Individual Health Literacy

An individual approach to health literacy focuses on the skills and abilities of the consumer (Jordan, Osborne, & Buchbinder, 2011) and is seen as a process involving four related types of competencies:

• Access - an individual’s ability to locate, find and obtain health information

• Understand - an individual’s ability to comprehend the health information that has been accessed

• Appraise - an individual’s ability to consider, interpret, and evaluate the health information that has been accessed

• Apply - an individual’s ability to communicate and use the information to make decisions to maintain and improve health (Sørensen, et al., 2012).

Individual health literacy is dynamic and can vary from day to day. Personal factors like an individual’s previous experience and knowledge of health and illness, as well other contexts such as fatigue, mood, being unwell or stressed can affect a person’s capacity to understand, use, apply and act on information at that time (ACSQHC, 2014). Some individuals may prefer their healthcare provider to make decisions and action, whereas others prefer an active role in their care.

Consumer motivation and decision-making are also essential components. An individual may possess healthcare knowledge, have the capacity to process and retain information and be provided with understandable information, but if they are not motivated they may not act on the information or make the decision needed (ACSQHC, 2014). This lack of motivation could be from either the consequences of no actions haven’t been communicated well, or the consumer may surrender their right to choose to their healthcare provider – whichever way, consumer motivation will influence the transformation of information into action (ACSQHC, 2014).

By improving the capacity to take control over health, health literacy is critical to empowerment (WHO, 1998). A delicate balance is needed between the two concepts, as high health literacy levels without a high degree of empowerment leads to an unnecessary dependence on health professionals; while a high degree of empowerment without the corresponding degree of health literacy increases the risk of dangerous health choices (Schulz & Nakamoto, 2013).

Consumer participation

Consumer participation in health-care refers to the mutually beneficial partnerships between healthcare providers, consumers, carers and their families around the planning, delivery, and evaluation of their health care. Research has shown that those who actively participate in healthcare decisions shown to achieve better health outcomes compared to those who do not (Kaplan, Greenfield, & Ware, 1989). Poor health literacy can lead to a significant variation in an individual's ability to access, apply and communicate health information, impacting their opportunity and capability to interact with health professionals and participate in their health care. Consumer participation in health-care may therefore unintentionally increase inequalities in health by favouring certain population groups as a consequence of their higher health literacy (Thomson, Murtagh, & Khaw, 2005).

Literacy

Literacy refers to having or showing a range of abilities, competencies and knowledge about a particular subject. To effectively function throughout life, an individual needs to possess a wide number of literacies (ACSQHC, 2012). These literacies can be subject-specific such as cultural, technology, media and scientific literacy, but subject-specific literacies build on the foundation of general literacy (ACSQHC, 2013).

Some researchers do not consider health literacy to be a separate concept, viewing it simply as general literacy in the health context (Reeve & Basalik, 2014); whereas some view the two as completely separate and different concepts (Canadian Public Health Association, 2008). This resource views health literacy as a distinct, separate concept to general literacy, as although general literacy is an important determinant of health; individuals need more than those abilities to manage the health issues that arise throughout the life course (ACSQHC, 2013).

Literacy is an enabler to action and not just a measure of achievement (Nutbeam, 2000); therefore poor general literacy impacts the development of health literacy by limiting personal, social and cultural development (ACSQHC, 2013). While health literacy is dependent on general literacy (WHO, 1998), high general literacy does not directly lead to high health literacy (ACSQHC, 2013).

Health Literacy Environment

A person’s individual health literacy needs to be considered in the context of the demands that they will face when accessing and using our complex health system. Our complex health system places many demands on individuals, carers, families and communities. Decreasing these demands will lead to improved health literacy.

The Health Literacy Environment is the infrastructure, policies, processes, materials, people and relationships that make up the health system and have an impact on the way that people access, understand, appraise and apply health related information and service. A Health Literate Organisation is one that recognises the impacts on the health literacy environment and makes it easier for people to navigate, understand, and use information and services to take care of their health.

The Institute of Medicine in the United States of America released a paper in 2012 that identified ten aspirational attributes that characterise a health literate organisation. These attributes are a list of qualities that organisations can strive to achieve to ensure services provided are easy for people to navigate, understand and use (Brach, et al., 2012).

The universal precautions approach to health literacy is also recommended for those in the health sector as providers won’t always know which consumers have limited health literacy (DeWalt, et al., 2010). In taking this approach, it is assumed there will be barriers to understanding and it will be necessary to reduce the complexity of the information and services that are provided; not just for those who appear to have literacy issues but for all.

Cultural competence is explained as the capacity to interact and communicate with people across different cultures to support and empower consumers to engage in their health and health care. This requires knowledge of cultural practices and differences, a positive attitude towards these practices and differences; and cross-cultural communication skills. Australia’s growing multicultural society requires healthcare providers and organisations to understand and address cultural barriers to health literacy and provide culturally competent services. (ACSQHC, 2014)

Strategic & Legislative Context

Health literacy is becoming a core concept of many systems including legislation, policies and plans, standards, funding mechanisms, incentives and curricula. This section outlines a select few documents at international, national and Victorian levels that impact and guide the interpretation and intervention into Health Literacy.

