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Appendix A
The Other Side of the Coin:
Attributes of a Health Literate
Health Care Organization
Dean Schillinger, M.D.1
Debra Keller, M.D., M.P.H.2
INTRODUCTION
Background
Health literacy has been defined as “the degree to which individuals
have the capacity to obtain, process, and understand basic health infor-
mation and services needed to make appropriate health decisions” (IOM,
2004). Health literacy encompasses a range of skills that individuals need
to function effectively in a complex and demanding health care environ-
ment. These include literacy skills (reading and writing), oral skills (listen-
ing and speaking), numerical calculation and quantitative interpretation
skills (numeracy), and, increasingly, Internet navigation skills. Nearly
90 million adults in the United States have limited health literacy. While
limited health literacy affects individuals across the entire spectrum of
socio-demographic characteristics, it disproportionally affects more vul -
nerable populations, including the elderly, disabled individuals, people
with lower socioeconomic status, ethnic minorities, those with limited
English proficiency, and people with limited education (National Center
for Education Statistics, 2006). Some of these subgroups are precisely the
1 Division of General Internal Medicine and Health Communications Program, Center
for Vulnerable Populations, Department of Medicine at San Francisco General Hospital,
University of California, San Francisco.
2 Division of General Internal Medicine, Department of Medicine at San Francisco General
Hospital, University of California, San Francisco.
69
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70 MORE HEALTH LITERATE HEALTH CARE ORGANIZATIONS
populations that have the potential to benefit the most from the imple-
mentation of the Patient Protection and Affordable Care Act (ACA), espe -
cially if health literacy barriers are attended to (Martin and Parker, 2011).
Compared to individuals with adequate health literacy, individuals
with limited health literacy have been shown to have greater difficulty in
communicating with clinicians (Schillinger et al., 2004), to be less likely
to participate in shared decision making (Sarkar et al., 2011), and to face
greater barriers in managing chronic illnesses (Cavanaugh et al., 2008;
Williams et al., 1998). Furthermore, limited health literacy appears to be
a barrier to access to care, receipt of preventive and self-management
support services, and safe medication management (Sarkar et al., 2008,
2011; Sudore et al., 2006). Compared to populations with adequate health
literacy, populations with limited health literacy have been shown to
have worse self-reported health (Baker et al., 1997), higher rates of many
chronic conditions (Sudore et al., 2006), worse quality of life, and inter-
mediate markers of health in some chronic conditions (Schillinger et al.,
2002); to experience serious medication errors (Schillinger et al., 2005);
and to have increased risk of hospitalization (Baker et al., 2002) and mor-
tality (Sudore et al., 2006). Compared to patients with adequate health lit -
eracy, patients with limited health literacy exhibit patterns of utilization of
care reflecting a greater degree of unmet needs, such as excess emergency
room visits and hospitalizations, even when comorbid conditions and
health insurance status are held constant (Hardie et al., 2011). It has been
estimated that limited health literacy leads to excess health expenditures
of greater than $100 billion annually (Vernon et al., 2007). Improving lim-
ited health literacy has been identified as a key strategy to improving the
safety, quality, and value of health care (Joint Commission, 2007; National
Quality Forum, 2009).
Rationale for This Paper
The vast majority of research on health literacy has focused on char-
acterizing patients’ deficits, on how best to measure a patient’s health
literacy, and on clarifying relationships between a patient’s limited
health literacy and health outcomes. In addition, most health literacy
intervention research has studied how to intervene with patients who
have limited health literacy.
There is a growing appreciation, however, that health literacy is a
dynamic state that represents the balance (or imbalance) between (a) an
individual’s capacities to comprehend and apply health related knowl-
edge to health-related decisions and to acquire health-related skills, and
(b) the health literacy–related demands and attributes of the health care
system. There is a clear need to develop, in parallel, a set of strategies that
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APPENDIX A
health care organizations can develop and implement to enable patients
and families to access and benefit as much as possible from the range
of health care services and to successfully interact with the range of
health care entities involved in contemporary health care. The need to
address system-level factors that place undue health literacy demands
on all patients utilizing the health care system has been emphasized by
a variety of government entities, public policy organizations, trade orga -
nizations, and research funders, including the Surgeon General’s Office
(U.S. Surgeon General, 2006), the American Medical Association Foun-
dation (AMA, 2007a, 2007b), the Joint Commission (Joint Commission,
2007), America’s Health Insurance Plans (America’s Health Insurance
Plans, n.d.), the U.S. Department of Health and Human Services Office of
Disease Prevention and Health Promotion (HHS, 2010), the Agency for
Healthcare Research and Quality, and the National Institutes of Health.
