Workshop:
Sensitive Data

Sensitive Data Workshop

Current research on several fields is more and more depending on availability of suitable data. Especially research that studies humans and human activity often need data that contains information of individuals in various forms. Such data is referred to as sensitive data. Notably in biomedical sciences this is a pressing issue, but concerns also several other fields. The use of sensitive data for research holds great promises for improving the health and well-being of people, so there is large motivation to make also sensitive data available for researchers. On the other hand, the privacy of individuals need to be preserved and all legislation and regulations need to be followed. In practice the research communities need advanced IT services that implement the requirements of legislation, so that they can conduct their research.

In the Nordic countries the national nodes of the ELIXIR research infrastructure are working together to solve bottlenecks in using sensitive data for research across borders. Together with NeIC they have launched the Tryggve project, that includes secure service providers from Finland, Sweden, Norway and Denmark.

This workshop will contain presentations on various aspects relating to use of sensitive data in research, including secure IT services and highlights of the outcomes of the Nordic Tryggve project, ethical and legal issues regarding the use of sensitive data, as well as researchers’ presentations on how the research data is currently being managed in the research community. There will be time reserved for discussion and questions & answers after the presentations. The participants will gain more understanding on the conditions of using sensitive data and on the solution that implement them.

Format: The workshop programme will feature presentations on the above mentioned topics: secure IT services, related ethics and legal topics, user stories, and technical topics. A report on the current status of sensitive data topics in the Nordic countries will be jointly prepared based on the workshop.

Agenda

Opening session (9:00 - 10:30)

  • 9:00 Opening and goals of the workshop, Antti Pursula, NeIC Tryggve project manager
  • 9:20 The value of research: biobanks, results, and autonomy, prof. Hallvard Fossheim, University of Bergen
  • 9:50 Secure use of sequence data at the Norwegian Cancer Genomics Consortium (title tbc.), prof. Eivind Hovig, University of Oslo
  • 10:10 Judicious use of personal data for optimization of healthcare, prof. Joakim Dillner, Karolinska Institutet

Coffee break (10:30 - 11:00)

Service provider presentations (11:00 - 12:30)

  • 11:00 Tryggve2 sensitive data project, Joel Hedlund, NeIC Tryggve Scientific Manager
  • 11:20 European Genome-phenome Archive EGA, Dylan Spalding, EMBL-EBI
  • 11:40 Danish Biobank Register – a way to overview aggregated health and biological sample data, Bart Wilkowski, SSI / Danish national biobank
  • 12:00 Sensitive data in SciLifeLab, Hanna Kultima, SciLifeLab Data Office
  • 12:15 Estonian Genome Center (title tbc.), Kristjan Metsalu, Estonian Genome Center

Lunch (12:30 - 13:30)

Solutions and tools for managing sensitive data (13:30 - 15:00)

Lightning talks (12+3 mins each)

  • 13:30 TSD - Services for Sensitive data, Maria Francesca Iozzi, USIT
  • 13:45 Services for sensitive data at Computerome, Ali Syed, DTU (tbc.)
  • 14:00 ePouta secure cloud service, Jaakko Leinonen, CSC
  • 14:15 Mosler service for sensitive data, Niclas Jareborg, NBIS
  • 14:30 SNIC SENS and Bianca (title tbc.), Peter Ankerstål, SNIC / UPPMAX
  • 14:45 REMS - Solving  access rights management for sensitive data, Tommi Jalkanen, CSC

Coffee break (15:00 - 15:30)

Use of register data for research (15:30 - 16:50)

  • 15:30 Nordic collaboration of statistics institutes (title tbc.), Claus-Göran Hjelm, Statistics Sweden
  • 15:50 Sensitive data at Statistics Finland, solutions and future plans, Valtteri Valkonen, Statistics Finland
  • 16:10 Infrastructure for sensitive data at NIASC and KI, Davit Bzhalava, KI
  • 16:30 Metadata tool RUT (title tbc.), Fredrik Quistgaard, VR

Conclusions

  • 16:50 Conclusions, Tommi Nyrönen, ELIXIR Finland

17:00 End of workshop

Workshop chair:
Antti Pursula

Sessions:
  • Tuesday, May 30, 09:00 - 12:30 (Room: Loke)
  • Tuesday, May 30, 13:30 - 17:00 (Room: Loke)