Enabling the Secondary Use of Social and Health Care Data Implementig GDPR

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1 Enabling the Secondary Use of Social and Health Care Data Implementig GDPR Hannu Hämäläinen, Senior Advisor, Finnish Innovation Fund - Speaker twitter handle

2 5 key facts about Sitra 1. A gift from Parliament to the 50-year-old Finland. +1 Building our future together 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.

3 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 First name Surname

4 Secondary use of health and social data Government proposal of 26 October 2017 to Parliament

5 National treasure: health and social data is tomorrow s oil WHY RE- SEARCH DEVELOP- MENT AND INNOVA- TIONS EDU- CATION INFOR- MATION MANAGE -MENT STEER- ING AND OVER- SIGHT PLANNING, SURVEYS, STATISTICS PERMIT AUTHORITY (THL) AND SERVICEOPERATOR HOW SEARCH FOR DATA: PERMITS, ETHICAL COMMITTEES, DATA PROTECTION DATA TRANSFERS: TRANSFER, COMBINATION, PROTECTION WHAT BIO BANKS, GENE BANKS KANTA PORTAL, MY KANTA (OMAKANTA) NATIONAL REGISTERS AT THL HEALTH AND SOCIAL SERVICE STATISTICS SOCIAL- ECONOMIC DATA, (TK, KELA) OPERATIVE SYSTEMS WITHIN HEALTHCARE AND SOCIAL WELFARE

6 How to get a licence and the data? Request for licence or data via an electronic system Person/operator needing information 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 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 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

7 Impacts of the new Act Centralised licensing and secure electronic environment Faster access to information, wider range of purposes of data use Enables individual use and combining of data Effective treatments and new medicines, e.g. for risk groups Improved opportunities for research and product development New business activities, products and services

8 Operation starts in stages 2018 Remote use No need to transfer sensitive data Data will be used in a secure and scalable environment Up-to-date data Better availability of combined data On request Faster than ever One single licensing authority Consistent practices DIGITAL SERVICE PORTAL 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

9 The Isaacus project at Sitra was focused on public sector registers What about Me and MyData? Supported by Government proposal for an Act on Secondary Use of Health and Social Data and related legislation (Ministry of Social Affairs and Health)

10 Why IHAN?

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12 IHAN 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 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.

13 EU strategies in support # Digital single Market Free flow of non-personal 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

14 The momentum for Human-Driven Data Economy is right now #GDPR General Data Protection Regulation #PSD2 #EIDAS EU regulation on electronic identification and trust services for electronic transactions Payment Services Directive

15 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!

16 Building on National Architecture for Digital Services 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 +

17 SITRA SIDE EVENTS HIMMS Europe Conference, Sitges Sitra, Saara Malkamäki

18 Making people s life easier, smarter and happier!

19 sitra.fi

20 Thank you! Hannu Hämäläinen, Senior Advisor, Finnish Innovation Speaker twitter handle