Who is responsible to inform the patient about the cancer registration?
The medical professional who informs the patient about the diagnosis is also responsible for doing so regarding cancer registration. Ideally a person known to the patient or who shares a trust-based relationship with the patient will provide the notification. The notification about the cancer registration must occur orally and in writing. The NACR offers brochures in 14 languages for the written notification. Brochures in the three Swiss national languages German, French, and Italian, as well as in English, are available for order. Versions in the other languages can be downloaded as PDF files. The brochures in German, French, Italian, and English can be ordered on this internet page: https://www.migesplus.ch/en/publications/information-about-the-registration-of-cancer.
Why must patients be informed orally and in writing about the cancer registration?
The written (brochures with patient information can be obtained here) and oral notification have the goal of ensuring that patients understand what the significance of the registration of their tumour diagnosis is, and that they have the option to refuse the registration. It should also be ensured that patients have the opportunity to ask questions.
When must the patient be informed about the cancer registration?
The healthcare professional has the latitude to decide on the opportune time for notification. The notification should occur however as close as possible in time after the diagnosis is disclosed. The notification must be in oral and in written form. The NACR offers brochures in 14 languages for the written notification. Brochures in the three Swiss national languages German, French, and Italian, as well as in English, are available for order. Versions in the other languages can be downloaded as PDF files. The brochures in German, French, Italian, and English can be ordered on this internet page: https://www.migesplus.ch/en/publications/information-about-the-registration-of-cancer.
What information must the doctor provide?
The doctor that informs the patient or the legal guardian (e.g. parents) about the diagnosis must also inform them about the rights of the patient regarding the measures implemented to protect their personal data stipulated in the Cancer Registration Act, and about the reasons and goals of cancer registration. This means that the doctor has the duty to inform the affected individual or their legal guardian orally about the reporting of the data to the cancer registry and about their right to refuse registration. The doctor must document the patient notification, including the date.
What type of communication must the doctor use to inform the patient?
The doctor has the duty to inform the patient or the legal guardian orally and in writing. For the written notification, the doctor may give the affected individual a patient information brochure. NACR in cooperation with the Swiss Childhood Cancer Registry (KiKR) has created a patient information brochure that is available free-of-charge to persons and institutions with duty to report. The patient information brochure in 14 languages can be downloaded or ordered here. Also, extensive patient information can be found here for children and adolescents, and on the NACR webpage for adults.
What do the information brochures contain?
The brochures contain information about the following:
- Meaning and purpose of cancer registration
- Duties of organisations involved in cancer registration
- Scope of data collection
- Data flow (e.g. to whom the data is reported and which other entities receive it)
- Data protection
- Patient rights in relation to registration and processing of data.
Who should be informed if the patient has dementia or is not otherwise capable of making decisions?
The patient representative(s) is/are to be informed.
Who should be informed if the patient dies shortly after diagnosis (e.g. surgery for bowel obstruction, newly diagnosed cancer)?
According to the CRA this information is mandatory for data registration by registries. The CRA does not provide for exceptions that would lead to not reporting such (rare) cases to registries. The reporting physician is at risk of breaching her/his duty of confidentiality because not all conditions for reporting in accordance with the CRA are fulfilled. From the perspective of professional confidentiality, the provisions of criminal law regarding the protection of secrecy remain in force after death. By informing the patient representatives this obstacle could be overcome. In the absence of patient representatives, closest relatives should be informed if prior permission from the deceased patient was granted. Lastly, the possibility of having the duty of professional secrecy lifted by the relevant authority (cantonal health department) could be considered, as is provided for in art.321 par.2 of the Swiss Criminal Code.
Which patients do I, as diagnosing doctor, have to inform: patients with initial diagnoses made on 1 January 2020 or later, or all patients, including those diagnosed before 2020 and treated in 2020 and later?
Pursuant to the Cancer Registration Act (CRA), all patients that were diagnosed on 1 January 2020 or later must be informed about the cancer registration. This means that all patients that receive a diagnosis in 2020 or later must be informed orally and in writing about the cancer registration. On the other hand, the KRG does not stipulate that patients who were diagnosed before 2020 and are still undergoing treatment in 2020 have to be informed.
Please note: the duty to report pursuant to the Cancer Registration Act (CRA) applies only to initial diagnoses made on 1 January 2020 or later. However, we kindly ask you to continue reporting initial diagnoses made earlier. Consent has been given by the Ethics Committee of the Canton of Zürich (German acronym: BASEC-Nr. PB 2015-01643), valid until 31 December 2022, for the collection of cancer data obtained before 31 December 2019 that were not yet, or incompletely, registered. The goal is to avoid a gap in data registration due to the change of system. The consent is valid for data collection from patients with residence in Switzerland (at the time of the initial diagnosis), with the exception of the Cantons of Schaffhausen and Schwyz, which started cancer registration only in 2020.
Do I, as doctor, have to inform patients who received an initial diagnosis before 2020 and developed a recurrence in 2020 or later?
All patients who received an initial diagnosis in 2020 or later must be informed orally and in writing by the diagnosing doctor. A recurrence is the reappearance of an earlier cancer; it is part of the initial diagnosis that in the given example was established before 2020 and thus before the CRA took effect. A recurrence that pertains to an initial diagnosis established before 2020 is not subject to the duty to report. The CRA does not stipulate that the affected patients have to be informed.
In this particular situation, we kindly ask you to continue reporting initial diagnoses made before 01.01.2020. Authorisation for cancer registries to do so was given by the Ethics Committee of the Canton of Zürich (German acronym: BASEC-Nr. PB 2015-01643) and is valid until 31 December 2022 for the collection of data obtained before 31 December 2019 that were not, or incompletely, registered. The goal is to avoid a gap in data registration due to the change of system. This authorisation is valid for data collection from patients with residence in Switzerland (at the time of the initial diagnosis), with the exception of the Cantons of Schaffhausen and Schwyz, which started cancer registration only in 2020.
Do I, as doctor, have to inform patients without residence in Switzerland, who came for treatment to Switzerland, about the cancer registration? Do I have to report these patients or not?
Foreign patients and patients without residence in Switzerland are not covered by the Cancer Registration Act (CRA). This means that the CRA does not stipulate that foreign patients and patients who come to Switzerland for treatment have to be informed, or that they are subject to the duty to report.
The Principality of Liechtenstein tasked the Eastern Switzerland Cancer Registry to carry out the cancer registration for the Principality as of 1 January 2011. Most data are from Liechtenstein and Switzerland. Please transmit cancer data from patients with residence in Liechtenstein to the Eastern Switzerland Cancer Registry (KROCH). The Liechtenstein patients must be informed about the transmission of the data to KROCH and the date of the patient notification must be sent there.
Please contact the Eastern Switzerland Cancer Registry https://ostschweiz.krebsliga.ch/krebsregister-ostschweiz-forschung for questions regarding registration of cancer patients with residence in Liechtenstein.
In case we treat patients who were diagnosed in another hospital or practice, do we have to inform these patients one more time? In other words, how do we know, as treating hospital or medical professional, if the notification has been carried out?
Pursuant to the KRG, the doctor who first communicates the diagnosis to the affected patient is responsible for the notification of the patient (oral notification, as well as provision of the patient information brochure). In case the communication of the diagnosis was not carried out in your hospital/by you, but occurred in another surgery/office or hospital, you may assume that the affected patient has already been informed. You do not have to take any action in this regard. In this particular case, you must only transmit data on treatment/disease course to the responsible cancer registry (duty to report). If the cancer registry doesn`t have a patient information date and cannot obtain it, the transmitted data are not registered. Thus, the rights of the patient are protected in all circumstances.