Although the Cancer Registry Act (KRG) has only come into force on 01.01.2020, cancer registries in Switzerland have a history of more than 50 years. The first cancer registry was founded in Basel in 1969.
Processing of Cancer Registry data
The data is collected in each competent cantonal or regional Cancer Registry (cancer incidence in adults from 20 years of age) or the Swiss Childhood Cancer Registry (cancer incidence in children and adolescents up to 20 years of age). The data transferred by the reporting doctor to the competent Cancer Registry are registered by the Cancer Registry after the lapse of a three month period of restriction (see also: Patients' rights in Cancer Registration). In order to ensure that the patient is allocated to the correct canton, the address is aligned with the aid of the cantonal and municipal Register of Inhabitants (verification of the principal residence). The competent cantonal Cancer Registry may also ask the reporting doctor for any missing information. The causes of death statistics from the Federal Statistical Office (FSO) and the medical statistics from the hospitals are used to check whether any incidences of cancer have not been reported so that these can be retrospectively collected.
The status in life of the registered cancer patients is checked by the Federal Central Compensation Office (CCO). Every year the cantonal Cancer Registry reports the registered incidences of cancer to the National Cancer Registry (NCR). Prior to the transfer of the data, to the National Cancer Registry the data are anonymised (they can no longer be traced to an individual person), since they are no longer required for analysis.
Patients' Rights in Cancer Registration
All patients (or persons authorised to represent them) must be informed both orally and in written form about their rights, the measures taken to protect their personal data and the purpose of cancer registration. The patient receives an information brochure and oral information.
All patients (or persons authorised to represent them) have the right to obtain confirmation as to whether and, if so, what information is recorded about them. An application can be submitted to the responsible cancer registry (right of access).
Furthermore, all patients (or persons authorised to represent them) have the right to object to the registration of their data (right of objection). In order to give patients (or the persons authorised to represent them) sufficient time to think about whether or not they agree to their data being registered, a waiting period has been defined by law. The waiting period is three months and begins on the day on which the patient (or the person entitled to represent the patient) has been informed about the cancer registration. During this time, the cancer registry in charge may not register any reported data.If a patient has lodged an objection with a cancer registry, the data of the person concerned will either not be registered at all or, in case the objection has been received after the waiting period, anonymised for statistical purposes. Anonymisation means that the data can no longer be assigned to any person. The period of validity of an objection is unlimited and also applies beyond death if the objection was not withdrawn by the patient at a later date.
Data protection is governed by the standards and laws applicable in Switzerland. The data collected are treated in the strictest confidence. The regulations for the storage and processing of the data are laid down in the Cancer Registration Act and in the Data Protection Act. These specify, for example, how the information is stored, who may use the information and when the information is erased. In addition, the employees at the Cancer Registries are subject to a duty of non-disclosure. Only they may process and register personal data (e.g. surnames, forenames, residential address). For example, health insurance companies, insurance companies and employers have no access to this information.
Publication of the Cancer Registry data – The National Cancer Statistics and Health Reporting on Cancer Incidence
National Cancer Statistics
National Cancer Statistic consists of a cancer monitoring system (available annually online) and the Cancer Report (published on a five-year cycle in printed form). In the context of the Cancer Registration Act, monitoring is understood to mean observing without assessing. Accordingly, cancer monitoring is the routine, standardised observation of data on cancer incidence in Switzerland.
The National Cancer Report serves to explain more fully the incidence of cases of cancer and for this reason, its content is based on the annual monitoring system. The purpose of the National Cancer Report is to allow scientists, clinical practitioners and politicians/the State, together with the public concerned, to examine the incidence and progression of cancers in terms of time and space. In the future, the report will additionally offer the possibility of using these observations for the diagnosis and selection of treatment options for care planning in different groups of patients.
The responsibility for the implementation of the National Statistic lies principally with the Federal Statistical Office (FSO) in collaboration with the National Cancer Registry (NCR) and the Swiss Childhood Cancer Registry.
Health reporting on cancer incidence
Health reporting on incidences of cancer will result in the future supplement of the National Cancer Statistic. In the context of the CRA health reporting on the incidence of cancer provides evaluative observations and makes any applicable recommendations.
Health reporting on the incidence of cancer responds to current health policy issues on the occurrence of cancers. As well as political decision-makers at various levels, various players in the provision of healthcare (clinical practitioners, scientific societies, researchers, etc.) are addressed in this report.
Differentiated analyses and descriptions of the health situation and the care of the defined population and patient groups provide important bases for decision-makers and the players referred to above. In the process, current scientific issues and perceptions in the interpretation of multi-factorial observations of the occurrence of cancers are taken into account.
The responsibility for implementing health reporting lies with the National Cancer Registry (NCR) and the Swiss Childhood Cancer Registry.