| Japanese Journal of Clinical Oncology | Pages |
Editorial
CANCER INFORMATION FROM THE NATIONAL CANCER CENTER, JAPAN
In the September issue of the Japanese Journal of Clinical Oncology, we presented an editorial entitled ‘Information Technology at the National Cancer Center’ (1). The editorial mentioned briefly about cancer information service presented at the National Cancer Center (NCC) homepage. In this editorial, we look at further details about the homepage and the information services the NCC provides.
NATIONAL CANCER CENTER HOMEPAGE
If you input ‘gann (Japanese word for cancer)’ in Japanese as a keyword for Yahoo! Japan, one of the major search engines in the Internet, you would find the homepage of NCC, Tokyo, in the list of categories of the search result. Every day, the NCC homepage has more than 6000 hits on average.
Information available from the NCC homepage are as follows.
- Information about the NCC, including its history, organization and activities of the two hospitals (in Tsukiji and Kashiwa), and research activities of the Research Institute.
- Cancer Information Service (CIS)
- (1)
- Information for patients, their families and the general public
- (2)
- Information for medical professionals
- (3)
- Information of national and prefectural cancer hospitals and hospices
- (4)
- Cancer statistics in Japan.
- Links to other cancer-related sites in Japan and around the world, including homepages of the Ministry of Health and Welfare of Japan, major national medical centers, and the National Institutes of Health of the US.
- On-line version of the Japanese Journal of Clinical Oncology.
- Other announcement and information of cancer-related educational lectures.
The above listed information is provided in Japanese, although the NCC has an English homepage and some of the information is translated in English (Fig. 1).
English
 |
Japanese
 |
Figure 1. National Cancer Center homepage in English and Japanese
NATIONAL CANCER CENTER-CANCER INFORMATION SERVICE
The NCC Cancer Information Service (NCC-CIS) is a computer-based cancer information service for patients, their families, physicians and other health professionals, which has been developed by the Information Committee of the NCC. It has been accessed about 80 000 times a month, while the same service provided through fax and personal computers are also used about 700 times and 130 times, respectively. The service started in 1996 as the first computerized medical database which provides peer-reviewed cancer information in the Japanese language in Japan (1,2). The NCC-CIS in Japanese was modeled after the worldwide database called Physician Data Query (PDQ) which is provided by the National Cancer Institute in the US (3). Instead of promoting Japanese translation of PDQ, NCC has developed its own cancer information database in order to cope with the medical and social environments in Japan, in addition to language barriers. NCC-CIS statements are written by cancer specialists at the NCC and are peer-reviewed by the core editorial board comprising nine leading experts supplemented by editorial advisory boards. After reviewing the statements, they are checked by a language editor in order to ensure that its language is simple and clear enough for the general public to understand before the final approval by the Information Committee of the NCC.
Information for patients, their families and the public
Since ‘informed consent’ is now becoming the important first step in the treatment of cancer patients in Japan, it is crucial for both doctors and patients to share common information about diagnosis and treatment of cancer. The information statement for patients describes the staging, treatment options, and prognosis for more than 49 types and sites of cancer in easy-to-understand language and color illustrations (Fig. 2). This file also contains supportive care statements with illustrations on the management of side effects of cancer such as pain, nausea/vomiting, constipation, rehabilitation after various kinds of surgery and transitional care, together with treatment of the side effects. Health care professionals often use these information summaries when they explain the disease and treatment options to their patients.
In addition, promotion of cancer enlightenment for the public is one of the important national projects leading to the decrease of the incidence and mortality of cancer. Information for patients includes instructions on self detection of cancer and how to prevent cancer by explaining twelve points named ‘Twelve statements for Cancer Prevention’ proposed by the NCC.
