future directions for personalised health in the nordics ... · • the nordic council (1952) is...

Future directions for personalised healthin the Nordics and Europe

Jan-Ingvar Jönsson

Secretary General at the Swedish Research Council

Helsinki, November 19, 2019

The International Consortium forPersonalised Medicine

Jan-Ingvar Jönsson

chair ICPerMed and NOS-M



ICPerMed – An International Consortium

• More than 40 European and international partners

• Representing ministries, funding agencies and

the European Commission (EC)

• ICPerMed started in November 2016

Aim: To coordinate and foster research to

develop and evaluate personalised

medicine approaches


Characterisation of individuals’ phenotypes and genotypes (e.g. molecular

profiling, medical imaging, lifestyle data) for tailoring the right therapeutic

strategy for the right person at the right time, and/or to determine the

predisposition to disease and/or to deliver timely

and targeted prevention".

According to: Horizon2020 and the European Council Conclusions on personalised medicine for patients (2015/C 421/03)

Personalised Medicine (PM) – a definition


• Establish ICPerMed members as global leaders in personalised

medicine research

• Support the personalised medicine science base through a

coordinated approach to research

• Support research to investigate the benefits of personalised

medicine to citizens and healthcare systems

• Pave the way for personalised medicine approaches for citizens

ICPerMed Vision Statement

Research as driver of personalised medicine


• Establish ICPerMed members as global leaders in personalised

medicine research

• Support the personalised medicine science base through a

coordinated approach to research

• Support research to investigate the benefits of personalised

medicine to citizens and healthcare systems

• Pave the way for personalised medicine approaches for citizens

ICPerMed Vision Statement

Platform to support Coordination, Sharing, and CollaborationStrategies, Funding, Information, Best Practices


ICPerMed – Coordinating PM research

Provides a tool to coordinate and augment the activities of individual members.

ICPerMed Action Plan

A) Research activities:

• Data

• Technologies, Methods and Processes

• People

• Cross-Cutting

B) Support activities:

• Structures

• Methods and Processes

• People


• Future vision of ICPerMed on personalised medicine

research and implementation by 2030

“How can personalised approaches pave the way to

next-generation medicine”

• Based on consultation of European and international

experts, covering the entire range of relevant sectors

and professional backgrounds

• Available for download on the ICPerMed website

ICPerMed Vision Paper

Perspective 1: Informed, empowered, engaged, and responsible citizensPerspective 2: Informed, empowered, engaged, and responsible health providers

Perspective 3: Healthcare systems that enable personally tailored health promotion, prevention, diagnosis, and treatment for the benefit of citizens and patientsPerspective 4: Availability and optimal use of health-related information for

optimised treatment, care, prevention, and researchPerspective 5: Economic value by establishing the next generation of medicine

ICPerMed Vision 2030

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ICPerMed Vision for 2030 – five perspectives

Perspective 1: Informed, empowered, engaged and responsible citizens

• Health-related data is controlled by the citizen, including input, monitoring and access;

• Easily accessible, reliable, and understandable sources of health information are available.

Perspective 2: Informed, empowered, engaged and responsible health providers

• The safe, responsible, and optimal use of health information and research results for PM is routine in the clinic.

• PM requires clinical decisions by multidisciplinary teams that integrate novel health-related professions.

• The education of healthcare professionals has adopted the interdisciplinary aspects of PM.

• Clinicians and researchers work closely to support the rapid development and implementation of PM solutions.


Perspective 3: Healthcare systems enable personally tailored and optimised health promotion, prevention, diagnosis and treatment for the benefit of patients

• Equitable access to PM services for all citizens is a reality.

• PM services are optimised in terms of effectiveness and equity.

• Allocation of resources within healthcare systems is consistent with societal values.

• Secure health data flow from citizens and healthcare systems to regulatory authorities and research is in place.


Perspective 4: Available health related information for optimised treatment, care, prevention and research

• Personal data in Electronic Health Records (EHRs) is used by healthcare providers and researchers for more efficient PM.

• Harmonised solutions to ensure data privacy, safety, and security are applied in health-data management.

• Optimised treatment and prevention based on personal data benefit citizens, while minimising costs and risks.


Perspective 5: Economic value by establishing the next generation of medicine

• A reasonable balance between investment, profit, and shared-benefit for the citizen is a reality for PM.

• Appropriate business concepts and models are in place for PM.

• Telemedicine and mobile solutions promote PM and are of economic value.

• New jobs in healthcare systems are created.