There is perhaps no more critical time than now to shift focus from the
health literacy skills of patients to the health literacy–promoting attributes
of health care organizations. Enactment of the Patient Protection and
Affordable Care Act (ACA)3 provides opportunities to improve the expe-
rience of care and the health outcomes for limited–health literacy popu-
lations through insurance reform, Medicaid expansion, and the estab-
lishment of health insurance exchanges. Maximizing this opportunity
will require that health care organizations attend to the communication
needs of limited–health literacy populations. The success of a number of
ACA-related redesign initiatives, such as patient-centered medical homes
(PCMHs) and accountable care organizations (ACOs) will depend on the
stewardship of health care organizations committed to prioritizing the
needs of limited–health literacy populations. The expected benefits of
insurance expansion will depend on individuals’ ability to navigate the
complexities of the insurance exchange; without special assistance and
institutional commitments, many individuals may not fully benefit from
the new system (Martin and Parker, 2011; Sommers and Epstein, 2010).
In addition, through the Health Information Technology for Economic
and Clinical Health Act (HITECH Act) legislation created to stimulate the
adoption of electronic health records and supportive technology, health
care providers are being offered financial incentives for demonstrating
meaningful use of electronic health records (EHRs), including sharing
detailed health information with patients electronically. Whether the ben -
efits of health information technology (IT) will accrue for patients with
the greatest needs for communication support will depend on the uptake
of health IT among populations with limited health literacy. This, in turn,
3 111th Congress, 2nd session. March 23, 2010. Patient Protection and Affordable Care Act.
In Public Law 148.
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72 MORE HEALTH LITERATE HEALTH CARE ORGANIZATIONS
will depend on the extent of investments made to tailor products to the
needs of these populations and the health systems that disproportionately
care for them.
This paper attempts to identify and describe a set of goals or attri-
butes that diverse health care organizations can aspire to so as to mitigate
the negative consequences of limited health literacy and improve access
to and the quality, safety, and value of health care services. We describe
organizations that have committed to improving and reengineering them-
selves as “health literate health care organizations” so as to better accom -
modate the communication needs of populations with limited health
literacy, which reinforces the notion that the health care sector shares
significant responsibility in promoting health literacy (IOM, 2004).
A foundational principle of health literate health care organizations
is that they make clear and effective patient communication a priority
across all levels of the organization and across all communication chan-
nels. These organizations recognize that health literacy skills are highly
variable among the populations they serve and that many of their systems
are poorly designed to take into account limited health literacy skills.
They also recognize that literacy, language, and culture are intertwined
and, as such, their health literacy efforts complement and augment effort
to improve their organizations’ linguistic and cultural competencies and
capacities. These organizations also recognize that clinician–patient mis -
communication is very common, and they apply a “universal precau -
tions” approach to communication, whereby communication is simplified
to the greatest extent possible and comprehension is not assumed to be
achieved unless it can be demonstrated. “Universal precautions” repre-
sents a public health approach to communication that attempts to ensure
effective basic communication for the largest proportion of the popula-
tion at the lowest cost. Health literate health care organizations, however,
also pay particular attention to ensuring that patient skill-building efforts
reach the populations most in need by making special investments, and
they recognize that special system redesign efforts may be needed to fur-
ther reduce health literacy demands in order to better match the health lit -
eracy demands of the health care system with the skills of subpopulations
so as to mitigate the untoward effect of individuals’ limited health literacy
skills on their health. A health literate health care organization that openly
acknowledges the centrality of clear and interactive communication and
invests in optimizing communication for more vulnerable populations
can realize benefits for patient access, satisfaction, quality, and safety;
can reduce unnecessary patient suffering and costs; can enhance health
care provider well-being; and can improve its risk management profile.
