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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

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