Introduction to health literacy

Case scenario

Mrs G, one of your regular customers, has type 2 diabetes and wants to take an active role in managing her health. While in the pharmacy, she asks if you can recommend some online sources for reliable health information that are easy to understand. She confides that she mostly trusts her sister for advice, as her sister is being treated for type 2 diabetes as well. You have always given Mrs G consumer product information leaflets with her prescriptions, and assumed that she understood the information, as she appears to be able to read the labels well. You now suspect she needs some help in interpreting written information. How would you assess her health literacy?

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Introduction

As one of the most accessible health professionals in Australia, pharmacists interact daily with patients and carers about their medicines and health choices. Also inherent in pharmacy practice is advice on health promotion, health education and disease prevention. Health promotion and education contribute to an individual’s ability to access, understand and use health information and health services, known as their health literacy.¹ 

As pharmacists, we may take for granted our personal health knowledge, knowledge of the health system and health literacy, but it is important that we are aware that our community is composed of a diverse group of individuals all sitting along a health literacy spectrum. 

What is health literacy?

There are hundreds of definitions of health literacy. However, an individual’s health literacy can be broadly defined as their ability to find, use, evaluate and apply information to access health services and manage their health.² Health literacy is an essential lifelong skill that is highly transferable to multiple health conditions (mental health, cardiovascular disease, diabetes), considerations (vaccination, surgery) and contexts (home, community and hospital). 

In the past, our understanding of health literacy was quite narrow: the patient was considered health literate or not based on their reading and numeracy skills. A patient was treated as an independent entity navigating their health journey in isolation.³ While public health and clinical definitions of health literacy still differ according to their origin, efforts have been made to bring these definitions closer together.³

Over time, our understanding has evolved to acknowledge that health literacy includes three important elements: the individual, their social networks (community), and the health and community services they are attempting to access (see Figure 1).

Source: Adapted from Nash, Elmer & Osborne⁴

An individual’s health literacy can be defined as “the ability to make sound health decisions in the context of everyday life: at home, in the community, at the workplace, the healthcare system, the marketplace, and the political arena. It is a critical empowerment strategy to increase people’s control over their health, their ability to seek out information and their ability to take responsibility”.⁵

Healthcare providers, and community and health service organisations, should ensure the health system is responsive to the health literacy needs of individuals and communities, and support individuals with health literacy challenges to develop the skills they need to manage their health.⁶

As pharmacists, we have the skills needed to identify different factors that influence the health literacy and health outcomes of our patients. Important factors to consider are the social determinants of health (SDHs), also referred to as the ‘causes of the causes’. The World Health Organization (WHO)⁷ refers to SDHs as the conditions in which people are born, grow, work, live and age. According to Whitehead and Dahlgren,⁸ SDHs include our individual lifestyle factors, community influences, living and working conditions, and more general social conditions. 

External forces and systems also influence our SDHs on a daily basis. These include economic policies and systems, development agendas, social norms, social policies and political systems.⁷ 

Importantly, health literacy has been defined as an SDH in its own right.⁹ In other words, through developing and possessing health literacy assets, patients can overcome health inequities that exist in their life and community more broadly. 

There are a number of tools and strategies pharmacists can employ to gauge the health literacy status of their patients and review the health literacy responsiveness of the pharmacy staff and services. To support quality use of medicines (QUM) and optimise patient health outcomes, pharmacists need to adapt their practice in response to the health literacy status of the local community. Many pharmacists may already be doing these things intuitively, but it is useful for pharmacists to have access to frameworks and theory to guide their practice in order to meet the needs of their patients, so they can access and understand the information needed to make appropriate health decisions.

A call for action: health literacy for all Australians  

The Shanghai Declaration on Promoting Health in the 2030 Agenda for Sustainable Development identified health literacy as a critical determinant of health and urged for global investment to enhance health literacy throughout the life course.¹⁰ 

In 2014, Australian state and territory health ministers endorsed the Australian Commission on Safety and Quality in Health Care’s National Statement on health literacy (HL) as Australia’s national approach to addressing HL.¹¹ In the statement, the commission proposed a coordinated approach to HL based on: (1) embedding HL into systems (organisational HL), (2) ensuring effective communication, and (3) integrating HL into education for consumers and healthcare providers.

Reflective questions to consider:

• Does your state or territory have a health literacy action plan? Why would it be important?
• Where can healthcare providers access health literacy education/tools? 
• What services or opportunities are there for your patients to develop their health literacy?

It has been acknowledged that without health literacy we will struggle to overcome the non-communicable disease (NCD) burden. In 2019, NCDs such as cardiovascular disease, diabetes, cancer and stroke caused 278.5 deaths per 100,000 population in Australia.¹² The associated risk factors are largely preventable. In addition, we need to manage the hysteria and misinformation being generated in response to COVID-19, leading to vaccine hesitancy and resistance to public health advice.

More than ever, it is important to build the health literacy capacity of our whole community to enhance self-sufficiency and self-care nationwide. Current health budgets and use of health services are unsustainable. A health literate Australia with health literacy responsive services will be vital if we are going to improve QUM and reduce the increasing burden on our health system.

