Unprecedented contribution of Brazilian Health System users in adapting the Brazilian National Therapeutic Formulary

The World Health Organization (WHO) recommends the development of therapeutic formularies as an important reference source for healthcare professionals. These formularies are essential for supporting clinical practice by providing scientific and technical information on available medications, including their indications, dosages, adverse effects, and usage guidelines. However, the content is generally complex and technical, making it less accessible and understandable for patients and healthcare system users, who have different levels of health literacy and are not always familiar with medical terminology. For this reason, the National Therapeutic Formulary (FTN), an instrument of Brazil's Ministry of Health, will now have a version aimed at users of the Unified Health System (SUS). This study describes an innovative process in which lay patients actively participated in adapting the FTN content to make it more accessible and understandable. User intervention, conducted with around 600 patients, resulted in a revised and adapted version that included 444 new drug monographs. Patient contributions led to 2,050 modifications in the original content, categorized into four main types of changes: (i) adjustments in language, abbreviations, and acronyms (18%), (ii) addition and updating of specific information (37%), (iii) translation of technical knowledge into simpler terms (24%), and (iv) incorporation of additional strategies to facilitate learning (21%). This study highlights a collaborative approach between professionals and patients to improve access to health information, an area still scarcely explored in the literature. The research emphasizes the importance of adapting educational content about medications from the users' perspective, ensuring that these materials are more relevant and effective.