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29.5.2018 1
Biobanking in
the Public
Health Context
Liisa-Maria Voipio-Pulkki
Girector General, CMO
29.5.2018
Residence-based, universal and equal right
29.5.2018 2
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”
Ministero della Salute
Rogowski et al, Nature Reviews in Genetics, 2009
4
Council Conclusions on PM (2015/C 421/03)
Y O U R 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
Regulation by national authorities
• professionality, quality standards
KEY DRIVER THE BIOBANK ACT OF 2013 WITH THREE IMPORTANT PRINCIPLES
Protection of donors’ rights • informed consent; optout procedure for retrospective samples • privacy protection and sample pseudoymization • donors right to know the usage of samples
Promotion of research and R&D • 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
Health Sector Growth Strategy sets the direction for developing the ecosystem
29.5.2018 Helena Raula 7
Ecosystem
professionals entreprises
citizens
biobanks and Genome Centre
researchers
Y O U R 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
NATIONAL REGISTERS
Etunimi Sukunimi 9 29.5.2018
Timeline of Finnish Healthcare ICT Standardization for Interoperability
First
national HL7 v2
profiles
1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016
HL7 Finland
founded
Regional
hospital
information
systems
starting
Legislation about
the national
Kanta system and
supporting
services
epSOS work
started in FIN
National
imaging
architecture
defined
ePrescription
service production
phase incl.
My Kanta pages
service for citizens ->
Patient Data
Repository
production
phase ->
Finnish
basic profile
for CDA R2
Finnish profile
for CDA R1
Finnish
IHE SIG
founded
IHE Finland
founded
Finnish profile
for HL7 V3
messaging
HL7 Medical records
specifications for
ePrescription and
Patient Data Repository
All public healthcare
uses the Patient Data
Repository
ICD-10
adopted in
Finland National
code server
founded
National
Kanta
architecture
defined
Experimental
legislation on
seamless service
chains
Oral and dental
healthcare
structured
documentation
specifications
National health
project starts
Ministry decision on
CDA R2 for national
standard for
structured dataset
Kela appointed
as a national
actor in national
healthcare
ICT services
CDA R2
becomes
ANSI
standard
PikaXML
definition
for electronic
referral process
National
pharmaceutical
database
founded
1997 1996 1995
epSOS national
contact point
in production
National core
datasets
defined
First FHIR
pilots
All private
healthcare
uses the
Patient Data
Repository
BIOBANKS,
GENOME
CENTRE
KANTA
PORTAL,
MY KANTA
(OMAKANTA)
RE-
SEARCH
AND
STATISTICS
DEVELOP-
MENT
AND
INNOVA-
TIONS
EDU-
CATION
STEER-
ING AND
OVER-
SIGHT
PLANNING
AND
SURVEYS
NATIONAL REGISTERS AT
NATIONAL INSTITUTE FOR HEALTH AND
WELFARE
HEALTH AND
SOCIAL
SERVICE
STATISTICS
SOCIAL-
ECONOMIC DATA
SEARCH FOR
DATA: PERMITS,
DATA PROTECTION
DATA TRANSFERS: TRANSFER,
COMBINATION,
PROTECTION
INFOR-
MATION
MANAGE
-MENT
PERMIT AUTHORITY AND SERVICE OPERATOR
OPERATIVE SYSTEMS WITHIN HEALTHCARE AND SOCIAL WELFARE
Use of
materials
Handling of
materials
Materials
Secondary use of health and social data
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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!
12
HOW TO
MARKET THE
FINNISH LIFE
SCIENCES
ECOSYSTEM?
HOW TO BUILD
SUSTAINABLE
R&D PARTNER-
SHIPS?
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 10.4.2018 and “Communication on Transformation of Health and Care in the Digital Single Market” 25.4.2018.
European Commission on Digital Health
WHO 2007: Everybody's’ Business. Strengthening health systems to improve health outcomes
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stm.fi/yksilollistetty-laaketiede
#FinbbSuomi
#genomikeskus
#syöpäkeskusFICAN
#kansallinenneurokeskus
https://vimeo.com/oms/review/27125449
3/58d76568ca
THANK YOU