Information about the use of your personal health data for treatment and research
When you come to the Toulouse University Cancer Institute-Oncopole (IUCT-O), you will be asked to provide your name and certain administrative and medical details.
The Institute promises to keep these data confidential and secure, in accordance with current legislation.*
In order to ensure patients receive the best possible care, the data collected may be processed automatically (computerized record) and/or manually (paper record), but you may opt out of this if you can show reasonable justification. Only the healthcare teams involved in your treatment and the administrative services responsible for processing your file will have access to your personal data.
The healthcare professional in charge of your case may share information contained in your file with other named professionals involved in your treatment, but only if it is essential to do so in order to ensure the coordination and continuity of treatment, monitor your progress, or provide social care. After being coded to guarantee its confidentiality, data may also be used in statistical epidemiological studies or for evaluating healthcare costs.
You may ask the Institute to provide you with the data it has collected and to exercise your rights to rectify, complete, update or erase information about you. Requests relating to these data must be signed and accompanied by a valid identity document bearing your signature.
Under current legislation, requests to exercise these rights by minors (children below the age of 15) or by protected persons of full age must be accompanied by a request from that person’s legal guardian.
In order to ensure you receive the best possible care, the Institute also carries out research. Consequently, when you are in hospital or during a consultation, you may be asked to contribute to a research project by providing personal data and/or biological samples (e.g., blood samples). Current legislation allows for data and samples collected in this way to be used for secondary purposes and/or shared, either for research or to compile a collection of biological samples, unless you specifically opt out from such uses. Data used for these purposes will be coded in order to guarantee their confidentiality and stored in secure computer databases for the time required for the research. They will then be archived. If you do not want your data and samples to be used for research purposes, you can opt out of such uses without your decision having any impact on your treatment. You can exercise this right by expressing your preference to healthcare staff or to the Data Protection Officer at Toulouse University Hospital or at the Institut Claudius Regaud, whose contact details are given below.
When you are in hospital or during a consultation, you may be asked to take part in a research protocol. In such cases, a member of the team will explain the protocol to you and inform you of your rights. You can then decide whether or not to take part, without having to justify your decision. If you agree to take part, you will be asked to sign a consent form. After giving your consent, you can withdraw from the protocol at any time without having to explain your decision and without it affecting the quality of the care you are given. You also have the right to ask for research data about you to be destroyed. You can exercise these rights through the healthcare professional responsible for your treatment within the research program and/or by contacting the Data Protection Officer.
You can exercise any of your data protection rights through your attending physician and/or by writing to or emailing the Data Protection Officer at the address given below. You can also exercise your right of appeal by contacting the CNIL (France’s data protection agency) via www.cnil.fr.
If you are a patient at Toulouse University Hospital:
Data Protection Officer – DPO
Doctor Jean-Pierre Cambus
31059 Toulouse Cedex
If you are a patient at the Institut Claudius Regaud:
Data Protection Officer – DPO
M. Guillaume Jauffret
Institut Universitaire du Cancer Toulouse – Oncopole
1 avenue Irène Joliot-Curie
31059 TOULOUSE Cedex 9
Tel.: 05 31 15 57 03
* Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation), and Act N°78-17 of 6 January 1978, amended by Act n°2018-493 of 20 June 2018 on the protection of personal data.