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    Profile of registrant

Daten und Gesundheit

Identification number in the register: 458850513870-19
Registration date: 29/06/2014 16:50:57

The information on this entity was last modified on: 07/07/2015 11:36:33
The date of the last annual update was: 07/07/2015 11:36:33
Next update due latest on: 07/07/2016

    Registrant : Organisation or self-employed individual

Daten und Gesundheit

DuG

Association

    Section of registration

III - Non-governmental organisations

Non-governmental organisations, platforms and networks and similar

    Contact details

Hambergersteig, 17
Zürich 8008
SWITZERLAND

(+41) 763714871

    Person with legal responsibility

Mr  Mathis Brauchbar

Secretary

    Person in charge of EU relations

Mr  Ernst Hafen

Member of the Board

    Goals / remit

The goal of the Association is to promote the debate on the collection, storage and use of individual medical and health data in Switzerland. This includes the analysis and discussion of the scientific, ethical, societal, legal and political aspects of the use of personal health data for personal health and medical research.

  • European
  • national

    Specific activities covered by the Register

Horizon2020
mobile Health


 

No

No

No

No

No

Participation in the Health Forum Gastein 2013
Application of H2020 Proposal on the formation of health data cooperatives
Symposium on Data and Health: http://www.datenundgesundheit.ch/2013/10/29/vortrage-des-symposiums-data-and-health/?lang=en

    Number of persons involved in the activities described in the box above

25%: 3

3

0.8

DATA ON HEALTH AND DISEASES
In the light of the rapid progress in genomic analysis and information technologies, personal data relevant to the health and disease of individuals can be obtained and analyzed with increasing ease and efficiency. These data are important for individuals since they help to predict predispositions to diseases and the potential side effects of drugs. Moreover, these data are important for progress in medicine. The analysis of datasets from hundreds of thousands of individuals and the correlations with the occurrence of diseases benefits personalized prevention, the diagnosis and treatment of diseases, as well as medical research. Due to the value of health data for healthy individuals and patients, these data should be accessible for medical research and society at large. At the same time, personal data need to be protected in order to prevent misuse and to stay in possession of the owner who contributes the data.

INFORMATION AND RESPONSIOBILITY
ICT companies and various commercial databases offer services to store personal health data. Globally, the interest in genomic and health data, as well as the amount of data obtained from the individual usage of smart phones (currently there are more than 40’000 Health Apps available) is growing rapidly. At the same time, mistrust and privacy concerns are on the rise: Healthy individuals and patients hesitate to entrust commercial enterprises with their personal data. Because of the rapid growth and increasing complexity of health information, the accurate recording, safe storage, visualization and accessibility of health data has become an urgent issue for both society and the healthcare system. The World Economic Forum in Davos regards the control of health data as a competitive advantage.

ASSOCIATION DATA AND HEALTH
The Association „Data and Health“ was founded in July 2012 and is in its initial start-up phase. The goal of the Association is to promote the debate on the collection, storage and use of individual medical and health data in Switzerland. This includes the analysis and discussion of the scientific, ethical, societal, legal and political aspects of the use of personal health data for personal health and medical research.

The Association will also promote the creation of a Swiss Health Data repository organized as a cooperative (Genossenschaft). Members’ personal health and medical data are stored, managed and used in such a way that their privacy is protected. The cooperative will serve its contributing members by securely storing their health records, which members can also use for their own healthcare. Additionally, the cooperative’s health database is of general importance for the health of society, for biomedical research, for healthcare practitioners, as well as for economic development.

    Persons accredited for access to European Parliament premises

No accredited persons

    Fields of interest

  • Education
  • Public Health

    Membership and affiliation

200

  • DENMARK
  • GERMANY
  • ITALY
  • NETHERLANDS
  • UNITED KINGDOM

    Financial data

01/2014  -  12/2014

< 9,999 €

5,000 €

0 €

No funding received from the EU institutions during the last closed financial year.

5,000 €

5,000 €

    Code of conduct

By its registration the organisation has signed the Transparency Register Code of Conduct.

The organisation has also declared to be bound to the following other Code:
yes