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MIDATA.COOP –
Citizen-Controlled Reuse of Personal Data
André Golliez
Co-Founder and President Opendata.ch
Board Member MI...
Who owns big data?
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 2
The «oil» of the 21st century…
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 3
Data Production (in Pub...
Data democracy: data for all!
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 4
Data Production (in Publ...
Precondition: Open Data and My Data!
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 5
Data Production (...
«Personal Data – The New Asset Class»
(WEF Report 2011)
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data ...
Self generated health data
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 7
• Costs for genome sequenci...
Personal data – my data?
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 8
Public
Finance &
Insurance
Re...
Data reuse under control of the citizen
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 9
…
Retail
Telec...
Three challenges (at least)…
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 10
How to access and
downlo...
First answers:
«Smart Disclosure» (US) and «Midata» (UK)
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data...
Smart Disclosure Showcase #1:
«Blue Botton» (US)
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 12
Benefits of Blue Button
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 13
Smart Disclosure Showcase #2:
«Green Button» (US)
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 14
Who Is Using Green Button Data?
• Commercial Energy Users
– Virtual Energy Audits
– Benchmarking Resource Usage
– Validati...
«Midata»-Standard (UK)
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 16
Who is involved?
AMEE
Avoco Se...
Better decisions based on Midata:
gocompare.com (UK)
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 17
The Swiss way to my data: MIDATA.COOP
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 18
Why a Personal Data Cooperative?
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 19
• Personal data are ...
MIDATA Prototype Platform
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 20
• 2014: basic development a...
MIDATA Prototype Platform Architecture
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 21
Personal Health Data Management
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 22
Research
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 23
Social Communication
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 24
External Information
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 25
Generic Dashboards
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 26
Demo
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 27
Technical Solution
• Flat data model based on records of any data type
• Data is generated by mobile Apps, Patient and Hea...
Technical Architecture
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 29
Basic conditions for MIDATA
• The «Right to get a Copy» on constitutional level
• Personal data cooperatives as NPO organi...
Freedom for our data!
18.10.2014 Open Data und MIDATA - das Recht auf unsere Daten 31
11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 32
Thank You For Yor Attention!
Visit Opendata.ch 2015 C...
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MIDATA.coop - Citizen-controlled reuse of personal data

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  1. 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. 2. Who owns big data? 11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 2
  3. 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. 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. 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. 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. 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. 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. 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. 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. 11. First answers: «Smart Disclosure» (US) and «Midata» (UK) 11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 11
  12. 12. Smart Disclosure Showcase #1: «Blue Botton» (US) 11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 12
  13. 13. Benefits of Blue Button 11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 13
  14. 14. Smart Disclosure Showcase #2: «Green Button» (US) 11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 14
  15. 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. 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. 17. Better decisions based on Midata: gocompare.com (UK) 11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 17
  18. 18. The Swiss way to my data: MIDATA.COOP 11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 18
  19. 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. 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. 21. MIDATA Prototype Platform Architecture 11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 21
  22. 22. Personal Health Data Management 11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 22
  23. 23. Research 11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 23
  24. 24. Social Communication 11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 24
  25. 25. External Information 11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 25
  26. 26. Generic Dashboards 11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 26
  27. 27. Demo 11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 27
  28. 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. 29. Technical Architecture 11.6.2015 MIDATA.COOP - Citizen-Controlled Reuse of Personal Data 29
  30. 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. 31. Freedom for our data! 18.10.2014 Open Data und MIDATA - das Recht auf unsere Daten 31
  32. 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!

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