Finally, a health literate health care organization recognizes the centrality
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APPENDIX A
of interprofessional communication as an important means to reduce the
informational demands on patients, especially during transitions in care.
The most proximate goals of these organizational investments are
to maximize the extent of patients’ and families’ capacities to (a) com -
prehend and engage in recommended preventive health behaviors and
receive preventive health care services if desired; (b) recognize changes in
health states that require attention and access health care services accord-
ingly; (c) develop meaningful, ongoing relationships with health care
providers based on open communication and trust; (d) obtain timely and
accurate diagnoses for both acute and chronic health conditions; (e) com -
prehend the meaning of their illness, their options for treatment, and the
anticipated health outcomes; (f) build and refine the skills needed to safely
and effectively manage their conditions at home and to communicate with
the health care team when illness trajectory changes; (g) report their com -
munication needs or comprehension gaps; (h) make informed health care
decisions that reflect their values and wishes; and (i) effectively navigate
transitions in care. In addition, these investments can enable people to
make more appropriate health care coverage choices based on their own
health needs or those of their families, to better comprehend the range of
benefits and services available to them and how to access them, and to be
more aware of the financial implications of their health care choices so as
to improve decision making.
The list of attributes and goals for health literate health care organi -
zations included in this paper is by no means exhaustive, and it simply
represents our attempt to synthesize a body of knowledge and practice
supported to the greatest extent possible by the state of the science in the
young field of health literacy. The attributes and goals that we outline
are most well-developed for and most clearly applicable to organizations
that provide direct care to patients. However, a majority are also relevant
to the broader range of organizations and institutions that comprise the
modern health care system, such as health insurers and health plans,
pharmacies, pharmacy benefits managers, disease management compa-
nies, and vendors of health IT and patient education products. We see this
paper less as a definitive response to the challenge of defining a “health
literate health care organization” and more as an attempt to advance
a vision of how organizations should evolve to be more responsive to
the needs of populations with limited health literacy in tangible ways,
thereby improving care for all.
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74 MORE HEALTH LITERATE HEALTH CARE ORGANIZATIONS
Effective
Bidirectional
Communication
Embedded Policies
and Practices
Augmented Workforce
Accessible Educational
Technology Infrastructure
Organizational Commitment
FIGURE A-1 Features of a health literate health care organization.
ATTRIBUTES AND GOALS FOR HEALTH LITERATE
Figure 2-1
HEALTH CARE ORGANIZATIONS
When making communication an organizational priority, health liter-
ate health care organizations embrace a package of central principles and
practices with respect to organizational structures, processes, personnel,
and technologies for enabling patient care and population management
so as to mitigate the untoward effect of individuals’ limited health literacy
skills on their health and health care costs (Figure A-1).
1. Establish Promoting Health Literacy as
an Organizational Responsibility
Organizational leaders should establish a culture of clear commu-
nication. Leadership should raise organization-wide awareness about
the importance of health literacy and clear communications across all
facets of the health care system and should participate in local, state, and
national efforts to improve organizational responses to limited health
literacy. Organizational leaders should make clear statements about the
responsibility of all sectors of their health care system to advance patients’
and families’ capacities to learn about their illness, carry out self-care,
effectively communicate, and make informed decisions. Leaders should
create an organizational expectation that patients, families, and caregivers
are well supported in understanding and managing their health and that
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APPENDIX A
suboptimal communication outcomes due to lack of effort, expertise, or
infrastructure are viewed as a systems failures and are addressed through
systems redesign. Health literate health care organizations may choose to
employ a health literacy officer or high-level health literacy task force to
ensure that health literacy is deeply, explicitly, and continually integrated
into quality-improvement activities, cultural and linguistic competence
efforts, patient safety initiatives, and strategic planning. Ongoing orga -
nizational assessments should be carried out to reflect organizational
performance and progress in promoting health literacy. Promoting health
literacy should be considered when planning organizational operations,
job descriptions, evaluation metrics, and budgets. Systems can be put in
place to ensure that members of the health care team have adequate time
and incentives to learn and implement basic health literacy tools as well
as to access more sophisticated resources when necessary. Resources can
be earmarked for patient education experts and community advisory
group members who can both train frontline providers and develop and
administer specialized curricula to patients with demonstrated need.
