一份关于数据共享平台的议程设置文件：欧盟癌症数据共享研讨会
An agenda-setting paper on data sharing platforms: euCanSHare workshop.
作者信息
Devriendt Thijs, Ammann Clemens, W Asselbergs Folkert, Bernier Alexander, Costas Rodrigo, Friedrich Matthias G, Gelpi Josep L, Jarvelin Marjo-Riitta, Kuulasmaa Kari, Lekadir Karim, Mayrhofer Michaela Th, Papez Vaclav, Pasterkamp Gerard, Petersen Steffen E, Schmidt Carsten Oliver, Schulz-Menger Jeanette, Söderberg Stefan, Shabani Mahsa, Veronesi Giovanni, Viezzer Darian Steven, Borry Pascal
机构信息
Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.
Working Group on Cardiovascular Magnetic Resonance, Experimental and Clinical Research Center, a joint cooperation between the Charité - Universitätsmedizin Berlin and the Max-Delbrück-Center for Molecular Medicine, Berlin, Germany.
出版信息
Open Res Eur. 2021 Nov 23;1:80. doi: 10.12688/openreseurope.13860.2. eCollection 2021.
Various data sharing platforms are being developed to enhance the sharing of cohort data by addressing the fragmented state of data storage and access systems. However, policy challenges in several domains remain unresolved. The euCanSHare workshop was organized to identify and discuss these challenges and to set the future research agenda. Concerns over the multiplicity and long-term sustainability of platforms, lack of resources, access of commercial parties to medical data, credit and recognition mechanisms in academia and the organization of data access committees are outlined. Within these areas, solutions need to be devised to ensure an optimal functioning of platforms.
为解决数据存储和访问系统分散的问题，正在开发各种数据共享平台，以加强队列数据的共享。然而，若干领域的政策挑战仍未得到解决。举办了euCanSHare研讨会，以识别和讨论这些挑战，并确定未来的研究议程。概述了对平台的多样性和长期可持续性、资源匮乏、商业机构获取医疗数据、学术界的信用和认可机制以及数据访问委员会的组织等方面的担忧。在这些领域内，需要设计解决方案，以确保平台的最佳运行。
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