[Defining the concept and potential roles of patient organizations in Hungary]

Hungary has a wide variety of patient organizations, differing significantly in their missions, structures, and activities. Several key functions of patient organizations require a clearer definition of their operational framework to be effectively fulfilled – particularly their roles in decision-making and patient representation. This study aims to define the organizational framework necessary for patient organizations to effectively perform their participatory and representative functions. Additionally, it seeks to clarify the concept of patient organizations and to compile a list of their potential roles. In defining the concept, the working group drew on a targeted review of relevant academic literature, complemented by an examination of legal frameworks from selected member states within the region. Based on consensus, the authors formulated a proposed definition of patient organizations and identified corresponding tasks. According to the authors’ proposed definition, a patient organization is a self-help, voluntary, independent, and non-profit association or foundation (provided its governing body is elected) whose primary mission is to assist patients, protect their rights and interests, and improve the living conditions of patients, their relatives, and others in similar situations. These activities are supported by volunteers and individuals committed to social responsibility. An additional criterion is that the majority of members and leadership – specifically, in the case of foundations, the governing body – must be patients and/or their relatives who are personally affected, and who hold a decisive influence over the organization’s management and operations, including a majority in the supreme and governing bodies. To the best of our knowledge, this is the first research study in Hungary to propose a definition of patient organizations using scientific rigor and methodology. The conceptual framework developed aligns with definitions established in the countries examined. The proposed definition and identified tasks will support the positioning of patient organizations as transparent, empowered, and credible advocacy bodies within healthcare decision-making processes. Orv Hetil. 2025; 166(37): 1443–1455.