Biobanking in the Public Health Context. Liisa-Maria Voipio-Pulkki Girector General, CMO

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1 Biobanking in the Public Health Context Liisa-Maria Voipio-Pulkki Girector General, CMO

2 Residence-based, universal and equal right The public authorities shall guarantee for everyone adequate social, health and medical services and promote the health of the population. The Constitution of Finland (731/99), 19 Public Health is defined by WHO as the art and science of preventing disease, prolonging life and promoting health through the organized efforts of society

3 Ministero della Salute Rogowski et al, Nature Reviews in Genetics, 2009

4 Council Conclusions on PM (2015/C 421/03) 4

5 KEY DRIVER THE BIOBANK ACT OF 2013 WITH THREE IMPORTANT PRINCIPLES Regulation by national authorities Protection of donors rights Promotion of research and R&D professionality, quality standards informed consent; optout procedure for retrospective samples privacy protection and sample pseudoymization donors right to know the usage of samples broad consent permission to link biobank specimens with information from hospital databases and national registries all raw data resulting from the biobank material will return to the biobank for future biobank research purposes YOUR T E S T B E D F O R N E X T G E N E R A T I O N R E A S E A R C H & I N N O V A T I O N

6 Health Sector Growth Strategy sets the direction for developing the ecosystem

7 Ecosystem biobanks and Genome Centre citizens professionals entreprises 7 researchers Helena Raula

8 NATIONAL REGISTERS YOUR T E S T B E D F O R N E X T G E N E R A T I O N R E A S E A R C H & I N N O V A T I O N

9 HL7 Finland founded Timeline of Finnish Healthcare ICT Standardization for Interoperability Experimental legislation on seamless service chains National health project starts Regional hospital information systems starting National core datasets defined Legislation about the national Kanta system and supporting services Kela appointed as a national actor in national healthcare ICT services Finnish IHE SIG founded eprescription service production phase incl. My Kanta pages service for citizens -> epsos work started in FIN Patient Data Repository production phase -> All public healthcare uses the Patient Data Repository IHE Finland founded All private healthcare uses the Patient Data Repository First national HL7 v2 profiles ICD-10 adopted in Finland PikaXML definition for electronic referral process Finnish profile for CDA R1 National code server founded Finnish basic profile for CDA R2 CDA R2 becomes ANSI standard Ministry decision on CDA R2 for national standard for structured dataset Finnish profile for HL7 V3 messaging National Kanta architecture defined National pharmaceutical database founded HL7 Medical records specifications for eprescription and Patient Data Repository National imaging architecture defined Oral and dental healthcare structured documentation specifications epsos national contact point in production Etunimi Sukunimi First FHIR pilots

10 Secondary use of health and social data Use of materials RE- SEARCH AND STATISTICS DEVELOP- MENT AND INNOVA- TIONS EDU- CATION PLANNING AND SURVEYS INFOR- MATION MANAGE -MENT STEER- ING AND OVER- SIGHT PERMIT AUTHORITY AND SERVICE OPERATOR Handling of materials SEARCH FOR DATA: PERMITS, DATA PROTECTION DATA TRANSFERS: TRANSFER, COMBINATION, PROTECTION Materials BIOBANKS, GENOME CENTRE KANTA PORTAL, MY KANTA (OMAKANTA) NATIONAL REGISTERS AT NATIONAL INSTITUTE FOR HEALTH AND WELFARE HEALTH AND SOCIAL SERVICE STATISTICS SOCIAL- ECONOMIC DATA OPERATIVE SYSTEMS WITHIN HEALTHCARE AND SOCIAL WELFARE

11 Use of Materials and Data Research and Education Development and Innovations Statistics, Information Management Governance, Steering and Oversight (by authorities) Public health planning and surveys (by authorities) Clinical decision making - an ambitious goal! Helena Raula

12 HOW TO MARKET THE FINNISH LIFE SCIENCES ECOSYSTEM? HOW TO BUILD SUSTAINABLE R&D PARTNER- SHIPS? 12

13 European Commission on Digital Health Citizens' needs are at the centre of data-driven healthcare innovation This cooperation will build upon existing initiatives in genomics and personalised medicine. Benefits of coordination across national initiatives and biobanks include accessing data from different phenotypes at scale and enhancing technology and infrastructure capacity. Digital Day 2 Declarations of Cooperation and Communication on Transformation of Health and Care in the Digital Single Market

14 WHO 2007: Everybody's Business. Strengthening health systems to improve health outcomes

15 THANK YOU stm.fi/yksilollistetty-laaketiede #FinbbSuomi #genomikeskus #syöpäkeskusfican #kansallinenneurokeskus 3/58d76568ca