Norwegian roadmap for Research Infrastructure

Medicine and health encompass a wide range of basic, clinical and public medical and odontological subjects in addition to other subjects in the health sciences and health-related psychology. The research contributes to advances in health monitoring, health promotion, disease prevention, diagnostics, treatment and rehabilitation.

Research objectives

Better health and care services and reduced social inequalities in health are among the primary research policy objectives. The Government’s Long-term plan for research and higher education 2019–2028 (Report No 4 to the Storting (2018–2019)) sets out these objectives in more detail in the priority area ‘Public sector renewal, better and more effective welfare, health and care services’. The priority highlights in particular ‘Research and needs-driven innovation’ and ‘Better utilisation of public data’.

Better public health, breakthrough research and national economic and business development are the objectives of the National Research and Innovation Strategy on Health and Care for the 21st Century (2014), also known as the Health&Care21 strategy. Main priorities include knowledge mobilisation for municipalities, health and care services as a focus area of industrial policy, better utilisation of health data and a strong commitment to internationalisation of research.

The white paper The health industry - working together on value creation and better services (Report No 18 to the Storting (2018–2019)) describes the health and care services as an area of business development policy in which greater interaction between the public and private sectors offers many new opportunities. To promote innovation in preventive health care and patient treatment, investments in existing and new infrastructure must also address health care industry needs.

The Portfolio Board for Health manages the Research Council’s targeted efforts on health research. Health research and innovation is otherwise associated with many different funding schemes and activities, the majority of which are managed by the portfolio boards for Life Sciences, Enabling Technologies, and Industry and Services, respectively, together with the Research Council’s board.

Existing research infrastructure

The Research Council has contributed to the establishment of a number of national infrastructures that are important for health research and innovation. These include infrastructures for clinical studies in the primary and specialist health care services, health registries and biobanks, and technology platforms related to bioinformatics/systems biology, gene sequencing and various ‘omics’ techniques, nuclear magnetic resonance (NMR) analysis, and other imaging technologies and structure determination.

Norway has unique health data in a number of public registries and biobanks (population-based and disease-specific). The national infrastructures Biobank Norway and the Health Data Programme will make these resources more accessible for research. The Health Data Programme provides a common access management system for Norwegian public health data and a secure and highly flexible national analysis platform for all kinds of secondary use of sensitive health data and personal information. Protection of personal privacy and ethical principles, including the importance of user dialogue, is built into the system to enable all data to be reusable in accordance with the FAIR principles (findable, accessible, interoperable, reusable). Biobank Norway is a national node in the European Biobanking and Biomolecular Resources Research Infrastructure (BBMRI-ERIC), which works to increase researcher access to biomolecular resources, health data and biological materials distributed among member states in an effective, secure and ethically and legally sound manner. Services for Sensitive Data (TSD) provides solutions that meet regulatory requirements on processing and storing sensitive research data while also providing researchers with access to analyse the data.

Norway participates in the European Life-Science Infrastructure for Biological Information (ELIXIR), a bioinformatics and systems biology infrastructure that provides analytical tools, data resources and expertise. Among its collaborators are sequencing infrastructures, such as the National Consortium for Sequencing and Personalised Medicine (NCS-PM), and biobanks.

Advanced electro-physiological equipment, high-resolution microscopes and other imaging technologies make up the core of the Norwegian Brain Initiative (NORBRAIN), a national infrastructure for research on the brain and disorders of the brain and nervous system. With the world’s most powerful MR scanner, this helps to build bridges between basic research on the brain and the development of disorders related to e.g. dementia.

