Health literacy: an often-overlooked factor in health inequalities

What is health literacy?

When people ask me what health literacy means, I often start with the World Health Organization’s definition: ‘The ability to gain access to, understand and use information to make good healthcare decisions for oneself and for the community’. In my experience, health literacy is far more nuanced than simply understanding a leaflet or remembering what a doctor said.

Health literacy encompasses many aspects, for example:

• navigating the healthcare system
• finding and evaluating health information
• having social support for health
• making informed decisions collaboratively with clinicians.

Why it matters

Through my research, including studying health literacy in one of the largest cohorts globally, I’ve seen firsthand how poor health literacy is strongly associated with a range of negative outcomes, including greater symptom burden, poorer mental health, and workplace challenges like absenteeism and presenteeism.

Our recent systematic literature review, published in Annals of the Rheumatic Diseases, found six key domains associated with limited health literacy:

• Poor mental health (especially depression and anxiety).
• Lower adherence to medication.
• Increased use of healthcare services without improved engagement.
• Lower use of technology, including the internet and telehealth services.
• Higher disease activity.
• Greater disability.

These findings suggest that health literacy may be a key mediator between chronic disease severity and broader life outcomes like employment and mental wellbeing. It’s a bi-directional relationship; poor health literacy can lead to worse health, and poor health likely further reduces health literacy.

Insights from patients

At King’s College Hospital, we ran a pilot study where over 260 patients completed the nine-domain health literacy questionnaire – a tool used to assess a person’s health literacy based on things like their ability to navigate the healthcare system, having sufficient information to manage health, understanding health information, and social support for health, among other domains. The results revealed diverse health literacy profiles based on the diverse demographics and social circumstances of our local population. These insights will help us tailor care more effectively.

One thing that stands out to me is the difference in outcomes between patients attending appointments alone and patients who have a strong social support system around them who accompany them at appointments. If someone receives a new diagnosis and they’re alone, the amount of information they retain from that appointment is often minimal. Social support plays a critical role in health literacy.

In qualitative research published in RMD Open, involving over 40 patients and informing our health literacy research, many described struggling to understand their condition, treatment options, and how to manage their health, even if they didn’t use the term ‘health literacy’.

Some patients whose first language is not English explained that language is a barrier and makes it difficult to understand their condition, and how and when to take medication. One Latin American/Hispanic woman told our research team:

‘It would help to have written information in Spanish about [my] treatment to prepare [myself] and understand more clearly about what medication [I am] taking. [This] would [help me feel] more confident about taking the medication.’

Another patient highlighted the importance of their clinician taking the time to provide accessible resources and information to improve their confidence and trust in their treatment:

‘One consultant explained the markers because I wanted to monitor the food and lifestyle changes that I’m trying, so when I do the blood test I can see if the [biomarkers] are going up or down…[The consultant] told me what to look for in the blood test… The information gives me clarity and makes me feel confident.’

The COVID-19 pandemic brought digital health literacy into sharp focus. Telemedicine became the norm, but so did misinformation. Without the skills to critically assess online health content, patients can be misled, further widening health inequalities.

What can clinicians do?

There are simple but powerful strategies we can use:

• Teach-back method: Ask patients to repeat key information to confirm their understanding.
• Encourage questions: Invite patients to write down concerns and bring them to appointments.
• Assess health literacy: Use tools like the health literacy questionnaire, or short-form assessment tools to identify needs.

These approaches help us as clinicians to deliver personalised, patient-centred care, even in time-constrained settings.

A call for systemic change

I believe health literacy should be a government priority. It intersects with every social determinant of health, from education and income to digital access and social support.

Health literacy is not just about reading ability or education level; it’s about empowerment. It affects how people manage their health, engage with services, and live their lives. By raising awareness and taking action, we can begin to close this critical gap in health equity.

Dr Mrinalini Dey recently published an abstract in the RCP’s peer-reviewed journal, Clinical Medicine, which examines the association between health literacy and social determinants of health, clinical and non-clinical outcomes, specifically in people with inflammatory arthritis.

The RCP continues to campaign to reduce health inequalities and address the social determinants of health. If you’re a clinician, patient, or work in the NHS and have experienced or witnessed health inequalities, please get in touch to share your story and help us shed light on this issue. Email comms@rcp.ac.uk.