Jaana Sinipuro, Project Director - Project Isaacus - Leading Public and Private Actors beyond Big Data
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Project Isaacus® - Leading Public and Private Actors beyond Big Data Jaana Sinipuro, Project Director
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 1967.
Erkki Laitila, HS/Lehtikuva 1967
Briefly about Isaacus The Isaacus project (2015–2018) 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 2018 - 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 2018 - 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
The Digital Health HUB
DATA SOURCE Digital Health HUB USE OF THE DATA DATA NEED
Social and Recognising the Academic research
healthcare information need and
registers ensuring availability
Development and
innovation
Other data Data
Pre-
Data
concerning gathering
processing
distribution
individuals the data
Other uses
STEERING AND CONTROL
PERMITS TO USE DATA AND ETHICAL EVALUATION
Why right now?
ATTITUDE LEGISLATION COMMITMENT
The public has a positive The Act on the Safe Use of Strong co-operation
attitude towards the Health and Social data. between ministries,
secondary use of public administration
healthcare data. and the private sector.
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]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]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
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
14 26 October 2017How to get a licence and the data?
Request for licence or data Licensing authority
via an electronic system • 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
Person/operator
needing
Service operator
information • collects, combines, pseudonymises, anonymises the data
and releases it to be used in a secure electronic
environment maintained by the service operator or the
Release of data recipient
• anonymous data
can be released as such
• pseudonyms / identifiable data Data controllers
into a secure environment • 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
15 26 October 2017Impacts of the new Act
Faster access to
Centralised licensing and
information, wider range of
secure electronic environment purposes of data use
Effective treatments and
Enables individual use and
new medicines, e.g. for risk
combining of data groups
Improved opportunities for
New business activities,
research and product products and services
development
16 26 October 2017Operation starts in stages at the beginning of 2018
Remote use Up-to-date data DIGITAL SERVICE
No need to transfer Better availability of PORTAL
sensitive data combined data Access to health and
Data will be used in a social data via one-stop
secure and scalable shop: guides the user of
environment data, administrates
licences, maintains
metadata, ensures
On request information security and
Faster than ever gives user support
One single licensing authority
Consistent practicesOur vision
”Country as a Cohort” - analysed data fast returned to operations
Modern GDPR compliant legislation
Relies on Trust
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