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Towards a European Health Data Ecosystem
European Journal of Risk Regulation ( IF 1.8 ) Pub Date : 2020-10-09 , DOI: 10.1017/err.2020.88
Nadina IACOB , Felice SIMONELLI

The digital health ecosystem is rife with opportunities to improve healthcare through data-driven services in the European Union (EU). The value of health data, in the multiple forms in which they come (from health records to lifestyle data collected by smartphones or wearables), can truly emerge when they are allowed to flow in the ecosystem within a governance framework supported by all relevant stakeholders, with trust as the common and clear thread underpinning it. The coronavirus pandemic has provided an additional impetus for change, showing the importance of coordination and adequate communication between Member States and quality data to inform decision-making. Significant challenges remain, however, in order to achieve a fully integrated European digital health ecosystem, including: (1) the potentially diverging rules set by Member States at the national level and the need for an EU framework for the secondary use of health data; (2) the need for transparency and accountability for sustaining a data-sharing framework involving public authorities, research organisations, industry and citizens; and (3) the need for interoperable data and processes. Taking stock of these challenges, this article puts forward policy recommendations to enable the provision of pan-European data-driven healthcare services and to build a transparent and trustworthy framework for citizens.

中文翻译:

迈向欧洲健康数据生态系统

数字健康生态系统充满了通过欧盟 (EU) 的数据驱动服务改善医疗保健的机会。当健康数据被允许在所有相关利益相关者支持的治理框架内流入生态系统时,健康数据的价值可以以多种形式出现(从健康记录到智能手机或可穿戴设备收集的生活方式数据),信任是支撑它的共同而清晰的主线。冠状病毒大流行为变革提供了额外的动力,表明了会员国之间协调和充分沟通以及为决策提供信息的质量数据的重要性。然而,为了实现完全整合的欧洲数字健康生态系统,仍然存在重大挑战,包括:(1) 成员国在国家层面制定的可能存在分歧的规则以及对健康数据二次使用的欧盟框架的需求;(2) 需要透明度和问责制来维持一个涉及公共当局、研究机构、行业和公民的数据共享框架;(3) 对可互操作数据和流程的需求。考虑到这些挑战,本文提出了政策建议,以提供泛欧数据驱动的医疗保健服务,并为公民建立一个透明和可信赖的框架。(3) 对可互操作数据和流程的需求。考虑到这些挑战,本文提出了政策建议,以提供泛欧数据驱动的医疗保健服务,并为公民建立一个透明和可信赖的框架。(3) 对可互操作数据和流程的需求。考虑到这些挑战,本文提出了政策建议,以提供泛欧数据驱动的医疗保健服务,并为公民建立一个透明和可信赖的框架。
更新日期:2020-10-09
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