International

A number of countries around the world have progressed significantly in the strategic and legislative context of health literacy. A global approach has been taken by the World Health Organisation with its 2013 release The Solid Facts: Health Literacy (World Health Organization , 2013). WHO considers health literacy an essential component of pursuing health and wellbeing in a modern society, and as a determinant of health. The Solid Facts advocates a wider, whole-of-society approach to health literacy that takes into account an individual’s level of health literacy and also recognises the importance of different health contexts within which people live. Focus is placed on how actions in a range of settings and sectors can combine to empower and enable people to make sound health decisions and carry them out in the context of everyday life.

The Calgary Charter on Health Literacy from the Centre for Literacy in Canada (Coleman, et al., 2009) is intended to support the development of new health literacy curricula and evaluation tools for both the public and health professionals. The Charter reflects a two-way-street approach to health literacy, showing how the concept applies to both information seekers (patients, adult learners, etc.) and information givers (health care providers, the public health system, etc.). The interactive resource encourages those involved in developing or evaluating health literacy curricula to incorporate their approaches into the Charter. Beyond its value of curriculum development, the Charter specifically avoids specifying any particular groups, assuming that health literacy affects all individuals and health systems, expressed differently in different contexts and always based on the same underlying skills and abilities.

The National Action Plan to Improve Health Literacy from the US Department of Health and Human Services (U.S. Department of Health and Human Services, 2010) aims for a multi-sector effort to create a health literate society. The Plan identifies seven overarching goals with highest priority strategies to achieve each, and many of the strategies highlighting actions that particular organizations or professionals can take to further these goals.

Making it Easy - A Health Literacy Action Plan for Scotland (NHS Scotland, 2014) positions the task of dealing with health literacy not just with those who experience the issue, but as an issue for health services and practitioners to respond to; setting out specific actions that can be taken at each level to help address the issue. The Plan recognises health literacy as ‘people having enough knowledge, understanding, skills and confidence to use health information, to be active partners in their care, and to navigate health and social care systems’ and maintains that when individuals health literacy needs are not met, the person-centeredness of care is undermined as ineffective communication decreases the capacity to make decisions.

Healthy People comes from the United States Department of Health and Human Services (National Centre for Health Statistics, 2012) with nationwide health-promotion and disease-prevention goals. Goals are set in each program for the following decade, and subsequently updated for Healthy People 2000, Healthy People 2010, and Healthy People 2020. Healthy People 2010 comprised of two overarching goals - increase quality and years of healthy life and eliminate health disparities – achieved through 467 specific objectives organized into 28 focus areas. One such focus area was ‘Health Communication’ with the goal to ‘use communication strategically to improve health’ and corresponding objectives to monitor the availability of Internet access, health literacy, and the characteristics of health communication campaigns and health-related websites. The focus area was expanded for Healthy People 2020 to Health Communication and Health Information Technology (IT) to strategically combine health IT tools and effective health communication processes, and additional objectives aimed at increasing health literacy skills and delivering accurate, accessible, and actionable health information that is targeted or tailored.

National

The National Health and Hospitals Reform Commission identified improving health literacy as a national health reform direction for Australia in its 2009 report A Healthier Future For All Australians (NHHRC, 2009). The report, contains more than 100 recommendations for reform, advising action on three areas - tackle the major access and equity issues that affect people now, redesign our health system to meet emerging challenges in the future; and create an agile, responsive and self-improving health system. Within this third area of reform Health Literacy is recognised as a lack of knowledge and skills to understand and use information about how to stay healthy or how to navigate the health system. The report recommends health literacy be included in the national curriculum and incorporated in national skills assessment throughout primary and secondary school. The NHHRC also propose targeted approaches to improve health literacy in particular domains, with the need to help ‘make healthy choices easy choices’ apply at all ages and groups in the population.

The Australian Safety and Quality Framework for Health Care (ACSQHC, 2010) from the Australian Commission on Safety and Quality in Health Care (ACSQHC) sets out the actions needed to achieve safe, high quality care for all Australians. The Framework was endorsed by Health Ministers as the national safety and quality framework for Australia in November 2010, and specifies three core principles, that care be: consumer centred, driven by information, and organised for safety. Health literacy is recognised within the first core principle, consumer centred care, and viewed as a specific area for action to reach the principle, rather than an issue itself. The Framework provides tools, resources, and examples to assist in implementing this action. However, this was the first ACSQHC publication mentioning health literacy and as such did not outline specifically what the concept meant and how to tailor action effectively.

Outlining overarching principles for safe and high quality care in Australia, the Australian Safety and Quality Goals for Health Care from ACSQHC (ACSQHC, 2012) supports care which is consumer centred, driven by information and organised for safety. The publication, released in 2012, describes specific priority areas in which a coordinated approach to improvement can be taken to achieve better outcomes for patients and provide a more efficient health system. Health literacy is viewed in the Goals not as a health issue itself, but as a means or tool to achieving safe and high quality healthcare. Health literacy is considered in the context of healthcare organisations, aiming for healthcare organisations to be designed in a way that makes it easier for consumers to navigate, understand, and use their information and services, organisations undertaking improvement projects based on partnerships with consumers and improvement in the design of the physical environment and information produced by healthcare organisations. This was the second ACSQHC publication referencing health literacy, building on the last document and recognising organisations as a vessel for acting on health literacy. Goal 3 of the Australian Safety and Quality Goals for Health Care - ‘Partnering With Consumers’ – explicitly outlines ‘Healthcare organisations are health literate organisations’ as an objective.

