relatively few research findings relevant to
the workforce of people who care for patients.
When surveyed, health professionals tend to overestimate patients’
health literacy. Health professionals do not routinely use many of the best
practices for effective communication with patients of low health literacy.
The evidence base for understanding whether using these techniques
actually improves care is limited to a small number of studies.
The American Medical Association (AMA) Foundation has contrib-
uted to understanding educational methods appropriate for health profes-
sionals. The AMA has recommended five communication techniques for
patients with low literacy (Schwartzberg et al., 2007):
1. Understandable language
2. The teach-back method
3. Patient-friendly materials
4. Helping patients understand
5. Patient-friendly environment
As part of a study of the routine use of communication techniques by
physicians, pharmacists, and nurses, investigators from the AMA asked
attendees of a health literacy conference about their interactions with
patients. Nurses were significantly more likely than physicians and phar-
macists to use the teach-back method (60.5 percent, 35.4 percent, and 27.7
percent, respectively). Roughly two-thirds of all the health professionals
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44 IMPROVING HEALTH LITERACY WITHIN A STATE
said that they spoke more slowly, and almost all used simple language
and avoided jargon.
The 2004 IOM report Health Literacy: A Prescription to End Confusion
concluded that “Health professionals and staff have limited education,
training, continuing education, and practice opportunities to develop
skills for improving health literacy” and recommended that “Profes-
sional schools and professional continuing education programs in health
and related fields, including medicine, dentistry, pharmacy, social work,
anthropology, nursing, public health, and journalism, should incorporate
health literacy into their curricula and areas of competence.”
The Accreditation Council for Graduate Medical Education (ACGME),
the body responsible for the accreditation of post-M.D. medical training
programs, has stated that “Residents must demonstrate interpersonal and
communication skills that result in the effective exchange of information
and collaboration with patients, their families, and health professionals”
(ACGME, 2007). Mangione questioned the adequacy of training available
to prepare residents to meet this requirement. She also questioned the
ability of current medical school faculty to train residents given their own
lack of training in this area.
Numerous agencies, including IOM, have called for improvements in
training health professionals in health literacy; however, core competen -
cies for health literacy training have not yet been identified. Developing
training materials is difficult without first identifying core competencies.
Cliff Coleman and colleagues at Oregon Health and Sciences University
have a project under way that will define the necessary health literacy–
related knowledge, skills, attitudes, and practices for health professionals.
The teach-back technique was identified in 2001 by AHRQ as one
of 11 top patient safety practices. This approach asks patients to recall
and restate what they have heard during the informed consent process
(AHRQ, 2001). The teach-back technique works as part of an interactive
communication loop. When a clinician discusses a new concept or pro -
vides health information, the clinician assesses the patient’s recall and
comprehension and clarifies and tailors the information according to what
the patient has recalled. According to Mangione, this technique has not
been widely taught in California.
There are limited data available for the status of health literacy train-
ing, but according to anecdotal reports, health professionals have limited
awareness and skills and literacy training is inadequate. Many organiza -
tions have recommended that training and curricula be improved, but
although curricula is proliferating, and 70 percent of medical schools
require some health literacy training, the content and effectiveness of the
training are unknown.
Mangione reported on a nonscientific, informal survey of health lit -
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THE ROLE OF THE UNIVERSITY
eracy curriculum for health professionals being trained within the UC
system. She sent an e-mail to the five UC School of Medicine deans of
education, and the deans of the pharmacy school, two nursing schools,
and two schools of public health. She asked for descriptions of their cur-
riculum to prepare health professionals to work with patients with low
health literacy. Up to five reminders were sent to encourage response.
Replies were received from all but one of her contacts, and the informa-
tion is displayed in Table 4-1.
Mangione found that when programs had some curriculum content
in the area of health literacy the content was often embedded in other
coursework and respondents were not able to give precise estimates of the
time committed to health literacy or its components. In medical schools,
for example, doctoring courses tend to be where doctor-patient communi-
cation is taught. The health communication part of the doctoring courses
is a logical place to integrate health literacy training.
There is a long tradition of formal training in health communication
for physicians, nurses, and pharmacists. However, the structure of this
training in health professional schools has traditionally assumed a high
TABLE 4-1 Results of Informal Survey of University of California
Health Professional Schools’ Health Literacy Curriculum
Campus Response
UC Berkeley– No specific curriculum on health literacy; this topic
Public Health is included in various courses. Sessions are taught for
Joint Medical Program students (Berkeley and UCSF)
and for the public health students in Public Health
Interventions class as well as in sessions for other
professors’ courses.
UC Davis–Medicine Health literacy is embedded in the 3-year Doctoring
course.
