Literature review of health literacy education, training tools and resources for health providers
1. Introduction 2
1.1 Health literacy defined as an individual skill set 3
1.2 Health literacy defined as an interactive practice 3
1.3 Building health literacy 4
1.4 Assessment of health literacy 4
1.5 The concept of universal precautions 5
1.6 The role of the health workforce 6
2. Communication in health care contexts 7
2.1 Patient-centred communication 7
2.2 Spoken communication 8
2.3 Written communication 9
2.4 Using both spoken and written communication 10
2.5 Cultural competence and health literacy 11
3. Tools health professionals can use to build health literacy 12
3.1 Finding out what patients already know 12
3.2 Checking understanding or teach-back 13
3.3 Medicine reviews 14
3.4 Asking questions 14
3.5 Providing information in logical steps 14
3.6 Helping patients anticipate the next steps 14
3.7 Using written materials effectively 14
3.8 Reinforcement 14
3.9 Action plans 15
3.10 Pill cards 15
Appendix 1 – MeSH terms 18
MeSH terms 18
This literature review was prepared by Workbase for the Health Quality & Safety Commission. It provides guidance for the development of the training tools and resources that have been prepared for the Health Literacy Medication Safety demonstration project.
This project aims to provide key pharmacy staff with information and tools to increase their understanding of health literacy, adult learning theory and communication skills.
Health literacy and the role of health professionals
As the sphere of health continues to grow and become more complex, the relationship between the health system, health professionals and the health consumer also continues to change and evolve. Health literacy is a concept that lies at the centre of this evolving relationship.
While health literacy is a relatively new field, particularly in New Zealand, definitions of health literacy have been informed by the Organisation for Economic Co-operation and Development (OECD) surveys of literacy amongst individuals and societies (Ministry of Education 2008). ‘Health literacy’ and ‘literacy’ are relative terms in that the health literacy (knowledge and skills) required in a given situation is determined by the health literacy demands created by the situation. These demands include immediate literacy skill demands, such as reading health materials or speaking with a health professional, and health knowledge demands, such as understanding how the body works or disease theory. These demands also include systemic factors and influences, such as the time a health professional has to spend with a patient, and how complex it is to access health services and support. Health literacy is also affected by the unfamiliarity of information and concepts, and the stress or anxiety experienced by patients and families in health situations.
Health literacy involves more than using literacy skills in a health context. Literacy and numeracy skills and knowledge, such as reading, writing, speaking, listening and numeracy, are central to health literacy. The term also encompasses skills and knowledge unique to health, such as a conceptual understanding of how the body works, knowing when and where to seek health advice, being able to evaluate the appropriateness of health advice, being able to interpret and describe health symptoms, as well as acting with confidence in a health setting (Institute of Medicine 2004; Zarcadoolas et al 2006; Rudd et al 2007).
There is a variety of definitions of health literacy that generally fall within two categories: health literacy as a set of individual capacities that allow a patient to successfully navigate a health care environment; or health literacy as an interaction between individual capacities of patients, families and health professionals and the health care environment in which they operate (Nutbeam 2008; Rudd et al 2007; Institute of Medicine 2004; Kickbusch et al 2005). How health literacy is defined affects the way in which improvements in health literacy are sought and how (or whether) health literacy is measured (Nutbeam 2008; Baker 2006).
1.1 Health literacy defined as an individual skill set
The United States’ Department of Health and Human Services (2000, p11) defined health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions”. The essence of this definition lies with the ability of the individual to obtain, understand and use information (Baker 2006; Rudd et al 2007) and therefore positions health literacy as an individual issue.
A very similar definition is used in New Zealand. The Ministry of Health (2010, piii) defines health literacy as “the ability to obtain, process and understand basic health information and services in order to make informed and appropriate health decisions”. This definition has also been adopted by the Health Quality & Safety Commission New Zealand.
On the face of it, both the above definitions view the individual patient as the critical factor in health literacy. The patient’s skills and abilities determine health literacy. However, these definitions also imply that the individual is not in charge of the material that they receive and how the health system is organised. This is the responsibility of the health professional and the health system (Institute of Medicine, 2004).
1.2 Health literacy defined as an interactive practice
Although the previous definitions place responsibility for health literacy on the individual, the individual does not act alone in obtaining, processing and understanding health information. It is most likely that a health professional or health organisation will be involved in providing the information for the individual to process and, depending on the complexity and familiarity of the information and the way it is delivered to the individual, the health professional and health organisation may be very influential in determining whether the individual can obtain, process and understand the information.
More recently it has been argued that if health literacy is the ability to function in a health care environment, then health literacy must rely on aspects of both the individual and other parties involved in communication, as well as those designing health services. According to the Institute of Medicine (2004, p2) health literacy “emerges when the expectations, preferences and skills of individuals seeking health information and services meet the expectations, preferences and skills of those providing the information and services”. This definition sees health literacy as a dynamic state that may depend on a variety of factors, including the medical problem being treated, the health care provider and the system providing the care (Baker 2006).
