NordForsk Board, former chair Biocenter Finland, director Nordic Health Cooperation Facilitated by NordForsk Marja Makarow NordForsk Board, former chair Biocenter Finland, director NORDIC COOPERATION REGARDING HIGHLY SPECIALIZED TREATMENT AND CLINICAL TRIALS Hämeenkylän kartano, Vantaa 26 Augst 2016

Nordic region and cooperation Five countries and three autonomous areas Eight time zones, 26 million people, many languages, 10-12th largest economy globally Nordic political cooperation Nordic Council (1952) Cooperation platform for parliamentarians Nordic Council of Ministers (NCM) (1971) Official governmental co-operation body Nordic research cooperation NordForsk founded by NCM (2005) To enhance quality, impact and cost-efficiency of Nordic research and research infrastructure collaboration Five Nordic countries: Denmark, Finland, Iceland, Norway and Sweden, and three autonomous areas: Faroe Islands, Greenland and Åland. Basics: 8 time zones, 26 million people, 12th largest economy globally. Individually the Nordic countries are small in a global setting, but together the countries constitute a substantial knowledge society and economic force 26 Million inhabitants Long tradition of Nordic political cooperation. The Nordic Council (1952) is the cooperation between parliamentarians. The Nordic Council of Ministers (NCM) (1971) is the official governmental co-operation. NordForsk was founded by the NCM in 2005

Why Nordic research collaboration? Contribute to managing grand societal challenges Build on national efforts, pool resources Assemble excellent researchers/communities, build critical mass Deliver Nordic added value Mobilise/qualify Nordic research communities for participation in EU programmes

About NordForsk Provides funding for Nordic cross-border research collaboration Annual budget From NCM: 120 MDKK/year From national research funding organisations: 320 MNOK (2015) varies according to which programs each country participates Funding concept At lease 3 Nordic countries Fundig collaboration between ntl research councils, NordForsk and NCM Common pot Joint international evaluation of proposal, the best are funded The organisation is a political instrument for the Nordic Council of Ministers with the aim of achieving Nordic added value through research cooperation. NordForsk’s role is to function as a platform facilitating cross-border research cooperation where the national funding agencies and the university sector contribute with funding to joint Nordic research and research infrastructure programmes. NordForsk’s unique feature is that it facilitates Nordic cooperation using a common pot. All of NordForsk’s initiatives are based on national priorities, and must be of high scientific quality. NordForsk is a platform for joint Nordic research and research infrastructure cooperation. The organisation was established in 2005 by the Nordic Council of Ministers in order to strengthen the Nordic research and Innovation Area. NordForsk´s mandate is to facilitate, i.e. identify and respond to strategic priorities for Nordic research cooperation, and thereby create Nordic added value. NordForsk´s role as a facilitator involves consultations with Nordic funding agencies and the Nordic University Association regarding priorities for joint Nordic actions and possibilities for co-funding of research and research infrastructure. NordForsk has its headquarters in Oslo. Nordic Innovation and Nordic Energy Research, located at the same site as NordForsk, also contribute to strengthening the Nordic Research and Innovation Area in cooperation with NordForsk. Funding: 120 MDKK/Year + 2/3 principle – more on funding later. Total yearly funding of projects in 2015: 323 MNOK. Has risen from 135 MNOK in 2007. NordForsk provides funding for cooperation within all fields of research. Normally projects involve cooperation between at least three Nordic countries or autonomous areas. Grants are awarded on the basis of open calls for proposals and peer review procedures. Basic funding from the Nordic Council of Ministers and additional funding by stakeholders, especially the Research Councils in the different countries. Main partners: Nordic national research financing bodies who co- fund the activities

Cross-border research collaboration Ongoing research programmes Nordic Programme on Health and Welfare Education for Tomorrow Green Growth Research and Innovation Programme Joint Nordic Neutron Science Programme Nordic Bioeconomy Programme Nordic Societal Security Programme Responsible Development of the Arctic Gender in the Nordic Research and Innovation Area NordForsk funds research within all fields and encourages cross-sectoral research Programme funding: Education for Tomorrow 76 MNOK NordForsk, Nordic Council of Ministers, Denmark, Finland, Norway, Sweden, Iceland Gender in the Nordic Research and Innovation Area 42 MNOK NordForsk, Finland, Iceland, Norway, Sweden Green Growth Research and Innovation Programme 73 MNOK TRI, NordForsk, Nordic Innovation, Nordic Energy Research Joint Nordic Neutron Science Programme 65 MNOK. NordForsk, Denmark, Norway, Sweden Nordic Bioeconomy Programme 93 MNOK. NordForsk, Finland, Norway, Sweden, Iceland Nordic Programme on Health and Welfare 146 MNOK NordForsk, NCM, Denmark, Finland, Iceland, Norway, Sweden Nordic Societal Security Programme 115 MNOK NordForsk, Finland, Iceland, Netherlands, Norway, Sweden, United Kingdom Responsible Development of the Arctic 112 MNOK. NordForsk, NCM, Denmark, Finland, Greenland, Iceland, Norway, Sweden Top-level Research Initiative (TRI) Ca. 400 MNOK Total, ca. 200 MNOK for NordForsk managed programmes.

