In addition, we invite offshore workers to participate in a separate questionnaire survey that will supplement the register data made available from the oil companies. This survey will be based on informed consent and has approval from the Regional Committee for Medical and Health Research (REC). More information about the survey may be found here.
Data from the oil companies and data from the survey will be used to study the relationship between working environment and health among offshore workers through links to regulated health registries.
Privacy, rights, and ethical matters
The use of data from the oil companies as described above, has been assessed and approved by the Regional Committees for Medical and Health Research Ethics (REC ref. no.: 136984) and the Ombudsman at Oslo University Hospital HF (OUS). A Collaboration Agreement and a Joint Data Controller Agreement have been entered into between the Cancer Registry of Norway and the nine oil companies.
REC has granted exemption from the duty of confidentiality for the use of health information according to the purpose of the project. Furthermore, REC has considered that it is not necessary to inform offshore workers individually about the use of the health information as it will be very difficult and require a disproportionate amount of effort. Information about the project will instead be made available on the project's website and be distributed through the project's reference group (representatives from the oil industry, trade unions and the Petroleum Safety Authority Norway), as well as via press releases to the news media.
Exceptions have been granted by the REC with respect to the subjects' rights to access, rectification, and restriction of data-processing. This is because the processing of data is necessary for purposes related to the scientific research and access will require a disproportionate amount of effort (cf. Section 17 of the Personal Data Act and Article 89 (1) of the General Data Protection Regulation). Similar exceptions apply to the right to erasure and the right to data portability (cf. Article 17 (3) of the General Data Protection Regulation and Article 20 no. 3).
The information about offshore workers collected for these research purposes is sensitive information that is subject to the duty of confidentiality. The data will be processed in accordance with the information security requirements enshrined in the legislation. The data will only be made available for health-related research purposes provided that the processing has a legal basis, and necessary prior approval from REC. National identity numbers will be stored separately from the research data. The national identity number is stored encrypted and will be replaced with a linkage key that can be linked to research data. Only specially authorized persons with service needs, who are subject to a duty of confidentiality, will have access to identifying information about you. After the collection and compilation of data have taken place, the linkage-key will be kept inaccessible to the researchers, so the researchers cannot identify you in the dataset.
You may complain about the processing of your data to the Norwegian Data Protection Authority and to the Ombudsman at the OUS-The Cancer Registry of Norway. More information about the procedure for complaints can be found here. To ensure control and inspection possibilities, the information will be stored for five years after the end of the project end date. This is also in line with the requirement in the pre-approval from REC.
Oslo University Hospital HF v/Kreftregisteret is the institution responsible for the research and for the processing of information in the project.
If you have any questions about the project, please contact us at firstname.lastname@example.org
NB: do not send sensitive information such as diagnoses or national identity numbers by e-mail.
If you have questions about the privacy and data security of the project, you may also contact the Data Protection Officer at Oslo University Hospital: email@example.com