2. Develop a Culture of Active Inquiry, Partner in Innovation, and
Invest in Rigorous Evaluations of Operations Improvements
While the untoward health and economic outcomes associated with
limited health literacy are now established, the value of existing interven -
tion research to health literacy programming at the operations level is
hampered by the relative infancy of the field and inconsistent results. A
recent systematic review of interventions designed to mitigate the effects
of limited literacy found consistent results for only a select number of
discrete design features aimed at improving participant comprehension
(presenting essential information by itself or first, presenting information
so that the high number is better, presenting numerical information in
tables rather than text, adding icon arrays to numerical information, and
adding video to verbal narrative) (Sheridan et al., 2011). In addition, some
studies found that intensive mixed-strategy interventions focusing on
self- and disease-management reduced emergency and hospital utiliza -
tion as well as disease severity. The common features of mixed-strategy
interventions that changed health outcomes included having a basis in
theory, carrying out a pilot test, being high intensity, having an emphasis
on skill building, and being delivered by a health professional. Finally,
the relative paucity of real-world implementation research involving rep -
resentative populations in nonacademic health care settings has further
limited the value of prior research efforts for informing health literacy
programming at an organizational level. Rather than waiting for others
to identify solutions, health literate health care organizations develop
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76 MORE HEALTH LITERATE HEALTH CARE ORGANIZATIONS
mutually beneficial partnerships with health literacy researchers spanning
a range of disciplines to help develop, identify, implement, and evaluate
health literacy interventions whose results will have an immediate rel -
evance to organizational processes (Allen et al., 2011).
3. Measure and Assess the Health Literacy
Environment and Communication Climate
A health literate health care organization establishes ongoing mecha-
nisms and metrics to measure the success of its system in achieving the
health literacy attributes described above, to evaluate special health liter-
acy programs, and to identify areas for further improvement. Such organi-
zations perform institutional health literacy reviews focused on the health
literacy environment and the variety of communication and support sys -
tems in place. Templates for such reviews have been made available by
the Agency for Healthcare Research and Quality (AHRQ) for both health
practices (DeWalt et al., 2010) and pharmacies (Jacobson et al., 2007) and
can be adjusted to apply to any health care organization. An organiza -
tions can undertake a 360-degree assessment of its communication climate
and culture. For example, there is evidence that a better organizational
communication climate, as measured by the Communication Climate
Assessment Tool, is associated with better quality of care (Wynia et al.,
2010). In addition, if investments have been made for the educational
support infrastructure as described above, organizations can monitor
patient understanding of their medical conditions both on individual and
population levels. Organizations can also track provider implementation
of best practices in communication and can institute additional educa -
tional initiatives and incentives to encourage adoption of these practices.
Health plans, health insurance organizations, and Medicare prescription
benefits plans will need to develop assessment tools similar to those of
other customer service industries but that include the attributes described
above. An example of a self-assessment tool recently developed for health
insurers is the Health Plan Organizational Assessment of Health Literacy
Activities developed by Gazmararian and colleagues for America’s Health
Insurance Plans (America’s Health Insurance Plans, n.d.; Gazmararian et
al., 2010). This tool assesses health plans in six areas: printed member
information, Web navigation, member services/verbal communication,
forms, nurse call lines, and member case/disease management.
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APPENDIX A
4. Commission and Actively Engage a Health literacy
Advisory Group That Represents the Target Populations
Too often end users with limited literacy skills are consulted only for
the evaluation component of an intervention in order to assess established
curricula or else are never consulted at all. As a concrete example of
community engagement, health literate organizations can involve health
literacy advisory groups in the development and implementation of clear
communication strategies and in the formulation of organizational poli -
cies around health literacy and clear communication. The advisory group
can also participate in needs assessments, review educational materi-
als, test new health IT applications, and be part of the evaluation team
assessing the successes of an organization’s health literacy programming.