Translation Standards - Royal District Nursing Service (Michael, Aylen, & Ogrin, 2013)

The Royal District Nursing Service has undertaken a project to develop a translation standard as a means of driving improvement in the quality of translation in health care. The standard was released in 2013 and identifies 10 components as necessary to ensure a minimum standard of translation that is of high quality and caters to the health literacy levels of the target audience. These are:

1. Develop the English text and/or test the translation with members of the target languages other than English-speaking (LOTE) communities.
2. Undertake a cultural and linguistic assessment of the English text in preparation for its translation.
3. Undertake a subject matter expert assessment of the English text, as appropriate.
4. Organise for the English text to be translated by an accredited translator.
5. Undertake a cultural and linguistic assessment of the translation.
6. Organise for the translation to be proofread by an accredited translator.
7. Include the title of the text in English on the translation.
8. Include the name of the target language in English, on both the English text and the translation.
9. Distribute the translation in bilingual format (English and LOTE).
10. Date, monitor, evaluate and update the English text and the translation as part of an ongoing review program.

The Australian Commission on Safety and Quality in Health Care (ACSQHC) released their National Statement on Health Literacy (ACSQHC, 2014) in 2014 to highlight the importance of health literacy, emphasise the need for collaboration to systematically address health literacy and inform decision-making around health literacy for individuals and organisations. The ACSQHC separates health literacy into two concepts; individual health literacy as the skills, knowledge and capacity of a person to access, understand, appraise and apply information to make effective decisions about health and health care and take appropriate action, and the health literacy environment as the infrastructure, policies, processes, materials, people and relationships that make up the health system and have an impact on the way that people access, understand, appraise and apply health-related information and services. To address health literacy in a coordinated way in both individual and environmental contexts, the Statement advises actions to be taken across three approaches:

• Embedding health literacy into systems - developing and implementing organisational and societal level systems and policies, including funding to encourage awareness and action on health literacy, policies that prioritise health literacy in program planning, and designing easier healthcare organisations.
• Ensuring effective communication - providing print, electronic or other communication that is appropriate for the needs of consumers; supporting effective partnerships, communication and interpersonal relationships between consumers, healthcare providers and other staff.
• Integrating health literacy into education - educating consumers and healthcare providers through population health programs, formal education, training of healthcare providers, health promotion and education strategies, school health education, and social marketing campaigns.

The Statement also describes possible actions that can be taken to address health literacy, detailed by each role in the health system – consumers, healthcare providers, organisations providing local healthcare, organisations supporting healthcare providers and government bodies.

Victorian

The Public Health and Wellbeing Act 2008 (Public Health and Wellbeing Act 2008, 2008) identifies the principles and importance of prevention, collaboration and evidence-based decision making as key to future directions in public health and wellbeing. Particularly relevant to health literacy is the principle of collaboration, which states that public health and wellbeing in Victoria and at a national and international level can be enhanced through collaboration between all levels of government and industry, business, communities and individuals; acknowledging that client-centred care and the ability of individuals to take ownership and make decisions for their health can improve health and wellbeing.

Recognising the rights of patients and consumers utilising the Australian healthcare system, the Australian Charter of Healthcare Rights in Victoria (Department of Health Victoria, 2010) ensures that any and all healthcare that is provided is safe and of high quality. The Charter outlines that patients, consumers, families, carers and providers need to share an understanding of the rights of people receiving health care. The rights recognised in the Charter include:

• Access: a right to access health care
• Safety: a right to receive safe and high quality health care
• Respect: a right to be shown respect, and to be treated with dignity and consideration
• Communication: a right to be informed about services, treatment, options and costs in a clear and open way
• Participation: a right to be included in decisions and to make choices about your health care
• Privacy: a right to privacy and confidentiality of your personal information
• Comment: a right to comment on your health care, and to have your concerns addressed

Of the Australian Charter of Healthcare Rights, communication, participation and comment all recognise the basic components health literacy and the importance of improving health through ensuring individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decision.

Doing it with us not for us: Strategic direction 2010-13 is the Victorian Government’s policy on consumer, carer and community participation in the health care system (Department of Health Victoria, 2011). The publication recognises that ‘participation occurs when consumers, carers and community members are meaningfully involved in decision making about health policy and planning, care and treatment, and the wellbeing of themselves and the community’. By advocating for increasing health literacy through the following individual care level priority actions, the document aims to improve health policy and planning, care and treatment, and the wellbeing of all Victorians.

