Search

Rare diseases have had a special status within European Union (EU) health policy since the late 1990s. According to key EU legal documents, rare disease patients are entitled to the same good quality care as others. These individuals are particularly vulnerable due to the "low prevalence" and "uniqueness" of their disease. To ensure that patients with rare disorders in Europe can access high-quality care in their respective countries, the Council of the European Union (2009) recommended that member states adopt plans or strategies for rare diseases. Poland adopted its first Plan for Rare Diseases in 2021. This article draws from bioethical and social science scholarship on vulnerability as well as ethnographic research that I conducted among people with rare metabolic diseases, their families, health professionals, and patient advocacy groups in Poland between 2016 and 2023. I examine instruments developed within healthcare policies that are tailored to rare diseases, notably the patient passport, which is a site of disjuncture (Appadurai, 1990) embedded in healthcare policies and practices tailored to people with rare diseases. I argue that although such instruments are meant to benefit patients, they almost exclusively focus on the patient's sick body and the needs of health professionals, who are unfamiliar with a given rare disease. Thus, these instruments may engender paternalistic practices and they may contribute to discrimination and stigmatization as well as to the datafication of health vulnerabilities. Furthermore, the focus on inherent vulnerability obscures its other "layers" (Luna, 2009, 2019) or "degrees" (Traianou and Hammersley, 2023)., (Copyright © 2024 Elsevier Ltd. All rights reserved.)

Purpose - The purpose of this paper is to disseminate among concerned professionals its certain operational aspects, including some possible implications on health and medical care practices. Design/methodology/approach - It is written on the basis of the author’s special study of a diverse source of information, as well as on author’s practical experience and observation in this particular area. Findings - Special attention is paid to possible public health impacts within a broad social and economic framework, as well as to its impacts on the existing national health care systems in countries, that would possibly lead to certain degree of inequity in health at national level as an important consequence of health development progress. Originality/value - Knowledge and understanding gained from this paper might be useful in the efforts to develop and manage national health care systems to ensure a reasonable balance in health status of people of all groups.

Diagnostic radiography is a deceptively similar occupation regardless of country and yet there are wide varieties of scopes of practice, levels of autonomy, respect and understanding of what a radiographer does. A socio-cultural comparative ethnographic study was carried out in seven culturally diverse countries observing and interviewing radiographers in one regional hospital in each country. The thick descriptions collected were thematically analysed. This article describes the comparison between work culture and country culture between the seven countries using the analytic device of Hofstede's cultural dimensions. The results demonstrate a wide disparity between countries, in importance of hierarchy, acceptance of individuality, ability to work autonomously and strength of country specific cultural norms. The impact of the country culture on the practice of radiography is manifested through variations in education, scope of practice, and level of recognition within the healthcare spectrum. These findings offer insight into the socio-cultural practice of radiography through an ethnographic cultural-specific lens and provide some explanations for the barriers evidenced currently to global recognition of standards and scopes of practice. The study introduced empirical evidence into a subject matter hitherto unexplored in a global comparative manner, and creates an opportunity to improve the recognition of radiographers by creating a foundation of research upon which to build further more targeted studies. [ABSTRACT FROM AUTHOR]