Distributed health literacy

A patient’s health literacy skills are often dispersed and shared across their social networks, including friends, family and other social supports.¹³ Each day pharmacists see examples of this in their practice. The concept of distributed health literacy was first described by Edwards et al in 2015,¹⁴ when they confirmed that accessing, understanding, evaluating and using health information was often not an individual task. It is important that we, as pharmacists, are aware of this and, where possible, seek permission to involve those supports in the provision of information and care.

Health literacy responsiveness

Pharmacists respond to patients’ healthcare needs on a daily basis, and health literacy responsiveness is likely to be a familiar concept for pharmacists. It is defined as the “provision of services, programs and information in ways that promote equitable access and engagement, that meet the diverse health literacy needs and preferences of individuals, families and communities, and that support people to participate in decisions regarding their health and social wellbeing”.¹⁵

Tools such as the Optimising Health Literacy process (Ophelia) have been developed to enable health and community services to self-assess their service for health literacy responsiveness. Most have been derived from the US National Academy of Medicine’s Ten Attributes of Health Literate Health Care Organizations¹⁶: 

1. has leadership that makes health literacy integral to its mission, structure and operations
2. integrates health literacy into planning, evaluation measures, patient safety and quality improvement 
3. prepares the workforce to be health literate and monitors progress 
4. includes populations served in the design, implementation and evaluation of health information and services 
5. meets the needs of populations with a range of health literacy skills while avoiding stigmatisation 
6. uses health literacy strategies in interpersonal communications and confirms understanding at all points of contact 
7. provides easy access to health information and services and navigation assistance 
8. designs and distributes print, audiovisual and social media content that is easy to understand and act on 
9. addresses health literacy in high-risk situations, including care transitions and communications about medicines 
10. communicates clearly what health plans cover and what individuals will have to pay for services.

A self-assessment tool such as the Organisational Health Literacy Responsiveness (Org-HLR) tool is useful for Australian pharmacy owners and pharmacists to review their current practice and services.¹⁵ Self-assessment tools also offer professional development, quality care and quality enhancement opportunities for the pharmacy, pharmacist/s, staff and patients.

As health professionals, we are known to overestimate the health literacy of our patients.¹⁷ We take for granted the health knowledge and insight we have gained from working within the health system each day. Therefore, it is important that we understand the true health literacy status of our patients and local community and respond appropriately. 

The impact of health literacy on the health of Australians 

Australians with low health literacy are more likely to have suboptimal health behaviours and health outcomes, resulting in increased healthcare costs to the individual, health payer and society.¹⁸ Low health literacy can be associated with less engagement with health services, including preventive services (e.g. cancer screening),¹⁹ higher hospital readmission rates,²⁰ poorer understanding of medicine instructions^21,22 and a lesser ability to self-manage care.²³

In contrast, higher levels of health literacy are associated with greater patient involvement in shared decision making,²⁴ which is important in patient-centred care. There is ample evidence that improving health literacy is associated with greater self-sufficiency, increased ability to self-care, adoption of positive health behaviours, increased preventive initiatives, better health outcomes and lower health care costs.^25-27 Improved health literacy is therefore a key element of shared decision-making between patients and health professionals for their better health. 

Health literacy across the life course

An individual’s health needs change across their life course – from birth to end of life. Pharmacists encounter patients from all stages of life and need to be responsive to their changing health needs. In addition, health literacy develops throughout life and is context-specific, varying according to different health issues (e.g. diabetes), life stages (e.g. maternal health) and different forms of communication (e.g. digital platforms, social media).²⁸ 

Importantly, health literacy can support health and wellbeing throughout people’s lives.¹¹ To be successful, this requires a whole-of-government strategy, whereby education, health and community work collaboratively to ensure health literacy is supported across the life course and in multiple contexts. A priority that cuts across all three sectors, health literacy provides us with an opportunity to activate the Health in All Policies agenda within our health service delivery.²⁹ As pharmacists, we know that health doesn’t just happen in the pharmacy or the hospital and that our health literacy needs continually evolve with our health at any point in time. Health literacy therefore requires lifelong learning. 

Preconception/conception: a mother’s role 

It has been highlighted that pregnancy and early motherhood offer a window of opportunity to address the risk of NCDs earlier in the life course. Empowering women through improved health literacy may help reduce the intergenerational impact of NCDs.³⁰ If pharmacists can determine the health literacy strengths and limitations of mothers who use their service, it may lead to tailored health solutions that effectively support women to achieve and sustain healthy lifestyle practices for themselves and their families. This approach may short-circuit the intergenerational health issues we observe. Furthermore, involving mothers in the design, development and implementation of solutions can also ensure that services are locally relevant, responsive, effective and sustained.

