MIDATA.coop - Citizen-controlled reuse of personal data

1. MIDATA.COOP –
Citizen-Controlled Reuse of Personal Data
André Golliez
Co-Founder and President Opendata.ch
Board Member MIDATA.coop
SDS 2015
2nd Swiss Workshop on Data Science
12. Juni 2015, Winterthur

2. Who owns big data?
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 2

3. The «oil» of the 21st century…
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 3
Data Production (in Public Administrations, Corporates, Research Institutions etc.)
Data Collection & ReuseData Collection & Reuse
Not personal DataCitizens
(Tax Payers)
Personal Data Citizens
(Consumers, Patients etc.)

4. Data democracy: data for all!
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 4
Data Production (in Public Administrations, Corporates, Research Institutions etc.)
Data Collection & ReuseData Collection & Reuse
Not personal Data
Citizens
(Tax Payers)
Personal Data
Citizens
(Consumers, Patients etc.)
Citizens
(Tax Payers)
Citizens
(Consumers, Patients etc.)

5. Precondition: Open Data and My Data!
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 5
Data Production (in Public Administrations, Corporates, Research Institutions etc.)
Data Collection & ReuseData Collection & Reuse
Not personal Data
Open Data My Data
Citizens
(Tax Payers)
Personal Data
Citizens
(Consumers, Patients etc.)
«shared data»
Citizens
(Tax Payers)
Citizens
(Consumers, Patients etc.)

6. «Personal Data – The New Asset Class»
(WEF Report 2011)
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 6
The competition for personal data:
• Google, Amazon, Facebook, Twitter,
Migros, Coop,....
• Large commercial interests in personal
data
• 1 trillion Euro market (BCG 2012)
• Personal data are valuable and sensitive
WEF_ITTC_PersonalDataNewAsset_Report_2011.pdf

7. Self generated health data
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 7
• Costs for genome sequencing <
CHF 1’000
• Mobile health: > 100’000 Health Apps
• Quantifed Self – healthy lifestyle
• Healthy Ageing
• But:
Closed systems - incompatible data silos

8. Personal data – my data?
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 8
Public
Finance &
Insurance
Retail
Medical
Telecom &
Mobile
Web/Internet
?
1. What data do «they» collect about me?
2. What are «they» doing with my data?
3. How can I access and use «my data»?
1. What data do «they» collect about me?
2. What are «they» doing with my data?
3. How can I access and use «my data»?
?
?
?
?
?
Citizen

9. Data reuse under control of the citizen
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 9
…
Retail
Telecom &
Mobile
Finance &
Insurance
Health
My Personal Data
Reuse
Reuse
Reuse
Reuse
Data Ingest, Management & Access
Contract
Contract
Citizen
Data Provider
Service Provider

10. Three challenges (at least)…
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 10
How to access and
download my
personal data?
How to store and
manage my
personal data?
How to reuse and
get value out of
my personal data?

11. First answers:
«Smart Disclosure» (US) and «Midata» (UK)
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 11

12. Smart Disclosure Showcase #1:
«Blue Botton» (US)
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 12

13. Benefits of Blue Button
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 13

14. Smart Disclosure Showcase #2:
«Green Button» (US)
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 14

15. Who Is Using Green Button Data?
• Commercial Energy Users
– Virtual Energy Audits
– Benchmarking Resource Usage
– Validating Efficiency Goals
• Residential Consumers
– Efficiency Programs
– Fact Based Service Deployment
• Utilities and Energy Service Providers
– Customer Engagement
– Service Analytics
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 15

16. «Midata»-Standard (UK)
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 16
Who is involved?
AMEE
Avoco Secure
British Gas
Callcredit
EDF Energy
E.ON
Garlik
Google
Lloyds Banking Group
MasterCard
Moneysupermarket.com
Scottish Power
Scottish Southern Energy
The UK Cards Association
Three
Visa
Who is involved?
AMEE
Avoco Secure
British Gas
Callcredit
EDF Energy
E.ON
Garlik
Google
Lloyds Banking Group
MasterCard
Moneysupermarket.com
Scottish Power
Scottish Southern Energy
The UK Cards Association
Three
Visa

17. Better decisions based on Midata:
gocompare.com (UK)
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 17

18. The Swiss way to my data: MIDATA.COOP
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 18

19. Why a Personal Data Cooperative?
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 19
• Personal data are sensitive and part of one’s digital identity
• The value of personal data lies in its aggregation
• This value should be returned to the individuals and the
community and not third parties (e.g. shareholders)
• The cooperative is owned and controlled by its members and
not by shareholders (of Google, Facebook, etc). Profits are
invested according to the member’s needs
• Cooperatives cannot be bought
• The ideal corporate form for a sharing economy since all
people have similar amounts of personal data

20. MIDATA Prototype Platform
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 20
• 2014: basic development at ETHZ (Prof. Dr. Donald Kossmann)
• 2015: functional development and GUI redesign at
Berner Fachhochschule BFH (Prof. Dr. Serge Bignens)
– Personal Data Management, Social Communication and Information
– Focus on Personal Health Data and Research
• Project Outlook:
– Universitätsspital Zürich USZ (Multiple Sclerosis Study)
– Inselspital Bern (Adepositas (obesity) Study)
– H2020 submissions

21. MIDATA Prototype Platform Architecture
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 21

22. Personal Health Data Management
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 22

23. Research
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 23

24. Social Communication
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 24

25. External Information
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 25

26. Generic Dashboards
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 26

27. Demo
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 27

28. Technical Solution
• Flat data model based on records of any data type
• Data is generated by mobile Apps, Patient and Health
Professional Portal and through API
• Records are stored without any references to owner and
records are encrypted
• Record encryption keys are stored in access permission sets
accessible only to owner
• Owner can share his access permissions sets with friends
and/or health professionals
• Data is displayed thought visualizators specific for each
datatype
• Dashboards are made available with faceted view about news,
data, coaching, running studies, …
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 28

29. Technical Architecture
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 29

30. Basic conditions for MIDATA
• The «Right to get a Copy» on constitutional level
• Personal data cooperatives as NPO organizations and
representations of data-empowered citizens
• Standardised formats and interfaces to access and
download personal data from corporates and public
adminstrations(«Smart Disclosure»)
• Personal data management platforms enabling
citizens to collect, manage and reuse personal data
under their control
18.10.2014 Open Data und MIDATA - das Recht auf unsere Daten 30

31. Freedom for our data!
18.10.2014 Open Data und MIDATA - das Recht auf unsere Daten 31

32. 11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 32
Thank You For Yor Attention!
Visit Opendata.ch 2015 Conference
July 1st 2015 at University of Bern
and meet the MIDATA developers!