Where the health literacy required in managing a health condition is greater than the existing skills and knowledge of a patient or family, health professionals have a role in reducing any unnecessary health literacy demands. They also have a role in helping patients and families build their health literacy in order to manage their health effectively (Institute of Medicine 2004; Edwards et al 2012; Rudd et al 2007).
Edwards et al (2012, p151) emphasise the complex, social and changing nature of health literacy by defining it as a “multi-dimensional construct that develops over time, across different health contexts and through social interactions”. The authors see health literacy as developing along a continuum towards greater knowledge, greater self-management and greater participation in decision making, with health literacy as both a process and an outcome. For example, developing health literacy skills and knowledge is an ongoing process. However, developing the health literacy skills to manage a health condition at a particular point is an outcome.
Koh et al (2012) note that a chasm often separates what health professionals intend to convey in written and spoken communication and what patients actually understand. Further, while this mismatch has, in the past, been viewed as an issue of patient deficit caused by patients lacking health skills and knowledge (Koh et al 2012), it is now recognised that health literacy is a dynamic systems issue reflecting the complexity of health information being presented and the health care system being navigated (Rudd 2010; Parker and Ratzan 2010). Complex medical conditions, wide-ranging treatment options and service provision, as well as an array of communication channels, further impact on health literacy demands for patients and families.
Consequently, system-level changes are needed at both health professional and health organisation level if the issue of health literacy is to be addressed (Institute of Medicine 2004; Koh et al 2012).
1.3 Building health literacy
Building health literacy skills and knowledge includes understanding how to manage health risks and what is needed to improve health in the immediate and longer term. Reducing the unnecessary health literacy demands for managing a health issue may involve providing limited and prioritised information to patients and families, or focusing solely on ‘to-do’ tasks. At other times, it may require providing increased (but clearer) information to patients or providing more opportunities over time to build patient knowledge and skills. In order to build health literacy, people need to understand their health status, the health issue and how to follow treatment programmes. Ensuring that a patient adheres to a treatment programme may be a focus for many health professionals. The initial focus may be on treatment/task compliance, however to improve health literacy (the health skills and knowledge of the patient and family) a patient needs to understand their health condition and how to manage and prevent illness. How patients are able to respond to these demands depends on their skills and knowledge, and support available from health professionals (Reid and White 2012).
Therefore, building health literacy requires improved health knowledge along with the ability to put this knowledge into action, thus enabling individuals to gain greater self-control over their health and the health decisions they need to make (Edwards et al 2012).
Building health literacy draws on principles of adult education and learning. It requires health professionals to act as adult educators. In doing so, they draw on a patient's prior knowledge and experience in order to strengthen the patient’s understanding of health. Starting with what the patient knows about their own condition opens the door to increased interaction, participation and critical thinking (Nutbeam 2008). Similarly, building health literacy requires more than the provision of clear information; it also involves purposefully building the skills and knowledge of individuals, their family and their communities (Reid and White 2012).
1.4 Assessment of health literacy
Health professionals are often concerned that patients may not understand the information or advice they give them. Nutbeam (2008, p2073) explains that, according to this view, “the effects of poor literacy can be mitigated by improving both the quality of health communications, and a greater sensitivity among health professionals of the potential impact of low literacy on individuals and in populations”.
The approach to identifying whether patients had low health literacy has originally been to assess the vocabulary, reading or numeracy of patients.
In the United States, health literacy assessment tools, such as the Rapid Estimate of Adult Literacy in Medicine (REALM) or the Test of Functional Health Literacy in Adults (TOFHLA), are widely used to screen patients for low health literacy. The REALM tests word recognition and pronunciation, while the TOFHLA measures reading fluency through prose and document literacy. Other assessment tools include the Newest Vital Sign (Pfizer 2005) as well as modified versions of REALM and TOFHLA for different populations or different contexts such as oral health.
These assessment tools have been used in the United States not just in clinical situations but particularly in research situations where researchers want to identify ‘low health literacy populations’. The assessment tools have also been used in research projects in other Western countries, including a small number of research studies in New Zealand, eg, Bakker et al 2011; Veerasamy 2010; Yates and Pena 2006.
The genesis of these assessment tools was the litigious nature of the United States’ health system, where health organisations and health professionals sought to identify patients who might sue them for not being made fully aware of medical procedures or outcomes.
The validity of these tools has been heavily criticised by a number of health literacy experts. In relation to REALM and TOFHLA, Baker (2006, p880) states that “neither test is a comprehensive assessment of an individual’s capacities”, while others state that these assessment tools do not address the multiple domains of health literacy. By only measuring health literacy in terms of reading at the individual word level, the tools omit other critical skills, such as conceptual knowledge, listening, speaking and numeracy, all of which are needed to get a true picture of a patient's health literacy level (Zarcadoolas et al 2006; Institute of Medicine 2004).
