MIDATA.COOP –Citizen-Controlled Reuse of Personal Data

André GolliezCo-Founder and President Opendata.ch

Board Member MIDATA.coop

SDS 2015

2nd Swiss Workshop on Data Science

12. Juni 2015, Winterthur

Who owns big data?

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The «oil» of the 21st century…

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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.)

Data democracy: data for all!

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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.)

Precondition: Open Data and My Data!

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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.)

«Personal Data – The New Asset Class»

(WEF Report 2011)

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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

Self generated health data

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• 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

Personal data – my data?

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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

Data reuse under control of the citizen

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…

Retail

Telecom &

Mobile

Finance &

Insurance

Health

My Personal Data

Reuse

Reuse

Reuse

Reuse

Data Ingest, Management & Access

Contract

Contract

Citizen

Data Provider

Service Provider

Three challenges (at least)…

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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?

First answers:

«Smart Disclosure» (US) and «Midata» (UK)

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Smart Disclosure Showcase #1:

«Blue Botton» (US)

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Benefits of Blue Button

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Smart Disclosure Showcase #2:

«Green Button» (US)

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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

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«Midata»-Standard (UK)

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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

Better decisions based on Midata:

gocompare.com (UK)

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The Swiss way to my data: MIDATA.COOP

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Why a Personal Data Cooperative?

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• 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

MIDATA Prototype Platform

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• 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

MIDATA Prototype Platform Architecture

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Personal Health Data Management

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Research

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Social Communication

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External Information

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Generic Dashboards

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Demo

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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, …

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Technical Architecture

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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

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Freedom for our data!

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Thank You For Yor Attention!

Visit Opendata.ch 2015 Conference

July 1st 2015 at University of Bern

and meet the MIDATA developers!