@ Speaker twitter handle
Enabling the Secondary Use of Social and Health Care Data – Implementig GDPR
Hannu Hämäläinen, Senior Advisor, Finnish Innovation Fund - SITRA
5 key facts about Sitra
1. A gift from Parliament to the 50-year-old Finland.
2. An independent foresight agency: futurologist, researcher, visionary, developer, experimentalist, partner, trainer, networker.
3. Funded by returns on endowment capital and capital investments.
4. Envisages Finland as a successful pioneer in sustainable well-being.
5. Its vision is supported by three themes, six focus areas and dozens of projects.
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Building our future together
26.5.2018 First name Surname3
Links to reforms and national strategies
• Digitalisation, enabling legislation, deregulation
• policies outlined in the Government Programme and key-projects
• Health and social services reform
• steering, oversight and monitoring
• Better well-being and health for people through the means of research and technology and seamless joint access to health and social data
• implementation of the research, development and innovation growth strategy for the heath sector
• Increase in data management and electronic services
• Implementation of the strategy for bringing health and social data into use, information management
• Innovation platforms and ecosystems are being developed
• My Kanta (Omakanta), STM, Kela, Tekes...
• service operator/Isaacus, STM, Sitra, THL, TK, Kela,…
• Artifical Intellegence and Data economy
Secondary use of
health and social data
Government proposal of 26 October 2017 to Parliament
BIO BANKS,
GENE BANKS
KANTA PORTAL,
MY KANTA
(OMAKANTA)
RE-
SEARCH
DEVELOP-
MENT
AND
INNOVA-
TIONS
EDU-
CATION
STEER-
ING AND
OVER-
SIGHT
PLANNING,
SURVEYS,
STATISTICS
NATIONAL
REGISTERS
AT THL
HEALTH AND
SOCIAL
SERVICE
STATISTICS
SOCIAL-
ECONOMIC
DATA,
(TK, KELA)
SEARCH FOR
DATA:PERMITS, ETHICAL
COMMITTEES,
DATA PROTECTION
DATA TRANSFERS:TRANSFER,
COMBINATION,
PROTECTION
INFOR-
MATION
MANAGE
-MENT
PERMIT AUTHORITY (THL) AND SERVICEOPERATOR
OPERATIVE SYSTEMS WITHIN HEALTHCARE AND SOCIAL WELFARE
WHY
HOW
WHAT
National treasure:health and social data is tomorrow´s oil
How to get a licence and the data?
Request for licence or data
via an electronic system
Release of data
• anonymous data
can be released as such
• pseudonyms / identifiable data
into a secure environment
Licensing authority• grants the licence to use the material, or accepts the
request for information and gives an order to the service
operator
• notifies the decision to the person needing information
Data controllers• advice service, data resource descriptions and release of data
for handling an application for licence or a data request,
releases the licensed data to the service operator
Service operator• collects, combines, pseudonymises, anonymises the data
and releases it to be used in a secure electronic
environment maintained by the service operator or the
recipient
Person/operator
needing
information
Impacts of the new Act
Centralised licensing and
secure electronic environment
Enables individual use and
combining of data
Improved opportunities for
research and product
development
Faster access to information, wider range of
purposes of data use
Effective treatments and new medicines, e.g. for risk
groups
New business activities, products and services
Up-to-date data
Better availability of combined data
Remote use
No need to transfer sensitive data
Data will be used in a secure and scalable environment
Access to health and social data via one-stop shop: guides the user of data, administrates licences, maintains metadata, ensures information security and gives user support
On request
Faster than ever
One single licensing authority
Consistent practices
DIGITAL SERVICE PORTAL
Operation starts in stages 2018
The Isaacus project at Sitra was focused on
public sector registers
Supported by Government proposal for an Act on Secondary Use of
Health and Social Data and related legislation
(Ministry of Social Affairs and Health)
Whatabout Me
and MyData?
WhyIHAN®?
IHAN®
Our project aims to create an international protocol that gives people control over how and what their data is being used for.
Think of it as a kind of IBAN (International Bank Account Number) for personal data.
I N T E R N A T I O N A L
H U M A N S ’ A C C O U N T
N E T W O R K
EU strategies in support
# Digital single Market Free flow of non-personal data
# European Data EconomyData 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
The momentum for Human-Driven Data Economy
is right now…
#GDPRGeneral Data Protection Regulation
#PSD2Payment Services Directive
#EIDASEU regulation on electronic identification and trust services for electronic transactions
Finland could launch global initiative for
fair and sustainable data economy
We’ve got the technology for it (X-Road, for example) and a strong tradition of public-private partnerships – and active start-up scene
The Nordic Countries have experience from creating international standards (like GSM) – together!
Our society is based on trust and progressive legislation that promotes innovations (like Transport Code) – perfect testbed for human-driven data economy!
Building on National Architecture for Digital
Services…
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I H A N ® D A T A M A N A G E M E N T C O N S O L E
SITRA SIDE EVENTSHIMMS Europe Conference, Sitges28.-29.5.2018
Sitra, Saara Malkamäki
Makingpeople’s life easier, smarterand happier!
sitra.fi | seuraavaerä.fi
@sitrafund
Thank you!
Hannu Hämäläinen, Senior Advisor, Finnish Innovation Fund
@ Speaker twitter handle