160905 tryggve-at-eccb pursula

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/tryggveECCB 2016, The Hague, NL

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…

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 whileutilizing the data for the benefit of society and

individuals

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

• 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

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

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

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 implytransferring the control over the data to the provider

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

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

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

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/[email protected]