Health literacyBMJ 2012; 344 doi: https://doi.org/10.1136/bmj.e2188 (Published 22 March 2012) Cite this as: BMJ 2012;344:e2188
Is it time to shift our focus from patient to provider? Increasing people’s ability to understand and engage in their healthcare is an international priority. Research, particularly from the United States, has shown that people who lack such ability have poorer health outcomes and increased mortality.1 In the linked study (doi:10.1136/bmj.e1602), Bostock and colleagues show an adverse effect on mortality in patients in the United Kingdom too.2 The findings of this study are worrying, but not surprising. The study also suggests that a third of older people in the UK have difficulty reading and understanding basic health information. Considered alongside data from the US and Australia,3 4 these findings suggest that between a third and half of people in developed countries have difficulty understanding and engaging in their healthcare and that this has important consequences for health. In light of such findings it seems remarkable that the matter is not given higher priority.
The ability to read and understand health information has been characterised over the past 20-30 years as “health literacy,” with the focus simply being on whether people could read and understand information, but the term has now developed a much wider scope. It now encompasses clinical risk (which focuses on screening for low literacy and leads to changes in clinical practice) and personal asset (aimed at developing skills that enable people to take more control over their health).5 This means that there are three aspects to what is still called health literacy—the ability to read and understand health information; a wider ability to engage with the healthcare process; and the removal by healthcare systems of unnecessary complexity and barriers to patient understanding and involvement.
How can people who need easy to understand information and simplified health services be identified? Much research has focused on the evaluation of screening tools. However, because a third to half of people have difficulties, it seems sensible to offer the same accessible information and services to all patients,6 especially as everybody could benefit from clearer health information and health systems that are easier to access. This would include using plain language, both oral and written, when communicating health information; using clear design in written materials for patients, which are often overly complex7; and rigorously user testing information with patients.8 Such user testing is now used routinely for leaflets supplied with drugs across the European Union.9 For clinicians who communicate information to patients there is widespread support for specific methods that help to confirm understanding, such as Teach Back (which checks how clearly the professional has communicated and how well the listener has understood),6 and more general support for health professionals to develop their communication skills.
An explicit goal of the drive to increase health literacy is to improve health outcomes. However, empowered and informed patients may make decisions that they consider to be right for them, but which are not what their health professionals consider to be the right course. An informed and engaged patient is not necessarily an obedient patient. For example, in a randomised controlled trial, a decision aid increased levels of knowledge and informed choice but resulted in a lower participation rate in screening for bowel cancer.5
How is policy changing to reflect what is now known about the importance of health literacy? In the US, a recent national action plan moved the spotlight towards how services are provided, with a focus on removing barriers.7 This is reinforced by provisions in the Affordable Care Act and the Plain Writing Act.10 In addition, a health literacy “universal precautions toolkit” is being evaluated in the US.11 In the UK, despite government proposals for more understandable information, together with involvement and engagement of patients, specific actions have not yet been identified.12 Interestingly, the UK proposals do not use the term health literacy, and the widespread use of this term by others may be one of the reasons why more progress has not been made. There are many definitions of health literacy, and many stakeholders continue to understand the term only in its literal sense. Health competence has been suggested as an alternative term, but, in this of all situations, a more patient friendly term is needed. Most definitions encompass the notion of patients’ capacity or ability, so an alternative term might be health ability. The right terminology matters when it comes to getting professionals and patients on board.
The ability of patients to understand and access healthcare depends on both engagement and communication. It is a two way street, with one important focus being a wider drive to improve people’s abilities. However, most health professionals and health managers cannot achieve this in their day to day work. What they can do is to consider how they can change the health information and health systems they offer, to make them as easy to understand and interact with as possible. Future research should focus on evaluating attempts by professionals and health systems to remove barriers to understanding and engagement for all patients.
Cite this as: BMJ 2012;344:e2188
Competing interests: The author has completed the ICMJE uniform disclosure form at www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declares: no support from any organisation for the submitted work; DKTR is a director of Luto Research, a spin out company of the University of Leeds, now owned by Mawdsley Brooks and Co Ltd; Luto develops, refines, and tests health information; as a director, he contributes to the strategy of the company and the direction and quality assurance of projects undertaken but holds no stake in the company; he has also undertaken consultancy through his university employment.
Provenance and peer review: Commissioned; not externally peer reviewed.