Eine Ärztin erklärt einer Frau etwas auf einem Tablet

Information for patients

During your treatment in the clinics of Bochum University Medicine, data on your state of health and the therapies used will be routinely recorded. In some cases, blood or tissue samples will also be taken from you. These data and samples are of great value for medical research. They help to better understand diseases and improve future diagnosis and treatment options.

With your consent, this data and material can be made available for research throughout Germany. In this way, you actively support the development of new and more effective treatment methods and contribute to improving medical care in Germany.

Studentierende der medizinischen Fakultät der Ruhr Universität Bochum schauen sich Daten an einem Computer an — © RUB, Marquard

How does it work?

If you decide to use your care data, your personal data such as name, date of birth and address will be pseudonymized in our trust office, i.e. they will be replaced by a combination of characters. This protects your privacy, as the data can no longer be directly attributed to you. Before the data is used for research purposes, an additional pseudonymization is carried out to further increase security.

Your rights as a patient

Your consent to the use of the data is completely voluntary. If you decide not to consent or withdraw your consent later, you will not suffer any disadvantages. You can find out more about this in the following explanatory video, which illustrates the process and objectives of the Medical Informatics Initiative (MII):

Explanatory film

Patient consent in the BMBF's medical informatics initiative

To the video

FAQ

How can I support medical research?

After you have been fully informed about the use of your data, you can consent in writing to the use of your data for research purposes by signing the Broad Consent. This consent is voluntary and has no effect on your treatment. You can withdraw your consent at any time without giving reasons at the clinic where you gave your consent.

How do I as a patient benefit from donating my data?

By signing this form, you are helping to network patient data and make it available for research. The knowledge gained will flow directly into patient care. This leads to faster, more precise diagnoses, reduces adverse drug reactions and avoids unnecessary duplicate examinations. You also benefit from more individualized treatment approaches that can increase treatment success and minimize side effects.

How long will the data be stored?

With your consent, your treatment data will be collected for the next five years and stored for 30 years. During this time, it will only be used for research purposes. You can withdraw your consent at any time.

How is my data protected?

We place the highest value on the protection of your data. All personally identifying information is pseudonymized so that it cannot be directly attributed to you. This data is never passed on to researchers or third parties. Only pseudonymized data is released for research projects after careful review by an ethics committee and an independent panel of experts. You can see which research projects are using your data at any time on the Medical Informatics Initiative website:

www.medizininformatik-initiative.de/datennutzung

Further information

Here you can find additional information and resources:

Patient page of the Medical Informatics Initiative: To the Website
Website of the Medical Informatics Initiative: To the Website
Website of the SMITH consortium: To the Website
Research Data Portal for Health: Here you can see which research projects are currently being carried out with the data collected as part of the Medical Informatics Initiative. You will also find information on completed projects and the results achieved. To the Website

Consent and revocation

With your consent, you allow the RUB UK hospital where you are being treated to use your data and biomaterials for medical research purposes. All RUB UK clinics and the RUB Faculty of Medicine work with a common, central infrastructure for the secure management of patient data. The protection of your privacy is our top priority.

Under data protection law, the participating institutions of the UK RUB and the Faculty of Medicine are responsible for the central storage and management of your data. You have the option to withdraw your consent at any time. We recommend that you contact the hospital where you originally gave your consent.

You can withdraw your consent at any time without any disadvantages for yourself, either partially or completely. All you need to do is send an informal declaration to the hospital providing treatment.