Information on the further use of health-related data and samples for research purposes
Advances in medicine depend on scientific research involving doctors, scientists and patients. At the University Psychiatric Clinics Basel (UPK Basel), we therefore see ourselves not only as a centre for treatment, but also as an important link between research and patients. To carry out research, researchers need health-related data and biological material (samples) from healthy and ill people. We rely on your support to gain new insights and further improve diagnostic and treatment options.
The further use of routinely collected patient data and samples for research purposes requires the consent of patients. The consent form, also known as General Consent, is completed when treatment begins at UPK Basel. You are free to decide whether or not your data and samples may be used for research.
How are your health-related data and samples protected?
Your data are processed and protected at UPK Basel in accordance with the applicable legal requirements. Only authorised UPK Basel staff, such as doctors and psychologists, have access to unencrypted data from your medical records and to your unencrypted samples.
If your data and samples are used for research projects, they will be coded or anonymised. Coded means that personal information, such as your name or date of birth, is replaced with a code. The key linking the code to your identity is stored securely by a person who is not involved in the research project. People who do not have access to this key cannot identify you. If data and samples are anonymised, there is no key that can be used to link them back to you.
Who may use your health-related data and samples?
Your data and samples may be made available to authorised researchers at our hospital for research projects. They may also be used in research projects carried out in collaboration with other public or private institutions, such as other hospitals and universities. Research projects may be conducted in Switzerland or abroad and may include genetic analyses. Research projects carried out abroad must meet at least the same data protection requirements as those applicable in Switzerland. All research projects are subject to review by the relevant ethics committee. The committee assesses whether the project and its implementation are scientifically and ethically justifiable and whether the applicable legal requirements, particularly those relating to data protection, are met.
Research Results
Research projects involving data and samples generally do not produce information that is directly relevant to the health of an individual. However, if a finding that is significant for your health is identified and a medical intervention is available, UPK Basel may contact you.
Providing your data and samples for research will not result in any additional costs for you or your health insurance provider. By law, it is not permitted to generate financial gain from your data and samples. Consequently, neither you nor UPK Basel will gain or lose financially as a result.
Your Rghts
Your consent is voluntary. It remains valid indefinitely unless you withdraw it. You can withdraw your consent at any time and without giving a reason by contacting generalkonsent@upk.ch. After you withdraw your consent, your data and samples will no longer be made available for future research projects. Your decision will have no impact on your medical treatment.
If you have any further questions or would like more information, please contact generalkonsent@upk.ch.