Beyond the bench and bedside: Health literacy is fundamental to sustainable health and development

1.Introduction

In 1986, Member States of the United Nations congregated in Ottawa, Canada for the First International Conference on Health Promotion. Its seminal output was the Ottawa Charter for Health Promotion, which included provisions to achieve Health for All by the year 2000 and beyond [1]. Thirty years later in 2016, the global community pledged support to the United Nations 2030 Sustainable Development Agenda. Seventeen Sustainable Development Goals (SDGs) were advanced to help facilitate coordinated action to end poverty, protect the planet, and ensure peace and prosperity [2]. With regards to human health, the third SDG focuses on advancing “good health and well-being” [2].

While not explicitly included in the indicators or targets of the SDGs, health literacy - defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” - is essential to achieving the economic, environmental, and social ambitions of the SDGs [3]. Better health literacy across all populations underpins improvements in the other SDGs, including eradication of poverty and hunger, quality education, and reduced inequalities [4]. Achieving the SDGs will require a dedicated focus on health literacy by all actors in global partnership to ensure no one is left behind and to deliver universal health coverage.

Despite increased multisectoral interest and compelling scientific evidence regarding the effectiveness of health literacy, the inadequacy of the skills and abilities of individuals to navigate the demands and complexity of health and healthcare persists. While these concerns affect communities in the United States (U.S.) and many other high-income countries, the gap is particularly acute in low- and middle-income countries (LMICs) that are often characterized by underdeveloped health systems. Within both contexts, the ability for individuals to prevent and manage complex and costly diseases is limited by poor health literacy. Beyond the individual, however, equal attention must be targeted on governments and healthcare systems to provide accurate and accessible health information [4].

Realizing the need for improved health literacy in achieving the SDGs during the next thirty years and beyond, this chapter synthesizes major developments and proposes opportunities and future directions for health literacy across the lifespan. It uses the cases of early childhood vaccinations; alcohol use in adolescence; and dementia care in older adults to demonstrate the need to develop health literacy across the life course. It also draws on digital health data and technology and multisectoral partnerships to define the future of health literacy. The authors believe this can and will lead to unlikely collaborations that advance health and well-being throughout and beyond the 2030 Agenda for Sustainable Development.

2.Moving beyond definitions and research

Since the turn of the 21st Century, health literacy has gained momentum as a necessary precondition and indicator of a well-functioning healthcare system that prevents, manages, and treats disease. An April 2019, simple search on Google Scholar shows a total of 217,000 results for the term “health literacy,” with only 99,200 results for “media literacy” and 49,900 results for “science literacy” through similar searches.

In an attempt to clarify and coalesce global public health and medical sciences academics and practitioners around health literacy, various definitions have permeated the literature. These definitions are focused in two areas: (1) health literacy as a continuum between high or low levels of literacy; and (2) health literacy as a multidimensional concept focused on the interaction of skills within broader social and cultural contexts [5]. This divergence had resulted in lack of unity around a common definition of health literacy [6]. Notwithstanding definitional agreement, reviews of the health literacy literature conclude Ratzan and Parker’s aforementioned definition has been the most cited [3,6]. Within the U.S., this definition has been adopted by the Department of Health and Human Services, the National Academies of Sciences, Engineering, and Medicine (formerly the Institute of Medicine), and the National Library of Medicine [3,7,8]. It also was the definition used in the U.S. Patient Protection and Affordable Care Act of 2010 [9].

The natural question is: to what extent are varying definitions consequential for accelerating action and progress in improving health literacy among disparate global populations? The authors contend an approximate definition is adequate for moving the field from definitional semantic debates to sustained practical action on health literacy. In the next section, we review past developments in public health clinical practice and policy reforms to provide a foundation for accelerated action on health literacy.

