A nonpartisan group of Diet lawmakers has drafted a bill that would oblige hospitals to provide the state with cancer patients’ personal information, including their condition, in an effort to improve treatment quality, sources said Saturday.
The group, which includes members of the ruling Liberal Democratic Party, junior coalition ally New Komeito and the main opposition Democratic Party of Japan, compiled the legislation to promote cancer patient registration so the data can be used in drafting bills to tackle the disease, the sources said.
The lawmakers intent to submit the bill to an extraordinary Diet session to be convened in October after gaining approval from each party.
At present, prefectural governments gather details on cancer patients from local hospitals through the regional cancer registration system and based on the health promotion law.
But as prefectural governments are merely urged to make efforts to do so, only 25 prefectures currently collect data that can be used to take measures against cancer and key information on the survival rate of cancer patients after five years is available from just seven prefectures. Calls are therefore growing for more data to be gathered, according to the Health, Labor and Welfare Ministry.
The bill would require all hospitals nationwide to file cancer case data with prefectural governments, while clinics would be asked to do so on a voluntary basis. The information would be registered in the database of the National Cancer Center for unified management by the state.
Hospitals would face fines for failing to follow prefectural orders to provide details on patients.
Data to be registered would include the patient’s name, gender, date of birth, address, type and stage of cancer, treatment records and, where applicable, date of death. The unified administration of such detailed information would make it easier to track patients when they move or to be informed sooner of their death.
With permission from patients, researchers at hospitals would also be able to access the information to develop better methods of treating cancer.
The bill stipulates the personal details would be strictly protected and that information leaks could be punished with imprisonment. But discussions among political parties over the penalties could wind up stalemated due to uncertainty about how effectively such leaks can be prevented.