All Nordic countries participate Nordic Programme on Health and Welfare All Nordic countries participate Funding 12 M NOK from NCM 127 M NOK from NF 130 M NOK national funds

Aims of the Programme Creating new knowledge about the underlying causes of uneven distribution of health and welfare; Exploring user-driven and open innovation opportunities in the health and welfare sector; Enhancing use of Nordic population-based registries and biobanks and large data sets;

Research themes for 2014-2016 Calls concluded, research initiated Distribution of health and welfare Budget 140 MNOK, 5 projects each 25-30 MNOK User-driven innovation within health and welfare Budget 11 MNOK, 2 projects each 5-6 MNOK Nordic research infrastructure pilots in health and welfare by combining socioeconomic- and health-related registers Budget 40 MNOK, 4 projects each 10 MNOK Call ongoing Register-based research projects CALL OPEN NOW - deadline 5 October Budget 67 MNOK, projects max 10 MNOK

Funded projects on distribution of health and welfare Coming of Age in Exile (CAGE) - Health and Socio-Economic Inequities in Young Refugees in the Nordic Welfare Societies, Project leader: Allan Krasnik, Denmark Working hours, health, well-being and participation in working life, Project leader: Mikko Härmä, Finland Understanding the Link between Air Pollution and Distribution of Related Health Impacts and Welfare in the Nordic Countries (NordicWelfAir), Project leader: Jørgen Brandt, Denmark Psychosocial work environment and healthy ageing, Project leader: Mika Kivimäki, Finland Social Inequalities in Ageing (SIA); Health, Care and Institutional Reforms in the Nordic Welfare Model, Project leader: Johan Fritzell, Sweden

Funded projects on user-driven innovation within health and welfare ActivABLES: Tangible Interaction to Support Effective and Usable Stroke Rehabilitation at Home Project leader: Associate Professor Charlotte Magnusson, Lund University, Sweden Symptom monitoring after hospitalisation in patients with advanced heart failure - a Nordic-Baltic study Project leader: Professor Anna Strömberg, Linköping University, Sweden

Funded Nordic Register Pilots A Nordic Rheumatology Register Pilot to facilitate collaborative studies based on linkages of clinical data with national health. Project leader: Professor Johan Askling, Karolinska Institutet, Sweden Adult Life after Childhood Cancer in Scandinavia (ALiCCS): Socioeconomic consequences of long-term survival. Project leader: Jeanette Falck, The Danish Cancer Society, Denmark Contingent Life Courses (C-LIFE). Project leader: Professor Espen Dahl, Oslo and Akershus University College of Applied Sciences, Norway Nordic Occupational Register – a tool for estimation of the potential of workplace and population level interventions. Project leader: Svetlana Solovieva, Finnish Institute of Occupational Health, Finland

Themes based on Recommendations from the NORIA- net fpr Registers and Biobanks (1) NordForsk should provide a cooperation platform for the Nordic bureaus of statistics, national health register institutes and other register-hosting bodies. This platform should facilitate research support operations in order to increase joint Nordic research. Discussion platforms for different stakeholders should also be supported, when relevant. NordForsk should investigate possibilities for developing procedures for mutual recognition of ethical review permissions between the Nordic countries, including models for informed consent. This will require political consideration and should be carried out in dialogue with the Nordic Council of Ministers. NordForsk should actively follow, and, if necessary, influence the ongoing revision of European legislation targeting data protection, clinical trials and copyright legislation, in particular in relation to data sharing and with a view to drawing the full benefit of new research technologies, such as text and data mining. This may require political consideration and follow-up by the Nordic Council of Ministers.

Recommendations from the NORIA-net(2) NordForsk should establish a small strategic expert group responsible for these processes, initially for the 2014–2016 period. The group should possess the relevant expertise and have the support of relevant Nordic stakeholder groups. It should report to the NordForsk Board. As a follow-up to recommendations one to three, NordForsk should establish a research programme to pilot the joint Nordic use of registers. The programme should fund Nordic pilot projects using joint Nordic register data sources within the field of health and wellbeing. The full set of recommendations are documented in the report by the Noria-net. Several of the recommendations have ben implemented

Recent developent initiated by NCM NCM asked in 2016 NordForsk to promote Nordic collaboration in biobanking, register-based research, clinical multicenter trials, eScience and OA to data Prof Juni Palmgren (KI) asked by NF to compile an analysis ad recommendations, which she captured in her report: “Nordic Biobanks and Registers - a Basis for Innovative Research on Health and Welfare” The report highlights immediate needs for further cross-border activities to make use of the Nordic registers, biobanks and clinical studies to their full potential. Serves as knowledge base for the NCM and stakeholder

Nordic Trial Alliance NTA Creating a Nordic clinical research infrastructure Aim To strengthen clinical research Objective To contribute to sustainable Nordic welfare Facts An initiative from the Nordic Council of Ministries Part of Funded by Nordic Council of Ministries and NordForsk Hosted by NordForsk Three year pilot project 2013 – 2016 1.5 MNOK from NordForsk and 6.5 MDKK from NMR over three years http://nta.nordforsk.org

Conflift of Interest statement of Marja Makarow No Conflicts of Interest

Thank you for your attention! www.nordforsk.org marja.makarow@helsinki.fi