How can I open a MIDATA account?
At the moment (2019), opening an account is tied to participating in one of our projects. The account can be opened by participating in one of the current research projects or by joining the Ally Science community. Find out more about Ally Science here.
Am I a member of a cooperative if I have an account?
No, all personal data are stored in a personal data account, regardless of membership in the cooperative. Account holders enjoy the same rights with regard to their data as cooperative members (see Articles 3, 4 and 5 of the official German or unofficial English version of the Articles of Association). When account holders become cooperative members, they participate in the control of the cooperative.
How much does it cost to open an account with MIDATA?
Opening a MIDATA account is free of charge. It includes secure data hosting, data administration and data trust services. In the future, MIDATA will offer additional services such as visualization services of personal data. These services may be subject to a charge.
Am I obliged to share my personal data on my MIDATA account with one or more research projects?
There is no obligation to share data with research partners at any time. If you have opened your account in connection with a particular research project, you can stop the transfer of data to the research partner at any time.
Will I be reimbursed if I make my data available for research purposes?
MIDATA cooperatives are non-profit organizations that operate without financial incentives, as does organ or blood donation. Value for research and progress arises from collective data analysis.
The collective “donation” of personal health data contributes significantly to researching new and effective treatments for various diseases. Compensation models create false incentives (it may attract people who are not affected or tempt people to report data too frequently or incorrectly).
How can I become a member of the MIDATA cooperative?
You can submit a written application to become a member of the cooperative.
What rights do I have as member of the cooperative?
You receive the right to vote and can make use of it at the cooperative-s General Assembly. This is analogous to becoming a shareholder of a company, with the distinction that each cooperative member has one vote.
As a cooperative member you have, among other things, the right to elect the members of the administration, to vote on amendments to the Articles of Association and MIDATA guidelines or to take decisions on the use of potential profit. Read more about it in the MIDATA Articles of Association (original version, unofficial English translation available here).
How much does a membership cost?
There is a one-time fee of CHF 40.
Do I get a MIDATA account as a cooperative member?
Not necessarily. Opening a MIDATA account currently (2019) only takes place in connection with participation in one of the ongoing projects. However, if you cannot or do not want to participate in a project, you can still become a cooperative member of MIDATA.
I live abroad, can I still become a member of the MIDATA cooperative
Generally, no. However, there are exceptional cases in which the MIDATA board approves an application. One example: You have temporarily moved your residence abroad for professional reasons but plan to return.
How can I resign from the cooperative?
You can cancel your membership at any time in form of a written notice. The membership then expires at the end of the current calendar year, provided that the termination has taken place by 30th of September. If the termination takes place in the months of October, November or December, it will only become valid at the end of the following calendar year.
Can I keep my MIDATA account when I leave the cooperative?
Yes. Did you perhaps open a MIDATA account while participating in a project and at the same time became a member of the MIDATA cooperative? If you cancel your membership, you lose your right to vote. This means that you can no longer influence the further development of the MIDATA cooperative. Nonetheless, you can use your personal MIDATA account without any restrictions.
Will I be reimbursed the membership fee in the event of withdrawal?
The membership fee will not be refunded upon resignation. The one-time membership fee is intended to partially cover the administrative expenses (revision, protocol, holding of the assembly, etc.) of the MIDATA cooperative.
Do the members of the cooperative receive a profit participation in the event of net profit?
The cooperative does not pay any dividends and does not grant any other financial compensation to its members or account holders. The net profit is to be used to improve the quality and quantity of the services offered with and through the MIDATA platform, to ensure financial sustainability and to pursue the cooperative’s charitable purposes (Article 2 MIDATA Articles of Association (original version, unofficial English translation available here)).