Health literacy in the UK is an area of renewed focus as patients’ access to health information expands with the distribution of that information via the NHS app, NHS online support, and other digital services.
While the goal of better health outcomes through the twin strategies of more engagement with and amplified empowerment of patients is desirable, it is fundamentally founded on the ability of patients to understand the information and insight they are being given.
With research by Health Education England showing that over 4 in 10 UK adults do not understand written health information, the size of the hurdle that is health literacy in the UK comes into view.
In this article, we take a broad look at health literacy issues in the UK and actions to address them.
Health literacy is a statement about a person’s ability to both understand and use medical information to make decisions about their health.
In a broad definition, a person with low health literacy can be described as struggling to read and understand health information, not knowing how to best act on that information, and will be unclear on what, how, and when to get help from the NHS range of services.
While health literacy (as a subset of health education) was highlighted as an issue affecting health outcomes as far back as the 1990s, at that time it was based on general literacy and comprehension levels, rather than being specific to health.
World-renowned expert in public health Professor Don Nutbeam refined the definition of health literacy into three levels in an article published in Health Promotion International in the year 2000. His definitions have continued to be used, with a 2015 briefing document, by Public Health England using his three levels of health literacy:
Functional health literacy: an adult’s ability to read and comprehend healthcare information and instructions. For example, understanding the instructions for working out the correct paracetamol dose for a child. This is equivalent to the general definition of health literacy in the past and presumes a basic level of patient empowerment in their own healthcare. The new model of NHS healthcare is working to achieve and evolve from this.
Interactive health literacy: the ability of a person to be actively involved in decisions about and the management of their healthcare. Such as taking healthier lifestyle choices and following medication regimens when recovering from a heart attack. This is built around not only the patient’s general literacy and numeracy skills, but also their communication and social skills which gives them the capability to question, check, and gather insight from the health information and community they are provided with or can access. This also applies to their ability to successfully adapt and change with new circumstances and information. It can be argued that this is the level of health literacy that the NHS is aiming for, as it looks to move UK healthcare to a shared managed process with the patient, rather than the reactive one of the past.
Critical health literacy: a much further developed version of interactive health care, where the patient has a much greater ability to gather information, critically appraise that information, and take productive action based on that appraisal to manage their health. Outside of the professional health community, top-level athletes, for example, could be said to have this level of health literacy as they seek to better understand their health situation in order to produce their very best performance.
From these definitions, it is obvious that health literacy is related to, and compounded by general literacy levels. Functional health literacy, for example, is founded on the basic ability to be able to read and comprehend. So, in the UK where 7.1 million adults read and write at or below the level of a nine-year-old [source: Adult Literacy Trust], it is not too surprising that 43% of UK adults do not understand written health care information, and can therefore be said to lack functional health literacy.
A solution to address this situation would be improved general literacy levels across the UK population, so that all adults would be at least functionally health literate.
Five areas have been identified as issues to focus on to raise the UK’s population health literacy to at least a functional level.
These five core health literacy issues all work together, adding to and compounding the challenge, and ultimately impacting healthcare costs and the quality of health outcomes.
1) Access to healthcare information
Giving people access to healthcare information is the fundamental step in improving health literacy. Without it, little or no progress can be made in health education and improving health literacy. Big strides in this area have been made by bodies such as Health Education England, and are set to continue with the rollout of patients’ access to their health records via the NHS app, and the supporting information that will come with that.
Large-scale health education campaigns have had an overall positive impact on improving the UK population’s health. These include Quit Smoking, AIDS awareness, Breast Cancer Screening, and most recently those associated with the COVID-19 pandemic.
The information can be given via a wide manner of channels: in physical written formats (pamphlets and leaflets), via digital media, and where budgets allow, via mass media (radio, press, and TV). Plus, at a lower, more targeted, level via support & help groups.
The messaging can be tailored to the medium of communication so that both simple and comprehensive messages can be disseminated as best suits the involvement level of the recipient. For example simple messages – “catch it, bin it, kill it” – via TV ads and comprehensive topic discussions and conversations at support groups such as Cancer Support UK groups.
However, two factors can impact this elements ability to help address health literacy issues. One a relatively new one, and the other a more systemic issue:
Doctor Google While the distribution of health information has exponentially improved with the internet and search engines, there has been a concurrent increase in the availability of false, misleading, and even dangerous so-called health information.
This means there needs to be a conscious effort by the information recipient to validate that it comes from a credible source, such as the NHS app or website, local GP practices, or hospitals. Without this, patients can fall prey to danger, as was seen with anti-vaccination information distributed during the pandemic. This could be said to have worked to reduce the health literacy in those it convinced, and, more concerningly, over the medium to long term has made them less likely to take heed of true health care information.
Disparity due to social, economic, and ethnic backgrounds While past health campaigns have had an overall positive impact, they also highlighted that their impact is lessened if there is no accommodation made for the social, economic, and ethnic background of the audience. That is the distribution of health information both physically and digitally has been shown to have less of an impact on health literacy for socially disadvantaged, lower-income, and non-English-speaking communities in the UK.
While initial conclusions were that this disparity was educational, for example general literacy levels, these have been shown to be flawed, as research that looked at the social context of people’s behavioural decision-making revealed patterns that are different from those from other social-economic and ethnic groups where campaigns have been more successful.
What this leads to is the need to take different approaches to both the availability and distribution of information, approaches that are tailored as much to the recipient’s social, economic, and ethnic background needs as they are to the messages that need to be communicated.
2) Misunderstanding of healthcare information
Even when healthcare information is available, many individuals in the UK may struggle to understand it.
Health Education England (HEE) states that 43% of UK adults do not understand written health information. This lack of understanding about health conditions, treatments, and medications, can result in poor health outcomes. So, healthcare information needs to be made easier and simpler to understand.
