Services for the use of human data in cross-border collaborations. Presentation at ECCB 2016 confenrence. Introducing outcomes of Nordic Tryggve project.

1. www.elixir-europe.org
Services for the use of human data in cross-border
research collaborations
Antti Pursula, M.F.Iozzi, N.Jareborg, A.Syed
https://wiki.neic.no/tryggve
ECCB 2016, The Hague, NL

2. Use of human data in biomedical research
• Use of human data for research has great potential to advance the biomedical
research: Personalized medicine, cure of diseases, improved life quality, …
• Data is collected by biobanks, research institutes, large genome studies, register organizations,
hospitals, personal health apps, etc.
• Society benefits when these data collections are made available for research!
• However…

3. Protect and empower the individual
• Health and well-being data on humans is sensitive, personal data that needs to be
protected, even after de-identification
• Research use of health data requires data protection, secure data transfer, secure
analysis environments, as well as ethical considerations, empowerment of data
subjects, and effective legislation
Challenge is to prevent non-authorized use of data while
utilizing the data for the benefit of society and individuals

4. Need for secure IT services
• To grasp the promise of accelerated research based on health data, and
simultaneously taking into account the limitations, we need IT solutions that
implement the necessary preconditions.
• ELIXIR Nodes in Finland, Denmark, Norway and Sweden have teamed up to
develop and scale up services for sensitive research data, within the Nordic
Tryggve project

5. • Project aims to strengthen biomedical research by facilitating use of sensitive data
in cross-border projects
• Partners and funders are NeIC and ELIXIR Nodes in Denmark, Finland, Norway and
Sweden
• 3-year project with volume of ca. 100 PMs /year (ends in Oct 2017)
• Project will build on strong existing capacities and resources in Nordic countries
Tryggve project – collaboration for sensitive biomedical data

6. Tryggve targets
• Pragmatic approach: Implement solutions that support various use cases and
varying local terms and conditions
• Enhancing cross-border mobility of data, mobility of users, and mobility of
analysis pipelines.
• Services for sensitive data should be accessible to users across Nordics regardless
of their location

7. Secure computing and data environments
• Tryggve service development relies on secure computing and data environments at
ELIXIR Nodes at the participating countries
• TSD 2.0 service at USIT, Norway
• Mosler service at NBIS, Sweden
• ePouta secure cloud at CSC, Finland
• Computerome at DTU, Denmark
• Rough categorization of the above systems:
• Secure Remote Desktop backed up with computing resources: TSD, Mosler, Computerome
• Secure cloud infrastructure for data and computing: ePouta, Computerome

8. Secure systems and sensitive data
• Where the data is analyzed or stored; and who has the control over the data are
different things.
• The user stays in control. Service providers offer secure environment for storing
and analyzing their data.
• Data handler contracts define the roles.
Taking into use external secure service does not imply
transferring the control over the data to the provider

9. Across borders
• Mobility of data:
• Researchers should be able to combine data from several sources and countries
• Possible use case: pool data from several countries to achieve larger sample sizes
• Mobility of users:
• Researchers should be able to use the service best suited for their research project, regardless if
it is in the same country
• Possible use case: access the same system and data that collaborators in another country use
• Mobility of analysis pipelines:
• Researchers should be able to deploy their preferred analysis pipeline on the system being used
• Possible use case: data in several locations but can not be pooled; run standardized analyses on
all partial data sets

10. Future visions
• Create Data Platforms that are internationally interoperable
• Support data submission, archiving and sharing processes
• Integrated with secure cloud services for data processing
• Enables sharing of data to third parties who have the appropriate access permissions
• Creating such data platforms is a collaborative effort between (at least) the research
community, IT infrastructure providers and data collecting organizations

11. Using of the ELIXIR Tryggve services
• Tryggve project runs a continuous call for use cases
• Aimed for Nordic research teams
• Backed by ELIXIR Nodes and NeIC
• Currently active use cases:
• Trans-Nordic Gene-Environment Analyses in Schizophrenia
• Scandinavian Genetics Collaboration for Olink Biomarkers
• Use of the systems not limited to Nordic countries!
• Contact information to services on the Tryggve web site
https://wiki.neic.no/wiki/Tryggve_Getting_Started

12. Summary
• Nordic ELIXIR Nodes collaborate to create a region where all the secure services are
accessible to users regardless of their location
• Pragmatic: mobility of data, mobility of users, mobility of pipelines
• Based on secure data and computing environments in each participating country
• Cross-border use cases are in operation
Contact:
https://wiki.neic.no/tryggve
antti.pursula@csc.fi