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首页> 美国卫生研究院文献>Orphanet Journal of Rare Diseases >Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection - quantitative survey and recommendations
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Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection - quantitative survey and recommendations

机译：共享和保护我们的健康数据：一种基于证据的方法可用于罕见病患者对数据共享和数据保护的观点-定量调查和建议

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BackgroundThe needs and benefits of sharing health data to advance scientific research and improve clinical benefits have been well documented in recent years, specifically in the field of rare diseases where knowledge and expertise are limited and patient populations are geographically dispersed. Understanding what patients want and need from rare disease research and data sharing is important to ensure their participation and engagement in the process, and to ensure that these wishes and needs are embedded within research design. EURORDIS-Rare Diseases Europe regularly surveys the rare disease community to identify its perspectives and needs on a number of issues in order to represent rare disease patients and be their voice within European and International initiatives and policy developments.Here, we present key findings from a large quantitative survey conducted with patients with rare diseases and family members as part of a continuous evidence-based advocacy process developed at EURORDIS. The aim of this survey was to explore patient and family perspectives on data sharing and data protection in research and healthcare settings and develop relevant recommendations to support shaping of future data sharing initiatives in rare disease research.This survey, translated into 23 languages, was carried out via the Rare Barometer Programme and was designed to be accessible to a diverse population with a wide range of education backgrounds. It was widely disseminated via patient organisations worldwide to ensure that a wide range of voices and experiences were represented.
机译：背景技术近年来，充分记录了共享健康数据以促进科学研究和改善临床益处的需求和益处，特别是在罕见疾病领域，其知识和专业知识有限，患者人群分散。了解患者对稀有疾病研究和数据共享的需求和需求对于确保他们的参与和参与以及确保将这些愿望和需求嵌入研究设计中至关重要。 EURORDIS-Rare Diseases Europe会定期对罕见病患者进行调查，以确定其在许多问题上的观点和需求，以代表罕见病患者并成为欧洲和国际倡议和政策发展过程中的声音。对罕见病患者及其家庭成员进行的大规模定量调查是EURORDIS开展的基于证据的持续倡导流程的一部分。这项调查的目的是探讨患者和家庭对研究和医疗机构中数据共享和数据保护的观点，并提出相关建议以支持未来稀有疾病研究中数据共享计划的形成。该调查被翻译成23种语言。通过“稀有晴雨表计划”进行分析，旨在使具有广泛教育背景的多样化人群可以使用。它已在世界各地的患者组织中广泛传播，以确保代表广泛的声音和经验。

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