For those working in the public health sector, the 2015-2019 Victorian Public Health and Wellbeing Plan (VPHWP) was released on September 1st 2015 and articulates the government’s vision for a Victoria free of the avoidable burden of disease and injury so that all Victorians can enjoy the highest attainable standards of health and wellbeing at every age, and aims to reduce inequalities in health and wellbeing. The 2015-2019 VPHWP explicitly discusses health literacy within the three major ‘Platforms for Change’ through which much of the implementation of the plan will occur; being healthy and sustainable environments, place-based approaches and people-centred approaches.

The Victorian Health Priorities Framework 2012-2022: Metropolitan Health Plan (Department of Health Victoria, 2011) outlines the long-term planning and development priorities for Victoria’s health services for the next decade, detailing the directions and actions that will improve the State’s health system. The Plan predicts that by 2022 Victorians will have improved health literacy, possess the knowledge they need to make choices about their health management, and will be able to access high quality information and targeted local health programs. It also recognises that those who are health literate are healthier, empowered to make more informed decisions and to take greater responsibility for their health. The Health Plan establishes seven priority areas, with the ‘Improving every Victorian’s health status and experiences’ area being most relevant to health literacy.

The priority area states that improving the health status of the Victorian population requires action to improve health literacy among the whole community, to engage them in maintaining the best health status for themselves and their families. To improve health literacy, the Plan mentions the need for the development and implementation of a metropolitan wide strategy for improving people’s health knowledge and supporting patient choices; particularly for those whom English is not their first language. High priority is also placed on ensuring that these diverse communities receive high-quality, culturally sensitive healthcare, and that support services such as interpreters should be available where needed. Accurate and up to date information is also recognised as a requirement for Victorians, and a commitment is made to ensuring that information is accessible to patients and to carers.

The Department of Human Services Language Services Policy (Department of Human Services, 2013) identifies that effective communication between service providers and clients is essential to the delivery of high quality services and outlines the requirements needed to enable those with no English, or with limited English, those who are deaf or use sign language, assistance with communication when making significant life decisions and where essential information is being communicated. The Policy assists those with low health literacy by providing aid when essential information needs to be communicated, they are required to make significant decisions concerning their lives or they need to give informed consent. It ensures individuals can make informed decisions about their lives and their health and their ability to access services and to participate in decision making processes which have consequences for their lives are not limited.

Accreditation Standards

The following information outlines a range of common State and National health accreditation standards mapped against the 10 Attributes of a Health Literate Organisation. This information was collected and mapped by the Gippsland Primary Care Partnerships and reported in their ‘Gippsland Guide to becoming a Health Literate Organisation’ report, released in 2015 (Gippsland Primary Care Partnerships, 2015).

The standards that have been mapped against the 10 Attributes include:

• Aged Care – Australian Council on Healthcare Standards (ACHS) and EQUIP
• Community - Care Common Standards (CCCS), Home and Community Care Standards (HACC) and National Respite Carers Program (NRCP)
• Department of Human Services (DHS) Community Standards
• General Practice Standards Royal Australian College of General Practitioners (RACGP) and Australian General Practice Accreditation Limited (AGPAL)
• National Mental Health Standards
• National Standards for Disability Services (NSDS)
• National Safety and Quality Health Service Standards (NSQHS)
• Palliative Care – National Standards Assessment Program (NSAP)
• Quality Improvement Council (QIC).

Impacts & Outcomes

Health literacy is important because it shapes people’s experience of the services and healthcare they receive and contributes to the safety and quality of their health care. A person’s ability to access, understand and use information about their condition will influence the action they take and the decisions they make about treatment and management.

Poor health literacy can have an impact on people’s health and wellbeing. These challenges affect the individual and the community more broadly. Research has found low health literacy to be associated with:

• Increased hospitalisation and readmissions, greater use of emergency care and unnecessary emergency room presentation and longer stays in hospital.
• Fragmented access to care and reduced use of preventive health services.
• Poor management of chronic conditions and ability to demonstrate appropriate medication taking, and poorer knowledge about own diseases or conditions.
• Less knowledge and understanding of medical conditions and their preventability.
• Misdiagnosis from poor communication between providers and patients, low rates of guidance and treatment compliance.
• Poorer ability to interpret labels and health messages.
• Less engagement in health-promoting behaviours and poorer overall health status.
• Lower participation in screening programs (Canadian Public Health Association, 2008), lower use of mammography and lower uptake of the influenza vaccine.
• Higher incidence of chronic disease conditions such as diabetes, cardiac disease and stroke (Adams, et al., 2009).

Lower levels of health literacy can also have an impact on the stage at which a consumer engages with the health system and the types of conditions they present with. Avoidable mortalities such as diabetes, stroke, skin cancer, Ischaemic Heart Disease (IHD) and Chronic Obstructive Pulmonary Disease (COPD) all typically have improved health outcomes when treated early (Western Health, 2012).

Alarmingly, prospective studies have suggested a strong relationship between low health literacy and high mortality rates, particularly in the elderly. Those with poor health literacy levels have a 50% higher mortality rate over a five-year period; and low reading proficiency is the top predictor of mortality after smoking (Baker, et al., 2007) (Sudore, et al., 2006). Even when other factors such as age, sex, education, income, ethnicity and health status are considered the links between level of individual health literacy and outcomes remain (Bush, et al., 2010).

