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NEIC TRYGGVE – NORDIC SERVICES FOR SENSITIVE DATA Antti Pursula, [email protected] https://wiki.neic.no/tryggve
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Apr 13, 2017

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Page 1: 170131 tryggve-at ssi-biobanks-ap

NEIC TRYGGVE – NORDIC SERVICES FOR SENSITIVE DATA

Antti Pursula, [email protected] https://wiki.neic.no/tryggve

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USE OF HUMAN DATA IN BIOMEDICAL RESEARCH HAS GREAT POTENTIAL

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!

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PROTECT PRIVACY OF THE INDIVIDUAL

Research use of health data requires: Data protection Secure data transfer Secure analysis environments Ethical considerations Effective legislation

CHALLENGE IS TO PREVENT NON-AUTHORIZED USE OF DATA WHILE UTILIZING THE DATA FOR THE BENEFIT OF SOCIETY AND INDIVIDUALS

Health and well-being data on humans is sensitive, personal data that needs to be protected, even after de-identification

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TRYGGVE PROJECT COLLABORATION FOR SENSITIVE BIOMEDICAL DATA

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

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MOBILITYEnhancing cross-border mobility of: data, users and analysis pipelines

ACCESSIBLEServices for sensitive data should be accessible to users across Nordics regardless of their location

PRAGMATIC APPROACHImplement solutions that support various use cases and varying local terms and conditions

TRYGGVE TARGETS IN A NUTSHELL

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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

Mosler service at NBIS

ePouta secure cloud at CSC

Computerome at DTU

SECURE CLOUD Infrastructure for data and computing (ePouta, Computerome)

SECURE REMOTE DESKTOPbacked up with computing resources (TSD, Mosler, Computerome)

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SECURE SYSTEMS THE USER STAYS IN CONTROL

TAKING INTO USE EXTERNAL SECURE SERVICE DOES NOT IMPLYTRANSFERRING THE CONTROL OVER THE DATA TO THE PROVIDER!

Where the data is analyzed or stored and who has the control over the data are different thingsService providers offer secure environment for storing and analyzing their data

Data handler contracts define the roles

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GETTING STARTED USING THE TRYGGVE SERVICES

Aimed for Nordic research teams

Backed by ELIXIR Nodes and NeIC

CURRENTLY ACTIVE USE CASES

Use of the systems not limited To Nordic countries!

CALL FOR NEW USE CASES

CONTACT INFORMATION TO SERVICES ON THE TRYGGVE WEB SITE https://wiki.neic.no/wiki/Tryggve_Getting_Started

Trans-Nordic Gene-Environment Analyses in Schizophrenia

Scandinavian Genetics Collaboration for Olink Biomarkers

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CASE EXAMPLE ON TRYGGVE SUPPORT FOR A USE CASE

PROCESSING SENSITIVE DATA FORSCHIZOPHRENIA RESEARCH

More info and interview of Prof. Sullivan athttp://www.inthefieldstories.net/processing-sensitive-data-for-schizophrenia-research/

Research on the gene-environmental interaction and causes for schizophrenia, led by professor Patrick Sullivan, KI.

Large amount of samples are available in the Nordic countries.

Secure place to conduct harmonized analyses is crucial.

Professor Sullivan, with the assistance of Tryggve security experts, is now combining data sets from Denmark, Norway, Sweden and Estonia to create a joint data set with a total of 6000 cases and 8750 controls.

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FUTURE VISIONSFOR A COLLABORATIVE EFFORT

Create Data Platforms that are internationally interoperable

Support data submission, archiving and sharing processes

Integrate with secure cloud services for data processing

Enable 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

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EGA and LOCAL EGA

• European Genome-Phenome Archive (EGA) is a European secure data archive for human data – Hosted by EMBL-EBI in Hinxton, UK (original location), and CGR in

Barcelona– Collects associated metadata with search functionality – Data Access Committee (DAC) workflow for requesting access to data.– REMS software originating from ELIXIR Finland / CSC planned to provide

digital process for managing entitlements • Local EGA is an effort to build distributed Nodes of EGA in Europe

– Work task in ELIXIR EXCELERATE project– Nordics support this with resources and coordination from Tryggve– Submission and distribution of data via the node (Local EGA)– Metadata search and permissions at central EGA

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https://www.ebi.ac.uk/ega

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LOCAL EGA PLAN IN THE ELIXIR EXCELERATE PROJECT

• Target is to provide software infrastructure (Local EGA) that allows Elixir Nodes, biobanks and institutions to:– host controlled-access human data in a similar way to how the EGA is

currently doing– share the publicly visible metadata with EGA in order to facilitate

discovery and findability• It is assumed that there are restrictions on moving genomic raw

data or other sensitive data across borders/limits established by national laws or institutions.

• The ELIXIR nodes hosting Local EGAs are planned to take care of hardware, communications, and other infrastructure, also for the management of such "facility”

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PLANNED USE CASE: DATA ARCHIVE FOR BIOBANKING

• Setting up a databank solution for Danish National Biobank to facilitate submission, archival and access to digital data

• What Tryggve2 can do – Support from the Nordic expertise by the local node (DTU /

Computerome)– Dedicated person to support the case – Joint development work on common components, especially Local EGA– Influence overall development of Nordic secure e-infrastructure

• Additional components for wider adoption ?– REMS provides complete process for managing entitlements – CPRAS for data pseudonymization and anonymization

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AUTHORIZATION MANAGEMENT WITH REMS

• REMS provides complete process for managing entitlements • Demo available at https://remsdemo.csc.fi/

Principalinvestigator

Applicant

Research groupMembers of the

application

Metadata on dataset 1&2

Dataset 1

Dataset 2

DAC 1Approver

DAC 2Approver

REMS

Workflow

Reports

Entitlements

IdP

IdP

IdP

SP

1. Apply for access

4. Approve

5. Access

3. Circulate to approver

2. Commit to licence terms

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SUMMARYTRYGGVE PROVIDES SECURE SERVICES ACROSS BORDERS

A Secure private cloud is an infrastructure operated solely to provide an

on demand specific use case service transparent to the end user

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