3.Public health clinical practice and policy reform: building on progress

The term health literacy was first used in 1974 to describe the impact of health education on both healthcare and education systems and outcomes [10]. Since then, various models (such as functional, interactive, and critical health literacy) have been proposed to identify and delineate and relationship between health literacy and the healthcare and education systems [11,12]. The integration of health literacy into public health and clinical care practice has led to progress in developing health literacy into a field that interacts with the healthcare and education systems. The latter has entailed cataloguing the problem, proposing definitions, encouraging health literacy as a mechanism to decrease healthcare costs, improving the quality of healthcare, and reducing disparities. It also resulted in assessment tools for measuring health literacy [13].

More recent efforts to promote health literacy commenced in the early 2000s. In 2004, the U.S. Institute of Medicine summarized the medical literature on health literacy to establish that: “efforts to improve quality, reduce costs, and reduce disparities cannot succeed without simultaneous improvements in health literacy” [8]. The Institute of Medicine additionally proposed a model to describe how individual health literacy skills can be influenced by culture and society as well as the health and educational systems [8].

In 2006, the first health literacy assessment tool was developed; the U.S. National Assessment of Adult Literacy [13]. This served to collect longitudinal data on the health literacy of adults living in the U.S. These early academic efforts eventually were integrated into public health education. One example is Columbia University’s Mailman School of Public Health, which proposed a “Public Health Oath” in 2008. This oath articulated the professional commitment and guiding principles for students, graduates, and faculty in public health. It explicitly called out health literacy: “I will advance health literacy for all and seek equity and justice for vulnerable populations” [14].

As health literacy gained momentum in academia, it also infiltrated national health policy reform. A “blueprint for change” to achieve a health-literate America was proposed in 2003. This included four policy-oriented strategies to advancing health literacy: (1) research and measurement; (2) reducing health disparities; (3) engaging the federal government; and (4) improving medical practice [15]. These efforts led to Louisiana becoming the first U.S. state to pass health literacy improvement legislation in 2002 [16].

While a majority of the literature and policymaking on health literacy has occurred within the U.S., advances in other parts of the world have occurred. Although 15 percent of the literature on health literacy has been generated in the European Union (EU), the European Centre for Disease Prevention and Control (an agency of the European Union) actively promotes health literacy [17,18]. In response to the EU’s public consultation on a legal proposal to provide health information to patients, the European Federation of Pharmaceutical Industries and Associations (EFPIA) (a coalition of national associations and pharmaceutical companies leading the research-based pharmaceutical industry in Europe) advanced the need to place product information within a broader context to improve health literacy [18,19]. In the United Kingdom (UK), the UK Committee on Safety of Medicines highlighted the importance of health literacy in identifying and communicating health information to make informed health decisions [19]. In 2009, the United Nations Economic and Social Council (ECOSOC) held a regional meeting on health literacy in Beijing, China and later issued a declaration exploring ways to strengthen multisectoral collaboration at the national, regional, and international levels. This was intended to undertake joint actions to increase health literacy; find ways to promote better access and use of information through information and communication technology and empowerment; and build capacity for sustained action to increase health literacy [20]. More recently in South East Asia, the World Health Organization (WHO) regional office released a health literacy toolkit for LMICs that focuses on integrating health literacy into policymaking processes [20].

While the diffusion of health literacy into public health clinical practice and national policy reforms has led to a productive expansion of the field, the authors believe the time is now to build on past progress. The authors suggest it is important to move health literacy beyond its public health and clinical origins to facilitate broader global impacts. In doing so, we propose a life course for health literacy.

4.Ubiquitous health: a life course approach for health literacy

Low health literacy has been associated with poorer health outcomes, increased risk of mortality, and unnecessary use and costs of healthcare services [21]. Unfortunately, individuals with low literacy have a poorer understanding of behaviors to promote health and disease management. Individuals with low health literacy also are less likely to use preventive services compared to individuals with average or above average literacy [15]. As one example, a U.S. national survey on health literacy skills concluded 85 percent of individuals cannot calculate an employee’s share of health insurance costs using a table, while more than one-third of adults are uncertain as to how to take prescription medicines based on instructions on container labels [15].

