MIDATA COOP Data to the People MIDATA Cooperatives
- Slides: 14
MIDATA. COOP Data to the People - MIDATA Cooperatives MYDATA 2018 August 29– 31 Kulttuuritalo, Helsinki, Finland Markus Niessen, Ph. D www. midata. coop
NOW: Data fragmentation under corporate control Data collectors “own interest” compete with each other not transparent empowered economical benefit data seclusion/fragmentation health care Tools data flow retailers APPs Alexa smart phones browsers Echo platforms operating systems cams “for free” proprietary “subjects” - passive Personal data You and Me locked-in little economic benefit 2/14 MYDATA 2018
The Future: Data aggregation under user control to benefit society Aggregation of data from millions of people Data portability: Every person has a right to obtain a copy of his/her personal data (EU GDPR) Modified from: National Research Council. (2011). Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease (pp. 1– 143). National Academic Press. Active participation of citizens world-wide to make best use of their personal data 3/14 MYDATA 2018
MIDATA: Citizen-controlled data storage and sharing 4/14 MYDATA 2018
MIDATA (2014): A new trust-promoting framework Citizen owned Transparent Cooperatives (Germany, Belgium, Tanzania) Patient/citizen empowerment Transparent governance Secure Not for profit Revenues are reinvested for the benefits of members and society Data encryption, only members possess key Regional Promotion of regional-linked MIDATA cooperatives 5/14 MYDATA 2018
MIDATA implements the MYDATA (2015) principles 1. HUMAN-CENTRIC CONTROL OF PERSONAL DATA 2. INDIVIDUAL AS THE POINT OF INTEGRATION 3. INDIVIDUAL EMPOWERMENT 4. PORTABILITY: ACCESS AND RE-USE 5. TRANSPARENCY AND ACCOUNTABILITY 6. INTEROPERABILITY 6/14 MYDATA 2018
MIDATA ecosystem for innovation INDIVIDUAL EMPOWERMENT TRANSPARENCY AND ACCOUNTABILITY HUMAN-CENTRIC CONTROL OF PERSONAL DATA General Assembly MIDATA Ethics committee Governance rules 3 rd Party Apps Developed with & by partners MIDATA Platform Data storage, management, visualization consent and access management MIDATA. coop Developed by ETHZ & BFH INDIVIDUAL AS THE POINT OF INTEGRATION 7/14 MYDATA 2018
MIDATA platform architecture INTEROPERABILITY PORTABILITY: ACCESS AND RE-USE 8/14 MYDATA 2018
Use Cases – Patient Reported Outcome Mimoti: Patient Reported Outcome (PRO) study after bariatric surgery, Insel Hospital (May 2016) Mitrend. S: PRO study in multiple sclerosis, USZ, (April 2017) Miwado: Secure communication between patients and healthcare providers, Insel (July 2017) Evoli: PRO study after chemotherapy, Insel Hospital (Oct 2017) Ally Science: Swiss Hay Fever Cohort, USZ, (April 2018) 9/14 MYDATA 2018
Current MIDATA Projects - Project Partners Swiss Data Science Center 10/14 MYDATA 2018
Citizen Science to map pollen allergies in Switzerland 11/14 MYDATA 2018
«Ally Science» – Partners and their roles in the project University Hospital of Zurich, Clinic for Dermatology, Allergy Station: Study design, evaluation of anonymised data MIDATA, genossenschaftliche, sichere Datenverwaltung: Verwaltung & Sicherung der Nutzerdaten, Steuerung der Zugriffsrechte Berner Fachhochschule, Abteilung für Medizininformatik: Fach- und Technologie Partner, App-Konzeption, Design & Entwicklung ETH Zürich, Institute for Molecular Systems Biology: Begleitung im Citizen-Science-Prozess Dyson Schweiz SA & Dyson Ltd. , Forschung und Entwicklung Raumklima-Geräte Kompetenz- und Finanzierungspartnerschaft ELCA Informatique SA, IT-Dienstleistungen. Beratung, Entwicklung, Betrieb und Unterhalt IT-Entwicklungspartner Superhuit Sàrl, Partner für Grafik und Design Weitere Partner: Das Bundesamt für Meteorologie und Klimatologie Allergiezentrum Schweiz 12/14 MYDATA 2018
«Ally Science» Facts and Figures Kick-Off: 15. Nov. 2017 MIDATA – BFH – USZ – ELCA – DYSON – AHA! – METEOSWISS Go-Live: 24. April 2018 Visibility and users April 24 th – May 2 nd 2018 (10 days) • • • Website: App: Study: Records: Video: >> Per July 2018: 49’ 000 Visits aus der Schweiz und 3’ 500 Visits EU & USA 10’ 020 Downloads 6’ 387 registrierte Teilnehmer 184’ 934 625 Views 8’ 100 participants Media campaign 24 th of April 2018: Targeted to: Media, partner-contacts and interest associations - in all regions of Switzerland Publications until 2 nd of May Print and online media: 38 articles Radio stations: 9 reports TV: 2 broadcasts 13/14 MYDATA 2018
Contacts Ernst Hafen (President): ehafen@midata. coop Serge Bignens (Board member, platform development) serge. bignens@midata. coop Markus Niessen (Projects, citizen science) markus. niessen@midata. coop 14/14 MYDATA 2018
