Frequently Asked Questions Rporting obligation
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.
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.
Professional secrecy / Data protection
Professional secrecy
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).
Data protection
Health data are protected by the Data Protection Act (DPA) and must be processed in accordance with the principles of this Act. Persons and institutions with a reporting obligation are required to ensure that data are exchanged with the responsible cancer registries in encrypted form. Data reporting to the cancer registry can be delegated to another person, but this does not transfer responsibility.
Frequently Asked Questions Obligation to provide information
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.