In order to improve health and well-being outcomes as well as reduce healthcare costs, the authors propose a life course approach for health literacy. This requires dedicated efforts to promote health literacy across the lifespan. Realizing that each stage of life represents a spectrum of health and different levels of interaction with the healthcare system, the capacity for health literacy should be developed from before birth through childhood, adolescence, adulthood, and old age. For example, an older adult with multiple co-morbidities will use healthcare services differently than a younger individual. Figure 1 demonstrates a continuation of health literacy across the lifespan. It depicts a life course approach with three cases: childhood vaccinations, harmful alcohol consumption in adolescence, and cognitive decline and dementia in adulthood and older age.

Fig. 1.

Health literacy across the lifespan.

The authors also provide examples of the stakeholders required to improve health literacy in each of the examples shown in Fig. 1. Primary prevention, or ‘staying healthy’ via intervention before health effects arise, commonly requires the engagement of health leaders such as policymakers and business leaders. They are frequently responsible for introducing measures that boost access to vaccinations or reduce access to alcohol. Secondary prevention - screening to early detect diseases before signs and symptoms - often resides with healthcare professionals operating in clinical settings such as a hospital or clinic. The healthcare professional engages in activities such as mammography and blood pressure testing to screen for diseases. Lastly, tertiary prevention - managing disease to prevent or slow progression - requires the involvement of healthcare professionals along with a caregiver, such as a family member or guardian. The interaction and collaboration of these stakeholders across the lifespan demonstrates the need for multisectoral engagement in health literacy.

In partnership with the stakeholders outlined in Fig. 1, diverse strategies have been proposed to advance health literacy across the lifespan. These strategies cover the education, healthcare, business, and policy sectors. They are cross-disciplinary, cross-cutting, and cross-cultural, and have potential to accelerate efforts to improve health literacy in the coming decades. Table 1 presents a summary of these potential strategies for advancing health literacy.

Finally, it is worth noting the general semantic differences needed to more precisely describe health literacy. For example, the authors contend: (a) vaccine literacy is different from health literacy for vaccines; (b) alcohol literacy is different from health literacy for alcohol; and (c) dementia literacy is different from health literacy for dementia. The distinctions highlight the challenges posed by each of these life events, which require broader communication strategies to meaningfully engage multiple stakeholders to develop and integrate comprehensive ’health information and services needed to make appropriate health decisions.’ This novel approach to health literacy is more than simply addressing healthcare or education systems. It includes partnerships with the public and private sector, along with academia and civil society.

4.1.Early childhood vaccinations: vaccine literacy

The leading public health achievements of the 20th Century include the global decline in vaccine-preventable deaths. Since 1792 when the first vaccination was developed, smallpox has been eradicated, child mortality has declined, and numerous birth disabilities have been prevented in many parts of the world [22].

However, these global health gains are threatened by rapid increases in vaccine hesitancy - defined as “the delay in acceptance or refusal of vaccines despite availability of vaccination services” - that has progressed in many countries [24]. The threat of vaccine hesitancy is so urgent that the WHO ranked it as a top ten health threat for 2019, alongside climate change, non-communicable diseases (NCDs), and high-threat pathogens such as Ebola [23].

While anti-vaccine statements date back to the 1800s, more recent sentiments stem from now debunked evidence regarding the relationship between childhood vaccines and autism. This relationship initially was proposed by the British physician Andrew Wakefield and was published in a prestigious medical journal, The Lancet, in 1998. Nonetheless, the study included serious methodological flaws. Among them were a sample size of only 12 participants and no control group. The British Medical Journal later exposed the fraud and subsequent scientific reports show no causal relationship [25]. Despite no association, anti-vaccine sentiments have expanded beyond vaccines for measles, mumps, and rubella (MMR) to include human papilloma virus (HPV) and influenza [26]. U.S. states with medical and philosophical exemptions for childhood vaccines have reported declines in vaccine coverage [27].

