Data to the People – Satellite Panel during WEF in Davos

Data to the People – A Solution to Healthcare?

Date: 1pm, January 17th 2017: Location: Promenade 73, Davos Dorf ‘Caspian Week’

Two factors challenge the current healthcare space: The quest for better diagnostics and treatment options to increase the precision of healthcare services and the need to control its related socio-economic cost. Personal patient data, and all its aspects; from data generation to complex data processing and its adequate distribution, affect the above challenges structurally.

Present panel members are at the forefront of leading the healthcare space into the next phase of integrated data management and utilization. They support the concept of citizen-controlled data access pioneered by MIDATA.coop, which enables citizens to securely store, manage and control access to their personal data by helping them to establish and own national and regional not-for-profit MIDATA cooperatives. MIDATA’s initial focus will be on health-related data since these are most sensitive and valuable for one’s personal health. The MIDATA cooperatives act as the fiduciaries of their members’ data. MIDATA members can visualize and analyze their personal data and can actively contribute to medical research and clinical trials by providing access to their sets of personal data. MIDATA cooperatives provide novel and fair platforms for commercial partners to develop personal data services and tools. This panel addresses fundamental questions of:

·       What kind of data does healthcare and precision public health need?

·       What hinders health data integration?

·       What is the economic value of personal data?

·       How can a right to a digital copy of personal data help?

·       How can not-for-profit data cooperatives contribute to a new sustainable personal data economy?

·       Why should the individual not obtain financial incentives to share data?

The moderators are: Prof. Ernst Hafen and Dr. Kaspar Bänziger RSVP: hafen@imsb.biol.ethz.ch

Our Panelists

 Prof. Ernst Hafen, ETH Zurich, MIDATA.coop

 Prof. Effy Vayena, Univ. Zürich, Harvard Medical School

 Preeti Sinha, YES Institute, India

 Dr. Klaas Zuideveld, Caris Lifesciences, Dallas

 David Haerry, EUPATI-IMI, Brussels

 Dr. Elsy Mankah Ngwa, ETH Zürich

 Massimo Morino, Innovation for Health, Inc. Milan

 Prof. Serge Bignens, Bern University of Applied Science and MIDATA.coop

Posultat “Recht auf Kopie” vom Bundesrat angenommen

Das von Prof. Thomas Gächter (UZH) erarbeite Grundlagenpapier zum “Recht auf Kopie” wurde von den Vereinsmitgliedern Mathis Brauchbar, André Golliez und Ernst Hafen in Diskussionen mit verschiedenen Exponenten der Verwaltung und des Parlaments eingebracht. FDP Nationalrat Fathi Derer (VD) hat ein entsprechendes Postulat eingebracht. Am 12. November 2015 hat der Bundesrat die Annahme des Postulats beantragt. Er möchte, dass das Thema in die Revision des Datenschutzgesetzes aufgenommen wird. Der Verein hat damit einen wichtigen Meilenstein in Richtung digitale Selbstbestimmung erreicht. Herzlichen Dank allen Beteiligten! Posulat Recht auf Kopie Screen Shot 2015-11-12 at 18.41.52 Screen Shot 2015-11-12 at 18.41.38

Das Recht auf Kopie

DuG Veranstaltung zur informationellen Selbstbestimmung in Bern, 26. Januar 2015

Prof. Thomas Gächter, Universität Zürich –  Das Recht auf Kopie

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Dr. Peter Grolimund, Teradata – Big Data zwischen Hype und Realität, Perspektiven im Gesundheitswesen

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January 22/23 2015 – Workshop on Citizen Science at ETH

Daten und Gesundheit is sponsoring the workshop on Citizen Science at ETH

In P4 (personalized, predictive, preventive, participatory) medicine the active participation of patients and citizens by sharing relevant personal health data (on drug side effects, environmental influences to health etc) is one of the four pillars this modern medicine. The active participation of citizens in medical research generates large opportunities and also challenges. The goal of this interdisciplinary workshop is to define the scope and potential of citizen science and to discuss how it will impact on traditional university driven biomedical research and research funding.

