Analysis of UK Strategy for Rare Diseases and Its Enlightenment to China / 中国药房

OBJECTIVE: To learn from the implementation experience of UK Strategy for Rare Diseases, and to provide reference for the formulation of the rare disease guarantee strategy in China. METHODS: The background, status quo and content of UK Strategy for Rare Diseases were introduced; its implementation experience was analyzed and summarized to provide enlightenment to the construction of relevant mechanism in China. RESULTS & CONCLUSIONS: British government took measure like strengthening the collection of message, improving service quality and uniting patient organization for patient empowerment, while spreading advanced disease screening and gene detection technology, developping training in diagnosis and treatment of rare disease and encouraging patients to participate in the research. The comprehensive and perfect guarantee system of rare disease had been formed. British experience is worth learning. Our country should construct comprehensive guarantee framework of rare disease, support patient organizations, improve service system for patient and strengthen rare disease research to provide health guarantee for rare disease patients.

Roles of patient organizations in rare disease research and orphan drug development / 国际药学研究杂志

Due to the small population of patients, lack of clinical data and research resources, patient organization engagement became especially important in rare disease research and orphan drug development. This paper studies cases from the U.S., Europe and China, analyzes the positive roles of patient organizations in rare disease and orphan drug research.

O impacto da internet na interação entre pacientes: novos cenários em saúde / The impact of internet on patients interaction: new scenarios in health / El impacto de la internet em la interacción entre pacientes: nuevos escenarios em la salud

O artigo apresenta novas formas de atuação de grupos de pacientes durante as últimas décadas. Pacientes e/ou seus familiares fazem circular o conhecimento adquirido pela experiência com a doença em grupos de apoio, associações de pacientes e movimentos ativistas. Como resultado destas associações, surgem novos cenários na área da Saúde, como a incorporação das demandas do paciente nas políticas públicas de cuidado em saúde e a colaboração em esforços de pesquisa. O objetivo deste artigo é analisar, por meio de revisão de literatura, o papel da internet na constituição deste novo agente na área da saúde. Ele aborda igualmente um novo fenômeno, tornado possível com o advento da internet: a promoção de pesquisas por pacientes sem a participação do pesquisador especialista. Para nos auxiliar na análise destes cenários em saúde, nos servimos do conceito de biopoder.

The paper presents the new role played by patient groups over the last decades. Through the use of support groups, patient associations and activist movements, patients and/or their relatives share knowledge that has been acquired about specific illness. New scenarios arise in the field of Health derived from such associative forms, such as patients’ demands being incorporated into health care public policy as well as collaboration with research efforts. The present paper aims, using literature review, to analyze the role played by the internet in the constitution of this new actor in the field of health. It also addresses a new phenomenon, made possible by the Internet: the promotion of research by patients without the participation of expert researchers. The concept of biopower is employed as a framework to analyze these new health scenarios.

El artículo presenta nuevas formas de actuación de grupos de pacientes durante las últimas décadas. Pacientes y/o familiares hacen circular el conocimiento adquirido a partir de sus experiencias con la enfermedad en grupos de apoyo, asociaciones de pacientes y movimientos activistas. Como resultado de tales asociaciones, surgen nuevos escenarios en el área de Salud, como la incorporación de las demandas de los pacientes en políticas públicas de cuidado para la salud y la colaboración de los mismos con la investigación científica. El objetivo de este artículo es analizar, por medio de una revisión bibliográfica, el papel de internet en la constitución de este nuevo agente en el cuidado de la salud. El mismo aborda, igualmente, un nuevo fenómeno que se ha hecho posible gracias a internet: la promoción de la investigación por los pacientes sin la participación de investigadores expertos. Para un mejor análisis de estos escenarios de salud, nos valemos del concepto de biopoder.