The government this month launched a comprehensive database on all cancer patients across Japan.
The database is aimed at helping experts and government officials grasp the state of the disease in the country, and utilize the information for treatment and prevention. Cancer is the leading cause of death in Japan.
Patients are also expected to benefit from the system, including gaining access to relevant information on treatment methods for people with the same type of cancer at the same stage. However, some challenges still need to be overcome, such as how to protect and use the personal information that is collected.
Under the law on the registration of information on cancer that came into force this month, about 8,500 hospitals across the country as well as some smaller-scale clinics are required to submit information on their cancer patients to the central government through prefectural governments.
Specifically, these medical institutions will need to report 26 categories of information, including the name, date of birth, sex, date of diagnosis and place of residence of their cancer patients, as well as how their cancer was found, the type and stage of the cancer and treatment details.
Hospital workers will submit relevant information to prefectural governments, and prefectural officials will then input the data into the database managed by the National Cancer Center. Information on resident deaths submitted by municipal governments to the central governments will also be utilized.
Regardless of whether patients have been notified that they have cancer, relevant information will be registered in the database without their consent. If those involved in the registration of data leak patient information, they could face up to two years in prison or a maximum fine of 1 million yen.
Ongoing analysis of such data will allow patients to compare the results of treatments provided at different medical institutions and obtain information on treatment methods for those with similar conditions. At the same time, the system is expected to allow authorities and medical institutions to identify and respond to regional trends in the disease.
Prefectural governments already have systems under which local medical institutions register cancer patient information. However, hospitals have been asked to register such information only on a voluntary basis, and the reliability of such systems varies from region to region.
The latest number available for people diagnosed with cancer was some 850,000 in 2011. However, the figure is an estimate based on data available in 14 prefectures, and there is no precise number available for the entire country.
The government is expected to announce detailed data on cancer patients registered in the database -- including the number of patients in each prefecture, the types of cancer and the stages of progression -- sometime around December 2018. Five-year survival rates will likely be released at the end of 2023.
An official at the National Cancer Center's Center for Cancer Control and Information Services, which manages the database, says, "The data is basic information that will lead to future improvements in treatment. We'd like the system to be considered from a long-term perspective."
Cancer has been the leading cause of death in Japan since 1981. In 2014, 368,103 people died of cancer. Nevertheless, Japan has lagged behind many other countries in creating a system to register cancer patient information.
South Korea and northern European governments already have such systems in place. In other countries including the United States and Australia, state governments play a leading role in enacting legislation and rules to cover information on all cancer patients nationwide.