Why healthcare organizations have a role to play in promoting health literacy and shared decision-making

• The WHO has emphasized the pivotal role of health literacy, calling for systems that empower people to actively participate in their healthcare and for patients to be involved in decision making
• Low health literacy hinders shared decision making, with evidence showing a direct impact on treatment adherence and health outcomes
• Successful initiatives, like the “Kidney Essentials: CKD” program, demonstrate the potential of digital tools to enhance understanding and foster patient-centric healthcare

Healthcare organizations can take a number of key steps to boost health literacy levels, help people play a more active role in their own healthcare, and start involving patients in the decision-making process.

Organizations must be able to communicate with patients using the right language, words, and terms they understand. In many cases, this will involve translating technical terms into a more accessible lay language. In other scenarios, it will mean ensuring that information is shared in other languages besides English.

It is also crucial that as organizations begin involving patients in decision-making that they pay attention to the media used to disseminate information and that an appropriate mix of new and old methods is used.

Establishing strong relationships with partners across the healthcare ecosystem, including patients and caregivers, will help organizations gain the insights they need to play an integral role in boosting health literacy rates.

It is clear that granting every person the right to participate in their health and healthcare depends heavily on the presence of structures and mechanisms through which to collect, create, and share information.

This article explores how such structures can practically and successfully be co-created and scaled, and looks at the impact patient-education projects are already having.

An individual’s ‘health literacy’ is their ability to understand, process, and act on information about their own health and care. Health literacy depends on a combination of skills – including language, comprehension, reading, numeracy, and critical thinking – which can be explicitly taught or acquired via experience. Being literate in one’s own health has been associated with effective management of long-term health conditions and has been identified as a key social determinant of health outcomes as it enables successful navigation of the healthcare system, effective self-management, and treatment adherence, as well as participation in shared decision making with healthcare professionals.²

The benefits of shared decision-making have been extensively researched, and include better quality of decisions, more personalized care, higher patient satisfaction, and more efficient resource deployment.²

The relationship between health literacy and shared decision-making is mutually reinforcing: through shared decision-making, patients gain a deeper understanding of their health conditions, treatment options, and the potential risks and benefits associated with each one.³ As a result, their health literacy improves over time, as they become more familiar with healthcare terminology and concepts.

According to a European Health Literacy Survey, 12% of the European population have inadequate general health literacy and 35% have problematic health literacy.⁴ This is a huge obstacle to involving patients and successful shared decision-making and the improvement of health outcomes along multiple axes. Health literacy is also a health inequality issue. There is a close link between low economic status and low health literacy, and there are also clear correlations between economic status and preventable mortality.⁵ The poorest areas have the highest preventable mortality rates and the richest areas have the lowest.⁶

The promotion of health literacy depends on improving communication between clinicians and patients and on the provision of accessible, clear health information. However, both of these remain a difficult undertaking for healthcare providers on account of short face-to-face appointment times, and language and literacy barriers that make the traditional methods of dispensing health information (verbally and via written information leaflet) ineffective.

There is a well-documented need for innovation in the methods and modes of health information provision. Nearly two-thirds of England’s working-age population find health information difficult to understand and studies have found that 40% to 80% of the information given during appointments is forgotten immediately.^7,8

This has real-world implications. A research study found that several members of a cohort of people with thyroid cancer who were asked to adjust their diet ahead of treatment were confused about what they needed to do. Having been provided with unclear and limited information, many restricted their diet more and for longer than is advised.⁹⁽⁸⁾ Some reported conflict or distress associated with the diet and were anxious if they had consumed the “wrong” foods. The researchers noted that patients sometimes blamed themselves for later treatment failure.⁹

This is just one of many examples of how poor health literacy can create problems for patients and providers. When health conditions and treatment plans are not properly understood, shared decision-making and informed consent isn’t possible, self-management is impeded, and medication is often not taken properly.

