The new deal of data in the data-driven
person centric-care
Maritta Perälä-Heape, Professor of practice, University of Oulu, Faculty of Medicine,
Center for health and technology, Oulu, Finland
OuluHealth ecosystem
the WHO Symposium on the future of digital health systems in the European Region
OULU FINLAND
600+ Health and Life science Companies
Research Institutes
University of Oulu & Oulu University of Applied Sciences,
VTT
University Hospital
City of Oulu Health & Social Care,
Economic Development
250 000 inhabitants
OuluHealth is one of the leading digital health
innovation ecosystems in Europe
Members of the OuluHealth ecosystem represent the whole
spectrum of health and social care, including specialised medical
care, primary health and social care, health and wellbeing industry
and commerce, health technology research and education, and
citizens.
INKA National coordination of
future health (2014-2017)
Digital Health Revolution National coordination of health
data management in 4P medicine
(2014-2017)
6Genesis Wireless communication
flagship
Scientific expertise
Wireless communication Machine vision
Medical imaging
Population health research (NFBC)
International and national networks and projects
Digital Innovation Hub
European Connected Health Alliance
Founding Partner
OuluHealth Labs Innovation platforms
DigiHealth HUB National Knowledge
network
Global network of MyData.org Founding partner
5G & 6G Security
MEDigi National coordination of
Digital Medical School Education
FinCCHTA National Coordination
of HTA
Nordic Test Beds Coordination of
5 testbeds (2015-2018)
Printed intelligence
EU Urban agenda in digital transition
Coordinator
Companies 640 in Health & Life Science
450 in ICT
Personalized Medicine partnership
(EU S3 Platform)
EIP-AHA 3* reference site
RSCN executive board member
Oulun yliopisto
EU strategies and health data:
- Digital single Market
Free flow data, secure access and exchange of health
data
- European Data Economy
Data is an essential resource for economic growth
- Digitising European Industry
The Internet of Things (IoT), cloud computing, big data and data
analytics, robotics and 3D printing
- EU GDPR
- Individual has right to data portability and right to get own
data in a commonly used electric format
8.3.2019 Lisää tarvittaessa alatunnisteteksti 4
Paradigm change in healthcare needs new data flow
models
• Digital care paths
• Seamless service models
Reactive healthcare
•From medical data to behavior data and omics •Reality mining of digital data
•Novel predictive analytics
•4P Medicine
Proactive care •eSelf-services
•Smart symptom check on-line
•AI supported DSS
Virtual care model
Oulun yliopisto
Data challenges Access to data
Data sharing practices
Data protection rules in practice
Inclarity of regulation
Healthcare data not in exploitable form
Rich data processing
Ownership of (user generated) health
data
Lack of data governace skills
The use and reuse of data
Health apps’ data flows
”Stand alone” online health platforms
……
Oulun yliopisto
New deal of data
-two examples 8.3.2019 8
www.digitalhealthrevolution.fi
8.3.2019 10
MYDATA PRINCIPLES
• to make sure individuals are in a position to know and control their personal data, but also to gain personal knowledge from them and to claim their share of their benefits.
• Mydata Declaration aim at restoring balance and moving towards a human-centric vision of personal data and digital society whose foundations are:
– Trust and confidence, that rest on balanced and fair relationships between people, as well as between people and organisations;
– Self-determination, that is achieved, not only by legal protection, but also by proactive actions to share the power of data with individuals;
– Maximising the collective benefits of personal data, by fairly sharing them between organisations, individuals and society.
@MIDASProjectEU http://www.midasproject.eu
Grant Agreement No. 727721
This project is funded by the European Union
MIDAS Pilots and MyData potential
Basque Pilot: ”Child overweight and
obesity prevention”
Northern Ireland Pilot : ”Looked after Children”
Irish Pilot: ”Healthy Ireland and
Diabetes”
Finnish Pilot: “Preventive mental health and
substance abuse of young”
Potential
Potential
Potential
Potential
@MIDASProjectEU http://www.midasproject.eu
Grant Agreement No. 727721
This project is funded by the European Union
MIDAS Pilots and MyData potential
Basque Pilot
Northern Ireland
Irish Pilot
Finnish Pilot
Social activity, Social media, 3rd party data
Social activity, NFBC,
Self management platforms, Civic engagement
Shopping data, Geolocation data
3rd party apps, Self management
platforms
Data exploitation
Data protection
Balance between health data protection and exploitation
• New data based service concepts for professionals
• Personalized medicine data model
• Real time data for research purposes
• Breach of data contract
• Misinterpretation of ownership of the data
• Health data and patient profiles as currency
• Repurposing health data
Active policy dialogue needed for the data led care
• There is a need to develop a joint strategic action plan for person centric data-led health and care with recommendations at European and Member States’ level, that will promote enabling factors and building blocks, for data-led innovations and upscale deployment
• Conceptual clarity is needed in data governance: – Clarity in big data knowledge economy – Clarity in citizen generated data – Clarity in data on-line platforms – Clarity in GDPR implementation in EU member states New collaborative structures are enhancing the development of a joint action plan – Research and innovation HUBs – Digital innovation HUBs – Thematic partnerships
OULU
DigiHealth Knowledge HUB
• A competence network for a joint exploitation of
resources on the digital health transformation
and health data capacity building in EU
• To create strategic partnerships in EU • to increase the expertise and the capability in the
health data management and data modelling in
preventive medicine
• To speed up the data intensive business growth
• To share best practices and knowledge with peer
groups regionally, nationally and globally
Focus areas in digital health transition
DigiHe EFFICIENT AND TRUSTED USAGE AND
MANAGEMENT OF
HEALTH DATA
IMPACT OF IMPLEMENTATION OF
DIGITAL HEALTH SOLUTIONS
EFFICIENT EXPLOITATION OF EMERGING
TECHNOLOGIES (AI, BIG DATA) IN MEDICAL
APPLICATIONS
DEVELOPEMENT OF DIGIHEALTH HUB CONCEPT Knowledge network co-operation models and services
NATIONAL AND INTERNATIONAL COLLAORATION
Strategic partnerships of digital transition in EU
THEMATIC PARTNERSHIPS
DIGITAL INNOVATION HUBS (DIH)
SuperIoT (Analytic+) PrintoCent 5G Test Network Artic Drone OuluHealth **(inc. DigiHealth Hub)
Personalized Medicine Medical Technology
Wireless ICT*
EU Urban agenda
Innovation expertise Interregional investment
DIGITAL TRANSITION
PARTNERSHIP
City as a platform
*Status pending http://s3platform.jrc.ec.europa.eu/digital-innovation-hubs-tool/-/dih/6365/view **
Collaboration opportunities on the preventive medicine
program in Europe Targets:
to save in healthcare spending by making treatments better targeted to get more evidence in the health risk management to move from population research to individual interventions and new data-based
person centric service creation to increase health and wellness of EU citizens by using personal data (genomics,
metabolomics, health and wellness data) and accelerate healthcare breakthroughs to shape new world of sharing by giving citizens access to a breakthrough digital
biomarker platform for smartphones and smartwatches to produce and share knowledge on how the citizens, healthcare professionals and
data analysts can be involved in development of predictive analytics within the framework set by legislation, data privacy and data challenges
Thank You!
Maritta Perälä-Heape,
Professor of practice, University of Oulu, Faculty of Medicine,
Center for health and technology, Oulu, Finland
maritta.perala-heape(at)oulu.fi
+358406734159
https://www.oulu.fi/cht/