Broader Impacts

A limited amount of data exists around health literacy, health care utilization, and health care cost. Determining the cost of low health literacy to the individual, healthcare organisations and the system as a whole is difficult, as separating the effects of health literacy and other related concepts that influence behaviour is challenging (Eichler, Wieser, & Brügger, 2009).

From the limited US publications available, data has shown that those with poor health literacy incur higher medical costs individually, spending between US$143 and US$7,798 more per person per year compared to those with higher health literacy; and at a system level, additional costs corresponded to roughly 3-5% of total healthcare spending (Howard, Gazmararian, & Parker, 2005) (Eichler, Wieser, & Brügger, 2009). Though the economic costs of limited health literacy sound substantial, few rigorous studies are available and results are often mixed.

Prevalence

State and National Levels

Australian health literacy data for the population aged 15-74 years was collected in 2006, using the Adult Literacy and Life Skills Survey (ALLS) (Australian Bureau of Statistics, 2008) (Australian Bureau of Statistics, 2009). In 2006, just over one-third of Australians aged 15 - 74 had at least an adequate level of health literacy, defined as Level 3 health literacy or above (see Table 2). Only 6% of 15 - 74 year olds had more than adequate health literacy.

Total Australian Population Health Literacy Skills - ALLS

States and territories

Between the states and territories of Australia there are no exceptional differences in health literacy skill levels, apart from the Australian Capital Territory where there is significantly more individuals at skill Level 3 or above (56%) than other states and territories. The proportion of health literacy adequate or better health literacy (Level 3 or above) in the other states and territories ranges from 37% in the Northern Territory and Tasmania to 43% in Western Australia (Australian Bureau of Statistics, 2008).

Victorian levels

Reflective of the National levels, roughly just over one-third of Victorians aged 15 - 74 had at least an adequate level of health literacy, defined as Level 3 health literacy or above, and only 6% of 15 - 74 year olds had more than adequate health literacy (see Table 3).

Total Victorian Population Health Literacy Skills – ALLS

Measurement of Health Literacy

The large number of health literacy definitions include a range of concepts that are complicated to measure, which means many approaches and instruments have been developed to try to measure the term. Current measurement tools tend to narrowly focus on specific individual aspects health literacy, particularly reading ability and numeracy, with much less focus on the health literacy environment and ease of navigation, understanding and use of health services (ACSQHC, 2013). Most definitions present health literacy as being related to the possession of knowledge about health (Pleasant & Kuruvilla, 2008), but this idea is generally not reflected in existing measures. Key related concepts such as motivation and empowerment, or an individual’s ability to seek, understand and use health information are also generally not reflected in these existing tools (Jordan, Osborne, & Buchbinder, 2011).

With the best processes for measuring health literacy contested, approaches range from population-based surveys to measure the level of individual health literacy across the population, to short screening tools used to identify people with lower levels of individual health literacy in a clinical setting (ACSQHC, 2013). With health literacy being measured using different tools, they may be measuring different things.

The absence of a common definition of health literacy, and the lack of consistent measurement, make it difficult to determine the accuracy of data being produced and to compare between individual and population levels. Particularly at the population level, interventions targeted at ‘at risk’ groups may be hindered if it is difficult to discriminate between groups of people with different levels of health literacy (Jordan, Osborne, & Buchbinder, 2011). The importance of creating an evidence base linking specific strategies and initiatives to improved health literacy and health outcomes is clear; however variation in data makes comparing results across studies difficult and delays the development of clear benchmarks for policy and program development aimed at addressing suboptimal health literacy (Jordan, Osborne, & Buchbinder, 2011).

Measurement tools and scales

There are generally two main approaches for measuring health literacy – at the individual level and at the population level. Individual tools are typically seen in research and clinical settings to gauge the health literacy levels in detail of the individual; whereas population-focused tools are used to measure, compare and find trends in the health literacy levels of a population.

The most commonly identified scales used in individual health literacy measurement are the Rapid Estimate of Adult Literacy in Medicine (REALM), the Test of Functional Health Literacy in Adults (TOFHLA) and the Newest Vital Sign (NVS) (ACSQHC, 2013) (Canadian Public Health Association, 2008) (Department of Health Victoria, 2014) (ACSQHC, 2014). A literature review saw 58 of 85 studies examining the relationships among health literacy, knowledge; behaviour and health outcomes used either the REALM or versions of the TOFHLA (Paasche-Orlow, Wilson, & McCormack, 2010).

The scales used to measure health literacy at the population level – The Adult Literacy and Life Skills (ALLS) and The National Assessment of Adult Literacy (NAAL) - have been developed to cover health promotion, health prevention, disease prevention, health care and navigation – all generally being the purposes for which people are provided with or seek health information (Canadian Public Health Association, 2008). These population-based measurement tools can determine trends in individual health literacy and measure the impact of population-based strategies (ACSQHC, 2014); and the Australian Government used the ALLS in it 2006 assessment of population health literacy.

