Besides patient care, education and training, scientific research is also part of the core tasks of a university hospital.
When you take part in scientific research, we process confidential and sensitive data. We attach great importance to properly protecting your data and carefully informing you about its processing.
Types of research
Scientific research at UZ Gent includes research:
- To improve knowledge about how the body works, about diseases and their treatments
- To develop new treatments
- To improve existing treatments
- In the context of training healthcare providers such as master's theses and doctoral theses
- To the quality of care at the request of the government
- Post-mortem research, if you or your loved one does not oppose it
Data collection
Scientific research is conducted in various ways:
- With existing data collected for your care (retrospective research)
- With new data collected from you (prospective research)
- With a combination of existing and new data
- With body material (tissues, cells, blood, urine...) that remains after a diagnostic examination or after a procedure (residual tissue). That residual material can be stored in the biobank. If you do not want this, you can object to it via your treating physician or the chief physician.
Scientific research at UZ Gent is only possible after prior assessment and positive advice from a Medical Ethics Committee.
Participation
You can participate in scientific research in various ways:
- Your treating physician may ask you to take part in a study specifically aimed at treating your clinical picture. Your doctor will explain to you both orally and in writing the purpose of the research, its benefits and any drawbacks for you as a patient. You will then be asked if you still want to participate. If so, you must give your written consent. You may always refuse to participate in the study, without this affecting your further treatment.
- You either ask your treating physician yourself to participate in research or you voluntarily subscribe to a general call for participation in scientific research in our hospital.
- In scientific research where your existing data or stored residual material is used (so-called retrospective research), your data are either pseudonymised or completely anonymised.
- Pseudonymisation or de-identification means that your most important personal data (such as your name, address, national register number, etc.) are replaced by a code, so that the researcher cannot simply see these personal data. Any feedback to your person remains theoretically possible. You will be informed about this in advance.
- In scientific research with completely anonymised data, no one can ever link the data back to you. We do not need to ask your permission for this. In this case, too, the researcher must obtain approval from the Medical Ethics Committee before the research can start.
- You will be informed via the My UZ Gent patient portal about any use of your data for scientific research purposes. You can find this information by clicking on the ‘clinical trials’ link. There, you also have the option to opt out of future use of your data for these purposes.
- In the context of studies conducted at the request of the government for research into the quality of care, medical data may be used without the patient's explicit consent. If you do not wish to participate in such studies, you must inform your doctor or the hospital's chief medical officer (ha@uzgent.be) in writing.
- In certain cases, it may be useful for the doctor to perform an autopsy on the body after death. This way, we can get a better understanding of the cause of death. In any case, an autopsy is done with respect for the deceased. If, as a patient, you do not want such an examination to take place after your death, you or your loved one can make this known to the attending physician or to the chief physician (ha@uzgent.be).
More information
Read the brochure (in Dutch, English or French) or watch the video below, an initiative of the Health, innovation and research institute in collaboration with PAWO.
Patients' medical data allows us to study diseases and develop new treatments. You too can contribute to scientific research by sharing your medical data. As you can see in the animation video, we always respect your privacy when doing so. The video is an initiative of Glioma MR Imaging 2.0 and is available in 17 languages.