UC Davis–Nursing New school—entering class is Masters and Ph.D. level.
No specific curricula developed yet.
UC Irvine–Medicine Through the Reynolds Foundation grant, several
sessions in the curriculum touch on health literacy
(mainly to address health disparities).
UC Irvine–Nursing Health literacy is taught throughout the curriculum in
both the Adult Health Care course and Community-
Based Health Care course for undergraduate nursing
students. It is also taught in the Human Behavior and
Mental Health courses at the graduate level.
continued
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46 IMPROVING HEALTH LITERACY WITHIN A STATE
TABLE 4-1 Continued
Campus Response
UCLA–Medicine Session held early in the third year curriculum on
health literacy.
Introduced “teach back” as a technique to verify
patient understanding.
“Low literacy” guidelines and scenarios developed as
teaching resources.
Design & Technology unit developing an online
module based on presentation by Dr. Fernandez
(UCSF).
UCLA–School of Public Many courses in the Community Health Sciences and
Health Health Services Departments describe the prevalence
of low health literacy and the implications for
communication and care delivery. Additionally, all
Masters in Public Health program participants are
required to do field work in underserved communities
where they witness the impact of low health literacy
first hand.
UCSD–Medicine Included in Clinical Foundations Sequence that all
students take during the preclerkship years, and
highlighted particularly regarding issues of adherence
to therapy and cultural competency.
UCSF–Medicine Developed interactive presentation on common medical
scenarios, possible clinical outcomes, and practical
skills for students to use if encountering similar
situations. Integrated into online training in health
disparities.
UCSF–Pharmacy Response pending.
SOURCE: Mangione, 2010.
level of both prose and numeric literacy and has not included specific
competencies such as teach-back and speaking without using medical
jargon. Often, health literacy is incorporated into the part of the curricu -
lum that covers healthcare disparities. While this may be appropriate,
Mangione said, such courses may not convey the fact that a large propor-
tion of older adults have very limited health literacy and that it is not a
condition that only affects minorities.
There are several unresolved issues in the area of health literacy train-
ing, Mangione said. There is little evidence about how much curriculum is
enough to achieve competence in communicating with patients who have
low health literacy. Preparing patients to succeed in following complex
regimens may require a major effort and the use of a variety of tools on the
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part of providers. Given the high rates of low health literacy in California,
health professionals may eventually be required to demonstrate compe-
tence in this area, perhaps as a continuing medical education requirement
for renewal of a medical license.
One of the most widely known resources for health literacy training
for healthcare providers is the AMA Health Literacy Toolkit. The toolkit
provides a train-the-trainer type of curriculum. It includes a Manual for
Clinicians, a video documentary, patient education materials, PowerPoint
slides, participant guides, evaluation and reporting forms, and faculty
instructions. The course is free online or can be obtained from the AMA
bookstore. Over 30,000 physicians and other health professionals have
come to training sessions that used the toolkit, and there are 38 healthcare
teams that have been trained. Individual training is also available online.
The training is free and provides continuing medical education (CME)
credit to clinicians who complete it.
In terms of effectiveness, an evaluation of the program has shown
changes in clinical practice following the training, Mangione said. Train -
ees reported a 72 percent increase in asking patients to repeat back instruc-
tions, 80 percent reported using simple language and avoiding jargon,
and 70 percent reported speaking more slowly after having completed the
training. In terms of self-perception, 71 percent reported that they were
delivering higher-quality care.
Another training resource is the AHRQ Health Literacy Universal Pre-
cautions Toolkit. The universal precautions approach is sensible because
it takes a lot of time to judge whether a patient has low health literacy.
Practitioners should use good communication approaches no matter who
the patient is.
The AHRQ toolkit is designed to help adult and pediatric practices
ensure that systems are in place to promote better understanding by all
patients. The toolkit is divided into manageable modules so its imple -
mentation can fit into the busy day of a practice. It contains a Quick Start
Guide, six steps to take to implement the toolkit, 20 different tools, and
appendixes with over 25 resources such as sample forms, PowerPoint pre-
sentations, and worksheets. Although designed for practices, the toolkit
could be integrated into health professional curricula.
The CDC has health literacy online training to educate public health
professionals about limited health literacy and their role in addressing it
in a public health context. This web-based course can be accessed online.
It takes 1.5 to 2 hours to complete (http://www2a.cdc.gov/TCEOnline/
registration/detailpage.asp?res_id=2074). Trainees can earn continuing
education credits upon course completion. Mangione suggested that
the CDC health literacy training program could be used if there were
a requirement for licensure related to health literacy training. Medical
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48 IMPROVING HEALTH LITERACY WITHIN A STATE
schools and others could adapt or modify materials that have already
been developed.
