Lima Maria Angelica de Faria Domingues de, Gilbert Ana Cristina Bohrer, Horovitz Dafne Dain Gandelman
Programa de Pós-Graduação em Saúde da Criança e da Mulher, Instituto Nacional de Saúde da Mulher, da Criança e do Adolescente Fernandes Figueira, Fiocruz. Av. Rui Barbosa 716, Flamengo. 22250-020 Rio de Janeiro RJ Brasil.
Cien Saude Colet. 2018 Oct;23(10):3247-3256. doi: 10.1590/1413-812320182310.14762018.
Patients' associations are an example of biosocial groups, since their formation is motivated by common biological characteristics, such as rare diseases, and they are sometimes included in social movements in health. Even though the National Policy on Comprehensive Care for Persons with Rare Diseases was enacted in 2014, patients still struggle to ensure access to and treatment by the Unified Health System. The way in which associations of patients with rare diseases gain access to treatment via social networks, is investigated. This research is part of a study about the use of social media by associations of patients with rare diseases, which employs netnography - ethnography applied to the web - as the data-gathering method. Data sources were pages of the associations on Facebook in Brazil. It was seen that the activities of the associations are multi-faceted, ranging from patient and family guidance about treatment and quality of life, to active participation in the elaboration and implementation of public policies. The discourses suggest that the focus of patients' associations is, in the majority of cases, the access to drugs rather than the effective enactment of the national policy geared towards rare diseases.
患者协会是生物社会群体的一个例子，因为它们的形成是由常见的生物学特征驱动的，比如罕见疾病，并且它们有时会被纳入健康领域的社会运动之中。尽管2014年颁布了《国家罕见病患者综合关怀政策》，但患者仍在努力确保通过统一医疗系统获得治疗。本文对罕见病患者协会通过社交网络获得治疗的方式展开调查。本研究是关于罕见病患者协会使用社交媒体的研究的一部分，该研究采用网络民族志——应用于网络的民族志——作为数据收集方法。数据来源是巴西脸书上的协会页面。可以看出，协会的活动是多方面的，从为患者和家属提供治疗及生活质量方面的指导，到积极参与公共政策的制定和实施。这些话语表明，在大多数情况下，患者协会关注的是获得药物，而非旨在治疗罕见病的国家政策的有效实施。
