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
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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DOI：
10.1186/s13023-019-1123-4
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发表时间：
2019-07-12
影响因子：
3.7
通讯作者：
Bros-Facer, Virginie
中科院分区：
文献类型：
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作者：
Courbier, Sandra;Dimond, Rebecca;Bros-Facer, Virginie
背景近年来，共享健康数据以推进科学研究和提高临床效益的需求和好处已得到充分记录，特别是在知识和专业知识有限且患者群体地理分散的罕见疾病领域。了解患者从罕见疾病研究和数据共享中想要什么和需要什么对于确保他们参与和参与该过程并确保这些愿望和需求嵌入到研究设计中非常重要。 EURORDIS-欧洲罕见病组织定期对罕见病界进行调查，以确定其对许多问题的观点和需求，以便代表罕见病患者，并在欧洲和国际倡议和政策制定中代表他们的声音。在此，我们介绍对罕见病患者及其家庭成员进行的大型定量调查的主要结果，作为 EURORDIS 制定的持续循证倡导流程的一部分。本次调查的目的是探讨患者和家属对研究和医疗保健环境中的数据共享和数据保护的看法，并提出相关建议，以支持制定罕见病研究中未来的数据共享计划。这项调查已翻译成 23 种语言，通过 Rare Barometer 计划进行，旨在面向具有广泛教育背景的多元化人群开放。它通过世界各地的患者组织广泛传播，以确保代表广泛的声音和经验。 主要发现罕见病患者，无论其疾病的严重程度和社会人口特征如何，都明确支持数据共享，以促进研究和改善医疗保健。然而，罕见病患者共享数据的意愿确实有特定的要求，以尊重他们的隐私、选择和对使用其数据的信息的需求。结论为了确保罕见病健康和研究领域国际数据共享倡议的可持续性和成功，需要实施适当的立法，并需要多方利益相关者的努力，以促进文化和技术变革，从而系统地整合患者关于共享其自身健康数据的偏好。
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.Main findingsRare disease patients, regardless of the severity of their disease and their socio-demographic profile, are clearly supportive of data sharing to foster research and improve healthcare. However, rare disease patients' willingness to share their data does come with specific requirements in order to respect their privacy, choices and needs for information regarding the use of their data.ConclusionsTo ensure sustainability and success of international data sharing initiatives in health and research for rare diseases, appropriate legislations need to be implemented and multi-stakeholder efforts need to be pursued to foster cultural and technological changes enabling the systematic integration of patients' preferences regarding sharing of their own health data.