Health literate health organizations involve members of lower-literacy
populations, adult educators, and experts in health literacy in the devel -
opment, implementation, and assessment of communication strategies
and in ensuring that user-centered design principles are adhered to and
that members of the target community are key collaborators in interven-
tion design and implementation. Management teams can commission an
advisory group of community literacy experts (including educators and
limited-literacy populations) for this purpose. For example, the Depart -
ment of Health and Human Service’s National Action Plan to Improve Health
Literacy highlights the collaborative efforts of the Iowa Health System
and the New Readers of Iowa as an exemplary model for partnering
with community-based organizations as a means of enabling community
involvement, guidance, and oversight regarding health literacy activities
(HHS, 2010). Some advisory groups evolve into ongoing patient learning
resource centers or serve as key connectors to community adult literacy
programs.
5. Provide the Infrastructure to Avail Frontline Providers,
Patients and Families with a Package of Appropriate,
High-Quality Educational Supports and Resources
While frontline clinicians can develop the skills and attitudes to be
clear and effective communicators and to assess patients’ level of compre-
hension and preparedness, they cannot independently provide the depth,
quality, and complexity of communication needed for every patient and
every situation, nor can they consistently and reliably carry out the itera -
tive assessments and educational efforts required to maximize patient
understanding and skill acquisition over time. Health literate health care
organizations recognize that promoting patient comprehension and build-
ing patient skills requires high-quality human, technical, and pedagogi -
cal resources that are easily accessible across the organization. As such,
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they provide clinicians and patients access to a functional infrastructure
and a package of high-quality educational supports, including written
materials, video material, online material, and in-person and group-level
education that adheres to clear communication and user-centered design
principles. While adjunctive written health information serves as a criti -
cal method of reinforcing health knowledge and behaviors introduced
during in-person interactions, it can only serve as such if its language,
content, and design elements facilitate comprehension. Health literate
health care organizations can also establish a formal process of involving
the members of the low-literacy community via a health literacy advisory
board in planning, developing, and testing written health information
to ensure appropriateness. Multiple tools are available to assist health
educators and administrators tasked with developing health-related writ-
ten materials (NCI, 1994). Key components include attention to the use
of simple, everyday words; short sentences; appropriate graphics; and
well-designed layouts. There should also be a focus on the content of the
health material, with an emphasis on “chunking” information into dis -
crete, manageable, content and focusing on actionable health items rather
than general information.
Health literate health care organizations make a commitment to pro-
viding patients and families with communication and educational sup-
port beyond the face-to-face clinician visit to the greatest extent possible.
This support can involve visit preparation, post-visit reinforcement, self-
management support, decision support, and educational reinforcement
during transitions in care. This requires a health literate health care orga-
nization to develop a functional educational infrastructure to support
providers, patients, and caregivers. Ideally, many educational materials,
decision aids, and supports are linked to the organization’s electronic
health record. While there are many institutions and organizations that
produce such material, to our knowledge there is no single clearing-
house that provides an all-encompassing compendium of health literacy–
appropriate material. There are, however, publicly available websites
for patient education that provide certain materials that may be more
comprehensible to the average U.S. patient (e.g., Medline-Plus has an
easy-to-read icon for material written at the fifth- through eighth-grade
levels and “tutorials” written at the fifth- and sixth-grade levels, and it
also has an extensive library of materials in Spanish) (NLM, 2012), and
some vendors of patient education materials promote the readability of
their products. Self-management support programs have been found to be
effective for populations with chronic disease and limited health literacy
(Baker et al., 2011a; Rothman et al., 2004; Schillinger et al., 2009). Deci -
sion aids that use simplified text and complementary video can improve
decisional intent in dementia care planning in populations with limited
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APPENDIX A
health literacy (Volandes et al., 2007, 2010), and decisional aids developed
through participatory methods can improve decision making in breast
cancer care, reducing decisional conflict to a greater degree among those
with the least knowledge (Belkora et al., 2011a, 2011b). Finally, the use of
virtual patient advocates (embodied conversational agents) as health edu -
cators as a complement to in-person discharge education has been shown
to reduce rehospitalization, with similar benefits across health literacy
levels (Bickmore et al., 2009).
Health literate health care organizations have an instrumental role
in influencing the marketplace of patient communication products by
demanding rigorous testing with and adaptation for populations with
limited health literacy and in supporting the development of national
certification standards for print and digital material that is accessible to
these populations.