Condition-specific scales also exist to measure health literacy in particular populations, for conditions such as cancer (Agre, Stieglitz, & Milstein, 2006), diabetes (Nath, Sylvester, & Yasek V, 2001), asthma (Apter, et al., 2006), HIV (Osborn, Davis, Bailey, & Wolf, 2010) and high blood pressure (Kim, et al., 2012).

Tools have also been developed to assess the health literacy environment of individual healthcare organisations. The Organisational Health Literacy Self‑Assessment Resource from Enliven provides health and social service organisations with a self-assessment tool to guide and inform development as health literate organisation. The resource details ten attributes of a health‑literate organisation, based on the Institute of Medicine’s, operationalised as a set of evidence-grounded processes or outcomes create an appropriate response to health literacy at the organisational level (Thomacos & Zazryn, 2013).

Determinants & Risk Factors

Unlike an acute or chronic disease, it is difficult to outline the explicit determinants and risk factors that can lead to poor health literacy. The concept itself can be classified as a determinant of health, as limited health literacy follows a social gradient and can further reinforce existing inequalities. For example, individuals with higher individual health literacy may have a greater understanding of the social determinants of health and be more inclined to act on these determinants (ACSQHC, 2014).

This chapter will discuss a range of determinants, risk factors and vulnerable population groups; and establish how these factors influence or impact health literacy. Many are a two-way relationship, some factors leading to poor health literacy, and poor health literacy leading to an increased likelihood of experience these factors.

The determinants are the broader societal factors which shape the way in which risk factors interact to result in poor population and individual health literacy. These determinants can be described as structural or societal factors that underpin the existence of health inequalities in Australia that require broader system or structural change. Beyond the determinants of health literacy, there are other more situational risk factors that affect health literacy levels. There is an association between risk and protective factors and health literacy which will enhance or impede health literacy levels. For instance, remoteness will not necessarily lead to poor health literacy levels; nor will high education and English as a first language protect guarantee high levels of health literacy, but they are correlated with health literacy levels. A risk factor will simply increase the possibility for poor health literacy levels.

Education

Education has one of the strongest roles in influencing individual health literacy. Both educational attainment and current educational participation are strongly linked with health literacy levels, as are related concepts such as reading practices in daily life (Canadian Council on Learning, 2008) and prior knowledge (Baker, 2006). Individuals with higher educational attainment (a higher level of completed education) have higher levels of adequate or better individual health literacy (ABS, 2006), an effect also seen in other literacy domains. In Australia, three-quarters of people with a bachelor degree or above had adequate or better health literacy, compared to half of those who finished education at Year 12 and 16 per cent of those who finished at Year 10 or below (ABS, 2006).

While educational attainment is known to be a strong determining factor for health literacy levels, daily reading practices (i.e. reading books, emails, newspapers), have been found to have an even stronger effect on health literacy (Canadian Council on Learning, 2008). Those in ongoing education (current educational participation) are also more likely to report higher health literacy levels than those who are not, whether formal or informal learning (Australian Bureau of Statistics, 2009).

Prior knowledge - an individual’s knowledge at the time before reading health-related materials or speaking to a health care professional - also has a role in influencing individual health literacy. Prior knowledge is both an individual’s vocabulary (the body of words known to a person) and conceptual knowledge (understanding and interpreting concepts). This is why general reading fluency cannot measure an individual’s health literacy. Two individuals with similar general reading fluency will have differences in their baseline knowledge of health vocabulary and concepts, meaning they will have different abilities to read and understand health-related material (Baker, 2006). Education has a role in developing an individual’s vocabulary and conceptual knowledge.

Culture and Language

Culture and language can influence the way that people make meaning out of their environment, and influence their understanding and responses to health issues. This can lead to differing cultural expectations and understanding of health-related issues. Additional issues such as a poor understanding of English and unfamiliarity with the Australian healthcare system are also barriers which may inhibit adequate health literacy.

In Australia, almost three million individuals aged 15 to 74 years speak English as a second language. The 2006 Adult Literacy and Life Skills Survey found that only a quarter of this population had achieved a level of individual health literacy described as adequate or better, compared with nearly half of those whose first spoken language was English (ACSQHC, 2014).

Employment

Growing evidence suggests that health literacy is related to other outcomes that have an impact on health. Previous research has found that individuals with very low health literacy levels are nearly three times more likely to be receiving income support than those with high health literacy levels; even after removing the impact of age, gender, education and mother tongue (Canadian Public Health Association, 2008). This suggests that poor health literacy may limit an individual’s ability to generate income and secure employment.

In Australia, those who are employed are more likely to have higher levels of health literacy than those who were unemployed or outside the paid labour force. Nearly half of employed people have an adequate level of health literacy, whereas only a quarter of the unemployed/not in the labour force have an adequate level of health literacy (ACSQHC, 2014). Australians employed in occupations that require greater education and skill levels are more likely to have higher health literacy, with 71% of Professionals at an adequate level or above compared with 24% of Labourers (Australian Bureau of Statistics, 2009).

