Healthcare asks people to interpret unfamiliar information, weigh risk, make consequential decisions, describe their experiences, and navigate complex systems, often while they are ill, frightened, or uncertain. Meaningful participation therefore depends on more than a person’s ability to understand a leaflet or remember a clinician’s instructions. It depends on whether the encounter and the wider system make understanding and participation possible.

Health literacy is not only what the patient knows

The World Health Organization defines health literacy in terms of people’s ability to access, understand, appraise, and use information and services in ways that promote and maintain health and well-being. It also emphasizes that these abilities are shaped by organizational structures, resources, communication, and context.

This is why health literacy should not be treated only as a patient attribute. Personal health literacy matters, but so does organizational health literacy: the extent to which an organization equitably enables people to find, understand, and use what they need. A person may have strong knowledge and still be blocked by unclear language, inaccessible technology, a fragmented referral process, lack of interpretation, unaffordable care, or a setting in which questions are not welcomed.

Recent work on organizational health literacy reaches a similar conclusion. Health literacy is produced in the relationship between people and institutions. The burden cannot fairly be placed on patients to compensate for systems that are difficult to understand or use.

Agency depends on more than information

Shared decision-making is often described as a partnership in which clinical evidence and professional knowledge are considered alongside the person’s values, preferences, and circumstances. For that partnership to be real, people need more than information. They need time to ask questions, communication they can use, respect for their experience, access to language and disability support, and confidence that disagreement will not be punished or dismissed.

Agency is therefore relational and structural as well as cognitive. A patient may know what they want to ask and still lack the time, authority, support, or practical ability to act. Conversely, a well-designed encounter can make participation easier for people with different levels of health literacy, confidence, language access, education, or digital access.

Designing for participation

The practical implication is not that every person must become an expert in the health system. It is that health organizations should reduce avoidable complexity and make understanding part of the design of care. This may include plain-language communication, interpreters and accessible formats, clear navigation, welcoming questions, confirmation of understanding, and processes that do not assume people can absorb information while distressed or unwell.

These are not merely communication preferences. They affect who can take part in decisions about their own care and whose needs are likely to be overlooked. A system that works only for people with time, confidence, digital access, English fluency, or prior knowledge is not neutral. It distributes participation unevenly.

Questions to leave with

• Is a communication problem being treated as the patient’s deficit or the system’s design?

• Does the encounter welcome questions, or only permit them?

• Can the process be navigated by someone who is unwell and unfamiliar with it?

• Is information offered in a form this person can use?

• What support is available for language, disability, cognition, cost, transport, and digital access?

• And who is being enabled to participate, while others are being left to cope alone?

For deeper reading

• World Health Organization. (2025). Health literacy.