The patient wants disclosure of the data from the National Cancer Registry

When a patient with a suspicion of cancer is sent to a medical specialist, he is usually sent to the nearest hospital. That is quite understandable, but the question is whether that is a good decision for the patient. The patient with cancer benefits from a medical specialist and a hospital who are specialized in the diagnosis and treatment of the type of cancer the patient has. So in the end the patient will have to go to that doctor and that hospital. But how does the patient know which doctor and which hospital are specialized in a specific type of cancer? And is it known which doctor and which hospital are familiar with a specific type of disease?

In the meantime, countless information about healthcare is being kept. Regarding cancer care in the Netherlands, there has been a nationwide registration of all cancer patients, the Dutch Cancer Registration (NKR), for already 30 years, organized by the Integraal Kanker Centrum Nederland (IKNL). From that data it can be deduced how many patients with a certain type of cancer are treated where, how and for how long. That information provides at least an indication of a specialization and of an expert in care. After all, the more patients you treat with a certain disease, the better you will become. Everyone agrees on that. The data should be made public so that the patient can rely on objective data when choosing the right hospital and medical specialist.

The IKNL may not simply disclose the data on the numbers of treatment per hospital or per medical specialist. The hospitals contract with the IKNL contains the conditions under which the IKNL receives the data. Hospitals and medical specialists regard the data as company data. They are potentially threatening to the reputation of the hospital or the doctor if the data contrasts less positively with that of other hospitals or medical specialists. The Patient Advisory Board of the IKNL would like the IKNL to make the data public and has also made this known to the board. There is still an ongoing consult between IKNL and the Dutch Association of Hospitals (Dutch website) regarding this disclosure.

The Dutch Federation of Cancer Patient Societies (NFK) also wants hospitals to disclose the data. It seems likely that pressure from the patients will move the organizations involved towards a direction with publicly available data.

Jan Vesseur
Patient Advocate Inspire2Live