Abstract
Health literacy has been defined by the World Health Organisation as ‘The cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health.’ Doctors need to assess and take into account a patient’s health literacy when communicating information. Poor health literacy is more common than doctors may appreciate, and health information is often produced at a level that many people may struggle to understand.
Clinical case scenarios
James a 45-year-old man is diagnosed with type-2 diabetes. He works as a HGV driver and is obese and smokes around 10 cigarettes a day. Getting to hospital appointments is difficult, as his job requires him to work away from home. As his GP, you need to help him gain an understanding of his condition and the importance of modifying lifestyle factors.
Angela is 25 years old and claiming universal credit as she is being treated for depression. She discovers that she is pregnant. Due to undiagnosed dyslexia and difficult parental circumstances she had limited educational opportunities. Health promotion and engaging with services will be important for Angela, but it is necessary to explain information at a level she can understand and to ensure any written materials are comprehensible.
What is health literacy?
Types of health literacy.
Health literacy is often assessed by means of questionnaire studies; these are the best way to assess functional health literacy, but some researchers have attempted to assess interactive and critical health literacy as well. One large questionnaire study on health literacy is the European health literacy survey, a Europe-wide study of functional health literacy. This study allows comparison between health literacy in different countries to inform policy but unfortunately the UK is not included. Improved health literacy has been cited as a public health goal in many different countries, but there is debate about whether population level strategies will achieve this (Freedman et al., 2009).
Why is health literacy important?
The business of being a patient can be a complex one. People are required to take responsibility for their own health and wellbeing. If patients are to make choices about their own health and wellbeing, it is essential that they understand the health information they are given.
The rise of chronic disease and multi-morbidity makes the topic of health literacy even more pertinent. Most chronic diseases will require patients to complete a number of tasks relating to the illness from monitoring their symptoms, e.g. home monitoring of blood pressure or blood sugars, taking medications or adhering to, for example, a different diet. Understanding why to do these things and how to do them is important. A patient with type-2 diabetes may only have one annual doctor review per year. If they are to successfully manage their condition it is essential they are able to seek out and process information about their condition for themselves. The NHS in the UK does not yet provide a coordinated service for multi-morbidity, so patients find themselves with multiple appointments with multiple professionals. Simplification is needed, as far as possible and if patients are health literate this will also help them navigate different systems. Health literacy impacts on almost all aspects of healthcare.
Lifestyle choices
Non-communicable diseases are increasing in frequency and are now the leading cause of premature death in most parts of the world. Patients are encouraged to make healthy lifestyle choices, but need to understand how and why these are important. There are many other factors impacting on lifestyle choices, but health literacy can be an important driver of ability to make healthy decisions for oneself and one’s family.
Using preventative services
Patients should be able to respond to invitations to attend preventative services and understand the importance of attending screening appointments.
Navigating systems
The health and social care system is complex. People with poor health literacy may struggle to get the level of support they need or access the help that they need. Even simple things, such as getting to the correct department for an appointment require a degree of health literacy - to understand for example that X-rays are at the radiology department or to be able to self-refer appropriately for physiotherapy.
Locating and interpreting health information
Health information is freely and widely available, but this is not helpful if patients lack the skills to search for, appraise and understand the information. Many people now look for health-related information online, however, if they have poor health literacy they may find incorrect or inaccurate information and potentially be at risk of harm.
Shared decision making and informed consent
Almost all medical procedures and treatments are characterised by risks and benefits. Shared decision making and patient-centred care is increasingly a healthcare goal, but true choice and truly informed consent is dependent on patients understanding the information and choices presented.
Health literacy has been demonstrated to alter health outcomes and to affect health service usage. Lower functional health literacy has been linked with higher use of A&E departments (Berkman et al., 2011). Health literacy has also been linked with mortality in older people (Baker et al., 2007) and has been shown to relate to poorer self-management in chronic disease (Schillinger et al., 2003). In older adults living in the community, health literacy has been linked to poorer physical and mental health and difficulties with daily living, even when socioeconomic status and chronic conditions were under control (Wolf et al., 2005). If the NHS is to control spending on chronic disease and improve outcomes in lifestyle-related diseases a health literate population is essential.
What is the problem with health literacy?
Poor health literacy appears to be common. Surveys of the British general population show that around 11% have marginal or inadequate health literacy (Wagner et al., 2007). Inadequate health literacy was associated with older age, being male and lower socioeconomic status. Many written health materials may be too complex for most patients to understand. A study of functional health literacy found health materials containing text only were too complex for 43% of the population to understand, rising to 61% when numbers were included (Rowlands et al., 2015).
Patients often do not understand and remember as much medical information as doctors think they do. Studies of patient recall after a consultation shows that even when doctors think they have been understood patients immediately forget 40–80% of the information relayed (McGuire, 1996). Doctors use medical jargon and may use words in a different context to the patient. An example is chronic, which doctors use to mean persistent, but patients may understand as meaning severe.