6. Leverage Accessible Health Information Technology (IT) to Embed
Health Literacy Practices and Support Providers and Patients
Because effective communication can be time-consuming and because
of the high variability in both provider communication skills and patient
literacy and learning styles, health IT holds significant promise for
enabling patients to provide information and for providing patients with
assistance in learning about their conditions and treatments, making deci-
sions, and managing their conditions at home. In addition to enabling
forms of communication beyond the written word (visual aids, spoken
word), health IT can provide both standardized and tailored informa -
tion based on patient information or needs and can carry out iterative
education to ensure comprehension and mastery, thereby embedding
an established health literacy practice. If developed and pretested with
populations with limited health literacy, such health IT applications can
be highly effective and provide opportunities to deliver education and
elicit communication across multiple modalities. Examples include auto -
mated telephony for diabetes self-management in the home (Schillinger et
al., 2009) and embodied conversational agents for discharge instructions
at the bedside (Bickmore et al., 2009). These types of applications can be
employed across a range of patient informational and communication
needs and strategies, such as pre-visit preparation, after-care summaries,
or proactive outreach for health care maintenance, appointment keeping,
or medication adherence, among others. AHRQ is currently supporting
an effort to develop a set of standards to determine the attributes of elec -
tronic health communication resources that make them appropriate for
populations with limited health literacy. As described above, health liter-
ate health care organizations not only show a willingness to employ such
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13. Make Systems More Navigable and Support Patients
and Families in Navigating the Health Care System
Navigation within the health care system involves interacting with
the built environment and finding one’s way between locations. In addi -
tion, it requires an ability to accomplish the myriad tasks needed to
manage health within an increasingly complicated and fragmented medi-
cal system. It involves scheduling specialist appointments, enrolling for
insurance services, understanding one’s health care benefits, dealing with
pharmacy benefits management companies, finding locations for diag -
nostic studies, and connecting with community agencies. Health literate
health care organizations work at establishing a shame-free environment
so that patients and their families will be comfortable asking for help
when needed. Employing clear signage and designing patient-friendly
office procedures, including establishing a welcoming environment; offer-
ing assistance with all literacy-related tasks, such as reading and complet-
ing forms; and assisting patients with scheduling and finding referral and
diagnostic test locations can help overcome these challenges.
Examples of design interventions that have made systems more navi-
gable, especially for populations with limited health literacy, include elec-
tronic referrals to specialists (Kim-Hwang et al., 2010), which minimize
the burden on patients to aggregate and master complex health informa-
tion related to their consultations. Medical homes, with their promise of
“one-stop-shopping,” can also simplify service delivery. The One-e-App
program, an innovative web-based system, provides an efficient one-stop
approach to enrollment in a range of public and private health, social
service, and other support programs. One-e-App streamlines the appli -
cation process through one electronic application that collects and stores
information, screens and delivers data electronically, and helps families
connect to needed services (California HealthCare Foundation, 2012).
Organization leadership can also enlist a team to perform an environ-
mental assessment as a means of identifying areas in the built environ -
ment that may represent literacy barriers, such as poor or absent signage;
absence of navigational guides, including maps; inconsistent labeling of
locations and services; and lack of present and available personnel who
can provide assistance (Rudd and Anderson, 2006; Sarkar et al., 2010a).
These types of assessments are not just the responsibility of traditional
health care delivery units (e.g., hospital or ambulatory clinic) but also of
organizations in the health insurance industry, whose processes for enroll-
ment, billing, prior authorization, and claims are notoriously difficult to
navigate, often redundant, and generally confusing.
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APPENDIX A
14. Recognize Social Needs as Medical Concerns
and Connect People to Community Resources
Individuals with limited health literacy are often subject to other
social vulnerabilities. These social needs, including housing instability,
food insecurity, lack of transportation, unemployment, social isolation,
legal concerns, and interpersonal violence, often have direct medical
consequences and affect patients’ ability to effectively engage in self-
management. However, members of the health team often miss the oppor-
tunity to assess patients for these conditions (Fleegler et al., 2007). Even
when providers do identify social needs, health systems may not have
the infrastructure and manpower to connect patients to needed social
services.
