The past 30 years, there has been a massive improvement in treatment options for a range of health conditions and more focus on involvement and co-desicion from the patient. This text highlights how our health literacy is a key in making these desicions.

Thirty years ago, the Dutch medical treatment act (WGBO) was launched to regulate the relationship between patient and healthcare provider. 

This act dictates patients’ right to timely, clear and understandable information that suits their comprehension and health status and underlines the importance to shared decision-making. 

In more recent years, this act was expanded with the duty for healthcare providers to actively invite patients to ask questions. A noble pursuit, but (how) does this work in everyday clinical practice? 

Between 2007 and 2016, the total number of questions primary care patients ask during routine medical consultations, has not changed, at least not in the Netherlands, despite an increase in the average consultation length (Meijers et al, 2020). 

Are patients well-informed and know enough about their health situation? 

This is not likely, since one out of every three patients in the Netherlands (Heijmans et al, 2024) and almost half of the European population (Sørensen et al, 2015) has a so-called limited level of health literacy. This means that they lack the knowledge, motivation and/or competency to access, understand, appraise and apply health information in order to make judgments and decisions concerning their health (Sørensen et al, 2015). 

People with a limited level of health literacy are more likely to have a poor understanding of diagnostic, screening or treatment options and more likely to experience decisional uncertainty and regret (McCaffery et al, 2015). But, when asked, they do want to participate in treatment decision-making (Noordman et al, 2022).

A person’s level of health literacy is not per se related to educational background; higher educated patients confronted with bad news can, for instance, at least temporarily, loose their ability to understand the information provided and to ask clarifying questions, due to feeling overwhelmed and emotionally distressed as a result of the disappointing information. 

Apart from allowing patients to process new information and providing room to express their emotions, patients need understandable and helpful information. After all, to be able to ask questions, they need to have some basic understanding of their health situation, the available treatment options and possible side effects. 

Emotions (fear, uncertainty and sadness), physical status (high disease burden, chronic pain), lack of knowledge about the disease (not knowing what to ask, complex treatment) and lack of knowledge about the healthcare system (not knowing what to expect when and from whom) are known to be important barriers for patient participation. 

Information overload?

Apart from that, patients often receive too much information, not tailored to their personal situation and full with medical jargon. They often feel ashamed to admit that they do not understand the information provided, but upon returning home, they realize they don’t recall the advices, prescriptions or instructions correctly. 

The portals offered to patients through which they can pose clarifying questions to a healthcare provider in between medical visits are often not very user friendly and therefore difficult to access, especially for those who feel sick or have a limited level of health literacy. 

There are several ways for healthcare providers to find out whether or not a patient has a limited level of health literacy, for example by asking the following questions (Chew et al, 2004): 

1) Many people have difficulty reading hospital leaflets. How is that for you?
2) Many people have difficulty filling in forms. How is that for you? 
3) Does anyone ever help you to fill in forms or read letters?

Are tools helpful for patients with a limited level of health literacy? 

Imagine, you suffer from advanced chronic kidney disease and you need to choose a kidney replacement therapy in collaboration with your healthcare provider. All the different options need to be discussed with its pros and cons for your personal situation. 

To support this process, one needs to receive treatment modality education for which different decision tools are available (van Dulmen et al, 2022). From this link you can see a picture that examplifies graphical decision aids both developed for advanced chronic kidney disease. 

In contrast to more traditional decision aids full of texts,  visual and graphical decision aid tools include the same information about the different treatment modalities with far less words and illustrated with images. 

Such a visual decision aid is based on clinical practice guidelines and consists of a visual overview page showing all treatment options, followed by more detailed pages about the specific treatment options with images and information in plain language about the treatment, outcomes and possible risks (Noordman et al, 2024). 

These visual decision aids are developed by patient organizations and professional associations together with people with a limited level of health literacy, assisted by Pharos (the Dutch center of expertise on health disparities). Recent research shows that these visual decision aids are helpful for healthcare providers as well as patients, not only for those with a limited level of health literacy (Noordman et al, 2024). What tool format do you prefer?

Barriers towards use of tools in health care settings

Healthcare providers recognize the importance of addressing patients’ health literacy needs, but do not yet routinely use health literacy strategies, lack confidence and have reservations about recommended health literacy strategies. 

