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Profile of registrant

Daten und Gesundheit

Identification number in the register: 458850513870-19
Registration date: 29/06/14 16:50:57

The information on this organisation was last modified on 29/06/14 16:51:45
The date of the last annual update was 29/06/14 16:50:57


Registrant : Organisation or self-employed individual

Name/company name: Daten und Gesundheit
Acronym: DuG
Legal status: Association
Website address: http://www.datenundgesundheit.ch/?lang=en

Sections

Section: III - Non-governmental organisations
and more precisely: Non-governmental organisations, platforms and networks and similar

Person with legal responsibility

Surname, Name: Mr  Mathis Brauchbar
Position: Secretary

Permanent person in charge of EU relations

Surname, Name: Mr  Ernst Hafen
Position: Member of the Board

Contact details:

Contact details of organisation's head office: 17 Hamburgersteig 
Zürich 8008
SWITZERLAND
Telephone number: (+41) 763714871
Fax number: (+) 
Other contact information:

Goals / remit

Goals / remit of the organisation: 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 organisation's fields of interests are:
  • national
  • European

Number of persons engaged in activities falling under the scope of the Transparency Register

Number of persons: 200
Complementary information: 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

Activities

Main EU initiatives covered the year before by activities falling under the scope of the Transparency Register:


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

Fields of interest for e-mail alerts on consultations and roadmaps;

Fields declared by the organisation:
  • Education
  • Public Health

Structure

Total number of members that are natural persons: 200
Number of member organisations:
Member organisations (Number of members) :
The organisation has members/is represented in the following country(countries):
  • DENMARK
  • GERMANY
  • ITALY
  • NETHERLANDS
  • UNITED KINGDOM

Complementary information:

Networking

Information on (i) organisation's membership of any associations/federations/confederations or (ii) relationships to other bodies in formal or informal networks.





Financial data

Financial year: 10/2012 - 10/2013
Total budget: 5,000
of which public financing:
- from European sources:
- Procurement:
- Grants:
- from national sources:
- from local/regional sources:
from other sources: 5,000
- donations:
- contributions from members: 5,000
Estimated costs to the organisation directly related to representing interests to EU institutions in that year: < 50000  €
Other (financial) information provided by the organisation:


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