There are some examples of efforts by health care organizations to
partner with community resources. The Health Leads program (Health
Leads, 2011; Robert Wood Johnson Foundation, 2011), a volunteer-driven
program based in outpatient clinics, allows medical providers to “pre-
scribe” social service needs such as food, housing, and job training. The
prescription is then “filled” by one of the college volunteers who work
with patients to connect them with needed social services and who can
continue to follow up in the event that there is additional need. The Rob -
ert Wood Johnson Foundation and AHRQ’s collaborative Prescription
for Health initiative funded community-based projects to explore how
primary care practices can make linkages with community resources to
promote healthy behavior. While many of these projects were successful,
an overall analysis of these programs suggests that sustaining linkages
required continued communications between the health care system and
the community resources and argues for a system in which clinical ser-
vices and community services are integrated (Etz et al., 2008; Woolf et al.,
2005). At a minimum health systems can develop a clearinghouse of local
resources, identify members of the health care team to become champions
in connecting with resources, and partner with case managers or social
workers to assist with linking patients to resources.
Ultimately, unaddressed “non-health” social needs of patients will
prevent patients from fully benefiting from the health care system and
partnering in care. A health literate organization views linking patients
with social resources as a fundamental part of providing medical care and
ensures that there are systems in place to ensure that these connections
are made.
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15. Create a Climate in Which Asking Questions
Is Encouraged and Expected
Patients with limited health literacy have been found to be less likely
to ask questions of their providers or to have interactive communica -
tion in a visit. They may not disclose their challenges with reading and
comprehension due to shame (Parikh et al., 1996). Interventions to “acti-
vate” patients to be more involved and to advocate for themselves hold
promise as a means to increase the asking of questions and interactivity.
Health literate health care organizations encourage and expect patients
to be asking questions of their health care teams. The National Safety
Foundation’s Ask Me 3 campaign attempts to facilitate communication
between patients and providers by encouraging patients to ask the fol-
lowing questions:
1. What is my main problem?
2. What do I need to do?
3. Why is it important for me to do this? (National Patient Safety
Foundation, n.d.)
Orienting providers to these questions, displaying posters, and dis -
tributing brochures encouraging the use of the Ask Me 3 questions may be
an effective step in empowering patients to ask more questions, especially
when it is linked with clinician training in health literacy, including the
importance of minimizing patient shame (Mika et al., 2007). Additional
resources, such as the AHRQ’s “Questions are the Answers” website
(AHRQ, n.d.) can help patients formulate a list of questions to remember
to ask their providers during a medical visit. Both of these initiatives can
be strengthened by having allied members of the health care team encour-
age and remind patients to think of questions while preparing for their
visits and to focus learning around these questions between visits.
16. Develop and Implement Curricula to Develop Mastery
of a Threshold-Level Set of Knowledge and Skills
In order to improve skill building and to help patients reach behav -
ioral goals as well as to track patient progress over time and across set-
tings, health literate health care organizations develop curricular pro -
grams that acknowledge and are designed around the learning constraints
related to patients’ working memory (generally a fixed capacity) and cog-
nitive load (the learning demands, based on the complexities and quantity
of the material). Baker and colleagues (2011b) describe six principles in
helping patients achieve their learning goals:
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APPENDIX A
1. Define a limited set of critical learning goals and eliminate all other
information that does not directly support the learning goals.
2. Present information in discrete, predetermined “chunks.”
3. Determine the optimal order for teaching the topics.
4. Develop plain-language text to explain essential concepts for each
goal, and employ appropriate graphics to increase comprehension
and recall.
5. Confirm understanding after each unit, perform tailored instruc-
tion until mastery is attained, and review previously learned con -
cepts until stable mastery is achieved.
6. Link all instruction to a specific attitude, skill, or behavioral goal.
These principles can be integrated into health-education initiatives
in multiple health care settings being executed by a variety of providers,
including physicians, nutritionists, pharmacists, health-at-home provid -
ers, and health educators. Having agreement on a shared curriculum can
facilitate continued, consistent, and complementary education in different
settings and across time to reinforce and build skills to approach mastery.
