What health literacy is
Health literacy is a person's capacity to obtain, understand and act on health information. It reaches beyond reading into numbers, design, digital devices and social resources, it is divided into functional, interactive and critical levels, and it can decline when a person is ill, stressed or frightened.
Definitions
In 2010, health literacy was described as a relatively new concept linked to health status. It is literacy related to health and wellbeing, and the concept originated in the United States and Canada in the 1970s, has spread around the world and is used to define competencies in public and personal health contexts.
Healthy People 2010, the Institute of Medicine, the National Library of Medicine and others have 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. One wording of this definition ends in basic health decisions. Another makes health literacy the ability to obtain, process and comprehend basic health information and services necessary for informed decision-making, and adds that the World Health Organization emphasises it as a key determinant of health and well-being. Shorter definitions make it the ability to read, understand and act on basic health information, the ability to access, read, understand and act on it, or the ability to understand medical or health-related information.
Health literacy entails more than the ability to read. More broadly, the World Health Organization states that it presents 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. Another definition makes it the knowledge, motivation and competence to access, understand, appraise and apply information to make decisions in terms of healthcare, disease prevention and health promotion. A version that speaks of ability rather than competence adds that health-literate people judge and decide on the options and alternatives given in healthcare, disease prevention and health promotion to maintain or improve their quality of life. Health literacy has also been defined as the ability of citizens to make sound decisions concerning their health in daily life: at home, at work, in healthcare, in the marketplace and in the political arena.
The recipient's problem or a shared responsibility
Health communication is an integral part of health literacy. When health literacy is discussed and defined, it is typically presented as a problem of the recipient of the information rather than as a responsibility of the communicator to make themselves understood. In 2015, however, the World Health Organization defined it as the personal characteristics and social resources needed for individuals and communities to access, understand, appraise, and use information and services to make decisions about health, a definition that acknowledges that external circumstances affect understanding. A health literacy consultant developed a definition more functional than the capacity definition, which makes health literacy a shared responsibility between patients and providers, each of whom must communicate in ways the other can understand.
A determinant of health that rests on general literacy
Health literacy has been called a complex, social determinant of health. It provides a level of knowledge, personal skills and confidence to change lifestyles and living conditions, which allows individuals to improve their own and their community's health. Adequate health literacy is necessary for people to access health information, take control of their health management and positively affect their overall health status. One conference speaker held that health literacy skills are necessary for an improved quality of life for individuals and for containing health costs in the United States. For a patient to be empowered to make sound health decisions, they need to be sufficiently informed and health literate.
Health literacy depends on more general levels of literacy, in a vicious circle: poor literacy can harm health directly, by limiting personal, social and cultural development, and also by hindering the development of health literacy. Poor health literacy has direct consequences for the ability to acquire and evaluate information on health issues. To increase health literacy, access to medical information and the abilities to evaluate it and use it critically must be improved.
Dimensions beyond reading
Health literacy is a broad concept that includes the use of plain language, the clear presentation of numeric information such as probabilities and statistics, design elements such as layout, font and colours, and audio-visuals such as imagery and figures that enhance clarity and reinforce the message. These dimensions are a critical part of putting the Belmont Report's ethical tenets of respect, justice and beneficence into action, and should all be considered in the development of clinical research materials for patients and participants.
In a digital context, health literacy needs to be expanded to include digital literacy, which means users need to be able to use digital devices and to have the appropriate cognitive, motor, sociological and emotional skills. In 2019 there was no common understanding of digital literacy. One of its components is understanding how and where data are saved, and how, to what extent and for which purposes they are processed.
Levels and domains
Nutbeam and colleagues describe three dimensions of health literacy:
- Functional health literacy is the ability to read health information, and sometimes includes numeracy, the ability to use mathematics in everyday life.
- Interactive health literacy refers to more advanced cognitive and literacy skills which, together with social skills, can be used to participate actively in everyday situations, extract information and derive meaning from different forms of communication, and apply this to changing circumstances.
- Critical health literacy refers to more advanced cognitive skills which, together with social skills, can be applied to analyse information critically and use it to exert greater control over life events and situations.
