Population surveys on health and quality of life

More and more people are living longer after cancer treatment, and many experience late effects of the treatment. Today, we know little about why this happens, and who suffers from reduced quality of life. In order to gain knowledge that can help improve cancer patients' quality of life, the Cancer Registry of Norway will invite both cancer patients and people without cancer to population-based health surveys.

Background and objectives

Three out of four now survive their cancer for at least five years, and many live with late effects after treatment. These are ailments that patients themselves must describe, and the occurrence of late effects is an important part of how good the cancer treatment is. The Cancer Registry of Norway will therefore collect patient-reported results through population surveys on health and quality of life.

People with cancer and people without cancer are invited to population surveys on health and quality of life where they are asked to complete a questionnaire. In order to compare the results from cancer patients with the condition in the general population, questionnaires must also be sent out to people who have no cancer diagnosis.

The goal of the population surveys is to get a better measure of how good cancer treatment is. It is not only important to know how many people undergo surgery for a condition and how long the patients survive, but also how patients feel after cancer treatment. Within each type of cancer, hospitals should no longer only be compared on, for example, the number of surgeries and survival, but also on the patients' self-described health and quality of life. If the proportion who undergo surgery is the same and survival is just as good, but one hospital has a considerably higher proportion of patients with a given ailment, this may mean that the treatment at that hospital is nevertheless not optimal.

Another objective of the population surveys is to learn more about the prevalence of adverse effects/late effects, in the hope that more gentle treatment will be developed, and possibly specific prevention against such injuries. Therefore, collected data may also be disclosed to research projects that have prior approval from the Regional Committee for Medical and Health Research and adequate authorisations. For participants with a cancer diagnosis, the information from the questionnaire can be provided to the treating doctor/hospital for quality assurance and use in patient follow-up, and recorded in the patient records. The information may not be used by doctors/hospitals for other purposes without a legal basis for processing.

Voluntary participation and the possibility to withdraw one's consent

All participation is voluntary and consent-based, and there are no negative consequences if you choose not to participate.

Participants may withdraw their consent at any time and without giving reasons. In such cases, the information provided will be deleted, unless the information has already been included in analyses or disclosed to research projects and used in scientific publications. You can withdraw your consent by visiting here or contacting the Cancer Registry's telephone line for population and questionnaire surveys on health and quality of life (22 45 13 00, key choice 5).

What happens to the information about participants in the population surveys?

The information should only be used for research on health problems, cancer and quality assurance of the health service. We process the data in accordance with the principles set out in the General Data Protection Regulation with regard to the lawfulness of processing, data minimisation, purpose limitation, storage limitation and confidentiality. The consideration of confidentiality is safeguarded by separating national identity numbers and other directly identifiable personal characteristics and storing them encrypted and separate from health information.

Participants have the right to access what information is registered about them, and to have any errors corrected. They also have the right to access who has had access to, or been provided with, health information about them.

The information may be stored for as long as necessary to achieve the purpose of the survey.

Privacy

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 the data has a lawful basis and complies with the principles of Article 5 of the General Data Protection Regulation. This investigation is based on consent and has 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 survey. The regulations shall ensure that the 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.

Participants have the right to complain about the processing of your information to the Data Inspectorate.

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.

Sharing of data and transfers abroad

By participating in the survey, you also agree that the information can be used within the framework of the consent and the purpose of the survey. The results of the processing shall not have a greater degree of personal identification than is necessary for the purpose in question.

For people who have been diagnosed with cancer, we may share the information with your treating physician or hospital for quality assurance and use in patient follow-up. The recipient of data from the survey must be able to demonstrate which provisions of Article 6 and Article 9 of the General Data Protection Regulation and, if applicable, legislation or regulations, give the recipient access to process the data. When making information available for use in medical and health research, the recipient must also 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.

Information from the questionnaire, in which directly identifiable personal data has been removed, may be transferred abroad as part of international research cooperation. This may also extend to non-EU/EEA countries and international organizations, provided that the principles and terms of the GDPR are met. Oslo University Hospital HF at the Cancer Registry of Norway will take measures to ensure that the information is processed in accordance with the principles and conditions that follow from the EU's General Data Protection Regulation. The code linking individuals to personally identifiable information will not be transferred.