A new bill drafted by a nonpartisan group of lawmakers will require hospitals to submit to the government a list of personal information about their cancer patients. This is part of the effort to improve the quality of treatment in Japan by gaining access to information that can help research programs in their bid to find cures for various kinds of cancers.
The lawmakers from different parties compiled the bill for mandatory cancer patient registration in order to get all prefectural governments to submit information that would eventually be used to develop legislation to tackle cancer. Currently, the regional cancer registration system allows the prefectures to collect information from the hospitals, but because it is not required, only 25 have gathered this information according to the Ministry of Health. The bill will compel all hospitals to file information including the patient’s name, gender, date of birth, address, type and stage of cancer, records of treatment and mortality status. If they do not do so, they will be facing fines for failing to provide the information. Clinics will be requested to do the same, but only on a voluntary status.
With permission from the patients, this data can be accessed by researchers at the hospitals so they can use it when they do their studies on preventing and treating the various forms of the disease. The bill also guarantees protection of this information and any leaks could be punishable by law. However, there is still some discussion as to the level of punishment since they are still not sure how effectively the leaks can be stopped and monitored.