As HEE puts it, by “Providing easy-to-understand health information for patients can help people make better decisions about their health and take an active part in planning their own care. (It) can also have a huge impact on how people respond to treatment, recover from illness and manage long-term conditions.”
Anecdotal evidence from Lexacom’s work in primary care picks up on this last point about confidence; patients having a greater understanding of their health helps build both their own confidence in what they can do, and their trust in the relationship they have with their doctor.
3) Limited engagement in healthcare
Health literacy issues also extend to engagement by patients: engagement in their own healthcare, and engagement with healthcare services. Given long-term NHS goal of a more engaged and empowered UK population at an individual level, this is an area of major importance.
Unfortunately, low health literacy goes hand in hand with limited engagement in healthcare. Which in turn can result in delayed diagnoses and treatment of health conditions. This can have serious consequences, particularly for chronic conditions such as diabetes, cancer, and heart disease.
Providing easy access to easy-to-understand healthcare information, tailored to the recipient should help boost engagement and action from the patient to better manage their health, however, this is not guaranteed as some will actively choose to ignore any information or advice they are given. An example of this is being advised to stop smoking.
Again, as with the distribution of health information, the next step is to work at an individual level, an approach of ‘with them’ rather than ‘to them’. Over time this coaching approach will boost the patient’s engagement and health literacy.
Such an approach is a costly investment if at a one-to-one level between doctor and patient. However, digital technology is already helping reduce that burden, with coaching being extended beyond what individual doctors can deliver, for example with initiatives like the NHS Couch to 5K program.
4) Increased healthcare costs and overstretch.
While the first three health literacy issues are addressable, their impact is felt in the next two.
The first is increased healthcare costs and overstretch.
As the old sayings go, “prevention is better than cure”, and “a stitch in time saves nine”, so goes healthcare costs.
Individuals with poorer health literacy are more likely to require more extensive treatment due to delayed diagnoses and treatment. If an individual puts off seeing their GP, what was once an easily treated condition could become a major issue requiring more treatment, and more cost.
Also, poorer health literacy can lead to treatment being sought for for unnecessary ailments, taking clinical time away from more important needs, stretching the capacity of the NHS, and again, adding more cost.
While the previous sections highlighted that health literacy can be improved through a more detailed one-to-one coaching-based approach to distributing information, helping patients to understand that information, and from encouraging engagement in their own healthcare, these are costly investments to make in both time and resources. Costs that will further burden the NHS. However, the benefits of making such investments deliver savings in the medium to long term as they will reduce the need for costly late term intervention. Plus, with improved digital technology the cost of that coaching has become lower, lessening the impact on today’s NHS while delivering even more savings in the future.
5) Poor health outcomes
The fifth core health literacy issue is the culmination of the other four; poor health outcomes.
When individuals do not have access to healthcare information, when they do not understand that information, when they do not engage with the healthcare services, and when those healthcare services are overstretched, effective health management is minimised, leading to poor health outcomes.
Effectively, health literacy issues result in early deaths, poor life quality, bereavement, and a whole host of other issues for both the individual and those around them.
Each of the above health literacy issues has, on the surface, a simple solution in its opposite nature.
That is, provide more and better-targeted healthcare information, work to improve understanding of health terminology, encourage individuals to be more engaged in their own health, provide more resources to address overstretch. The result will be better health outcomes.
However, as shown, the result is difficult to achieve, as the nature of each step is more complex than it appears. But that does not mean attempts should not be made, just that more consideration and investment are needed to meet the complexity of the population’s needs, and its differences in attitude, culture, and economics.
Importantly, with the digital culture that we are now living in, and all that it brings in terms of healthcare information access and support, the investment requirement is significantly lessened from what it would have been just twenty years ago. Meaning the “plan – do – review – act” cycle of iterative improvement is now quicker, and the capability to tailor to a one-to-one relationship between the NHS and the patient has increased.
In many respects, the need to improve health literacy, which is being accelerated by the delivery of more health information to the UK population via digital channels, has the solution to that improvement, in the capability to deliver one-to-one coaching relationships via those very same channels and technologies.
Within the five health literacy issues detailed above, Lexacom is working to help address the second issue, the misunderstanding of healthcare information, through the deployment of Comprehension Engine® in our product range.
As Health Education England states:
“Using straightforward language can give people the confidence to ask questions without feeling uncomfortable or foolish.”
Comprehension Engine® was designed to help address this health literacy issue, particularly now that the citizen access program gives patients access to their medical notes via the NHS app.
That access is helping resolve the first issue, access to health information, but as we’ve explored in other articles, this creates additional issues. Issues such as patients being left with doubts about their health situation as they struggle to understand (or worse, misinterpret) clinical information written about them. Or clinicians spending more of their time writing notes in plain English for patients to understand, meaning they have less time to see patients.
Comprehension Engine®, available in our medical speech recognition software Lexacom Echo, solves this conundrum by automatically adding NHS-approved plain-English explanations to medical terms as the clinician dictates. Meaning the patient reads words they can understand, while the clinician can continue to make notes using medical terms and shorthand, as they have always done.
To quantify what impact this capability has in helping address health literacy issues, a recent research poll by YouGov showed that translating medical terminology into plain English (which Comprehension Engine® does, automatically), delivers a five-fold increase in UK adults understanding of medical conditions.
Additionally, an interview with a GP Partner and Research Lead about his use of Lexacom Echo highlighted his anecdotal observation that his patients were now more responsive, and engaged with him more, since he started providing plain English explanations in his text messages, thanks to Comprehension Engine®
Each of the above health literacy issues has, on the surface, a simple solution in its opposite nature. 