Another division gives it three levels:
- Functional literacy: the basic skills to read and write for everyday health tasks, such as understanding medication instructions.
- Communicative or interactive literacy: the cognitive and social skills needed to engage with health information, such as identifying and reporting side effects.
- Critical literacy: the advanced ability to analyse, evaluate and apply health knowledge effectively, such as determining whether information is relevant and reliable.
Health literacy can also be divided into two domains: generic health literacy, which concerns general health information, and disease-specific health literacy, which concerns knowledge of specific conditions, including their symptoms and treatment options. Medication literacy, a subset of health literacy, is an individual's ability to obtain, understand, communicate, calculate and process information about their medications, and it enables safe and effective use of them whether the medium is written, oral or visual. Patients need the skills to read labels, understand prescription instructions, measure the correct dosage, identify active ingredients and grasp the purpose of their medications, and to achieve better health outcomes they must also know what medications to take, when to take them and how to take them correctly. Without adequate health literacy, patients risk medication errors and adverse drug events from misinterpreting medication instructions.
Measurable components
In the view of two community health educators, the wide array of existing definitions can help build a fuller understanding of the concept's many aspects, but that understanding is of limited use without clearly identified and distinct components. To improve health literacy, they hold, it must first be defined in concrete, measurable constructs that can serve as functional targets for change and measures of success. Functional health literacy has been characterised and measured by an individual's ability to:
- read consent forms, labels and other written health materials
- understand written and oral information provided by health care professionals
- act on procedures and directions related to medications, appointment schedules and other health directives
These three abilities depend in part on the degree to which the health information is designed to make that kind of patient response easier.
Health literacy under illness and stress
Stress, such as that caused by an illness or injury, can harm a person's health literacy abilities, and learning of a disease or disorder, or of the need for a procedure, can be frightening and can affect a person's identity. Even highly educated people's health literacy often declines when they are presented with complex content in unfamiliar contexts and in times of stress, all of which characterise the situations people are in when considering and participating in a research study. Beyond an individual's health literacy level, comprehension can be affected by the complexity of clinical research information and by the often unfamiliar and stressful contexts in which it is presented. So those in a position to share information must ensure they communicate in ways that empower the recipient to make sound research decisions and take action.
A line printed backwards, .htlaeh ruoy tuoba egassem tnatropmi nA, can probably be read, but a reader whose reading skills are limited, whose native language is not English, who is overloaded with work, or who is scared, stressed or sick would probably not even try, and would miss the message it spells, An important message about your health. Barriers to understanding include not just difficulty with specialised medical terminology but also a limited understanding of mathematics, difficulty taking in large amounts of information at once, and high levels of emotion and apprehension when dealing with illness in oneself or in a loved one.
One associate professor of professional writing, who had researched documents concerning Medicare, fell ill while visiting Prague in November 2011. He spoke no Czech, and a taxi driver who spoke almost no English got him oriented at the hospital, where he followed the locals through its administrative procedures although most seemed as perplexed as he was. He had also almost completely lost his voice, so he conveyed his symptoms by pointing, nodding and grimacing. He came to realise that the vulnerability illness brings obscures understanding even for someone with solid health literacy. Asked through which nostril he preferred a scope to be inserted, he had no voice to ask the many questions in his mind and simply pointed to the right. He left with written prescriptions for gargles, sprays and small tablets. The hospital pharmacists joined him in charades about how to use the gargles and sprays, but he left a bit unsure whether the spray was for his nose or his mouth. He judged that he had most likely made mistakes with the directions and should have asked more questions, but that he could not really have done anything differently. His lack of a voice limited his ability to communicate even though he understood how to follow seemingly simple medical directions, and his limited literacy under those circumstances circumscribed the level of interaction possible with his health care providers. The doctor's extra time on a Sunday morning when others were waiting to be seen, the pharmacists' charades amid a shop of curious customers and the taxi driver's hand on his shoulder after he found him wandering the car park did more to quell his vulnerability than the gargles, sprays and pills. He concluded that effective communication of medical knowledge is much more complicated than writing prescriptions, particularly for those vulnerable because of health literacy issues.