Paasche-Orlow and Wolf (2007) claim that no assessment programme for limited health literacy has been proven to be effective and that there is considerable evidence that the potential for harm, in the form of shame and alienation, outweighs any potential benefits. Cornett (2009) also emphasises the potential for harm by highlighting that people with low literacy skills already feel stigmatised and would not welcome a tool that exposes their inability to read.
Importantly, Cornett (2009) argues that unless health care professionals are trained in communicating effectively with their patients, knowing a patient’s literacy levels will not result in improved care.
Currently, individual patients’ health literacy skills are not routinely assessed in clinical situations in New Zealand.
1.5 The concept of universal precautions
People with low health literacy are more likely to have ongoing difficulties in making informed health decisions, but people with good health literacy skills can also find it difficult to understand health care information (Wolf et al 2007). Episodic instances of low health literacy may occur when a person is first diagnosed with an illness, receives unfamiliar text types, and is unwell or stressed. The Institute of Medicine (2004, p11) illustrates this point, stating, “even highly skilled individuals may find the systems too complicated to understand, especially when these individuals are made more vulnerable by poor health”. This further undermines the validity of assessing individuals’ health literacy using the tools (such as REALM, TOFHLA and Newest Vital Sign) referred to above.
Instead of assessing individual patients, many experts recommend that health professionals assume that all patients experience some degree of difficulty when in health environments and therefore apply the principle of universal precautions to health literacy (which is familiar to health professionals and organisations in the context of preventing blood-borne diseases) (Baker et al 2011; Paasche-Orlow and Wolf 2007; DeWalt et al 2010; Reid and White 2012). Taking a universal precautions approach to health literacy involves finding out what patients already know, sharing clear information with patients and helping patients build their understanding of how their body works, their health issues and associated treatment.
The United States Institute of Medicine (2004) states that health professionals have a key responsibility in lifting health literacy levels, suggesting that it is the health professionals’ skills and expectations that drive health literacy levels. The central role of health professionals is reinforced by Edwards et al (2012), who state that it is the capacity of health professionals to empower or disempower patients and facilitate or limit health literacy. The universal precautions approach means that all patients and families benefit from the principles of good patient–provider communication.
The universal precautions approach to health literacy gained significant credibility with the publication in 2010 of the Universal Precautions Toolkit by the United States’ Agency for Healthcare Research and Quality.
1.6 The role of the health workforce
The New Zealand Ministry of Health’s (2010) research report Kōrero Mārama states that instead of viewing health literacy as an issue for the individual patient (where the onus is on the individual to lift their skills) the solution lies in a concerted effort from all sectors, including schools, government agencies and the health care system.
Health literacy is a relatively new concept in New Zealand and at present there is little published data on effective interventions for improving health literacy levels in New Zealand (New Zealand Guidelines Group 2011). In addition, much of the health sector appears to have a limited understanding of how to improve health literacy, and the principles and relevance of adult learning theory to health literacy (as noted by New Zealand Guidelines Group 2011, p7) and as such “opportunities to create effective learning opportunities for patients in the course of meeting health needs appears underdeveloped”. One of the key recommendations of the New Zealand Guidelines Group report is that priority needs to be given to the up-skilling of the health workforce in understanding and applying principles of adult learning theory to the delivery of health services.
Since the New Zealand Guidelines Group report was published, a number of influential international reports have appeared which highlight that the role of the workforce in developing health literacy exists within a systemic or organisational frame, where a number of interconnected aspects are at play (Brach et al 2012; Koh et al 2012).
For example, the Institute of Medicine has published the 10 attributes of a ‘health literate organisation’, with workforce development being one of those attributes.
“A health literate health organisation:
has leadership that makes health literacy integral to its mission, structure, and operations
integrates health literacy into planning, evaluation measures, patient safety, and quality improvement
prepares the workforce to be health literate and monitors progress
includes populations served in the design, implementation, and evaluation of health information and services
meets the needs of populations with a range of health literacy skills while avoiding stigmatisation
uses health literacy strategies in interpersonal communications and confirms understanding at all points of contact
provides easy access to health information and services and navigation assistance
designs and distributes print, audiovisual, and social media content that is easy to understand and act on
addresses health literacy in high-risk situations, including care transitions and communications about medicines
communicates clearly what health plans (in a NZ context: public funding) cover and what individuals will have to pay for services.”
(Brach et al 2012, p2).
These attributes require a workforce approach to building health literacy and will require further organisational resources and responses, which include a private area for conversations, improved recruitment and strategic induction, training and performance management processes.
In New Zealand, the Ministry of Health (2012c) has acknowledged a rationale for improving health literacy at a systemic level including the role of health organisations:
“Improving health literacy in New Zealand is important, especially with our increased expectations for patient and whānau to take more responsibility for the management of their health throughout the continuum of care. However, health literacy should not depend on the skills of the individual patient and whānau alone. It is an organisational value that should be considered core business, incorporated into all levels of service planning delivery and even the way health centres and hospitals are laid out.” (p7)