Key political parties eyeing law to oblige all hospitals to provide data on cancer patients
The Liberal Democratic Party (LDP), the New Komeito party, and the Democratic Party of Japan (DPJ) broadly agreed on Oct. 15 to submit to the current extraordinary Diet session a bill to require all hospitals in the country to provide information on their cancer patients.
The bill is aimed at setting up a data base on registered cancer patients throughout the country based on treatment results and therapeutic processes to improve anti-cancer measures. Officials of a non-partisan group of lawmakers, headed by LDP House of Councillors lawmaker Hidehisa Otsuji, will seek enactment of the bill during the current Diet session after endorsing it on Oct. 17.
Under the legislation, all hospitals across the country, which have diagnosed their patients with cancer, will be required to register their patients' names, gender, birth dates, addresses, types of cancer, as well as stages of progression, processes of discovery and treatment records. The information will be stored in a database to be set up at the National Cancer Center. The database will be updated by cross-checking death notifications provided by municipalities.
Cancer registrations have so far been handled by local municipalities on a voluntary basis, and the central government and institutions concerned have been using their data on estimated cancer incidence rates and survival rates, among other indicators. But such data varies in content and accuracy from one municipality to another, and therefore patient groups have called for legal steps to implement effective measures against cancer.
If the bill is enacted into law to mandate the collection of information on all patients, the accuracy of research results, statistics and data on incidence and survival rates and regional characteristics will dramatically improve. Apart from cancer therapies and cancer prevention, the legislation is aimed at taking advantage of the database to help the central and local governments with their planning for anti-cancer measures and provide information to the general public.
There are cancer patients who are not informed of their disease, but because the legislation is designed to cover all cancer patients, the provision of information on cancer will not be subject to the Private Information Protection Law as an exception. Thus, there will be no need to obtain patients' consent. Real names of cancer patients shall be registered so as to allow for follow-up research, but they will be made anonymous after a certain period in accordance with rules set by government ordinances.
Furthermore, the legislation will prohibit the use of personal information for other purposes to prevent the information from being abused, and requests for disclosure of information will not be accepted. Those individuals who have leaked such information would face up to two years in prison or a fine of up to 1 million yen.
The three political parties will seek support from other parties for the bill in an effort to unanimously pass it into law. In consideration for the time needed for preparations to set up a database and other work, the political parties are trying to work out a plan to enforce the law in fiscal 2016 after its passage.
Hideo Tanaka at the Aichi Cancer Center welcomed the political parties' move, saying, "It will lead to an improvement in medical care and prevention as well as in the accuracy of medical examinations, and we can also expect it will help reduce the number of people who are suffering from cancer."
October 16, 2013(Mainichi Japan)