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A Theory-Based Approach to Improving Health Literacy

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 A Theory-Based Approach to Improving Health Literacy

Will Ross, M.D, M.PH, Arthur Culbert, Ph.D, Charles Gasper, and
James Kimmey, M.D, M.P.H.
 Will Ross 2

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ABSTRACT

Health literacy, from a reductionistic standpoint, could be viewed as a

complement of individual skills needed to process and act on health information.
However, such a limited perspective unnecessarily removes the individual from
the broader array of social forces that influence health. Indeed, an ecological
approach provides the contextualization needed to identify individuals with
varying degrees of health literacy and construct long-term solutions to reduce
the adverse health consequences of poor health literacy. The dearth of evidence-
based outcomes data on health literacy interventions confirms the limitations of
strategies that are not based on an ecological framework.
A more reasoned approach to improving health literacy embraces the
ecological model when designing interventions and employs theory-based logic
models to facilitate actualization of the comprehensive model. Adopting an
integrated behavioral health theory that operationalizes constructs of perceived
benefits and threats, self-efficacy and social norms, along with broader social
planning theory, could result in a powerful tool to design effective multilevel
interventions to improve health literacy. The currently limited empirical data
on the application of theory-based logic models to health literacy lends urgency
to such a rigorous analysis, especially given the dramatic personal, economic,
and health systems impact of poor health literacy.
Efforts to improve health literacy in Missouri were guided by the
adoption of a theory-based logic model and informed by a multidisciplinary
team of community and academic stakeholders familiar with ecologic models.
This paper outlines the series of efforts that culminated in the creation of the
Health Literacy Missouri Initiative, which has been tasked to strengthen the
evidence base for health literacy, improve health literacy through education and
community collaboration, and create systemic change in the health system
starting at the patient-provider interface. We immediately appreciated the
universality of the resulting model, inherent in the precept that health literacy is
woven into the fabric of good health; adorned by the group, not the individual.

Keywords: Health literacy, logic model, behavioral health theory, community

planning
 Will Ross 3

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INTRODUCTION

Health literacy, as defined by the 2004 Institute of Medicine report,

Health Literacy: A Prescription to End Confusion, is the degree to which
individuals have the capacity to obtain, process, and understand basic
information and services needed to make appropriate decisions regarding their
health.1 The report noted that adults with limited health literacy have less
knowledge of disease management, report poorer health status, and are less
likely to seek preventive care. By some accounts, low health literacy costs the
U.S. health care industry $73 billion a year in misdirected or misunderstood
health care services.2-4
A wide range of measurement instruments have been developed that
allow categorization of individuals as having low, average, or high levels of
health literacy.5-8 The reasoning follows, pari passu, that those individuals who
acquire the skill set necessary to improve their health literacy will be able to
successfully navigate the complex health care maze leading to healthy and
productive lives.9-12. Fortuitously, most health professionals and social scientists
who work in the field of health literacy acknowledge the need to develop
strategies that address all facets of the health care encounter.
Materials devoted to improving health communications have targeted
patients, health care providers, health care vendors, and policymakers involved
in health care .7,13-15 A critique of the effectiveness of health literacy programs
has demonstrated mixed results.16 Those programs that demonstrated the
greatest impact have highlighted the broad array of social forces that affect
health and health care delivery.13, 17-19 Arguably, it is difficult to envision any
program attempting to improve health literacy that does not embrace the social
determinants of health.20
Of equal import is the belief that improved health literacy benefits
society as a whole1; consequently, efforts to ameliorate the health and economic
burden of populations with low health literacy remains the responsibility of a
broad swath of stakeholders in the U.S. An effective strategy to improve health
literacy should incorporate multi-level interventions that in practice promote
partnerships among individuals and their families, educators, health providers
and community stakeholders, and policy-makers at the local, state, and federal
level.21-22 Collectively, such an empowered group would be able to access the
requisite social, financial and political capital needed to “move the needle”
towards improved population health.
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The literature is replete with examples of health literacy programs

