Data to the People - MIDATA Cooperatives MYDATA 2018 August 29–31 Kulttuuritalo, Helsinki, Finland Markus Niessen, PhD www.midata.coop

NOW: Data fragmentation under corporate control “own interest” Data collectors health care compete with each other not transparent retailers empowered economical benefit data seclusion/fragmentation smart phones APPs Alexa Tools data flow “for free” Echo browsers platforms proprietary operating systems cams “subjects” - passive You and Me locked-in Personal data 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) Active participation of citizens world-wide to make best use of their personal data 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. 3/14 MYDATA 2018

MIDATA: Citizen-controlled data storage and sharing 4/14 MYDATA 2018

MIDATA (2014): A new trust-promoting framework Citizen owned Cooperatives (Germany, Belgium, Tanzania) Patient/citizen empowerment Not for profit Revenues are reinvested for the benefits of members and society Transparent Transparent governance Secure Data encryption, only members possess key Regional Promotion of regional-linked MIDATA cooperatives

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 3rd Party Apps 3rd Party Apps 3rd Party Apps HUMAN-CENTRIC CONTROL OF PERSONAL DATA Developed with & by partners General Assembly MIDATA Ethics committee MIDATA Platform Data storage, management, visualization consent and access management Developed by ETHZ & BFH Governance rules MIDATA.coop 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) MitrendS: 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

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

MIDATA – BFH – USZ – ELCA – DYSON – AHA! – METEOSWISS «Ally Science» Facts and Figures Kick-Off: 15. Nov. 2017 Go-Live: 24. April 2018 Visibility and users April 24th – May 2nd 2018 (10 days) Website: 49’000 Visits aus der Schweiz und 3’500 Visits EU & USA App: 10’020 Downloads Study: 6’387 registrierte Teilnehmer Records: 184’934 Video: 625 Views >> Per July 2018: 8’100 participants Media campaign 24th of April 2018: Targeted to: Media, partner-contacts and interest associations - in all regions of Switzerland Publications until 2nd of May Print and online media: 38 articles Radio stations: 9 reports TV: 2 broadcasts MIDATA – BFH – USZ – ELCA – DYSON – AHA! – METEOSWISS

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