ISD2016_Solution_G_Serge_Bignens
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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.
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
- 2. MIDATA.COOP Citizen-controlled data storage and sharing
- 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
- 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