tailored for general and at-risk communities; however evidence-based outcomes
studies that affirm the benefits of health literacy interventions on behavioral
modification are relatively limited.16 Theory-based interventions have emerged
as powerful methods for promoting and sustaining behavioral change 23-25;
concomitantly, health literacy initiatives that incorporate behavioral theory are
more amenable to acceptance by the targeted population and are more likely to
be associated with positive, behavioral change.
Evaluating the effectiveness of comprehensive health literacy
initiatives, including those based on behavioral theory, is expectedly
cumbersome given the complexity of analyzing far-ranging, upstream
determinants of health literacy such as poverty, educational attainment,
neighborhood development, social norms, etc26. In such situations logic models
are particularly useful tools that provide better documentation of outcomes and
shared knowledge about what works and why.27 Incorporating behavioral theory
into logic models allows more comprehensive program design and planning –
effectively linking ideas to explain underlying program assumptions.23, 27 This
paper illustrates how a statewide effort to increase health literacy was informed
by a theory-based logic model and validated by a multidisciplinary team of
community and academic leaders. The theoretical framework of the model –
Health Literacy Missouri, facilitates its adoption by diverse cultures in
developing, newly industrialized, and developed countries.

EARLY ROOTS: THE REGIONAL HEALTH COMMISSION HEALTH

LITERACY TASK FORCE

Conceptualization of a health literacy campaign began in June 2004

with the creation of the Saint Louis Regional Health Commission’s Health
Literacy Task Force. The Task Force was charged with the development of
executable health communications and health literacy program initiatives that
were aligned with the Regional Health Commission’s strategic objectives to
improve access to health care services, reduce health disparities, and improve
health outcomes for the medically underserved population of the Saint Louis
metropolitan region. At its inception, the Task Force identified several key
behavioral theory constructs on which to base an intervention strategy.
First, interventions that promote self-efficacy, boosting individual’s
skills and confidence in managing and assessing their health problems would
more likely culminate in an “activated” patient who would pursue a more
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durable partnership with his health provider. 28 Secondly, interventions should

be initiated at the earliest possible stage of development to improve basic
literacy skills, when such skills are beginning to develop. The environment
plays a critical role at this juncture, wherein health beliefs are born and social
norms established through exposures to mass media and social marketing,
popular music, cultural and community centers, religious institutions, and
schools.29 Finally, a readiness to transition through stages of change occurs as
adults acquire the confidence and motivation to contemplate healthy behavior,
either through sheparding by trained community health ambassadors, or
enhancing skills through adult education. Adult education curricula have
traditionally included health lessons related to hygiene, nutrition, and healthful
habits. Health-related content in adult education classes would be more likely to
engage adult students and subsequently increase learner interest, motivation, and
persistence.30-31

ESTABLISHMENT OF THE MISSOURI FOUNDATION FOR HEALTH –

HEALTH LITERACY COORDINATING COUNCIL

Concurrent with the initiative by the St. Louis Regional Health

Commission to enhance the health literacy of patients cared for by the newly-
created St. Louis Integrated Health Network, the Missouri Foundation for Health
embarked on a statewide Health Literacy Enhancement Initiative. Recognizing
that reducing health disparities required sustained collaboration across many
boundaries and disciplines, the Foundation convened stakeholders from across
Missouri, including those at an urban, private academic institution, a
micropolitan public academic center, and a rural public academic center. The
newly-convened Health Literacy Coordinating Council adroitly adopted three
guiding principles: engage community partners, innovate strategically and
collaboratively, and put the consumer first. Through this process, the health
literacy initiative would fulfill its mission of improving Missouri’s health
through the provision of broad access to plain language health information,
community-based education collaboratives, and educational resources that
would help providers and consumers communicate more effectively.

DEVELOPMENT OF A THEORY-BASED HEALTH LITERACY LOGIC

MODEL
A review of grants funded by the Missouri Foundation for Health, a
large U.S. healthcare foundation, indicated a large number of proposals
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advocated health promotion interventions which would ultimately improve