Two other national infrastructures are the Norwegian Advanced Light Microscopy Imaging Network (NALMIN), dedicated to advanced light microscopy to study molecules and processes in cells, and the Norwegian Molecular Imaging Infrastructure (NORMOLIM), centred around molecular imaging technologies, particularly related to cancer, cardiovascular and neurological disorders. Both are nodes of the ESFRI project Research Infrastructure for Imaging Technologies in Biological and Biomedical Sciences (EuBI-ERIC), and together provide a wide range of imaging technologies that are highly relevant to life sciences research. NOR-OPENSCREEN, a national platform for chemical biology with additional relevance to molecular medicine and health research, is the Norwegian node of the ESFRI project European Infrastructure of Open Screening Platforms for Chemical Biology (EU-OPENSCREEN-ERIC). Norway also participates as a node in the ESFRI project European Infrastructure for Translational Medicine (EATRIS-ERIC), which provides technology and expertise needed to bridge the gap between basic research and clinical research.

A key national infrastructure for all types of clinical research is the Norwegian Clinical Research Infrastructures Network (NorCRIN), which establishes a framework for and facilitates high-quality clinical studies and seeks to increase the number of Norwegian patients included in trials and industry-initiated clinical studies. NorCRIN is the Norwegian node in the ESFRI project European Clinical Research Infrastructure Network (ECRIN-ERIC). Norway is also involved globally in the Clinical Research Initiative for Global Health (CRIGH). An infrastructure for clinical studies in the primary health services called the Primary Care Research Network (PCRN) provides researchers with effective access to patients and data from the primary health services and help to ensure that clinical studies are carried out effectively and within the established time frame. In medical technology, the Norwegian Centre for Minimally Invasive Image Guided Therapy and Medical Technologies (NorMIT) provides a wide assortment of modern operating theatres with advanced medical technology equipment.

Research infrastructures and core facilities have also been developed in other important areas via internal investments on the part of the research organisations.

Need for new infrastructure, upgrades and/or coordination

In the years to come, there will be a need for new investments and upgrades as well as reinvestment in several existing medical and health infrastructures. Cases in point include advanced imaging equipment, enabling technologies (biotechnology, nanotechnology, ICT), and welfare technology for developing future patient treatment and care programmes.

Given the rapid pace of technological advancement and the rising expectations as to what the health services are to provide, the development of infrastructure for personalised (precision) medicine is becoming increasingly important. The goal is early diagnosis and targeted preventive care and treatment of disease based on information about hereditary, lifestyle and environmental factors. For Norwegian research to make its mark internationally and contribute to the development of advanced new therapies and personalised medical care, it is essential that Norway invests in infrastructure that enables systems medicine research on patients’ and groups of patients’ genomes, biomolecules, cells, tissues and organs. This requires close integration of data-driven and clinical research from the life sciences. There is a need for infrastructure for disease modelling and automated facilities for large-scale experimentation of treatments and development of pharmaceuticals. Tissue banks that can help to reveal disease mechanisms and develop targeted treatment will be of great significance to Norwegian and global research. Automated platforms will ensure high capacity and secure data that can be reproduced. Infrastructure is also needed for data on the genomes, diffusion characteristics and transmission pathways of pathogenic microorganisms in order to facilitate research on antibiotic resistance in a One Health perspective.

Research activity that generates large amounts of data often requires computational approaches such as modelling, simulation and machine learning that enable the data to be exploited further. There is accordingly a great need for powerful ICT tools with high-performance computing capacity.

The Health Data Programme will establish ‘the Health Analysis Platform’, which is an integrated and securely distributed analysis room across different sources of health data. Some sources, such as the primary health service, require more adaptation. It is necessary to structure and be able to connect everything from historical data to real-time data for effective and secure reuse; health and personal data from public and private sources and from the individuals themselves; and geographic data, climate data and other research data from all sectors and service levels, including linear data, textual information and images. Development of and secure and efficient access to structured patient records will be of particular value to research and innovation. There is a need to harmonise Norwegian health and personal data with international standards and to present the variables in an integrated manner with good metadata. More structured data that is better harmonised with information models, coding systems and terminology is also essential. Infrastructure for secure dialogue with participants and user participation must also be ensured. To prevent national silos of secure analysis services for sensitive personal data, it is necessary to establish secure cloud services that allow cross-national data analysis.

