Tryggve project developing services for sensitive biomedical data

Tryggve project developing services for sensitive biomedical data: Call for Nordic use cases Nei. C 2015 Conference Workshop on sensitive data Antti Pursula 5. 5. 2015 Espoo, Finland

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

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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 addressing – data processing, storing and transfer – best practices and processes (e. g. in AAI) – requirements of legislation in Nordics 5

Tryggve project – platform for sensitive biomedical data • Nordic 3 -year collaboration on sensitive biomedical data funded by Ne. IC 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. 6

Themes in the Tryggve project • • • Technology development Interoperability of systems Process development Legal environment Use cases 7

Themes – Technology development • Purpose: Provide secure computing environment for analysis of sensitive data. • “Building blocks” – – TSD 2. 0 service at USIT, Norway Mosler service at BILS, Sweden e. Pouta Iaa. S at CSC, Finland Tools registry at DTU, Denmark • Variety in the systems involved offers flexibility to handle different user demands 8

Themes – Interoperability of systems • Purpose: Enable data transfer between systems and improve their joint use. • Tasks include – – data transfer service portable software installations using Docker containers shared computing resources study requirements for common authentication and authorization mechanisms 9

Example of interoperability: Shared computational resources across Nordics • Aim: Enable use of resources across Nordic ELIXIR nodes. • Mosler service in Sweden offers Paa. S environment for processing of sensitive data, and e. Pouta in Finland offers Iaa. S resources • Offering compute and storage resources from e. Pouta for Mosler will bring benefits: – When Mosler hardware resources are full or not available – When data resides at e. Pouta 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 10

Themes – Process development • Purpose: Share best-practices in service operations and improve usability and accessibility of services. • Tasks include – – optimizing account delivery process (2 -factor authentication) sharing experiences in IT security and security reviews improving (or harmonizing) customer contract processes possibilities for resource sharing across countries • One important aspect of Tryggve is to share knowledge in the field of the project in Nordic countries. 11

Themes – Legal environment • Purpose: Review legal framework relevant to using sensitive data in research in Nordic countries and provide guidelines for legal requirements for trans-Nordic studies. • Tasks include – assessing relevant legislation in Nordic and EU level – analyse legal requirements and conditions in some of the use cases • Work can be shared, e. g. Nord. Forsk NORIA-Net report on Joint Nordic Registers and Biobanks includes overview of legal framework – http: //www. nordforsk. org/en/publications_container/jo int-nordic-registers-and-biobanks-a-goldmine-for-health-and-welfareresearch/view 12

Themes – Use cases • Purpose: Implement and support concrete use cases to facilitate great research and to attach project in real user demands. • 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 13

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 14

Proposing a Use Case for Tryggve is easy More information at https: //wiki. neic. no/wiki/Tryggve#Use_cases 15

Tryggve end products - Added value for the users 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 16

Thank you • For updates check project web page wiki. neic. no/wiki/Tryggve • Contact Project Manager Antti Pursula antti. pursula@csc. fi 17