health literacy. Although well-intentioned, many of the initiatives lacked a
theory base which could guide program evaluation and subsequently program
effectiveness. Theory-based programming projects clarity on an observable
event by systematically characterizing the relationship of the observation to a set
of variables.23 If programmers understand why behaviors occur they can then
target specific behavioral antecedents and structure the most efficient and
effective interventions to modify the behavior.
Theory-based evaluation probes the assumptions on which programs
are based, essentially querying what effect each particular activity will have,
what the program does next, what the expected response is, and eventually what
leads to the desired outcome32-38. The posited benefits of theory-based
evaluation include advantages to program planning and modification,
advantages for the growth of knowledge about human behavior and behavior
change, and the advantages for the planning and conduct of the evaluation of the
specific program.26
Theory-based programming and evaluation have well-demonstrated
effectiveness in designing interventions that influence behavior toward a desired
outcome26. In such settings the behavioral modifiers and the major covariates
that interact with those modifiers can be identified a priori. When the Missouri
Foundation for Health elected to design an initiative that would enhance the
health literacy of its entire service area, it confronted a culturally diverse
population fragmented into rural and urban components, in which behavioral
antecedents associated with low health literacy were less readily identified.
Additionally, the marked heterogeneity of social factors that influence health
literacy did not lend itself to conventional evaluation methodology. The
construction and adoption of a theory-based logic model permitted a more
graphic display of behavioral antecedents and their hypothesized relationships,
along with the array of programmatic activities which would lead to the desired
outcome of improved health literacy and healthier lives.27
A recent report by J. Vernon and colleagues2 detailed the high
economic costs of low health literacy to the United States economy, which are in
the range of $106 billion to $236 billion annually. In Missouri, these costs are
between $3.3 billion and $7.5 billion each year. In light of the remarkable
economic impact of low health literacy, the goals of improved health literacy
and improved quality-adjusted life-years can be achieved if program planning
were based on the following assumptions:
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 Health literacy is associated with a low quality of life

 Low health literacy is a significant issue in Missouri
 Low health literacy disproportionately affects marginalized
and underserved populations
 Responsibility in improving health literacy resides in the
entire community

Inherent in these assumptions is the belief that health literacy is

influenced not just by cognitive, individualistic characteristics, but by the
cumulative impact of social, economic, and environmental factors.22
Consequently, strategies considered most effective in enhancing health literacy
should adhere to an ecological framework, wherein program activities address
the broader social determinants of health.20, 39-40 Program activities should then
be guided by health behavior theories that help determine why certain behaviors
occur, so that interventions would more likely yield sustainable outcomes.
The theories that were adopted to guide planning for the health literacy
project included: Health Belief Model, with its primary constructs of perceived
susceptibility of illness, perceived severity, perceived benefits, and perceived
barriers41; Social Cognitive Theory, with a major focus on self-efficacy and
social norms42; Theory of Planned Behavior, with its emphasis on decisional
balance and pros or cons of performing a behavior43; and community planning
models such as PRECEDE-PROCEED.44
The Health Literacy Missouri Logic Model is shown in Figure 1. The
heterogeneity of inputs reflected the desire to embed a multilevel decision-
making model in all program activities. The logic model development was
informed by individual consumers and the influential elements of their social
and institutional environment, which included churches, the educational system,
the health and medical community, and social service organizations; the larger
community of business and industry leaders and private foundations; and those
in the public policy arena including local and state politicians and academic
policy centers.
Constructs from the behavioral change theories were operationalized
through the activities detailed in the logic model. Improved self-knowledge and
self-efficacy were promoted by developing a repository of easily-accessible
health literacy materials (which included print, illustrations, video, and other
media), followed by a broad-based public education campaign largely utilizing
grass-roots community liaisons. Promoting behavioral change through social
norms was actualized by linking health promotions with community
 Will Ross 8

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ambassadors, who by being culturally competent and/or ethnically similar, were

more likely to positively influence health behaviors in the long-term. Social
norms were also influenced by engaging in a social marketing campaign to reach
a wider, more diverse audience.
Recognizing that some individuals, (and minority populations in
particular), were less likely to seek health information or health care because
they feel culturally alienated or intimidated in the medical encounter, the
coordinating council considered activities to improve the likelihood of moving
individuals from a precontemplative stage to the active and maintenance stage of
health management by increasing health professional’s awareness of cultural
sensitivity. Proposed activities range from health professional school
curriculum reform to health provider cultural competency training. Woven
throughout the designated activities was the reliance on planning evaluation to
discern predisposing, reinforcing, and enabling constructs, as articulated in the
Precede-Proceed model. Affording evaluation a highly visible role in our model
affirmed the significance of linking program activities to the environment,
creating the de facto “politics of accountability” that promotes social change. 45-46
The outputs, or products in the Health Literacy Logic Model reflect the
outgrowth of the multilevel intervention strategies. The hallmark of the logic
model was the creation of a Health Literacy Center of Excellence, guided by an
independent coordinating council. The coordinating council, adhering to the
principles of community empowerment in health planning, conducted focus
group sessions with employees at 54 Missouri non-profit organizations in 14
Missouri counties from 2007- 2008. These grass roots individuals defined health
literacy as: understanding basic health concepts; understanding, finding, and
using health information provided inside and outside of healthcare; navigating
the healthcare system; and patients taking responsibility for their own health.
The participants noted that culture and language played an important
part in understanding health information or having a successful health
encounter. As one participant said:

Health literacy means the ability of patients to be able to understand

their own medical conditions, instructions that may have been given
about their medical conditions, so that they’re making wise choices and
decisions about keeping themselves healthy.

