This document presents MIDATA.coop, a citizen-controlled platform for storing and sharing personal health data. MIDATA.coop is being developed by ETH Zurich and Bern University of Applied Sciences as a not-for-profit cooperative that empowers citizens to securely store their medical and genomic data and share it through mobile apps if they choose. The presentation outlines several potential use cases for MIDATA.coop, including patient follow-up after medical procedures, post-surveillance of chronic conditions like multiple sclerosis, and health data sharing for athletes, students and researchers.

1. MIDATA.COOP
Meine Daten, Unsere Gesundheit
Präsentation an eHealth Forum 2016
Prof. Serge Bignens BFH Institute for Medical informatics

2. MIDATA.COOP
Citizen-controlled data storage and sharing

3. MIDATA.COOP
MIDATA.coop
MIDATA innovation ecosystem
3rd Party
Apps
Ethics
commi7ee
Governance
rules
General
Assembly
Developed
with & by partners
Developed by
ETHZ & BFH
3rd Party
Apps
3rd Party
Apps
MIDATA PlaEorm
Data storage, management, visualizaIon
consent and access management

4. MIDATA.COOP
MIDATA for Patient follow-up
Citizen/Patients: Adepositas, stomach bypass
Health Professionals: Bariatric surgery Uniclinic
Functions: Patients document and share their
activity and well-being after surgery
Data: Activity tracking, weight, well-being
Added value: Outcome measure, patient empowerment, risk reduction
Status: Start Mai 1st 2016
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5. MIDATA.COOP
MIDATA for post surveillance
Citizen/Patients: Multiple sclerosis
Health Professionals: Neurology Uniclinic
Functions: Patients test and share over extended period
their movement and cognitive capabilities
Data: Cognitive and movement tests, well-being
Added value: Outcome measure, patient empowerment
Status: Prototype in development
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6. MIDATA.COOP
MIDATA for sport/health coaching
Citizen/Patients: Top athletes
Health Professionals: Sport –physician, -physio., and -coach
Functions: Athletes document and share
their health and training data
Data: Training and recovery programs after injuries
Added value: Faster recoveries, health/performance balance
Status: Prototype in development
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7. MIDATA.COOP
MIDATA for citizen science
Citizen/Patients: Students, professors, employees
Health Professionals: ETH researchers
Functions: Citizen share their genome data
and test their olfactory capabilities
Data: Genome, olfactory profile
Added value: Scientific knowledge, citizen empowerment
Status: Design of the study
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8. MIDATA.COOP
What do those use cases have in common
Data protection
Data sharing
Mobile access through Apps
Citizen empowerment
Added value
Open platform with clear governance
8
TRUST

9. MIDATA.COOP
Dwindling trust in data companies
Ø Need for a new trust-promoting framework
9
Symantec (2015)
State of privacy report 2015.
www.symantec.com

10. MIDATA.COOP
MIDATA.coop – A new trust-promoting framework
Citizen owned
• Cooperatives
Not for profit
• Revenues are reinvested for
the benefits of members and
society
Transparency
• Transparent governance
Secure
• Data encryption
Regional
• Regional MIDATA cooperatives

11. MIDATA.COOP
The need for citizen empowerment
• A legal right to a digital copy of all personal data (medical and non-medical)
Postulate accepted by Federal Council Nov 12 2015
• A safe and secure bank account in which people can store, manage and
actively share data on their terms
• A not-for-profit cooperative organizational structure of the personal data
banks so that they are owned by the citizens
• Revenues from citizen-controlled secondary use of data are invested in
projects and services that benefit members and society at large
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12. MIDATA.COOP
Health Data today
• Stored in silos
• Sensitive
• Inaccessible without the consent of patients
• New data silos generated by revolutions in mHealth & genomics
• Large untapped public health value
• Large economic value
• Lack of trust
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13. MIDATA.COOP
Citizen-controlled data storage and sharing

14. MIDATA.COOP 14
Contact information
Prof. Ernst Hafen
President MIDATA Genossenschaft, Zürich-Schlieren
Institute of Molecular Systems Biology
ETH Zurich
ehafen@ethz.ch
@ehafen
Prof. Serge Bignens
Institute of Medical Informatics, University of Applied Science Bern
serge.bignens@bfh.ch