Certain groups may have particular difficulties with health literacy. These include:
Refugee or immigrant populations Older adults Socioeconomically deprived populations
Older adults are most likely to have chronic disease, but they are also most likely to have poor health literacy than younger adults. Some older adults may have cognitive decline, but even those with normal cognition may have slower information processing speeds than in their younger years and information may be forgotten more quickly (Kessels, 2003). Practitioners should vary their pace of information as needed, and consider reinforcing information over several appointments. Immigrant and refugee groups are at a disadvantage, as English may not be their first language. They also may have cultural views about health that may vary according to their cultural background. Practitioners should be aware of this when dealing with these groups and enquire non-judgementally to enable them to understand and account for these differences.
Health literacy and the internet
Over half the British population regularly searches the internet for health information, making it one of the leading sources of health information (Office for National Statistics). This may be positive for health literacy; however, the quality of health advice on the internet can be variable. One study of a search of the top Google results when common paediatric queries were entered found that over 50% of internet advice was inaccurate or did not answer the question (Scullard et al., 2010). The average reading age in the UK is 9 years old (Kuczera et al., 2016) and health information on the internet has been found to have a reading level of age 12 years and above (Berland et al., 2001) and, therefore, not accessible to many people. Websites such as NHS Choices provide reliable information that aims to have a reading age of 9–11 years old, which is appropriate for most of the population. Practitioners may choose to signpost patients to various websites, apps and videos, but they should be clear that patients have the digital skills to be able to access these resources, the physical means of accessing the resources, and that the resources are accurate and comprehensible for most people. The effects of digital media on health literacy are largely unknown, but it seems likely that patients will benefit from the ability to access information in different formats, for example, videos and podcasts, as well as traditional patient information articles. As internet usage becomes ever more prevalent patients will increasingly seek out information about their health themselves and should be supported in this activity. However, whether the internet will have a positive effect on the population’s health literacy is not clear, and people who are socially disadvantaged are also most likely to have poor health literacy and most likely to be unable to access information online (Department of Business Innovation and Skills, 2012).
Health inequalities and health literacy
Health inequalities are avoidable differences in people’s health due to the social grouping of which they are part. Health inequality is a problem in the UK, and primary care practitioners should try and reduce health inequality wherever possible. There are a variety of social, structural and economic reasons why different population groups, in particular those of low socioeconomic status, have poorer health. However, health literacy is one possible factor. People in lower socioeconomic groups are more likely to have poor health literacy, and although health literacy is associated with poverty, it has also has an independent effect on health outcomes irrespective of socioeconomic status. People with poor health literacy are more likely to smoke and have a poor diet, even when data is adjusted to account for socioeconomic status (Wagner et al., 2007). Health literacy could therefore be a target for efforts to improve health inequalities. This could be through trying to improve the health literacy of key groups such as young mothers or people with chronic disease or by making health information more accessible and encouraging professionals to communicate in clear language.
What can GPs do?
Improving health literacy is possible. Reviews of community-based interventions have shown group education and individual counselling sessions with practitioners were effective both in improving health literacy and in reducing risk behaviours (Taggart et al., 2012). Patients with chronic conditions should be encouraged to learn about their condition and have a feeling of control in their care. Group education about chronic disease and healthy living is widely available, although providers vary. Doctors should learn about what is available in their individual area and refer patients as appropriate.
On an individual level, it is important that practitioners understand a patient’s level of health literacy when consulting. People with a high educational level can still struggle with some aspects of health literacy, so assuming that because someone appears well educated or is highly qualified they understand everything in the consultation should be avoided. Follow-up appointments are useful especially for a new diagnosis. People who receive new information that is surprising or worrying will struggle to take in further details around their condition and should be given an opportunity to ask questions after they have a chance to absorb the diagnosis.
Ask me three.
Checking patient understanding at the end of the consultation is also important. Doctors should adopt a ‘belt and braces’ attitude to this and not assume that information has been understood unless they check. Asking patients to recap the key points of the consultation using the ‘teach back’ technique is an effective way of checking understanding, and this has been shown to be effective in improving comprehension by patients with low literacy levels (Schillinger et al., 2003) and to be associated with more patient-centred communication. Teach back simply involves asking patients to repeat to you what has been said during the consultation in their own words. Practitioners may be concerned patients will perceive this as condescending, but in general, if done sensitively, it is well received by patients.
Teach back technique.
Doctors can also review any educational materials they provide as part of consulting. Many are written are in a style that is too complex for the average British person to understand. Patient information leaflets should be written in plain English with specialist medical terms explained. Short sentences and paragraphs are best.
KEY POINTS
Poor health literacy is common Health literacy impacts on most aspects of healthcare Health literacy has been linked to patient outcomes and to service usage Health literacy can be improved by simple interventions