In May 2023, the World Health Organisation (WHO) published its new framework for meaningful engagement of people living with noncommunicable diseases (NCDs), and mental health and neurological conditions.¹⁰ The WHO has highlighted people’s right and duty to participate in the planning of their own health as well as the importance of gathering insights from individuals when seeking to design and implement equitable health policies, programs, and services.¹¹

When building frameworks to promote health literacy and enable shared decision-making, co-creation must be a priority. Concerted efforts must be taken to consult with and involve not just healthcare professionals and researchers, but also members of the pharmaceutical sector, people with lived experience of the condition, and their caregivers.

Cultural and linguistic diversity must be acknowledged and assets and materials must be made accessible in a variety of formats, including traditional paper-based as well as digital.

If resources are only produced in one language, they will inevitably be inaccessible to a fraction of patients. English, one of the most widely spoken languages in the world, does not ensure guaranteed comprehension even in English-speaking majority countries: according to census data, 1.5% of the population of the UK can not speak English ‘well’, and 8.2% of the US population can not speak English ‘very well’.^12,13

The resources should be scalable – meaning they can be made available to large groups of patients across multiple geographies – whilst also being quick and easy to share with patients and caregivers. Digital, online resource provision is one effective way of scaling health education in a cost-effective manner, but paper-based alternatives must remain available for those who lack the technology or skills to access digital content.

In the UK, the Royal Berkshire NHS Foundation Trust and Cognitant, global leaders in patient engagement and learning, collaborated with experts and patient groups to launch a health literacy project aimed at addressing the challenges faced by patients with Chronic Kidney Disease (CKD).¹⁴ It was identified that many of the Trust’s CKD patients struggled with understanding health information, leading to poor health outcomes and increased costs, and it was established that the traditional approach of using text-based information, such as printed leaflets, exacerbated these health literacy barriers.

To address these issues, Royal Berkshire NHS Foundation Trust and Cognitant launched “Kidney Essentials: CKD”. The engaging and accessible digital health information program uses avatars to help patients understand their diagnosis and staging as well as how to manage their renal health. This program, which is supported by the Healthinote digital platform, enables clinicians to create personalized, linguistically, and culturally specific health information prescriptions that patients can access on demand.

The results from the pilot program showed that patients found digital information easier to understand and navigate compared to written information, leading to increased knowledge of CKD. The initiative has been extended to a second phase, including a similar program for Acute Kidney Injury (AKI), and has received positive feedback from both patients and clinicians.

For healthcare providers looking to immediately launch efforts to promote health literacy, the first action to take must be to seek a representative cohort of collaborators from within the patient community and start involving patients in the decision-making process.

A second important collaboration is with partners from across the health ecosystem, including industry, where attention is increasingly turned to the creation of new patient-centric models that take a continuum of care rather than an episodic approach when it comes to the development of new therapeutic options. This, according to Numerof Insights, requires a focus on the prevention, diagnosis, and treatment of a range of conditions within a therapeutic area. As a result, pharmaceutical companies must be able to demonstrate the value their therapies are delivering across the patient treatment pathway, and not just at one particular point on this journey.¹⁵

This shift of focus makes investment in public health literacy essential for ensuring appropriate and optimized use of products. By reaching across the ecosystem to collaborate with these well-resourced actors, we can co-create resources and programs that deliver mutual benefits for all parties.

Finally, with the considerations of accessibility and scalability discussed above, clinicians, care providers, and industry should be prepared to run multiple trials and perform iterations, to gather feedback constantly, and work with experts in patient education content creation who can support you to secure the best outcomes from your project.

Health literacy empowers people to meet their individual complex health demands in modern society, starting with basic skills and ending with active citizenship. It relates to people-centered health where health policies are not developed “on behalf of” but “with” and “through” people ¹⁶

As populations age, comorbidities increase, and healthcare systems become increasingly overextended, the promotion of health literacy in the general public has never been more essential.

By focusing on involving patients in the decision-making process and the provision of co-created, accessible, inclusive education content, communicative, active participation in healthcare will be made possible, ultimately providing strong foundations on which to build healthier, informed populations.