A growing anti-vaccine movement is aligned with the proliferation of social media platforms that can propagate misinformation — such as Facebook, Twitter, and YouTube [28]. In 2018, Russian-operated bots were found to promote discord and disinformation to sway vaccine sentiments on Twitter [29]. Although many people turn to their healthcare provider to access vaccine-related information, evidence suggests vaccine-hesitant parents are more likely to look to the Internet for information [30]. As a result, the proliferation of dysfunctional content has fostered increased vaccine hesitancy, delay, and refusal. The authors suggest the companies that operate social media platforms have a responsibility to filter misleading information on vaccines to promote population coverage [31].

Until now, the response to vaccine hesitancy has been articulated through disease prevention goals focused on developing ‘herd immunity’ within a population. Coined in 1923, the term refers to the percentage of vaccinated individuals required to protect an entire community (or herd) from a disease. For measles, herd immunity requires a 95 percent immunization rate in order protect a community. This means two doses of measles vaccine (to be 97 percent effective), while one dose is effective 93 percent of the time [32]. As vaccine hesitancy continues to gain momentum, calls have been made to shift from a focus on herd immunity to one centered on community protection [31,33]. Community protection entails individual protection for people who are vaccinated as well as reducing the spread of the disease within a population [34]. Figure 2 (which is adapted from the Proceedings of the National Academies of Sciences) demonstrates the effect of community protection within a population [34].

Fig. 2.

Community protection.

(A) represents a highly susceptible population, whereby a transmitting case will likely encounter a susceptible person. This will lead to a line of person-to-person transmission, and eventual outbreak.

(B) represents an immune population with good vaccination coverage. A transmitting case will likely not encounter a susceptible person. This breaks the line of transmission, yielding indirect protection of the remaining people who are susceptible.

Vaccine literacy can play an effective role in combatting anti-vaccine sentiments and to improve vaccine coverage among parents and their children [35]. Vaccine literacy entails improving the strength of systems that place value on both knowledge of the benefit and importance of vaccines in addition to promoting and integrating vaccines within a functioning health delivery system [36]. Building on previous efforts proposed by Parker, the authors contend vaccine literacy is composed of three interrelated elements: the individual and system that provides for skills, ability and knowledge to get vaccinated; simpler and stronger healthcare and education systems that generate demand for vaccines; and accelerated leadership and investments in digital health and communications to increase vaccine coverage as a social norm throughout the world.

5.Future directions for health literacy: strategic opportunities

Realizing that health literacy should be developed across the lifespan, the authors propose the creation of a new area of focus called dementia literacy that equips policymakers, healthcare professionals, business leaders, and employees with the tools to better navigate appropriate courses of action for cognitive decline and dementia care. This may include offering training that could include certification for caregivers by employers and education providers [48]. The training additionally should advance data collection regarding the prevalence of caregiving by individuals [49].

While the aforementioned ideas highlight three examples for action, this section provides strategic opportunities and future directions to improve health literacy. In particular, the expansion of treatment and caregiving requires data and technology through new mobile health tools as well as multisectoral engagement through collaborative partnerships.

5.2.Multisectoral engagement

During the past two decades, partnerships have guided the development of health literacy as a discipline and field of study. These have been primarily academic and public sector collaborations. Nevertheless, decades of distrust between the public and private sectors — specifically big food, tobacco, alcohol, and pharma — has inhibited cross-sector collaborations to better health and well-being.

Years of documented evidence on activities to undermine the health efforts by government and public health institutions has led to the public sector largely viewing the private sector with suspicion. As Dr. Margaret Chan, the former Director General of WHO said: “Few governments prioritize health over big business … efforts to prevent noncommunicable diseases go against the business interests of powerful economic operators” [61].

