Project Isaacus - Leading Public and Private Actors beyond Big Data. Jaana Sinipuro, Project Director

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1 Project Isaacus - Leading Public and Private Actors beyond Big Data Jaana Sinipuro, Project Director

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

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4 Briefly about Isaacus The Isaacus project ( ) at Sitra - Prepares the basic principles and a business plan for the Digital Health HUB - Runs pre-production projects as pilots for different technical platforms and develops national research services The act concerning the secondary use of social and healthcare data in New national Permit Authority (THL) - New legislation (GDPR compliant) enables the founding of a new Digital Health HUB that can combine data from different registries. This provides more opportunities for research and innovation. The new Digital Health HUB in action in A one-stop shop, which offers permits and access to data for research, big pharma and for wide use in the public and private sector

5 The Digital Health HUB DATA SOURCE Digital Health HUB USE OF THE DATA DATA NEED Social and healthcare registers Recognising the information need and ensuring availability Academic research Development and innovation Other data concerning individuals Data gathering Preprocessing the data Data distribution Other uses STEERING AND CONTROL PERMITS TO USE DATA AND ETHICAL EVALUATION

6 Why right now? ATTITUDE LEGISLATION COMMITMENT The public has a positive attitude towards the secondary use of healthcare data. The Act on the Safe Use of Health and Social data. Strong co-operation between ministries, public administration and the private sector.

7 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]

8 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]

9 Fastest route to data pre-production projects Enhancing researcher services and offering better access to national registries Creating new big data innovation platforms and offering new pools of data Evaluation of new technology and methods

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11 Government proposal for an Act on Secondary Use of Health and Social Data and related legislation Purpose of the proposal to create consistent up-to-date conditions for secure use of client data compiled from service activities within healthcare and social welfare and other personal data related to health and wellbeing Scope of application statistics, research, development and innovation activities, education, knowledge management, official instructions and enforcement, authorities planning and reporting duties Objective to facilitate and speed up the process related to licences to use data and to essentially reduce the administrative burden created by parallel licensing procedures. to better protect clients confidence and personal privacy Technological development has created new conditions for secure handling and combining of sensitive client data and for combining it with other personal data in a secure manner. Means statutory right to use client data from health and social services for certain purposes one single licensing authority to decide on the use of data related to the health and social sector secure electronic environment and secure connections for controlled handling of released data October 2017

12 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 October 2017

13 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 October 2017

14 Operation starts in stages at the beginning of 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

15 Our vision Country as a Cohort - analysed data fast returned to operations Modern GDPR compliant legislation Relies on Trust