This form concerns the personal data processed in the context of the study. The investigator(s) will take all necessary measures to protect the confidentiality and security of your personal data, in accordance with the General Data Protection Regulation (GDPR - EU 2016/679, Law of 27 April 2016) and the Law of 30 July on the Protection of Individuals with regard to the Processing of Personal Data.
1. Who is responsible for the data?
The data controller is the promoter of the study, namely the University of Liège, whose headquarters are located at Place du 20 août, 7, B-4000 Liège, Belgium.
2. What data will be collected?
The investigator will collect socio-demographic data (e.g., age, gender, country of residence, nationality, professional or personal experience with patients with altered consciousness, profession, religious beliefs). He/she undertakes to collect only the data strictly necessary and relevant to the objectives pursued.
3. How will the data be collected?
The data will be collected by the survey investigators after the questionnaires have been completed. A study-specific code number will be assigned to each participant when completing the online questionnaires.
4. How long will this data be kept and by whom?
All the data collected during this study will be associated with an identification number (pseudo-anonymization technique) that will be created by the online questionnaire site. This data will be kept by the proponent and his team for the time required for the collection, recording, consultation and analysis of this data as well as the time required for the writing and publication of scientific articles, for a maximum period of 7 years. The data will be stored in a password-protected folder on the university server and/or on a password-protected university computer. If you withdraw your consent to participate in the study, in order to ensure the validity of the research, the encrypted data up to the time of your interruption will be retained. No new data can be transmitted to the promoter.
5. Will these data be made anonymous or pseudo-anonymous?
Investigators (researchers involved in the study) have a duty of confidentiality regarding the data collected. We will collect responses from participants anonymously and will not collect names, but it cannot be completely excluded that individuals can be identified, taking advantage of the information they provide. For the research data manager designated by the sponsor, the data transmitted does not allow you to be identified. This manager is responsible for collecting the data collected by all investigators involved in the research, processing it and protecting it in accordance with legal requirements relating to the protection of privacy.
6. On what legal basis will these data be collected and processed?
By agreeing to complete the questionnaire, you agree to the acquisition and use of personal data. By agreeing to participate in the study, you agree that the personal data described in point 2 may be collected and processed for the research purposes described in point 7.
7. For what purpose(s) will this data be collected?
The data collected will be used for research purposes on the beliefs and needs of health care teams and families regarding pain management in patients with impaired consciousness.
The results of this study will be systematically anonymized before any dissemination. They can be used to:
- Doctoral theses, master's theses and practical work for undergraduate and graduate students (including students from outside the ULiège who come to study there for a specified period of time)
- Publication of articles presenting the results of the study in specialized or popular journals;
- Communication of the results of the study during congresses and/or any activity allowing their dissemination;
- Use of results in university teaching;
- Reuse of the data collected for the purpose of conducting complementary studies in the same field of research.
8. Who will be able to access and use this data?
The personal data may be consulted and used by the sponsor and the members of the research team involved in the study(s) whose names appear in the signature of this document. The (coded) research data may be transmitted to Belgian or other regulatory authorities and to the relevant ethics committees.
9. Will this data be transferred to other researchers?
Research data (coded) may be shared with other physicians and/or organizations working in collaboration with the sponsor. It may also be transmitted to other sites of the promoter in Belgium and other countries where the standards of personal data protection may be different or less stringent. As explained above, the transmitted data will be encrypted.
10. What are the rights of the person whose data is being used?
As provided for in the GDPR (Art. 15 to 23), each person concerned by the processing of data may, by proving his identity, exercise a series of rights:
- Obtain, free of charge, a copy of the personal data relating to her processed in the context of the present study(s) and, where appropriate, any available information on their purpose, origin and destination;
- Obtain, free of charge, the rectification of any inaccurate personal data relating to her and to have incomplete data completed;
- Obtain, subject to the conditions provided for by the regulations and free of charge, the erasure of personal data concerning her;
- Obtain, subject to the conditions provided for by the regulations and free of charge, the limitation of the processing of personal data concerning her;
- Obtain, free of charge, the portability of the personal data concerning her and that she has provided to the University, i.e. to receive, free of charge, the data in a commonly used structured format, provided that the processing is based on consent or a contract and that it is carried out using automated processes;
- Withdraw its consent without any justification being necessary. This withdrawal automatically leads to the destruction, by the researcher, of the personal data collected;
- File a complaint with the Data Protection Authority (https://www.autoriteprotectiondonnees.be, contact@apd-gba.be).
11. How to exercise these rights?
To exercise these rights, you may contact the person(s) responsible for the research project mentioned in the information form, and/or by e-mail indicated on the home page of the questionnaire or the University Data Protection Officer, either by e-mail (dpo@uliege.be) or by letter dated and signed at the following address:
Université de Liège
M. le Délégué à la protection des données,
Bât. B9 Cellule "GDPR",
Quartier Village 3,
Boulevard de Colonster 2,
4000 Liège, Belgique.