Workshop
Safe Access to Sensitive Research Data

November 25, 2022
Bern, Swiss National Science Foundation

 

This one-day workshop, organised by FORS and the University of Applied Sciences of the Grisons (FHGR), assembled relevant actors and stakeholders in Switzerland concerned by the dissemination of sensitive data for research purposes. The goal was to identify interesting models, key issues, and barriers regarding the building of national infrastructure for sensitive data, and to discuss and initiate forms of collaboration and concerted action.

In addition to FORS and FHGR, the following institutions were represented at the workshop: Swiss National Science Foundation; Swiss Federal Statistical Office; State Secretariat for Education, Research and Innovation; Swiss Academy of Social Sciences and Humanities; SWITCH; Swiss Personalised Health Network (SPHN); Swiss Federal Social Insurance Office (BSV); Swiss Institute of Bioinformatics (SIB); Educa; University of Basel; University of Bern; University of Lausanne; University of Neuchâtel; GESIS (Germany); DataSHIELD (UK); Secure Data Access Centre (France); RDCnet (Germany); Sikt (Norway).

The conference summary

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The workshop programme

Workshop: “Safe Access to Sensitive Research Data”
When: November 25, 2022
Where: Bern, at the Swiss National Science Foundation, Plenary room no 21, Wildhainweg 21

Reception (9:30-10:00)

Welcome: Brian Kleiner and David Schiller

Keynote: Deborah Wiltshire / GESIS (10:00-11:00, including 15-minute break) 

Session 1: International models and perspectives (11:00-12:30): moderated by David Schiller

  • DataSHIELD: Becca Wilson (United Kingdom)
  • Sikt: Ørnulf Risnes (Norway)
  • CASD : Kamel Gadouche (France)
  • RDCnet: Neil Murray (Germany)

Lunch (12:30-14:00)

Session 2: National perspectives (14:00-15:30): moderated by Brian Kleiner

Keynote: Georg Lutz / FORS

  • Ethical issues and data protection: Pablo Diaz / FORS
  • Researcher/user perspective: Ilka Steiner / BSV
  • Health/medical field: Sabine Österle / SPHN
  • Linked data: Jacques Babel / BFS

Coffee break (15:30-15:45)

Session 3: Where to go from here? (15:45-17:00)

a) Four breakout groups, with reporting from group Chairs
b) Conclusions in plenum: Next steps

Focus points for Session 3:

  • Coordination of infrastructure at the national level
  • Promising models
  • Priority of needs
  • Synergies (technical, expertise, etc.)
  • Network/community building
  • Setting up a possible roadmap for national infrastructur

The presentations

Welcome by Dr. Brian Kleiner / FORS & Prof. David Schiller / FHGR, Switzerland

Workshop on Safe Access to Sensitive Research Data

Keynote 1: Dr. Deborah Wiltshire / GESIS, Germany

Presentation: Providing Safe Access to Sensitive Data

Session 1: International models and perspectives Dr. Rebecca Wilson / DataSHIELD, UK

The case for federated analysis: A DataSHIELD perspective

Session 1: International models and perspectives. Ørnulf Risnes / Sikt, Norway

microdata.no provides instant, online access to large amounts of detailed and linkable microdata without any form of application.

Session 1: International models and perspectives. Kamel Gadouche / CASD, France

CASD – Secure Data Hub : Secure access to confidential data

Session 1: International models and perspectives. Neil Murray / RDCnet, Germany

RDCnet: Connecting guest researcher workstations to provide secure access to sensitive microdata

Keynote 2: Prof. Dr. Georg Lutz / FORS, Switzerland

How to improve access to sensitive data at the national level

Session 2: National perspectives. Dr. Pablo Diaz / FORS, Switzerland

Data protection and open research data

Session 2: National perspectives. Dr. Ilka Steiner / BSV, Switzerland

Access to sensitive research data. Researcher/user experience.

Session 2: National perspectives. Dr. Sabine Österle / SPHN, Switzerland

Swiss Personalized Health Network. From clinical (routine) data to FAIR research data

Session 2: National perspectives. Dr. Jacques Babel / SFSO, Switzerland

LABB, a future backbone for educational research in Switzerland?