These experiences highlighted the importance of formative research in

identifying and assessing the effectiveness of intervention strategies in culturally
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diverse groups.47 The Center of Excellence, known as Health Literacy Missouri,

moved assiduously to incorporate the community perspectives into the Center’s
desired outcomes.

DEMONSTRATION PROJECTS

Theory-based evaluations have been employed successfully in

qualitative and quantitative research, typically linking empirical knowledge to
the achievement of a desired outcome through defined programmatic activities
.26 This paper goes a step further in outlining the impact of theory-based
evaluation on a wide range of programs under the auspices of a state-wide
program, Health Literacy Missouri. Given the impracticality of designing and
evaluating a single comprehensive program for a culturally and ethnically
diverse state, the coordinating council developed and implemented a process to
identify and fund innovative health literacy demonstration projects around the
state. Each demonstration project describes innovative community-based
approaches in improving health literacy, and each includes a rigorous evaluation
plan. The demonstration projects allow further assessment of how behavioral
theories can be employed to test program assumptions, and hopefully allow
generalization of the program to other targets.
Current demonstration projects are summarized in Table 1. There are
multiple theories that could be explored for each project, however for the sake of
parsimony only the major theories are presented here. Likewise, there is
considerable overlap of constructs between projects, and only a representative
number of constructs are outlined for each project. The evaluation of the
demonstration projects, which are only in the first year of implementation, is
ongoing and is sufficiently rigorous to ascertain which projects are more likely
to be adopted and culminate in long-term behavioral change. Resources will be
marshaled to replicate the most effective and sustainable projects across the
State, and the results shared with a national health literacy consortium to further
the adoption of health literacy best practices.

CONCLUSION

The approach of Health Literacy Missouri has been to adopt a program

planning model that integrated the requisite needs assessment, ecological
framework, and program evaluation. Launching a statewide health literacy
campaign without those requisite elements would be a daunting task for a
 Will Ross 10

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number of reasons. First, since there is still not a comprehensive measure of

health literacy, there is disagreement on how to assess a population with a varied
socioeconomic and culturally diverse background. Secondly, program planning
functions best when based on a conceptual framework that focuses on
ecological, multilevel determinants of health38. Successful implementation of
the health literacy effort requires the interaction of a broad-based,
multidisciplinary core of individuals and institutions, which are not historically
characterized as collaborative.
Lastly, and perhaps more critically, theory-based program evaluation
relies on monitoring how theory constructs are operationalized over time in
order to determine why a set of activities did or did not lead to the desired
outcome.26 The difficulty with monitoring health literacy over time is that, as a
social construct, it is developed in response to our expanded cognitive skills as
well as the product of social interactions.48 In essence, health literacy functions
as a latent construct - not directly measured, but estimated through proxy
measures such as family structure, educational attainment, economic status,
health care access, and other contextual factors.49 Thus, assessing interventions
to improve health literacy by measuring proxy covariates over time, while not
improbable, can become an evaluator’s nightmare.
Crafting a theory-based logic model afforded the Coordinating
Council the opportunity to explore the major assumptions about health literacy
while designing a more effective plan to influence program outcomes in a
culturally and economically diverse state. Incorporating behavioral theory into
the health literacy logic model permitted the contextualization needed to identify
individuals or systems that were amenable to modification. Building the model
on an ecological framework has the potential to accelerate the achievement of
the logic models long-term goals while promoting sustainability and making
evaluation more engrained and systematic. Although the Health Belief Model,
Social Cognitive Theory, Stages of Change, and Social Planning Model were
emphasized in this model, other behavioral health theories can be readily
adapted. The utility of the resultant logic model and its relative simplicity will
hopefully result in its adoption by other communities nationwide and abroad.
 Will Ross 11

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Health Literacy Missouri Program Logic Model

