^{Florent Jouinot from Swiss AIDS Federation reports on AFRAVIH 2026 in Lausanne.}

From literacy to health literacy 

The session begins with an important clarification. In French, several concepts coexist: literacy, illiteracy, and health literacy. In English, a single word dominates: literacy. Yet this linguistic difference also reflects cultural differences.

Literacy is not limited to the ability to read and write. It refers to the capacity to understand and use information within a given cultural context. The speakers point out, for example, that French administrative and medical culture relies heavily on the written word, whereas certain migrant populations come from traditions that are more centred on oral communication.

This distinction is essential in the field of health.

Today, the problem is no longer a lack of information or difficulty in accessing it. On the contrary: information, particularly health-related information, is ubiquitous, abundant and sometimes contradictory. Between social media, video platforms, the media and institutional content, individuals must constantly sort through, interpret and prioritise complex data.

Health literacy thus refers to the ability to identify, understand, evaluate and use health information to make informed decisions regarding care, prevention or health promotion.

HIV: when understanding directly influences health 

In the field of HIV, the consequences are tangible. The studies presented show that low levels of literacy can affect:

• the uptake of testing;
• adherence to treatment;
• viral load;
• retention in care.

Literacy thus becomes a major determinant of health inequalities.

These issues have led to an explosion of research and assessment tools: over 150 measurement scales exist today. Yet, despite this methodological sophistication, the results remain difficult to interpret.

Most studies are conducted in Northern countries, particularly the United States, which raises questions of comparability and applicability in other cultural or healthcare contexts. Above all, results vary significantly depending on the tools used and associated social factors: age, gender, educational attainment, precarious living conditions, social isolation or migration status.

“Distributed literacy”: a more collective approach 

The findings on this issue from the VESPA3 study presented during the session challenge a widely held belief: that measuring an individual’s literacy allows us to predict their behaviour or state of health.

In reality, researchers observe that low individual literacy does not systematically lead to a poorer quality of life or poorer medical care. Some people compensate through their social circle, community networks or trusted relatives who are able to explain, translate or provide support.

The speakers then refer to “distributed literacy”: skills circulate within social groups. Understanding health issues is not solely an individual matter; it can be a collective one.

This hypothesis also leads us to question the healthcare systems themselves. A person may appear to “have a low level of literacy” not because they understand less, but because the healthcare system is designed according to cultural codes that are difficult for them to access.

In other words, the difficulty often lies not with the individuals but with the system.

A particularly relevant consideration for Switzerland 

These analyses resonate strongly with the Swiss reality. In a multilingual country, characterised by significant cultural and migratory diversity, the challenges of understanding a complex healthcare system are central.

For Swiss AIDS Aid, this observation opens up several important avenues.

Firstly, it highlights the limitations of a strictly individual approach to prevention or informed consent. Sociodemographic characteristics alone are insufficient to identify those who will face comprehension difficulties. A personalised discussion remains essential within a shared decision-making process.

Secondly, it highlights the importance of community-based approaches. Formal and informal community organisations, peers, community ambassadors and support workers play a fundamental role in the circulation of information, the strengthening of collective knowledge, individual and collective autonomy, and the reduction of inequalities in access to information and healthcare.

Finally, this session also invites institutions to scrutinise their own practices:

• the language used;
• administrative and organisational complexity;
• the format of communication between printed materials (text and illustrations) and the prominence given to oral communication (through direct interaction or via video);
• the cultural accessibility of prevention messages.

Towards more accessible public health 

Ultimately, this session proposed a shift in perspective. Health literacy must not be used to categorise individuals according to their presumed level of understanding. Above all, it must push health systems to become more transparent, more inclusive and better adapted to the diversity of cultures, life experiences, needs and expectations. 

In the context of HIV, as in other areas, the challenge is therefore not merely to convey information. It is to create the conditions that enable everyone to truly take ownership of it.