Data basis and privacy in the offshore study

The mapping takes place in two parts:

Part 1: Making data on offshore workers available from the oil companies' registers.

Part 2: Survey (completed) aimed at offshore workers directly.

Register data includes contact and identity information, transport history for operator and contractor employees, in addition to occupational history data for operator employees.

In addition, we invited the offshore workers to a separate survey which will supplement the register data made available by the oil companies. This survey was based on consent, and has its own prior approval from the Regional Committee for Medical and Health Research (REC).

The purpose of the survey

Data from the oil companies' registers and information collected in the survey will be used to study the connection between the working environment and health among offshore workers through links to regulated health registers.

Part 1: Making data on offshore workers available from the oil companies' registers.

Privacy, rights and research ethics

The use of register data made available by the oil companies for the purpose described above has been assessed and approved by the Regional Committees for Medical and Health Research Ethics (REC ref. no.: 136984) and the data protection officer at Oslo University Hospital HF (OUS) in 2022 before the Cancer Registry of Norway was administratively moved from OUS to the Norwegian Institute of Public Health. A cooperation agreement and an agreement on shared data responsibility have been entered into between the Cancer Registry and the oil companies.

REC has granted a dispensation from the duty of confidentiality for the use of health information for the purpose. Furthermore, the committee has assessed that it is not necessary to inform the offshore workers individually about the use of the health information for the purpose, as it would be very difficult in practice and require a disproportionately large effort. Information about the project has therefore been published on the project's website, and in addition information has been provided through the project's reference group (representatives from the oil industry, trade unions and the Norwegian Maritime Industry Authority), as well as via a press release to the media.

Exceptions have been made to data subjects' rights to access, correction and limitation of processing, because the processing of data is necessary for purposes related to scientific research and access will require a disproportionately large effort (cf. Personal Data Act § 17 and the Personal Data Protection Regulation Article 89 no. 1). Corresponding exceptions apply to the right to erasure and the right to data portability (cf. the Personal Data Protection Regulation Article 17 no. 3 and article 20 no. 3).

Information about offshore workers that is collected for this purpose is sensitive information that is subject to confidentiality. The information will be processed in line with the requirements for information security laid down in legislation, and will only be made available for health-related research purposes provided that the processing has a legal basis, and the necessary prior approval from REC. Birth numbers are stored separately from research data. Birth numbers are stored encrypted and replaced with a connection key that can be linked to research data. Only specially authorized persons with an official need who are subject to a duty of confidentiality have access to identifying information about you. After the collection and compilation of data has taken place, the connection key will be kept inaccessible to the researchers, so that the researchers cannot identify you in the data set.

You can complain about the processing of your information to the Norwegian Data Protection Authority and to the data protection representative at the FHI- The Cancer Registry of Norway. Further information on the procedure for complaints can be found at the Norwegian Data Protection Authority. In order to safeguard the possibility of control and inspection, the information will be stored for five years after the end of the project. This is also in line with the requirement in the prior approval from REK.

Part 2: Survey (completed) aimed directly at offshore workers

Privacy, rights and research ethics

The survey has been assessed and approved by the Regional Committee for Medical and Health Research Ethics (REK, project no.: 136984). The project group has carried out a privacy impact assessment in consultation with the privacy representative in accordance with the current GDPR regulations.

The survey is based on consent, and participation in the survey is voluntary. Participants sign the declaration of consent electronically using their Bank ID. By consenting to participation, you agree that we can use your questionnaire data for research into cancer and later other health outcomes among offshore workers. Subsequent investigations will have to be approved by REC and the Data Protection Commissioner.

You can withdraw your consent at any time and without giving any reason. If you withdraw your consent, no further research will be carried out on the information you have provided. You can also demand that your information in the project be deleted. The right to demand deletion does not apply if the information is anonymised or included in analyzes that have already been carried out.

All participants in the survey have the right to access the information recorded about themselves, and the right to have any errors in the information recorded through the survey corrected. Participants also have the right to access the security measures when processing the information, as long as access does not impair security. You can complain about the processing of your data to the Norwegian Data Protection Authority and to the data protection representative at the Norwegian Institute of Public Health. You can find more information about the complaint procedure at the Norwegian Data Protection Authority. In order to safeguard the possibility of control and inspection, the information about you will be stored for five years after the end of the project.

The information about the individual that is collected for the purpose is sensitive information that is subject to confidentiality. The information will be processed in line with the requirements for information security laid down in legislation, and will only be made available for health-related research provided that the processing has a legal basis, and the necessary prior approval from REC. Birth number will be stored separately from research data. Birth numbers are stored encrypted, and replaced with a key that can be linked to research data. Only specially authorized persons with an official need who are subject to a duty of confidentiality have access to identifying information about you. After the collection and compilation of data has taken place, the connection key will be kept inaccessible to the researchers, so that the researchers cannot identify you in the data set.

Contact information

The Norwegian Institute of Public Health - The Cancer Registry of Norway  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 heliport@kreftregisteret.no

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 The Norwegian Institute of Public Health: personvernombud@fhi.no.