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Modern, citizen-centred data stewardship
for the common good:
Why do we have to go beyond the GDPR?
Juuso Parkkinen, PhD, @ouzor
MyData.org and Nightingale Health (Finland)
BeyondRCT, 25 September 2018, Amsterdam
Juuso Parkkinen
PhD in bioinformatics and machine learning from Aalto University
Senior Data Scientist at Nightingale Health
Active member in the MyData and Open Knowledge community
Health AI Privacy
2
Based on extensive health data collection and use!
Image adapted from https://www.trueprocess.com/the-future-of-medicine-predictive-personalized-preventive-participatory/
In practice
?
Growing concerns
Who gets the value?
The business is moving
The personal data challenge
Data protection
& security
Value &
usability
Can we have both?
Individuals should be in control of their own data.
MyData
But why?
It is a basic digital right.Control enables value creation.
The MyData approach aims at strengthening digital human rights while opening new opportunities for businesses to develop innovative personal data based services built on mutual trust.
MyData
Three Models
API Ecosystem Platform Model MyData Model
Individual as:
Connection point: data from
one person can be connected
Control point: Individual
decides who uses her data and
how by giving consents
Weak
Data Protection
Lots of data usage
Less usage of
personal data
Strong
Data Protection
Comply with the GDPR
People decideOrganisations decide
Old paper times
REGULATION
Individual
thinkers
White Paper
in Finnish
Working
Group
EU Commission
“PIMS round table”
White Paper
in EnglishMyData
Conf. 2016
Gov.
agenda
2013 2014 2015 2016 20172012
MyData
declaration
MyData movement
ALTERNATIVE
VISION
GUIDING
PRINCIPLESGLOBAL
NETWORK
MEETINGS &
CONFERENCES
MyData global organisation founding meeting on October 11th
ATLANTA
FINLAND
ESTONIA
SWEDEN
DENMARK
NORWAY
BRUSSELS (Belgium)
NETHERLANDS
UNITED KINGDOM
SWITZERLAND
BERLIN (Germany)
FRANCE (MesInfos)
BARCELONA (Spain)
TURIN (Italy)
SLOVENIA
SLOVAKIA
GREECE
BRAZIL
JAPANNEW YORK
TAIWAN
CANADA
MyData Local Hubsmydata.org/hubs
NEPAL
https://midata.coop/
http://hhdc.nl/
Nightingale Health – solving the global burden of chronic diseases
19
Nightingale has built a blood testing technology that helps us forecast our health in chronic diseases.
We measure, analyse and refine essential health data to enablepreventive & personalized healthcare.
Low
Medium
High
−1 2 4 6 8week
Health index
Nightingale Health – solving the global burden of chronic diseases
20
How aboutthe Biobank of
the World?
Low
Medium
High
−1 2 4 6 8week
Health index
Recap
To enable human-centric, personal data –driven
future of healthcare, we need
● privacy and data protection.
● value from collective use of personal data.
MyData.orgJuuso Parkkinen, PhD, @[email protected]