Assumptions Inputs Activities Outputs Outcomes

Short Term Medium Term Long Term

People of Needs Prioritized Increased Appropriate

Healthier
Missouri Assessment Needs of Public Use of
Missourians
Missourians Awareness Prevention
Educational Resource of Health Services
Reduced
Systems Inventory and Health Literacy
Health Care
Development Literacy Increased
Costs
Health literacy is associated Faith –based Resource Increased Health
with a low quality of life Institutions Assessment and Repository Personal Literacy
Improved
Triage of Satisfaction Among
Low health literacy is a Systems
significant issue in Missouri
Social Community Public with Health Students
Infrastructure
Service Resources Education Care
Low health literacy Organizations Campaign Increased
disproportionately affects Health Increased Provider
marginalized
and underserved populations
Health and Professional Health Patient’s Health
Medical Curriculum Professional Health Literacy and
Responsibility in improving Community Development Training Communica Communica-
health literacy resides Program --tion Skills tion Skills
in the entire community
Industry Public Education
Campaign K-12 College Increased
Academic Health Community
Policy Strategic Literacy Capacity
Centers Communication Curriculum
Planning
Government

Evaluation
Data Collection, Analysis, Reporting

Figure 1.
 Will Ross 12

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Table 1. Health Literacy Demonstration Projects

ORGANIZATION PROJECT TITLE PROJECT DESCRIPTION THEORY CONSTRUCTS EVALUATION

Urban League of Metropolitan Health Liaisons Block Unit A health literacy training program will be Health Belief Model, Benefits, Barriers, Self- Ongoing
Saint Louis Model developed in twenty neighborhoods in an African Social Cognitive Theory efficacy, Social Norms,
American underserved community. Neighborhood Reinforcement
ambassadors will be used enrolled to address the
following components of health literacy:
communication with physicians, understanding
nutrition labels, and understanding prescription
labels.
Nurses for Newborns Mothers of Newborns Health Patient-provider communication will be enhanced Health Belief Model, Benefits, Barriers, Self- Ongoing
Foundation Literacy Project by using community outreach mothers to train Social Cognitive Theory, efficacy, Social Norms,
mothers from Bosnian and Hispanic communities. Stages of Change Reinforcement,
In-home visits will stress prescribed medications, Decisional Balance,
immunizations, and risk of tobacco smoking Social Liberation

Saint Louis Christian Chinese Chinese Community Health
Community Service Center Literacy Enhancement
Parkway School District Adult Health Literacy: A
Curriculum Designed for
Missouri Adult Education and
Literacy Programs
Erise Williams and HIV/AIDS Health Literacy
Associates,Inc Initiative
Maplewood-Richmond Heights Seed-to-Table Program
School District
The health literacy of new immigrants, older Health Belief Model, Barriers, Benefits, Self- Ongoing
adults, and other underserved individuals in the Social Cognitive Theory, efficacy, Social Support,
Chinese community would be improved through Social Planning Model Social Environment,
development and delivery of linguistically and
culturally sensitive materials. Community
capacity would be extended as a consequence
Health literacy modules would be created to allow Health Belief Model, Benefits, Self-efficacy, Ongoing
adult students to participate in health literacy Social Cognitive Theory, Social Norms,
lessons. The newly-designed curriculum would Social Planning Model
interface with the Missouri State Adult Education
Section and the Adult Education Professional
Development Center
The initiative will measure the impact of health Health Belief Model, Perceived Benefits, Ongoing
literacy on HIV/AIDS treatment and adherence to Stages of Change Barriers, Health Motives,
persons living with HIV/AIDS. A tool would be Self-efficacy,
subsequently developed to improve treatment Reinforcement
knowledge and adherence Management, Social
Liberation
Child’s understanding of healthy nutrition will be Health Belief Model, Benefits, Self-efficacy, Ongoing
enhanced through developing a community garden. Social Cognitive Theory Observational Learning,
New resources will be developed to further Reciprocal Determinism
integrate health literacy into K-12 curriculum
 Will Ross 13

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 Will Ross 17

___________________________________________________________

Will Ross (rossw@wusm.wustl.edu) is associate professor of medicine and

associate dean for diversity at the Washington University School of Medicine.
Arthur Culbert (aculbert@mffh.org) is senior advisor to the Missouri
Foundation for Health and interim executive director of Health Literacy
Missouri. Charles Gasper is Director of Evaluation and James Kimmey is CEO
and President of the Missouri Foundation for Health.

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