Disability

Individuals living with a disability can potentially be at risk of low health literacy for practical reasons such as poor vision, poor mobility or an intellectual impairment. The way in which the health literacy environment is designed can also exacerbate the impact of a disability; i.e. an individual with mobility issues may have difficulties with physical access to health services, or an individual with an intellectual impairment have difficulty communicating with their healthcare provider (Smith, 2009).

Gender and age

Australian males and females overall possess similar levels of health literacy; however when comparing different health literacy levels by age, more younger females (15-44 years) than younger males possess an adequate level or above of health literacy, but more older males (44 years and older) than older females possessed an adequate level or above. The proportion of Australians with at least adequate health literacy generally increases from the 15 to 19 years age group up to the 35 to 39 years age group, and then generally declines for those aged 40 years and over. More than 8 out of 10 older Australians aged 65 - 74 years do not have an adequate level of health literacy (Australian Bureau of Statistics, 2008).

The differences between these age groups may be associated with factors such as the generational difference of health care participation expectations, the effects of cognitive decline on mental processing skills, the length of time since leaving formal education, and the lower levels of formal education received by older generations. The physical, psychological and social change that comes with ageing often increases dependence on health care services; so it is important an individual has an adequate level of health literacy to effectively care for oneself, and interact and communicate with health services (ACSQHC, 2014).

Stigma and Community Attitudes

As a feature of many chronic health problems, stigma contributes to a hidden burden of illness. Health-related stigma is generally characterized by social exclusion of individuals who identify with particular health problems (Weiss, Ramakrishna, & Somma, 2006). Stigma related to having poor health literacy can severely impair an individual’s communication with their healthcare professionals and their potential to benefit from health services (Easton, Entwistle, & Williams, 2013). This also links to the universal precautions approach (section 1.4), which outlines the need for the health system to reduce the complexity of the information and services that are provided, not just for those who appear to have literacy issues but for all. This in turn reduces the issue of stigma for individuals, as they don’t need to disclose their health literacy levels as they are being treated in a universal way.

Self-assessed health status

In the absence of a formal measurement scale, an individual’s self-assessed health status can provide an insight into how they perceive their own health. Those who have poor or fair health are more likely to have inadequate health literacy (Australian Bureau of Statistics, 2009).

The Australian 2006 Adult Literacy and Life Skills (ABS, 2006) measured self-assessed health related to mental, physical and social wellbeing. Individuals with an adequate level of health literacy or above were far more likely to report they had ‘a lot of energy a good bit of the time’ and that they ‘felt calm and peaceful for a good bit of the time’; and far less likely to report that they ‘felt calm and peaceful for none of the time’ and that ‘physical health or emotional problems interfered with social activities only some of the time’. Overall, those with adequate or better health literacy were more likely to report their self-assessed health status excellent or very good than good, fair or poor.

The Healthcare Environment

A largely forgotten area until recently; the health literacy environment has a very strong impact on an individual’s health literacy levels. As discussed in section 1.5, the role that the healthcare workforce, organisations and systems plays in the context of health literacy is important to understand when health literacy essentially the interaction between the skills of an individual and the complex demands of the health system in modern society, the settings and contexts that influence how consumers make decisions and take action about health and health care are crucial (Rudd, 2013). Become a health literate individual in the always expanding health environment is a growing challenge (WHO, 2013). Navigating health and social service systems, understanding health information and participating in a client-practitioner relationship can either facilitate improved individual health literacy or create a significant barrier for those with low health literacy (Thomacos & Zazryn, 2013).

Interventions

The approach taken by the Australian Commission on Safety and Quality in Health Care (ACSQHC) in their 2014 publication ‘Health Literacy: Taking Action to Improve Safety and Quality’ has been adopted as the best-practice evidence based intervention methods for improving health literacy.

ACSQHC propose three action areas to address health literacy in a coordinated way in Australia. While the report acknowledges the large amount of work already underway in Australia, it recognises that the majority of these approaches are fragmented with minimal prospects for coordination, and that systems to improve health literacy at a larger scale are absent.

The three approaches suggested to address health literacy in Australia are:

• Embedding health literacy into systems – the development and implementation of systems and policies at the organisational and societal level that support action to address health literacy, such as employing policies that prioritise health literacy in program planning and designing healthcare organisations that are easy for consumers to navigate.
• Ensuring effective communication – ensuring that health information and communication is appropriate for the needs of consumers; and supporting effective partnerships and communication between consumers, healthcare providers and others.
• Integrating health literacy into education - educating consumers and healthcare providers through population health programs, health promotion and education strategies, school health education and social marketing campaigns, as well as formal education and training of healthcare providers.

This approach has been adopted as it focuses on taking action within and across the health sector; with actions reflecting international approaches to addressing health literacy, key points where individual health literacy and the health literacy environment influence outcomes, and evidence about strategies to address health literacy and other related interventions.

ACSQHC ‘A coordinated approach to health literacy’ (ACSQHC, 2014)

Embedding health literacy into systems

A coordinated, effective and sustainable approach to health literacy needs to be embedded in the systems and processes of society, health care and other organisations (Thomacos & Zazryn, 2013). Systems are the policies, procedures and practices within an organisation, as well as the wider societal systems such as legislation, regulation, policy and programs.