Children/adolescents

While health promotion activities are common in schools, the success and sustainability of these efforts rely on children possessing their own health literacy assets. The WHO has highlighted the importance of programs in schools to support the development of essential health literacy assets^31,32 highlighting that we must start earlier in the life course in order to address the NCD burden. Also, ensuring health literate children for future pandemic responses should be a national priority. Useful when thinking about how to best develop a child’s health literacy, Nutbeam³³ outlined three levels of health literacy: functional, interactive and critical health literacy. In 2016, five core components of health literacy were identified: theoretical knowledge, practical knowledge, individual critical thinking, self-awareness, and citizenship.³⁴

In 2016, in recognition of a gap in HL development opportunities for children in schools,^35,36 the HealthLit4Kids program was founded.³⁷ HealthLit4Kids is an intervention co-designed with school communities and aligned with the Australian school curriculum which aims to increase health literacy of children, their families and communities. The program has been included in three WHO reports as an exemplar for how communities might address the increasing burden of NCDs globally. 

Pharmacist involvement in Tasmanian HealthLit4Kids schools included school excursions to meet the pharmacist, pharmacist-led education on the health effects of smoking, attendance at school expos and promotion of the program to their local school community. In recognition of the health promotion, health prevention and health protection roles that pharmacists fulfil each day, this initiative may offer a potential extended care role for pharmacists in the future. 

Adults

The impact of NCDs on the health, life expectancy and productivity of Australians has been highlighted. Health literacy also plays a fundamental role in medicine safety, especially in populations at risk of medicine-related harm.^38,39 Each year in Australia there are 250,000 hospital admissions due to medicine-related problems, costing Australia $1.4 billion.⁴⁰

Table 1 – Health Literacy Questionnaire results from National Health Survey ⁴¹

Domains 1–5 include 4-point scale (4 – ‘strongly agree’, 3 – ‘agree’, 2 – ‘disagree’, or 1 – ‘strongly disagree’)

Domains 6–9 include 5-point scale (5 – ‘always easy’, 4 – ‘usually easy’, 3 – ‘sometimes difficult’, 2 – ‘usually difficult’, or 1 – ‘cannot do or always difficult’)

Assessment of health literacy

Australia’s health literacy status 

In 2018, the National Health Survey invited Australians to complete the Health Literacy Questionnaire (HLQ; see Table 1).⁴¹ The HLQ consists of 44 questions encompassing nine health literacy domains:

1. feeling understood and supported by healthcare providers (Domain 1)
2. having sufficient information to manage my health (Domain 2)
3. actively managing my health (Domain 3)
4. social support for health (Domain 4)
5. appraisal of health information (Domain 5)
6. ability to actively engage with healthcare providers (Domain 6)
7. navigating the healthcare system (Domain 7)
8. ability to find good health information (Domain 8)
9. understand health information well enough to know what to do (Domain 9). 

The HLQ is distinct from other health literacy measurement tools such as Adult Literacy and Life Skills (ALLS), Test of Functional Health Literacy in Adults (TOFHLA), Rapid Estimate of Adult Literacy in Medicine (REALM), and Newest Vital Sign (NVS), as it determines the health literacy of an adult with consideration of their social supports (Domain 4) and perceived support from their healthcare providers (Domain 1 and Domain 6). 

In 2018, some 5,790 Australians completed the HLQ in the national health survey.⁴¹ Of those:

• the majority of people (97%) agreed or strongly agreed that they have sufficient information to manage their health
• the majority of people (96%) felt that they are understood and supported by healthcare providers
• the majority of people (92%) agreed or strongly agreed that they are actively managing their health.

While the majority of people (83%) felt that they are able to appraise health information, as many as 1 in 6 (17%) people disagreed or strongly disagreed that they are able to do so. Almost 2 in 5 people (39%) said they find it always easy to understand health information well enough to know what to do, with a further 54% stating that they usually find this easy.

So, while the majority of Australians who completed the survey suggested they are managing, there remain some priority populations who will require our support and a greater level of understanding and health literacy responsiveness. 

As pharmacists, it is useful to consider how health literacy responsive our current practice is and how patients perceive their health professionals as part of the healthcare team. If we examine the findings against Domains 1, 6 and 7 specifically, we can identify potential areas for our practice improvement. 

• Health literacy describes a person’s ability to access, understand and apply health information to manage their health.
• The Organisational Health Literacy Responsiveness (Org-HLR) tool can be used to self-assess the health literacy responsiveness of your pharmacy and its services.
• The Conversational Health Literacy Assessment Tool (CHAT) and Health Literacy Questionnaire (HLQ) can both be used to assess your patients’ health literacy.
• Distributed health literacy acknowledges that in some cultures and for some individuals health literacy is dispersed and shared across social networks, including among friends, family and other social supports.

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DR ROSIE NASH BPharm (Hons), Grad Cert (Research), PhD, MPS, Senior Lecturer Public Health & Health Systems is a pharmacist and senior lecturer in public health specialising in health promotion interventions. She is Australia’s foremost researcher in children’s health literacy. Dr Nash co-founded HealthLit4Kids and established the cross-institutional Health Literacy & Equity Research Group. She has expertise in research and evaluation design, co-design and community-based research.