As associações de pacientes são um exemplo de grupos biossociais, já que sua constituição é motivada por questões biológicas comuns, tais como as doenças raras, e estão, por vezes, inscritas no movimento social em saúde. Apesar da Política Nacional de Atenção Integral às Pessoas com Doenças Raras ter sido promulgada em 2014, os pacientes ainda têm dificuldade em garantir acesso a tratamento pelo Sistema Único de Saúde. Assim, investigamos como as associações de pacientes com doenças raras tecem, através das redes sociais virtuais, o acesso a tratamento. Esta pesquisa é parte de um estudo sobre o uso das mídias sociais pelas associações de pacientes com doenças raras, e emprega como método a netnografia. As fontes da pesquisa foram páginas de associações de pacientes com doenças raras no Brasil presentes no Facebook. Observamos que a atuação das associações de pacientes é plural, indo desde a orientação de pacientes e familiares sobre questões relacionadas a tratamento e qualidade de vida, até a participação ativa na elaboração e implementação de políticas públicas. Os discursos apresentados sugerem que o foco destas associações é, na maior parte dos casos, o acesso a medicamentos, em detrimento da implantação efetiva da Política Nacional de Atenção Integral às Pessoas com Doenças Raras.
Palavras-chave:
doenças raras, rede social, judicialização da saúde, política de saúde, pesquisa qualitativa
Abstract:
Patient s associations are an example of biossocial groups, since its formation is motivated by common biological characteristics, such as rare diseases, and sometimes are included in social movements in health. Even though a national policy geared to rare diseases was promulgated in 2014, patients still struggle to acsess the national health system, mainly regarding treatment. Therefore, we investigated how rare diseases patient’s associations forge, through social networks, access to treatment. This research is part of a study about the use of social media by rare diseases patient’s associations, which employs netnography as a method. Data sources were Facebook pages of the associations, in Brazil. We observed that they have diferent activities,patient and family guidance about treatment and quality of life, to active participation on creation and enactment of public policies. The discourses presented sugest that the focus of patient’s associations is, in the majority of cases, the access to drugs rather than the effective enactment of the national policy geared towards rare diseases.
Keywords:
rare diseases, social network, judicialization of health, health policy, qualitative research
Treatment networks and rare diseases patients associations
Resumo (abstract):
Patient s associations are an example of biossocial groups, since its formation is motivated by common biological characteristics, such as rare diseases, and sometimes are included in social movements in health. Even though a national policy geared to rare diseases was promulgated in 2014, patients still struggle to acsess the national health system, mainly regarding treatment. Therefore, we investigated how rare diseases patient’s associations forge, through social networks, access to treatment. This research is part of a study about the use of social media by rare diseases patient’s associations, which employs netnography as a method. Data sources were Facebook pages of the associations, in Brazil. We observed that they have diferent activities,patient and family guidance about treatment and quality of life, to active participation on creation and enactment of public policies. The discourses presented sugest that the focus of patient’s associations is, in the majority of cases, the access to drugs rather than the effective enactment of the national policy geared towards rare diseases.
Palavras-chave (keywords):
rare diseases, social network, judicialization of health, health policy, qualitative research
Lima, MAFD, Gilbert, ACB, Horovitz, D.D.G.. Redes de tratamento e as associações de pacientes com doenças raras.. Cien Saude Colet [periódico na internet] (2018/jun). [Citado em 22/12/2024].
Está disponível em: http://cienciaesaudecoletiva.com.br/artigos/redes-de-tratamento-e-as-associacoes-de-pacientes-com-doencas-raras/16842?id=16842&id=16842