The technology platforms TSD, HUNT Cloud and SAFE must be further developed and adapted to the Health Analysis Platform. There is a need to ensure that platforms/cloud services for personal data have sufficient storage and HPC capacity available. Steps must also be taken to enable artificial intelligence (AI), machine learning, deep neural networks and robotics on big data and pools of real world data in real time. Infrastructure for precision medicine is becoming more and more important and sought-after for research and innovation. Intelligent processing of all types of digital medical data including image diagnostics is also necessary. Human biological material and data from population surveys and large-scale research projects that hold a high international standard must be made more accessible to increase utilisation. Material and data from disease biobanks must be secured by way of tracing, safe storage and access mechanisms for secondary use. A national digital biobank should be linked to the Health Analysis Platform with access via the Health Data Service.

It is essential that all sensitive data infrastructure has integrated data protection and that trust and ethical issues are handled in accordance with the highest standards. National coordination of consent management and dialogue with participants in surveys and studies in particular are essential.

High quality clinical research is a prerequisite for developing new knowledge and applying it in clinical practice. Clinical infrastructures must be designed so that the needs addressed include those of clinical odontological research. With intensified focus on personalised medicine and access to the best forms of treatment comes greater demand and expectation among patients, next of kin and the health authorities for participation in clinical studies. More expertise and capacity are needed to facilitate early-phase studies in which new knowledge can be put to use. International cooperation and opportunities for interaction between hospitals, municipal health and care services, research and innovation circles and industry are of particular importance.

Interface with other areas

There is an increasing need for collaboration between research infrastructures, both within the area of medicine and health and across disciplinary lines. Interaction with life sciences and biotechnology, nanotechnology and advanced materials, and national subject-specific and generic e-infrastructures/data infrastructures is particularly relevant, especially to achieve the goal of better utilisation of sensitive personal data and specifically big ‘omics’ data for personalised medicine.

There is an increasing need to efficiently and securely share data across disciplines, sectors and national borders. Cooperation with and between European research infrastructures will be important, as is a well-integrated system for handling big and sensitive data. The Research Council encourages expanded cooperation and utilisation of infrastructures in all relevant fields of expertise and technology. Previous investments can be utilised in this respect to reuse resources or integrate them with existing infrastructure.

RESEARCH INFRASTRUCTURES RELATED TO MEDICINE AND HEALTH

Project	Status
Biobank Norway – A national infrastructure for biobanks and biobank related activity in Norway – National node in BBMRI	ESFRI Landmark
Helseanalyseplattformen	Under establishment/in operation
NORBRAIN – Norwegian brain initiative: a large-scale infrastructure for 21st century neuroscience	Under establishment/in operation
NorCRIN – Norwegian Clinical Research Infrastructure Network	ESFRI Landmark
NorMIT – Norwegian centre for minimally invasive image guided therapy and medical technologies	Under establishment/in operation
NORMOLIM – Norwegian Molecular Imaging Infrastructure – National node in Euro-Bioimaging	ESFRI Landmark
PCRN – The Norwegian Primary Care Research Network	Under establishment/in operation

OTHER RESEARCH INFRASTRUCTURES ON THE ROADMAP RELEVANT TO MEDICINE AND HEALTH

Project	Status
E-INFRA ved UNINETT Sigma 2 – a national e-Infrastrucure for science	Under establishment/in operation
ELIXIR.NO – A Norwegian ELIXIR Node	ESFRI Landmark
ESS-Lund – European Spallation Source	ESFRI Landmark
Microdata.no – Microdata Platform for Norwegian and International Research and Analysis	Under establishment/in operation
NALMIN – Norwegian Advanced Light Microscopy Imaging Network – National node in Euro-Bioimaging	ESFRI Landmark
NAPI – Network of Advanced Proteomics Infrastructure	Under establishment/in operation
NorSeq – National Consortium for Sequencing and Personalized Medicine	Under establishment/in operation
NNP – The Norwegian NMR Platform	Under establishment/in operation
NOR-OPENSCREEN – The Norwegian EU-OPENSCREEN node	ESFRI Landmark