They indicate lack of time as an important barrier (Noordman et al, 2024). Apparently, knowing when to use what tool when communicating with patients with a limited level of health literacy without lengthening a medical visit is the necessary next step to get the valuable tools implemented and allow all patients equal access to understandable and helpful information. 

With all the efforts currently being taken by professional organizations, patient associations, policy makers and healthcare researchers, I strongly believe that, at least in the Netherlands, soon, this will no longer be a dream.

References:

• Chew LD, Bradley KA, Boyko EJ. Brief questions to identify patients with inadequate health literacy. Fam Med 2004; 36(8), 588-594
• Heijmans M, Cariot L, Brabers AEM, Rademakers J. Infografic. Eén op de drie Nederlanders heeft onvoldoende of beperkte gezondheidsvaardigheden – feiten en cijfers 2023 [One out of three Dutch citizens has insufficient or limited health literacy – facts and figures 2023]. Utrecht: Nivel, 2024
• Killian L, Coletti M. The role of universal health literacy precautions in minimizing “medspeak” and promoting shared decision making. AMA J Ethics 2017; 19(3): 296–303
• Maas L, Kisjes A, Hashemi I, Heijmans F, Dalpiaz F, Dulmen S van, Brinkkemper S. Automated Medical Reporting: From Multimodal Inputs to Medical Reports through Knowledge Graphs. HEALTHINF 2021: 509-514
• McCaffery KJ, Holmes-Rovner M, Smith SK, et al. Addressing health literacy in patient decision aids. BMC Med Inform Decis Mak 2013;13(suppl 2):S10
• Meijers MC, Potappel A, Kloek C, olde Hartman T, Spreeuwenberg P, Dulmen S van, Noordman J. Shifts in patients’ question-asking behaviour between 2007 and 2016: an observational study of video-recorded general practice consultations. Patient Educ Couns 2020; 103: 1168-1175
• Noordman J, Oosterveld-Vlug M, Rademakers J. Shared Decision Making in Clinical Practice: experiences and needs of patients with limited health literacy. Eur J Health Commun 2022; 3(1): 31–52
• Noordman, J., Roodbeen, R., Gach, L., Schulze, L., Rademakers, J., Muijsenbergh, M. van den, Boland, G., Dulmen, S. van. ‘A basic understanding’; evaluation of a blended training programme for healthcare providers in hospital‑based palliative care to improve communication with patients with limited health literacy. BMC Medical Education: 2022, 22(1), p. Art. nr. 613.
• Noordman J, Noordam D, Treeck J van, Prantl K, Pennings P, Borsje P, Heinen M, Emond Y, Rake E, Boland G, Dulmen S van. Visual decision aids to support communication and Shared Decision-Making: how are they valued and used in practice? PLoS One 2024, 19(12), p. Art. nr. e0314732
• Sørensen K, Pelikan J, Röthlin F, Ganahl K, Slonska Z, Doyle G. Health literacy in Europe: comparative results of the European health literacy survey (HLS-EU). Eur J Public Health. 2015;25(6):1053–1058
• U.S. Department of Health & Human Services Agency for Research Healthcare and Quality – AHRQ Health Literacy Universal Precautions Toolkit. Content last reviewed May 2017. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/professionals/quality-patient-safety/qualityresources/tools/literacy-toolkit/index.html
• Timmers T, Janssen L, Kool RB, Kremer JA. Educating Patients by Providing Timely Information Using Smartphone and Tablet Apps: Systematic Review. J Med Internet Res. 2020 Apr 13;22(4):e17342
• van der Giessen J, Ausems M, Riel E van, Jong A de, Fransen MP, Dulmen S van. Development of a plain-language guide for discussing breast cancer genetic counseling and testing with patients with limited health literacy. Support Care Cancer 2021 Jun;29(6):2895-2905
• van Dulmen S. The value of tailored communication for person-centered outcomes. Journal of Evaluation in Clinical Practice (JECP) 2011; 17: 381-383
• van Dulmen S, Roodbeen R, Schulze L, Prantl K, Rookmaaker M, Jaarsveld B van, Noordman J, Abrahams A. Practices and perspectives of patients and healthcare professionals on shared decision-making in Dutch nephrology. BMC Nephrology 2022; 23:258
• van Dulmen S, Peereboom E, Schulze L, Prantl K, Rookmaaker M, van Jaarsveld BC, et al. The use of implicit persuasion in decision-making about treatment for end-stage kidney disease. Perit Dial Int 2022; 42(4): 377–386