What health literacy really means — and why it could save patient’s lives

October marks Health Literacy Month, an important time to reflect on how well people are able to access, understand, and use health information to make informed decisions about their healthcare. According to the European Health Literacy Survey, nearly 47% of Europeans have inadequate or problematic health literacy, meaning millions of people struggle to access, understand, praise, and apply health information in daily life (Sørensen et al., 2015). 

To support this, the EAU Patient Office is sharing a series of tips and examples to help healthcare providers deliver clearer, more accessible information to every patient.

If you are not a medical professional and you have to undergo a medical procedure or navigate a new diagnosis, the amount of health information can be overwhelming. Medical letters, leaflets, and even in-person conversations with healthcare professionals are often filled with complex jargon, long sentences, and unexplained terms.

Now imagine that experience if you face additional barriers:

• You are dyslexic, colour-blind, or have a visual impairment.
• You have low literacy, or your first language isn’t the one being used.
• You come from a low socio-economic background, or didn’t have access to higher education.

Health information is extra difficult to understand, especially when it matters most. The bottomline is that the majority of people need clearer communication, not more complex details.

A good rule of thumb is to ask yourself: Would a person much younger than me understand this word or phrase? If the answer is no, consider replacing it with simpler language — without losing meaning.

Here’s an example:

• Original medical sentence: "A CT urogram was performed, revealing an enhancing lesion in the bladder suggestive of malignancy."
• Plain language translation: "Your scan showed a spot in your bladder that might be cancer."

Plain language does not mean oversimplifying or omitting critical details. It means presenting those details in a way that is easier to understand the first time, reducing anxiety, confusion, and the risk of misinformation from online searches.

Even when the words themselves are understandable, sentence structure matters. Research consistently shows that long sentences reduce understanding, particularly in people with limited literacy or cognitive overload (European Commission, 2023).

Consider the example below:

• Typical letter from a doctor:
  "Given the patient’s prior history of high-grade non-muscle-invasive urothelial carcinoma with recurrence despite intravesical BCG therapy, we are recommending a radical cystectomy with bilateral pelvic lymphadenectomy as the next step in definitive management to reduce the risk of progression to muscle-invasive disease."
• Plain language version:
  "You have an aggressive type of bladder cancer. It has come back, even after treatment directly into your bladder. To stop it from spreading, we recommend removing your bladder and nearby lymph nodes."

This kind of revision helps patients understand complex medical decisions more easily and supports better outcomes through informed consent and reduced follow-up confusion.

Patients with low health literacy in general are more likely to be hospitalised, and make more frequent use of emergency services. This often stems from difficulties in understanding medical instructions, recognising symptoms, or knowing when and where to seek help. Poor health literacy can also be attributed to mis-management of longterm chronic pain conditions. 
(Source: WHO Europe, 2021)

One of the initiatives that is addressing health literacy at the moment is the BClear project. The BClear project is coordinated by the European Association of Urology (EAU) in partnership with several organisations: the World Bladder Cancer Patient Coalition (WBCPC), European Cancer Leagues (ECL), WONCA Europe, Hellenic Urological Association, Hungarian Urological Society, Polish Urological Association and the Erasmus University Medical Center. The project aims to tackle this health literacy gap in bladder cancer knowledge through a series of educational, awareness, and policy initiatives developed and informed by the patient experience.

Bladder cancer is one of the five most common cancers in Europe, but many people still don’t know much about it. It can have a serious impact on patients and their families. In many EU countries (especially lower income ones or those with less awareness), diagnoses occur late due to poor symptom recognition and low public awareness.

In the coming months,new healthcare materials will be developed through the BClear project that will help to better to understand the background, symptoms and treatment options of bladder cancer. This will not only be done just through language, but also through design, structure, and visual clarity.  Keep an eye out on the project as it gathers momentum. 
 

References

• Sørensen, K., Van den Broucke, S., Fullam, J., Doyle, G., Pelikan, J., Slonska, Z., & Brand, H. (2015). Health literacy in Europe: Comparative results of the European Health Literacy Survey (HLS-EU). The European Journal of Public Health, 25(6), 1053–1058. 
  https://doi.org/10.1093/eurpub/ckv043
  
   
• World Health Organization Regional Office for Europe. (2021). Health literacy development for the prevention and control of noncommunicable diseases: Volume 1. Overview. https://iris.who.int/handle/10665/364203
  
   
• European Commission. (2023). Guide de communication inclusive: Pour une communication publique accessible, compréhensible et inclusive. https://accessible-eu-centre.ec.europa.eu/content-corner/digital-library/guide-de-communication-inclusive-pour-une-communication-publique-accessible-comprehensible-et_en