Figure 2. National Cancer Center-Cancer Information Service. Index page in Japanese with illustration. Information for medical professionals Treatment and diagnosis of cancer are making remarkable progress and it has been important to know what the state-of-the-art practices are. The NCC recently started this service for practitioners, in addition to manuals on cancer pain control and informed consent. The information may assist clinicians in deciding whether an established treatment regimen or an investigational approach would be more appropriate for their patients. The NCC-CIS is also a comprehensive source of information about ongoing Japan Clinical Oncology Group (JCOG) clinical trials (4). The summary of each protocol describes the study objectives, eligibility criteria, detailed information about dosage and schedule of treatment, and toxicity. The accuracy and currency of JCOG protocol files are maintained by a monthly mailing sent to the JCOG data center. Information about NCC and other National and Prefectural cancer hospitals and hospices Although the PDQ of the US lists the physician directories of health professionals and organizations involved in cancer care, at present, the NCC-CIS provides information about 27 hospitals which are members of the Japan Cancer Hospital Association (details include their names, addresses with map including transport facilities, home page addresses, telephone and fax numbers). The NCC-CIS also includes information on about 20 hospice institutions approved by the Ministry of Health and Welfare and the prefecture governments in Japan. Information about the hospice institutions contains numbers of beds, members of staff, consultation systems, facilities for care, periods waiting for admission and costs for admission. JJCO On-line and Reference database The Japanese Journal of Clinical Oncology (JJCO) is the first Japanese medical journal to become fully on-line, in which not only abstracts but also the full text of each published article is available with the references connected to Medline for skimming the abstracts. JJCO on-line has more than 7000 hits every month. The journal also provides the clinical and pathological case images as cover illustrations, which are typical, rare or difficult to diagnosis, chosen by the reference database study group of the NCC Information Committee. These images are mainly from the cases presented at the multi-point tele-conference, which is regularly held with nationwide cancer hospitals connected by an on-line image transfer system with high definition television. The reference database is being prepared at the NCC as a part of the G7 Global Healthcare Application Project (5). In the near future, these images will be provided from the NCC-CIS via the Internet so that they can be used by health professionals or researchers all over the world for education or research purposes. Cancer statistics in Japan Cancer statistics in Japan is updated every 2 years and published by the Foundation for Promotion of Cancer Research. The latest version, which includes data of 1997, is prepared in English and Japanese and both versions are available through the Internet. Color figures and charts help people to understand trends of mortality by leading causes of death, mortality from malignant neoplasms by site and sex in Japan, and so on (Fig. 3). These statistics can be accessed and used not only by people in Japan, but also from all over the world. Figure 3. Cancer statistics in Japan Access to NCC-CIS The NCC-CIS is available through the Internet, personal computer and by fax for health professionals and patients, in Japanese, 24 hours a day. Since the NCC-CIS started in March 1996, the database has been revised and improved significantly. More detailed information on cancers and the activities of the NCC have been added. Compared with cancer information services in the US and other countries, however, there still need several improvements. Firstly, at present the NCC-CIS is one-way communication, in which patients or other people cannot ask questions and have answers to them directly from specialists in cancer clinics and research institutions. Whereas, some foreign services include physician directories with telephone and fax numbers or E-mail addresses of the specialists. Since the NCC-CIS started its service to patients and the public, however, the NCC received many consultations from home and abroad; such as questions about treatment options, prevention of cancer recurrence, and experimental therapy. The NCC is making every possible effort to quickly respond to the consultations. Secondly, as a leading national cancer hospital, the NCC is planning to issue its monthly report on its homepage. This would provide people with a clear idea of what the NCC is working on and what the results of its activity are. Thirdly, the NCC should consider releasing statements on current issues related to cancer, like the NCI does through its website. They are the official view of the Center regarding new developments or research results found in the world or hot discussions taken up in media. Equally important may be gaining publicity for the service. Recently, the NCC homepage was updated with a new and attractive design, which may help more and more people to access the site. Valuable feedback from people who visit the site is most welcome. If you have any questions or comments abut the NCC-CIS, please send a message by fax to the NCC-CIS, Information Committee of the NCC (fax number: 03-3542-3495). NCC-CIS is partly supported by grants of the 2nd Term Comprehensive 10-Year Strategy for Cancer Control and a Grant-in-Aid for Cancer Research from the Ministry of Health and Welfare (8-1), Japan.
log in:
‘info’ for patients and general public
‘infomed’ for health professionals
password: hit the return key
patients and general public: 03-3545-8888
health professionals: 03-3545-2500PERSPECTIVE
Acknowledgment
References
Information Committee of the National Cancer Center, Tokyo
Tetsu Shinkai (Chief, NCC-CIS)
Kaoru Abe (Chairman)
Hiroshi Mizushima
Fumihiko Wakao
Koichi Benjamin Ishikawa
Toru Watanabe
Tetsuro Kodama
Naohito Yamaguchi
Satoshi Ebihara
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Last modification: 24 Nov 1998
Copyright©Japanese Journal of Clinical Oncology, 1998.
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