17. Continually Assess and Track Patient Comprehension, Skills,
and Ability to Problem-Solve Around Health Conditions
While health literate health care organizations create “shame-free”
environments where the asking of questions by patients is encouraged
and expected, these organizations also build in procedures and systems
to periodically assess and document patient comprehension and basic
problem-solving skills across a range of common conditions that rely
on self-management. Exemplar conditions include congestive heart fail -
ure, diabetes, asthma/chronic obstructive pulmonary disease, and anti -
coagulant care. Examples of skills and abilities important when dealing
with heart failure include knowing one’s target weight, knowing what is
involved in a daily self-check (e.g., leg swelling, weight change, changes
in patterns of shortness of breath, and lightheadedness or dizziness),
and knowing how to self-titrate one’s diuretic pill and when to call the
medical home to prevent deterioration (Baker at al., 2011b; DeWalt et al.,
2009). Examples pertaining to anticoagulant care for stroke prevention
include knowing the signs and symptoms of stroke, knowing the rec-
ommended frequencies of blood testing and their meanings, accurately
reporting one’s anticoagulant regimen, being aware that the anticoagu -
lant medications interact with many others medications and therefore
require vigilance, and recognizing the clinical relevance of bleeding (Fang
et al., 2006). Such assessments can identify individuals at risk for poor
comprehension, target immediate educational efforts, and provide an
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90 MORE HEALTH LITERATE HEALTH CARE ORGANIZATIONS
indication for additional educational supports so that improvements or
even mastery can be achieved over time. These assessments can also serve
as valuable and dynamic information to share with the broader health
care team working to improve a patient’s health literacy so that educa-
tional efforts reinforce, rather than compete with, each other and so that
progress can be tracked. These efforts may also identify individuals with
heretofore unrecognized and common learning barriers beyond limited
literacy skills, such as cognitive impairment, learning disabilities, and
hearing or visual impairment.
18. Recognize and Accommodate Additional
Barriers to Communication
Limited health literacy is one of a number of common communi-
cation challenges patients face. Limited English proficiency, cognitive
decline, hearing and visual impairment, learning disabilities, and mental
health problems all may create barriers to clear communication. Many
of these communication barriers travel together. When these challenges
overlap, such barriers tend to compound or even overwhelm literacy-
related obstacles (Sudore et al., 2009). A health literate health care organi -
zation prioritizes providing culturally and linguistically competent care
and seeks to implement guidelines and recommendations for culturally
and linguistically appropriate services (HHS, 2001). Health literate orga-
nizations recruit and cultivate a culturally and linguistically diverse staff
and provide training in best practices working with medical interpreters
for all members of the health care team. These organizations also have
resources and procedures in place to identify and remediate hearing loss
and visual impairment as well as to identify cognitive impairment that
would require case management or engagement of surrogates and family
caregivers.
CONCLUSION
Despite a growing understanding that health literacy challenges rep-
resent a mismatch between patients’ health literacy skills and the literacy
demands of the greater health care system, until recently the majority
of health literacy efforts have focused on interventions directed to the
patient. The opportunities for systems redesign surrounding the imple -
mentation of the Patient Protection and Affordable Care Act, including
health insurance exchanges and Medicaid expansion, the advanced medi-
cal home, accountable care organizations, and health IT expansion, pro -
vide momentum for organizations to integrate principles of health literacy
into organizational objectives, infrastructure, policies and practices, work-
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APPENDIX A
force development, and communication strategies. In this paper, we intro-
duce a set of attributes, goals, and foci for institutional investment that
health literate health care organizations can embrace to begin to address
the system-level factors that can prevent patients and families from fully
benefiting from the health care system. This list of attributes and goals,
which is by no means exhaustive, provides a roadmap for organizational
change and relates most clearly to organizations that provide direct care
to patients. However, a majority of the goals and attributes are also rel -
evant to the broader range of organizations, stakeholders, and institutions
that comprise the modern health care system. We see this paper less as the
definitive response to the challenge of defining a “health literate health
care organization” and more as an attempt to advance an optimistic vision
of how organizations should evolve to be more responsive to the needs of
populations with limited health literacy in tangible ways, thereby improv-
ing care for all.
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