Take part in research

The ability to diagnose and treat diseases has advanced significantly in recent decades. These advances are the result of lengthy medical research in which many generations of physicians, researchers and patients have participated.

Informed Consent

An important part of research relies on patients' personal health data contained in medical records such as results of laboratory tests, therapies performed or genetic predispositions. Equally important for research are all biological material collected in the hospital and no longer needed for treatment. This residual material may be blood, urine, or tissue samples, for example.

The EOC has developed a consent document for the use of personal health data and/or residual biological material samples for research purposes.
The patient can freely decide whether to grant consent, and his or her decision has no influence on the care or services provided within the hospital facility.
Consent given may subsequently be withdrawn at any time without explanation.

Consent for the use of personal health data and/or residual biological material samples for research purposes may also be given by patients who are not capable of discernment, children and adolescents in accordance with current regulations.

FAQ

How can you contribute to research?

You may make your contribution by agreeing that your personal health data (including audiovisual data such as photos, video footage, audio recordings) and residual samples of biological material may be stored, transmitted to third parties, and reused for research purposes, only after approval by the relevant Ethics Committee. The terms "personal health data" and "samples of biological material" refer here to those that have already been collected at the hospital in the past, but also to those that will be collected to treat you during your current and future hospitalizations or outpatient consultations.

Your consent is voluntary. It remains valid indefinitely or until revoked. You have the right to revoke your consent at any time and without having to justify your decision. To do so, simply inform the EOC General Consent Office whose contact information is provided at the end of this document. After consent is revoked, any personal health data and biological material samples retained may no longer be used for new research projects.

If you do not sign the consent statement or if you mark the "NO" box when you sign this statement, your clinical data and/or biological samples cannot be used for research.

Your decision to deny or revoke consent has no influence on your medical treatment.

How are your personal health data and biological material samples protected?

The processing of your personal health data is carried out in accordance with this policy and in compliance with the provisions of the Data Protection Act of the Canton of Ticino (LPDP), the Federal Data Protection Act (DPA), and relevant international standards.

Only authorized employees of the Hospital, such as physicians, may access your unencrypted health data and biological samples. Your biological samples are stored in biobanks: these are facilities that ensure the collection and storage of biological samples and related data. Biobanks are subject to security and quality standards.

To be used for research projects, your personal health data and any stored samples of biological material will be coded. "Encoded" means that all personal information, such as name or date of birth, is replaced by a code so that your identity cannot be recognized. The key that links the code to the name is kept securely by a person who is not participating in the research project. People who do not have the code cannot identify you. Audio-visual data, personal data that may allow the person to be uniquely identified by voice or body features (body shape, moles or tattoos), will be carefully processed so that the person cannot be identified (obscuring part of the images or altering the voice).

Your rights regarding the protection of your data in the research setting are the same as in the treatment setting, including your right of access to it.

Who can use your personal health data and biological material samples?

Personal health data and, if collected, samples of biological material, may be used by authorized researchers for research projects conducted in the Hospital or in collaboration with other public institutions (such as other Hospitals or Universities), or private facilities (such as Clinics or pharmaceutical companies), in Switzerland and abroad.

Projects may also include genetic analysis for research purposes. Research projects using your personal health data and biological material samples must be approved by the appropriate Research Ethics Committee. In order to make health data or biological samples available for research projects abroad, it is necessary to ensure that the same data protection regulations that apply in Switzerland are applied.

Will you be informed of the results of the research?

Research conducted with your personal data and biological material samples generally does not provide participants with individual information about their health. In rare cases, the results of the research could be relevant or impact your health status or require clinical intervention. In these cases you would be informed of the results. If you do not wish to receive such information, please feel free to contact the EOC's Office of General Consent, whose contact information can be found at the end of this document.

What happens if you withdraw your consent?

If you withdraw your consent, your health data and biological samples intended for research will be destroyed, in accordance with legal regulations. Your biological data and samples will therefore no longer be available for new research projects. However, this does not apply to data and samples that have already been used.

Will there be additional costs or economic benefits for you?

There will be no additional cost to you or your health insurance company. The law prohibits the trading of data and samples. Therefore, there will also be no financial benefit to you or the Hospital.

Contact

If you have further questions or wish to withdraw your consent, please do not hesitate to contact us:

EOC General Management
Academic Training, Research and Innovation Area
Office of General Consent
Viale Officina 3, 6501 Bellinzona
Tel: +41 (0)91 811 12 12
E-mail: [email protected]

Baroum Mrad (DPO-HSG)
Head of Data Protection and Privacy Service
EOC General Management
Viale Officina 3, 6501 Bellinzona
Tel: +41 (0)91 811 12 55
E-mail: [email protected]

The English version of this page was created with the aid of automatic translation tools and may contain errors and omissions.
The original version is the page in Italian.