For the program and registration go to: www.citizenscience.ch

13th draft   Opportunities and Challenges of Citizen Science

Organisers:

Ernst Hafen, Institute of Molecular Systems Biology, ETH Zürich, Association Daten und Gesundheit Mike Martin, University Research Priority Program “Dynamics of healthy Aging”, UZH Kevin Schawinski, Institute for Astronomy, ETH Zürich Effy Vayena, Institute for Biomedical Ethics, UZH

Sponsors:

ETH Zürich Critical Thinking Initiative University of Zürich: PhD Program in Biomedical Ethics and Law and URPP Dynamics of Healthy Aging Association Data and Health

Abstract

Up until the end of the 19th century significant scientific discoveries were made by financially independent citizens (e.g., Charles Darwin). During the 20th century scientific research became the realm of universities and other large institutions. As a consequence, citizens developed an increasingly critical attitude towards science and its application (e.g., GMO, evolution, vaccination). Owing to new global communication and social interaction tools and the rapidly increasing digital transformation of data, knowledge is becoming easily accessible and citizen participation is again increasingly possible. Wikipedia as a crowd-sourced encyclopedia has outpaced classical knowledge compendia in a single decade. As a new form of science, direct participation of citizens in scientific projects is starting to appear. In the “Foldit” on-line computer game, citizens with no formal training in protein structure and biochemistry help to analyze the structure of proteins. Similarly, in “Zooniverse.org” millions of citizens classify galaxies, extract oceanic meteorological data from logbooks of ancient ships, or classify tumor samples. These are the very first manifestations of a revolution in scientific research that invites public participation or may even be initiated by the public. Citizen science, thus, offers a huge potential in engaging citizens in scientific research. Not only will this be important for the common good, it will also increase the public’s scientific literacy, which has generally been neglected owning to the retraction of science behind the walls of academia. Opportunities will further increase by citizen researchers contributing and analyzing their own personal health data. The vision of more participatory sciences looks bright and may in fact counteract to some degree the impending threat of the elimination of highly qualified jobs by ever faster and smarter computers and robots. However, citizen science also raises questions on the ethical conduct of such projects and it challenges established academic institutions, funding agencies and scientific publishers. What should be the oversight mechanism for citizen-initiated health research, how can scientists work with citizen-scientists without exploiting them and how should funding agencies determine the potential of citizen science projects? This workshop aims at providing an overview of the present state of citizen science, an outlook into the potential of citizen science in the future and the discussion of the opportunities and challenges associated with the re-emergence of this discipline for scientists, policy makers and funders.

Öffentliche Veranstaltung – Kontrolle über die persönlichen Daten und informationelle Selbstbestimmung

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Datum und Zeit: 26. Januar 2015, 16:30 – 18:30

Ort: Hotel Kreuz, Zeughausgasse 41, 3000 Bern

Im Anschluss an die Generalversammlung des Vereins Daten und Gesundheit lädt der Verein zu einer öffentliche Veranstaltung zum Thema Kontrolle über die persönlichen Daten und informationelle Selbstbestimmung ein. Die Veranstaltung ist öffentlich. Freier Eintritt.

PROGRAMM

16.30
Begrüssung und Einführung

16:40
Dr. Peter Grolimund, Senior Industry Consultant Life Sciences, Teradata
Big Data zwischen Hype und Realität – Perspektiven im Gesundheitswesen
17:00:
Prof. Thomas Gächter, Rechtswissenschaftliches Institut der Universität Zürich
Das Recht auf Kopie – Grundvoraussetzung für die informationelle Selbstbestimmung
17:20
Diskussion
Dr. Peter Grolimund, Prof. Thomas Gächter, Prof. Ernst Hafen und NR Daniel Vischer
(Moderation: Mathis Brauchbar)
18:00
Apéro