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MIDATA.COOP
Meine Daten, Unsere Gesundheit
Präsentation an eHealth Forum 2016
Prof. Serge Bignens BFH Institute for Medical informatics
MIDATA.COOP
Citizen-controlled data storage and sharing
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
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
4
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
5
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
6
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
7
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
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
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
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
11
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
12
MIDATA.COOP
Citizen-controlled data storage and sharing
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

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ISD2016_Solution_G_Serge_Bignens

  • 1. MIDATA.COOP Meine Daten, Unsere Gesundheit Präsentation an eHealth Forum 2016 Prof. Serge Bignens BFH Institute for Medical informatics
  • 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 4
  • 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 5
  • 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 6
  • 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 7
  • 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 11
  • 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 12
  • 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