The new deal of data in the data-driven person centric-care

Transcription

1 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

2 600+ Health and Life science Companies Research Institutes University of Oulu & Oulu University of Applied Sciences, VTT University Hospital OULU FINLAND inhabitants City of Oulu Health & Social Care, Economic Development 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.

3 Digital Innovation Hub Nordic Test Beds Coordination of 5 testbeds ( ) International and national networks and projects EU Urban agenda in digital transition Coordinator FinCCHTA National Coordination of HTA OuluHealth Labs Innovation platforms Digital Health Revolution National coordination of health data management in 4P medicine ( ) European Connected Health Alliance Founding Partner 6Genesis Wireless communication flagship Companies 640 in Health & Life Science 450 in ICT DigiHealth HUB National Knowledge network Personalized Medicine partnership (EU S3 Platform) MEDigi National coordination of Digital Medical School Education INKA National coordination of future health ( ) EIP-AHA 3* reference site RSCN executive board member Global network of MyData.org Founding partner Scientific expertise Wireless communication 5G & 6G Security Machine vision Printed intelligence Population health research (NFBC) Medical imaging

4 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 Lisää tarvittaessa alatunnisteteksti Oulun yliopisto

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6 Paradigm change in healthcare needs new data flow models Digital care paths Seamless service models Reactive healthcare Proactive care From medical data to behavior data and omics Reality mining of digital data Novel predictive analytics 4P Medicine eself-services Smart symptom check on-line AI supported DSS Virtual care model

7 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

8 New deal of data -two examples Oulun yliopisto

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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

11 Grant Agreement No MIDAS Pilots and MyData potential Basque Pilot: Child overweight and obesity prevention Potential Northern Ireland Pilot : Looked after Children Potential Potential Irish Pilot: Healthy Ireland and Diabetes Potential Finnish Pilot: Preventive mental health and substance abuse of young This project is funded by the European Union

12 Grant Agreement No MIDAS Pilots and MyData potential Basque Pilot Shopping data, Geolocation data Northern Ireland Social activity, Social media, 3rd party data 3rd party apps, Self management platforms Irish Pilot Social activity, NFBC, Self management platforms, Civic engagement Finnish Pilot This project is funded by the European Union

13 Balance between health data protection and exploitation Data exploitation Data protection

14 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

15 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

16 DigiHealth Knowledge HUB A competence network for a joint exploitation of resources on the digital health transformation and health data capacity building in EU OULU 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

17 Focus areas in digital health transition NATIONAL AND INTERNATIONAL COLLAORATION EFFICIENT AND TRUSTED USAGE AND MANAGEMENT OF HEALTH DATA IMPACT OF DigiHe 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

18 Strategic partnerships of digital transition in EU Personalized Medicine Medical Technology Wireless ICT* THEMATIC PARTNERSHIPS Interregional investment DIGITAL TRANSITION PARTNERSHIP DIGITAL INNOVATION HUBS (DIH) Innovation expertise SuperIoT (Analytic+) PrintoCent 5G Test Network Artic Drone OuluHealth **(inc. DigiHealth Hub) City as a platform *Status pending EU Urban agenda **

19 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

20 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