Sensitive Data Workshop

You can't miss it if you are service provider, a scientific community representative, a policy maker dealing with sensitive data for research.

Objectives: The session aims at bringing together service providers and user communities to highlight challenges in the management of sensitive data for research in the era of Open Science and FAIR principles

Abstract:

In the present era of digital data explosion, the Open Science paradigm together with FAIR principles provide scientists and technology providers with a new vision and methods for enhancing their research by fostering the cross-disciplinary access and (re)use of data and data technologies. The possibility of data sharing and data cross-linking is the basis for innovative research in many fields of knowledge including health and medical science. But this research often involves personal or sensitive data that must be handled with consideration of the legitimate right to personal privacy. Whilst several solutions have been developed to facilitate research involving sensitive data in compliance with privacy regulations, there is still the need to implement platforms and protocols that effectively allow cross border, inter-disciplinary research on personal sensitive data. Mechanisms for authentication and vetting, authorization, register data sharing, analysis of aggregated datasets are still open questions to be solved, both at technological and policy level. The activities to implement such solutions therefore has to be a coordinated effort transversally involving service providers, scientist and communities.

The session aims at bringing together scientific user groups with specific cases, providers of state of the art solutions currently used in local/community specific settings and with large community-based efforts. The discussion will aim at possibly identify concrete user scenarios and implementation strategies to make such a research possible European-wide. We will discuss the requirements to build up an effective research infrastructure for sensitive data that allows data (re)use under the premises of the EOSC. Critical questions will be addressed such as: Is the current H2020 funding program able to support this process? What shall be the role of the EOSC-hub?

Agenda:

11:30 - 11:35 Introduction of the session
11:35 - 11:50 Luiz Bonino, GoFAIR (remote presentation)
11:50 - 12:05 Gard Thomassen, Sigma2/TSD
12:05 - 12:20 Juan Arenas, head of project management at the ELIXIR Hub
12:20 - 12:35 Dan Still, NEIC/Tryggve
12:35 - 12:50 Chris Ariyo, CSC/ePouta
12:50 - 13:00 Discussion