Swiss eHealth Forum - Tag 2

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