Researchers who use register data from various public authorities and registries often work with personal data. These personal data need to be protected, and therefore there are specific laws and rules that guarantee that the privacy of research participants is protected. But how does that sit with the growing demands that data should be shared and accessible, and what are the registers' views?
These are the types of questions that were discussed on 26 November, when SND organised a webinar on register-based data and open science, an event which attracted a record audience of over 120 participants. The webinar was organised and moderated by Karina Nilsson and Anders Brändström from Umeå University, SND Domain Specialists for register-based research.
Different perspectives from central stakeholders
Several perspectives were addressed in the webinar, and some central stakeholders took different points of view. Statistics Sweden (SCB) was represented by their General Counsel Joachim Angermund. He addressed the legally challenging issues for the SCB system MONA, which is used to make microdata accessible for research and statistical purposes. The technology behind MONA is provided by SCB, but the tool offers separate work spaces for users. This means that the responsibility for managing personal date in the end lies with the data recipient, said Joachim Angermund.
Björn Halleröd from the Swedish Research Council (SRC) introduced the directional proposal from the Swedish Research Council and the Association of Swedish Higher Education Institutions (SUHF). They suggest that several current research infrastructures should merge into one cohesive Swedish research e-infrastructure, which would contain the MONA system from SCB, SND, SUNET, SNIC, and RUT from the SRC. This new organisation, which is suggested to be a public governmental agency, would contribute to a better utilisation of existing register data, while simultaneously improving the protection for privacy. The new agency could also support researchers and the research data support functions in the Swedish higher education institutions in matters of rights and obligations in making research data accessible.
Christel Häggström from Registercentrum Norr talked about quality registers and their approach to open data. She said that quality registers contain personal data about specific diagnoses, which is a type of special category data that cannot be open. However, there are open aggregate data, combined data from several individuals or groups. Christel Häggström also highlighted the various interactive reports that can be found in registers, and how it is possible to, at least to some degree, find open metadata from quality registers in RUT.
Additional perspectives on challenges and opportunities in register-based research
Gustav Nilsonne, Domain Specialist for medicine in SND and champion for open data, opened the webinar with a presentation about what researchers and registers, respectively, can do to promote accessibility in register-based research.
Marit Juselius, Legal Officer at Umeå University, addressed the legal challenges for an HEI in making research data with personal data accessible. Thomas Kieselbach, member of the research data support function (DAU) in the same university, spoke about the widening opinion that research data is an asset, and that the HEIs can contribute to a positive development.
Read more and see the presentations from the webinar here. (In Swedish only.)