However, the authors suggest this scenario is starting to change. The burden of development action and finance can no longer rest on national governments and philanthropic institutions. In turn, the private sector and civil society is part of the multidimensional efforts to achieve the 2030 Global Agenda. The SDGs explicitly call for multisectoral - including private sector - engagement. Indeed, SDG 17 focuses on the formation of `Partnerships for the Goals’ to strengthen implementation and revitalize global partnerships [2].

Given the history of mistrust among these sectors, an interdisciplinary collaborative at the Mossavar-Rahmani Center for Business and Government at the Harvard Kennedy School released a set of guiding principles to serve as a frame of reference for multisectoral engagements to achieve SDG3. These principles recognize health as a public good, and are driven by evidence, science, and values [62].

The seven guiding principles (depicted in Fig. 3) include: (1) agree on shared mission and goals in alignment with targets identified in health-related SDG targets; (2) ensure alignment of interests related to the SDG target(s), including identification and management of actual or potential conflicts of interests; (3) establish credibility and strengthen coordination with key actors; (4) clarify contributions with financial, technical and in-kind support with each parties’ contribution; (5) commit to ethical communication with transparent, accountable, and just systems; (6) create an evaluation plan with adequate support and independence to report progress on key metrics internally and externally; and (7) advance long-term stewardship for sustainable social change through partnership structure and terms of collaboration [62]. The authors contend these principles can guide productive collaborations between the public, private, and academic sectors to promote health literacy in the U.S. and globally.

Fig. 3.

Guiding Principles for Multisectoral Engagement for Sustainable Health (MESH).

Integrating these principles into future multisectoral engagements on health literacy in support of SDG3 will help facilitate the shift from improving individual health literacy among patients in clinical care settings to encouraging broader systems-level change.

6.Conclusion: a call to action for advancing health literacy

However ambitious, the 2030 Agenda for Sustainable Development is attainable with dedicated and concerted action. For the global community to achieve the health-related targets and indicators of the SDGs, health literacy must be integrated in new ways that build on past achievements.

Since the turn of the 20th century, the essential building blocks for health literacy have been established. There has been substantial growth in the academic literature on health literacy, which establishes the scientific evidence and credibility of the field. Definitional debates have defined the core of health literacy, along with other considerations on offshoots. Policy agendas in both the U.S. and other countries have included health literacy to advocate its deeper integration into healthcare and education sectors. These are all important accomplishments to elevate health literacy as an area of activity and action among academic and policy professionals within public health and the medical sciences.

The next twenty years augur leveraging existing progress to expand the influence of health literacy. In this chapter, the authors propose ideas on how this may be accomplished. First, we believe a life course is necessary for health literacy, one that spans life from before birth through death. Specifically, this means coalescing efforts within three areas where health literacy is critical: vaccinations in childhood, alcohol consumption in adolescence, and cognitive decline and dementia in adulthood and old age. Each of these phases of life should integrate health literacy through primary, secondary, and tertiary prevention efforts.

Second, new mobile technologies and digital communication tools should include guiding practices from health literacy. These tools and technologies have the potential to deliver healthcare at scale to improve outcomes and reduce costs. Yet, efforts to improve health are unlikely to succeed without thoughtful design to develop easy-to-navigate interfaces and protocols for data privacy and confidentiality. These technologies should be engineered using principles from design thinking, with collaborators across schools of engineering and healthcare.

Finally, multisectoral engagement is essential to facilitate the proliferation of health literacy beyond public health and the medical sciences. This requires leaders in academia and policymaking to interact with business, multilateral organizations, and civil society. Realizing the potential for competing priorities and conflicting interests, some guiding principles have been proposed. In addition, metrics inclusive of evaluation frameworks should be developed to determine the extent to which these partnerships promote health literacy and other indicators of the SDGs.

Gains in health literacy will not be realized simply through individual actions. It will be systems working in harmony that facilitate improvements in health and well-being for families, communities, and countries. The time is now for health literacy to move beyond the bench and bedside in clinical practice to achieve the aspirations and objectives of the 2030 Agenda for Sustainable Development. We look forward to making this a reality.