The Cancer Registration Act (CRA) introduces an obligation for medical professionals to notify cases of cancer and provide information.
From 1 January 2020, all doctors, laboratories, hospitals and other private or public institutions in the healthcare system that are involved in diagnosing or treating cancer are required to report data to the responsible cancer registry. Data for patients under 20 years of age is reported to the Childhood Cancer Registry.
Frequently Asked Questions
Why is there a reporting obligation?
The purpose of requiring data to be registered in accordance with the CRA is to ensure that the data needed for the population-based observation of cancer is recorded throughout the country, fully and completely. This can only be done by introducing an obligation for doctors, hospitals, laboratories and other private or public institutions in the healthcare system to report diagnosed cases of cancer, and this is what the new legislation will achieve.
Who is responsible for reporting?
Responsibility for correct and timely reporting lies with the self-employed doctor or the head of the institution for which a salaried doctor works. Data reporting to the Childhood Cancer Registry can be delegated to another person, but this does not transfer responsibility.
What needs to be reported?
The types of cancer and the associated information that needs to reported are described in detail here. In summary:
The types of cancer that need to be reported are listed in Annex 1 of the Cancer Registration Ordinance (CRO). A distinction is made between adult patients on the one hand and children and adolescents on the other. Only data on confirmed diagnoses need to be reported (this does not include suspected diagnoses).
In addition to the personal data required to classify the information correctly, data on the diagnosis and initial treatment must be reported for all patients (adults, children and adolescents). These data are referred to as basic data in the Cancer Registration Act. Supplementary data must also be reported. For children and adolescents up to 20 years of age this comprises data about the entire course of the disease and therapy including treatment outcomes and information about follow-up investigations.
To whom is the data reported?
Data for patients under 20 years of age is reported to the Childhood Cancer Registry. Cancer in children is reported to the Childhood Cancer Registry no matter where the patient is living when the diagnosis is made.
When does the data need to be reported?
The data must be reported to the Childhood Cancer Registry by the people or institutions with a reporting obligation within four weeks of its being recorded.
Violation of the reporting obligation
The reporting obligation in accordance with the Cancer Registration Act is a professional duty under Art. 40 of the Medical Professions Act (MedPA). The cantonal authorities oversee compliance with the reporting obligation. Art. 40 MedPA currently applies only to university-based medical professionals operating privately on their own responsibility. Doctors working in public institutions do not currently fall within the remit of Art. 40 MedPA (this is expected to change on 1 January 2020). However, the canton may act in line with the cantonal health legislation if violations of the reporting obligation occur and may order corresponding measures.
Obligation to provide information
Patients, respectively their legal representative have a right to receive information and to submit an objection. Both rights are regulated in the Cancer Registration Act.
Frequently Asked Questions
Who is responsible for informing patients?
The medical professional who informs the patient about the diagnosis is responsible for providing information. Ideally this information is provided by a person that the patient knows and trusts.
When does information need to be provided?
It is up to the medical professional to decide when the time is right to inform the patient or the legal representative. However, the information should be provided as soon as possible after the diagnosis has been given.
What information does the doctor need to provide?
The doctor who informs the patient or the legal representative (e.g. parents) about the diagnosis must also inform them about the rights of patients and their legal representatives (e.g. parents) that are conferred by the Cancer Registration Act, about the measures implemented to protect their personal data and about the purpose of cancer registration. This means that the doctor is obliged to inform the patient or the patient’s legal representative verbally about the fact that data needs to be reported to the Childhood Cancer Registry and about the affected person’s right to object to data being registered. The doctor must document the fact that the patient has been informed and the date on which this took place.
What form must the information provided by the doctor take?
The doctor is obliged to inform the patient or the patient’s legal representative verbally and in writing. The doctor provides written information by giving the person concerned a patient information brochure. The National Agency for Cancer Registration (NACR) and the Childhood Cancer Registry have developed a patient information brochure that is provided free of charge to persons and institutions with a reporting obligation. The patient information brochure can be downloaded or ordered in 14 languages here. In addition, detailed patient information for children and adolescents can be found here and for adults on the NACR website.
Doctors with a reporting obligation are obliged to maintain professional and medical secrecy. They must treat all the information they receive in confidence. As a rule, they may not forward information to third parties without consent (Art. 321 Criminal Code (SCC)). A doctor may forward patient data if the patient has given consent, if the doctor’s responsible authority has released him/her from the obligation to maintain professional secrecy, or if the transfer of data are explicitly provided for in the legislation – which is the case with the Cancer Registration Act (CRA) and the Ordinance (CRO). However, the documents forwarded to the responsible cancer registry may only contain information relating to cancer. (Art. 8 para. 2 CRO). Notes on Art. 8 para. 2 CRO:
“In order to keep the workload associated with cancer registration to an acceptable level for persons required to report, these persons may forward reports that they produce in any case for documentation purposes in the course of their work in accordance with paragraph 2. These include, for example, tumour board, surgical, pathology, histology or cytology reports, discharge summaries, doctors’ letters and excerpts from the medical records. It must be ensured that these documents contain only information relating to cancer.”
Violation of the obligation to maintain professional secrecy may result in criminal charges if criminal proceedings are initiated and if the federal and cantonal regulations governing reporting and participation rights, the duty to give evidence and the duty to provide information to an authority have been violated (Art. 321 para. 3 SCC).
Health data are protected by the Data Protection Act (DPA) and must be processed in accordance with the principles of this Act. If health data are processed illegally, the affected persons may bring a civil action (Art. 15 para. 4 DPA). This option may be pursued in addition to criminal proceedings in accordance with Art. 321 SCC. Persons and institutions with a reporting obligation are required to ensure that data are exchanged with the responsible cancer registries in encrypted form. This can be done, for example, by transmitting data to the responsible cancer registry using the HIN (Health Info Net) service. Reports on paper are subject to postal secrecy in accordance with Art. 321ter SCC. Data reporting to the cancer registry can be delegated to another person, but this does not transfer responsibility. Persons charged with implementation are subject to an obligation to maintain secrecy in accordance with Art. 29 CRA when implementing the Cancer Registration Act (CRA). If the obligation to maintain secrecy is violated, Art. 320 SCC (violation of professional secrecy) and/or Art. 321bis SCC (professional secrecy in human research) apply.