A range of organisations beyond the health sector have an influence on individual health literacy or the health literacy environment including education, welfare, public, private, government and non-government bodies. They may not necessarily deliver health care or other services; but they may provide advocacy and support for consumers, undertake research, educate the public, consumers and healthcare providers, provide healthcare insurance or develop policy, legislation, processes and frameworks about the delivery of care, provision of education and other relevant issues. Given this mix, there is understandably a significant variation in how strategies to address health literacy can be embedded in systems. These strategies will be influenced by the role, context and focus of different organisations (ACSQHC, 2014).

Examples from the Australian modified version of the IOM 10 attributes of a health-literate organisation by Enliven (Thomacos & Zazryn, 2013)

Embedding health literacy in high-level systems – examples:

• Legislation - Victorian Public Health and Wellbeing Act 2008
• Policies and plans - ISIS Primary Care Policy & Procedure Manual: Health Literacy (featured in ‘The Gippsland Guide to becoming a Health Literate Organisation’ (Gippsland Primary Care Partnerships, 2015)
• Standards - such as the Royal District Nursing Service’s Translation Standards (Michael, Aylen, & Ogrin, 2013) and the National Safety and Quality Health Service Standards Version 2
• Funding mechanisms - Victorian Department of Health and Human Services funding to community health services (ACSQHC, 2014)
• Curriculums - such as the inclusion of issues relevant to health literacy (including literacy, numeracy and critical thinking) in the draft Australian Curriculum for schools (ACSQHC, 2014)

Embedding health literacy into organisational policies and processes – examples:

• Have an explicit organisational commitment to health literacy in mission statements, policies and programs
• Develop and implement health literacy policies
• Set health literacy improvement goals and accountability measures and conduct annual assessments of health literacy across the organisation
• Allocate resources (fiscal and human) to meet health literacy improvement goals assign a designate with responsibility and authority for health literacy oversight
• Create a culture that places equal value on professional and consumer perspectives, and that emphasises that communication is made up of two-way interactions
• Redesigns systems to maximise an individual’s capacity to learn how to maintain good health, manage illness or disease, communicate effectively and make informed decisions
• Incorporate health literacy into all planning activities
• Assess the impact of all policies and programs on individuals with limited health literacy.

Ensuring effective communication

When discussing effective communication, there are two areas to be considered - the delivery of clear, focused and useable information about health and health care, and effective interpersonal communication. These actions regarding the quality and accessibility of information and the way in which it is communicated are critically important to health literacy. The content and format of written and electronic health information needs to be easy to understand for those with low levels of individual health literacy, and needs to be communicated verbally or nonverbally in an accessible way. Taking a coordinated and consistent approach to addressing health literacy requires removing any barriers and improving communication and information about health and health care (ACSQHC, 2014).

Examples from the Australian modified version of the IOM 10 attributes of a health-literate organisation by Enliven (Thomacos & Zazryn, 2013)

• Prioritise clear and effective communication across all levels of the organisation and across all communication channels
• Collaborate with members of the target community when designing, pilot testing and developing materials
• Ensure staff are appropriately trained in two-way, effective communication techniques
• Foster a culture that emphases the verification of understanding of every communication
• Ensure adequate time is given to each interaction
• Ask about and accommodate different communication preferences
• Plan for and provide language assistance (such as interpreters or bilingual staff)
• Use easily understood language and symbols on all signage in commonly spoken languages for the region
• Assist in scheduling appointments with other service providers, and do not rely on service users to relay information among care providers
• Assist service users to complete relevant forms and/or documents
• Evaluate all distributed materials using assessment tools and consumer feedback
• Choose and create materials that meet clear communication requirements
• Stock high-quality education materials in a variety of formats.

Integrating health literacy into education

As previously discussed, health literacy and education are closely related. General literacy is shaped by an individual’s education, which in turn impacts their knowledge and skills in understanding health information and systems, and influences their capacity to make decisions and take action for their own health and health care. Education and training for consumers about health and health literacy needs a focus on individual capacity building to understand, appraise, apply and act on health information; through formal methods such as schools, universities and other training providers or informal methods such as peer-support groups, the workplace or with a healthcare provider.

Education is also important from the healthcare provider perspective, as it is essential the workforce understands individual health literacy and the health literacy environment. Healthcare providers tend to overestimate their knowledge of health literacy, so there is opportunity to improve knowledge about health literacy. This knowledge includes the influence that health literacy has on health and health care, limited health literacy health outcomes, roles in improving the health literacy environment, interpersonal and communication skills and providing or accessing support for people with specific individual health literacy challenges.

Examples from the Australian modified version of the IOM 10 attributes of a health-literate organisation by Enliven (Thomacos & Zazryn, 2013)

• Designate an office or official responsible for developing, implementing, and committing resources necessary to train organisation employee
• Consult with internal experts to identify existing capacity to provide language assistance services (e.g. bi- or multilingual staff)
• Evaluate the health literacy skills of the workforce on a regular basis
• Develop, make available, and/or disseminate training materials that will assist in providing effective communication
• Supports staff to attend internal and external specialised health literacy training.

References