From registers to personal data

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Clara Mills
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1 The Fair Data Economy Promise From registers to personal data Jaana

2 A gift to Finland The Finnish Parliament established Sitra as a gift celebrating the 50th anniversary of Finland's independence. The public future-oriented organisation was given the mission to build the successful Finland of tomorrow. The year was Erkki Laitila, HS/Lehtikuva 1967

Sitra by the figures Investments by the Finnish State 1967: 16.8 M 1972: 16.8 M 1981: 16.8 M 1992: 16.8 M 84.1 M Annual budget 30-40 million euros 159 employees in 31 Dec.

3 Sitra by the figures Investments by the Finnish State 1967: 16.8 M 1972: 16.8 M 1981: 16.8 M 1992: 16.8 M 84.1 M Annual budget million euros 159 employees in 31 Dec Market value of endowment capital 840 million euros in 31 Dec Average return in % 66 % women 34 % men 89 % higher education 11 % other education Founded in1967 Working for the future over years 50

4 TOWARDS FAIR DATA ECONOMY The Fair Data Economy Promise 4

6 Terms of agreement confuse and cover Is it fair? Or is it green washing? Art & photo Dima Yarovinsky

7 Enabling regulation? #GDPR General Data Protection Regulation #PSD2 Payment Services Directive #EIDAS EU regulation on electronic identification and trust services for electronic transactions

and regulatory rather than technical Source: The

8 Maintaining Trust Europe s Biggest Opportunity? Europe s biggest opportunity, however, may be political and regulatory rather than technical Source: The Economist, Big Data, small politics - Can the EU become another AI superpower?

9 IHAN AS AN ENABLER OF PARADIGM SHIFT Our project aims to build the foundation for a fair and functioning data economy. The main objectives are to create a method for data exchange and to set up European level rules and guidelines for fair use of data.

10 IHAN project in nutshell Establish key principles and guidelines for human-driven data exchange Develop standard for consent-based data portability. Test standard in multiple industries and countries. Ensure interoperability and readiness for scaling through technical Proof-of-Concepts [ I H A N A P P R O V E D ] Develop common roadmap for fair and sustainable data economy. Build common governance model

11 IHAN in a nutshell Data providers Requests for data Service provider Authorization to use my data Data Service

Project IHAN - Aims to build the foundation for a fair and functioning data economy. Project that runs until 2021. Mindset change, funding of technical pilots and standardisation.

12 Project IHAN - Aims to build the foundation for a fair and functioning data economy. Project that runs until Mindset change, funding of technical pilots and standardisation. - Aims to identify new business models and new potential for userdriven innovations. Strong focus on companies. - Finland as a testbed. National steering board (government agencies), international advisory boards. MyData.org - Network formed by individuals and organisations administred by Open Knowledge Finland and Aalto university - MyData Global founded in October Sitra as a founding partner and Steering Board member - Empowering individuals and communities. Awareness for use of personal data and rights. Administration of personal data ( data operators ) - MyData declaration source: mydata.org

13 FINLAND AS PHARMA TESTBED Available Data, Advanced Environment 13

14 Basic principles on the use of data Percentage of respondents who considered it to be important or very important [Source: Survey made by TNS Gallup / Sitra 2016, link to Research outcomes]

15 Trust in those who use my data Percentages of those considered to be trustworthy or quite trustworthy [Source: Survey made by TNS Gallup / Sitra 2016, link to Research outcomes]

16 For what purposes would you let your unidentified activity data be used? Percentage of those answering Yes, my information can be used freely. 16

17 The Digital Health HUB

18 Highlights from Pilots and Experiments Improving Research Infrastructure and Researcher Services New technologies and platforms for innovations

19 Highlights from new legislation Streamlined processes between different authorities if data needed only from one register holder > direct access if data needed from multiple register holders > access through permit authority anonymous data > easy access, permit authority (jointly with service operator ) will collect data sets pseudonymised data > permit needed, use only in secure environment Predefined delivery times for data Clear regulation and policies on data usage for R&D and Innovations Definition for Scientific Research follows EU regulation If data needed for commercial use > either with consent or fully anonymised data

20 Finnish Health Register Data Good Foundation for R&D Supported by Government proposal for an Act on Secondary Use of Health and Social Data and related legislation (Ministry of Social Affairs and Health) What about My Personal Data?

21 IHAN The Big Picture Consent to My Personal Data To whom For what purpose Collect & use my personal data Actions after usage Consumer/Patient

The New Medical Data Ecosystem Genomic Data Public

Social Media Data - Behaviour Electronic Medical

for Research and Business Open Data Since1965->

Unique Data Longitudinal Health Data Mobile Health

recall service Wellness Data Insurance Claims Data

22 The New Medical Data Ecosystem Genomic Data Public Health Data Longitudinal and epidemilogical data Social Media Data - Behaviour Electronic Medical Records Open Environmental Data Government Support for Research and Business Open Data Since1965-> Family Health History Family tree Address history Unique Data Longitudinal Health Data Mobile Health Data Sensor Data Personal Health Records Patient recall service Wellness Data Insurance Claims Data National Insurance Institute Benefits and services data Research and statistical data 22

23 IHAN AS AN ENABLER FOR PARADIGM SHIFT FROM SELLING PILLS TO SELLING VALUE

The new deal of data in the data-driven person centric-care

The new deal of data in the data-driven person centric-care Maritta Perälä-Heape, Professor of practice, University of Oulu, Faculty of Medicine, Center for health and technology, Oulu, Finland OuluHealth