Privacy in the population surveys
The Cancer Registry of Norway invites both cancer patients and people without cancer to provide information about their own health and quality of life for use in research and quality assurance. This is partly to obtain more knowledge about the extent of late effects, and about how the patients themselves experience cancer treatment and the impact on quality of life.
In order to carry out such investigations, we are obliged to ensure that the information collected, processed and stored in a proper manner, including preventing unauthorized persons from gaining access to the information.
Oslo University Hospital, represented by the Cancer Registry of Norway, is responsible for research and data controller for the processing of information in the survey.
The Data Controller is responsible for ensuring that the processing of your data has a lawful basis and complies with the principles of Article 5 of the General Data Protection Regulation.
The investigations are based on consent and have a lawful basis in Article 6(1)(a) of the General Data Protection Regulation and Article 9(2)(a).
The Regulations relating to population-based health surveys also apply to the collection and further processing of health data in the surveys. The regulations shall ensure that data processing is carried out in an ethical manner, safeguards the individual's privacy, and that the information is used for the benefit of the individual and society.
When making information available for use in medical and health research, the recipient must have prior ethical approval from the regional committee for medical and health research ethics. The Data Controller may impose conditions for the disclosure, including conditions that information shall be returned to the survey.
Extensive technical measures have been implemented to ensure that you are not recognizable from the results of the published survey. Results will be published either at group level or for such a large geographical area that the risk of backdoor identification is minimal.
Your rights
We process your data in accordance with the principles of the EU General Data Protection Regulation with regard to the lawfulness, data minimisation, purpose limitation and confidentiality of processing.
You have the right to access what information is registered about you, and you have the right to access who has had access to, or been provided with, your health information. You also have the right to demand correction or deletion of incorrect information about yourself.
You may at any time, without giving reasons, and without prejudice to your further processing, withdraw your consent to participate in the survey on minside.kreftregisteret.no.
You have the right to complain about the processing of your information to the Data Inspectorate.
The Cancer Registry of Norway will publish regular information about the examinations and how health information collected in the surveys is used.
You can download the information leaflets for our population-based health surveys for the various types of cancer here:
Information letter, population survey on prostate cancer (Norwegian only)
Information leaflet, population survey on breast cancer (Norwegian only)
Information leaflet, population survey on colorectal cancer (Norwegian only)
Information leaflet, population survey on melanoma (Norwegian only)
Information letter, population survey on lung cancer
You can find additional information about privacy in the research projects by following the links to the projects' websites:
Research project on health, bowel function and quality of life
