Health Literacy Review Paper 2018 Part B

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.

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