Build trust of all stakeholders in research, within health care systems, health policy decision-makers, and society


ICPerMed “family“ and related initiatives

Nordic strengths in health research

• Long tradition of Nordic political cooperation:

• The Nordic Council (1952) is the cooperation between

Nordic parliamentarians.

• The Nordic Council of Ministers (NCM) (1971)

is the official governmental co-operation.

• NordForsk was founded by the NCM in 2005.

• NOS-M (Medical Research Councils) was established in 1968.

Nordic strengths in health research

o Similar health care systems available to all citizens

o Publicly funded universities

o Extraordinary research infrastructures (registers and biobanks)

o Long history of Nordic cooperation between scientists ando political stakeholders

o Health research is high on the political agenda

o Citizens have trust in research; high acceptance to join clinical trials

o Established research and research infrastructure networks (e.g. cancer registries, biobanks, precision medicine, epidemiology)

A Nordic goldmine for research

o The Nordic countries have a unique knowledge resource in its longitudinal disease and population registers

o The Personal Identification Number (PIN) allows linkage to biobanks and other databases

o Nordic data allows comparisons between countries or analysis at the Nordic level

o Population of 27 million - analysis at Nordic level will increase the possibility to findassociations for rare diagnoses and events

o Could be used to find solutions to societal and public health challenges, evidence-based decisions, as well as to follow up political incentives

Nordic Common Strengths and Future Potential in the Field of

Personalised Medicine

NOS-M Workshop 2016

Conclusions from the Workshop

- Personalised medicine may lead to major improvements in health care, but there are a number of major ethical, societaland legal challenges that need to be tackled before this can be accomplished.

- Policy directives need to be aligned at the Nordic level.

- There are several Nordic advantages, including a number ofunique registers, cohorts and biobanks; high qualityepidemiology and clinical research; public-funded health careand a population that is generally very positive towardsparticipating in research.

- Rare diseases and cancer are appropriate focus areas for Nordic cooperation.

Research and Innovation

#HorizonEU

European Partnerships

New approach to European partnerships

New generation of objective-driven and more ambitious partnerships in

support of agreed EU policy objectives

Key features

▪ Simple architecture and toolbox

▪ Common set of criteria

▪ Coherent life-cycle approach

▪ Strategic orientation

Co

-pro

gra

mm

ed Based on

Memoranda of Understanding / contractual arrangements; implemented independently by the partners and by Horizon Europe

Co

-fu

nd

ed Based on a joint

programme agreed by partners; commitment of partners for financial and in-kind contributions & financial contribution by Horizon Europe

Ins

titu

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ed Based on long-term

dimension and need for high integration; partnerships based on Articles 185 / 187 of TFEU and the EIT-Regulation supported by Horizon Europe

Portfolio of candidates for European Partnerships (46)

HEALTH

EU-Africa Global Health

Innovative Health Initiative

Chemicals Risk Assessment

Fostering an ERA for Health research

Large-scale innovation and

transformation of health systems in a

digital and ageing society

Pre-clinical / clinical health research

Personalised Medicine

Rare Diseases

AMR One Health

DIGITAL, INDUSTRY AND SPACE

High Performance Computing

Key Digital Technologies

Smart Networks and Services

AI, data and robotics

Photonics Europe

Clean Steel - Low Carbon Steelmaking

European Metrology

Made in Europe

Carbon Neutral and Circular Industry

Global competitive space systems

CLIMATE, ENERGY AND MOBILITY

Transforming Europe's rail system

Integrated Air Traffic Management

Clean Aviation

Clean Hydrogen

Built environment and construction

Towards zero-emission road transport

Mobility and Safety for Automated Road Transport

Batteries

Clean Energy Transition

FOOD, BIOECONOMY, NATURAL RESOURCES, AGRICULTURE AND

ENVIRONMENT

Accelerating farming systems transition

Animal health: Fighting infectious diseases

Environmental Observations for a sustainable EU agriculture

Rescuing biodiversity to safeguard life on Earth

A climate neutral, sustainable and productive Blue Economy

Safe and Sustainable Food System for People, Planet & Climate

Circular bio-based Europe

Water4All: Water security for the planet

PILLAR III AND

CROSS-PILLAR

EIT Climate KIC

EIT Health

EIT Manufacturing

EIT Food

EIT InnoEnergy

EIT Manufacturing

EIT Raw Materials

EIT Digital

EIT Urban Mobility

Innovative SMEs

European Open

Science Could

(EOSC)

Thank you for listening !

Mail: [email protected]

Internet: www.icpermed.eu

mailto:[email protected]

http://www.icpermed.eu/

future directions for personalised health in the nordics ... · • the nordic council (1952) is...

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