e-Infrastructure for Sensitive biomedical data NeiC 2015 Conference Espoo, Finland Antti Pursula

Use of sensitive data in research Data collected by hospitals, public health authorities, researchers, biobanks, etc. has tremendous potential for improving human health if made available for biomedical research. However, the data is usually identifiable to individuals Utilizing sensitive data in research is allowed but specific ethical, legal and technical measures need to be taken to protect privacy of data subjects 2

3

4

Use of sensitive data in research Utilizing sensitive data in research is allowed but specific ethical, legal and technical measures need to be taken to protect privacy of data subjects Nordic Tryggve project aims to enable the use of sensitive data in biomedical research by – developing secure systems for data processing and data transfer – sharing best practices and processes between countries – analysing relevant legal framework in Nordics – facilitate powerful research on Nordic level 5

Tryggve project – platform for sensitive biomedical data 6 Nordic 3-year collaboration on sensitive biomedical data funded by NeIC and the ELIXIR nodes in Denmark, Finland, Norway & Sweden Main goals – Facilitate sharing and combining sensitive data between countries – Enable projects to store and process sensitive data securely Tryggve is user-driven: Use cases submitted by the research community are implemented.

“Building blocks” of sensitive data platform Tryggve builds on services developed in each participating country, improving their interoperability and facilitating cross-border access. TSD 2.0 service at USIT, Norway Mosler service at BILS, Sweden ePouta IaaS at CSC, Finland Bioinformatics tools registry at DTU, Denmark REMS authorization management service at CSC, Finland Variety in the systems involved offers flexibility to handle different user demands 7

Example of interoperability: Shared computational resources across Nordics Aim: Enable use of resources across Nordic ELIXIR nodes. Mosler service in Sweden offers PaaS environment for processing of sensitive data, and ePouta at in Finland offers IaaS resources Offering compute and storage resources from ePouta for Mosler will bring benefits: – When Mosler hardware resources are full or not available – When data resides at ePouta and users wish to use Mosler frontend – When legislation or practices require dataset not to be moved outside Finland Requires connecting two infrastructures and a dedicated network connection between systems 8

Use cases help to focus development Development driven by use cases from the research communities Use case presents an actual and specific need at a research group Cases can be submitted continuously during the project. – Prioritization of use cases decided by Tryggve Steering group Work within a use case is collaboration between Tryggve project (implementation, technical support, etc.) and researchers (requirements, testing, pilot use, …) Instructions to submit use cases on the project web site wiki.neic.no/wiki/Tryggve 9

Use case example: Trans-Nordic Gene-Environment Analyses in Schizophrenia Aim: Systematic evaluation of the interaction of genetic risk with environmental risk factors for schizophrenia All genetic and environmental data now exist and could be analysed, however the data are siloed within individual research groups and unavailable for combined analysis. “To accomplish the scientific aims, we require a secure place to conduct harmonized analyses of gene-environment interactions and risk of schizophrenia. “ Use case by: Prof. P. Sullivan (KI, Sweden), and collaborators in Finland, Denmark and Norway. Tryggve project to provide secure processing environment and to perform legal assessment of trans-Nordic use of the data 10

Tryggve - Added value for the users The end product: Trusted platform for services on sensitive data in Nordics – Store, share and process sensitive data for research – Simple way to apply for permission and get access to services – Facilitate powerful projects on the Nordic level Platform shown to comply with legal framework 11

Thank you For updates check project web page wiki.neic.no/wiki/Tryggve Contact Project Manager Antti Pursula 12