In addition to these resources that are targeted to continuing educa -
tion, health literacy curricula have been developed for health professional
students at such schools as the University of Chicago, Pritzker School of
Medicine.
Health literacy curricula exist for practicing health professionals, and
dissemination is under way, Mangione said. Integration of the content
of these programs into existing modules on health communication or
health disparities in undergraduate curriculum may be the most feasible
approach. Reinforcing health literacy knowledge and skills in postdoc -
toral training also needs to be addressed and the ACGME may have lever-
age in this area. Consensus on required competencies and assessments are
needed. Finally, as is the case for much of medical education, it may be
impossible to know how much training is enough. But a stronger focus on
health literacy in health professional training and the impact of this train-
ing on healthcare quality and safety are needed, Mangione concluded.
DISCUSSION
Roundtable member Bernard Dreyer, in response to Mangione’s pre-
sentation, discussed the need to teach physicians at multiple levels. At his
institution, he said, first-year medical students are taught communication
skills, including the teach-back method. He questioned whether the les-
sons learned at this early stage of training persist until they are needed
in practice. Training during residency is very important. There is a free
online module on health literacy developed by the American Academy
of Pediatrics (available through its online learning center, pedialink.org).
Unfortunately, very few residencies have taken advantage of it, Dreyer
said, but if the ACGME required it, then every program director would
make sure their residents gained this health literacy training.
Dreyer also raised an issue about the universal precautions approach
to health literacy. The universal approach is appropriate, but he suggested
that very low literacy families or patients really need something more
than the universal approach. Perhaps a two-tiered approach is needed.
Dreyer pointed out that the major problem to overcome is chang-
ing behavior, and to a lesser extent, knowledge. He and his colleagues
conducted a randomized controlled trial in their asthma clinic. All of the
physicians used the teach-back method when providing information to
patients during the trial. As soon as the trial was over, however, the physi-
cians reverted to their usual behavior. Maintaining good practice is a real
issue. More than one-third (37 percent) of the physicians said that they
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THE ROLE OF THE UNIVERSITY
used teach-back consistently. This is likely an overestimate. Dreyer said
that a study published in Pediatrics showed that 23 percent of practicing
pediatricians reported on an anonymous survey that they use the teach-
back method with their patients (Turner et al., 2009). Most of them used
it occasionally, and not always.
Another issue Dreyer raised is the tendency of clinicians to provide
too much information, especially when dealing with a chronic disease.
Physicians and nurses both commit this error. With good intentions, they
want to give the patient all the available information. However, patients
can become overloaded and overwhelmed. It may be advisable to provide
two or three messages a visit. Additional messages could be provided on
subsequent visits.
Mangione agreed with Dreyer about behavior change. Much of the
behavior of physicians is acquired during training through modeling of
senior staff and mentors. Reaching more senior clinicians with training
on health literacy could improve their ability to serve as appropriate role
models. Unfortunately, there are entrenched and engrained poor ways
of trying to convey information to patients, and trainees see these poor
communication patterns. A sea change is needed in terms of how doctors
talk to patients, Mangione said.
Roundtable member Will Ross commented on Schillinger’s descrip-
tion of the public health aspects of health literacy. Low health literacy
really is a public health threat. Ross asked how to engage more institu -
tions of public health, such as the public health trade associations. Are
efforts under way to align these institutions to address population-based
health literacy and remove it from the domain of health care? Schillinger
referred the question to Rima Rudd, but mentioned that the American
Public Health Association (APHA) has been quite engaged in health lit -
eracy, and there are a number of public health schools that have been
at the forefront in terms of curriculum development. He noted that the
crosswalk between schools of public health and schools of medicine,
nursing, dentistry, and pharmacy, while helpful when it happens, is not
occurring consistently.
Rima Rudd, Harvard School of Public Health, stated that the disci-
pline of public health is far behind in its ability to do research in health
literacy, but public health has taken the lead in integrating health literacy
into curriculum. The Harvard School of Public Health has offered a course
on health literacy since 1992. At Johns Hopkins Bloomberg School of
Public Health, health literacy has been taught since the late 1990s. The
Society for Public Health Educators (SOPHE), has also taken lead roles in
advancing health communication with a focus on health literacy.
Roundtable chair Isham raised the issue of the gap between research
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50 IMPROVING HEALTH LITERACY WITHIN A STATE
and implementation. He found Schillinger’s example of the implications
to public health of high salt consumption to be a compelling example of
the gap between knowledge and remedial action. He suggested that a
more active transit system is needed.
