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Nordic Register and Biobank Data: A Vision of an Integrated Nordic Research Platform

This article discusses the potential of creating a shared virtual space, known as the Nordic Commons, where researchers can find, manage, share, and reuse biomedical research data, software, metadata, and workflows. It highlights the unique resources available in the Nordic countries, such as reliable demographics and healthcare registers, clinical and population cohorts, national biobanks, and expertise in biotechnology and information technology. The article also identifies the challenges and perspectives involved in establishing the Nordic Commons, emphasizing the need for a clear legal and ethical framework, transparency, and the involvement of key stakeholders.

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Nordic Register and Biobank Data: A Vision of an Integrated Nordic Research Platform

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  1. Nordic Register and Biobank Data A Nordic Commons A vision of an integrated Nordic research platform J Palmgren NOS-M Stockholm 2016

  2. Nordic populations 5,5M 0,3M 9,3M 5,3M 4,9M J Palmgren

  3. Unique Nordic resources Reliable demographics and healthcare registers Clinical and population cohorts Biotechnology and Information technology National biobanks Bioinformatics, computational biology, biostatistics High quality epidemiology and clinical research

  4. A longitudinal perspective on health and diseasePersonalized diagnostics and treatment Cured Chronic/current disease Healthy Diagnosis Dead time

  5. Focus on research data Nordic Council of Ministers (NCM) Marie Sandberg, CSC, 2012 Challenges from six perspectives: • The political perspective • The organizational perspective • The legal perspective • The financial perspective • The ethical perspective • The technical perspective The lack of a Nordic perspective for research data implies a risk of developing policy directives which are not aligned on the Nordic level.

  6. A vision A Nordic Commons “A shared virtual space where scientists can work with the digital objects of biomedical research. This is a system that will allow investigators to find, manage, share, use and reuse data, software, metadata and workflows”. From Data Science at NIH

  7. Components of a Commons ecosystem from • A computing environment, such as the cloud and/or HPC (High Performance Computing) resources, which support access, utilization and storage of digital objects. • Data sets that adhere to the Commons Digital Object Compliance principles. • Software services and tools that enable; • Scalable provisioning of compute resources. • Interoperability between digital objects within the Commons. • Indexing and thus discoverability of digital objects. • Sharing of digital objects between individuals or groups. • Access to and deployment of scientific analysis tools and pipeline workflows. • Connectivity with other repositories, registries and resources that support scholarly research. • A set of Digital Object Compliance principles that describes the properties of digital objects that enables them to be findable, accessible, interoperable and reproducible (FAIR).

  8. A Nordic context(Common pot initiative) The NordForskProgramme on Health and Welfare • Academy of Finland, • Danish Research Council for Independent Research/Medical Sciences, • Icelandic Centre of Research (Rannis), • The Research Council of Norway, • The Swedish Research Council for Health, Working Life and Welfare (FORTE) • The Swedish Research Council • NordForsk. The Programme runs from 2014 to 2018, covers 11 research projects in 2016. The perspective is broad. From 2017 a Research Infrastructure and an education component are planned as part of the Programme

  9. A Nordic Commons would rely on • A clear legal and ethical framework for sharing data and tools across borders • Transparency and an open access policy • Involvement of a broad range of Nordic key stakeholders • Political level (legislation and ethics) • Research funding level • National data-owner institutions • eScience and eInfrastructure expertize • Scientists The Nordic countries need to tap into the ongoing discussions on Open Science and data sharing in the contect of the EU Open Science Cloud and other international initiatives.

  10. Data Sharing Mine! across • organisations • disciplines • geographical and institutional boarders • research groups and scientists Beware of financial, organisational, technical, legal, ethical, cultural… obstacles

  11. Olli Kallioniemi, MD, PhD Director, Science for Life Laboratory Nov 17, 2016

  12. SciLifeLab national life science infra-structure center & collaborative research National Board Management group 11 National infrastructure platforms 1000+ scientists: Hub for next-gen life science research

  13. NBIS Bioinformatics support and services SciLifeLab Platforms SNIC Infrastructure for compute and storage SciLifeLab Data Office - Data Coordination Centre - Data Access Committee - Projects database - Public archives and research community interactions Other SciLifeLab users SciLifeLab user Nordic EMBL Partnership in Molecular Medicine

  14. + industry + new technologies => clinical trials US National Academy of Sciences 2012

  15. Individualized health care Biomarkers and diagnostics Digital /mobile health monitoring Targeted drugs Information technology and artificial intelligence Genome data Microbiome Health accounts and my-data Lifestyle & environment Participation of the study subjects Predictions Biobanks Classification of diseases Real-time utilization of health data Prevention Cost-benefit of health care

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