Annual Report 2020

Division of Cancer Information Service

Tomoko Takayama, Masayo Hayakawa, Chikako Yamaki, Ayako Ishikawa, Otome Watanabe, Yumiko Sano, Emiko Ando, Asako Mimura, Yuko Ogo, Tomoko Takahashi, Masayo Sakurai, Toshiko Sato, Emi Sawai, Kumiko Shiga, Sayo Miyamoto, Hiroki Okamoto, Yumiko Saito, Fumika Horinuki, Mizuho Maruyama, Atsushi Sekido, Yoko Ueno, Minako Asano, Mina Nakajima, Junko Suzuki, Maiko Tada, Hikaru Taniguchi, Xinyan Zhang, Hitomi Ooe, Kaori Shioda

Lines of Service

 We have continued to enhance and update “Ganjoho.jp”, the nation’s trusted source of cancer information (which contains approximately 19,905 pages), with a current annual usage is now of 53.4 million page views. Our library of patient education publications has updated 16 cancer-related titles and 44 other titles, such as Adolescents and Young Adults with Cancer and supportive care information. Content regarding regional cancer information resources and clinical trials has also been extensively updated. All of our patient education publications, in booklet or pamphlet formats, are available for free download, and hard copies are disseminated via a bulk order printing scheme, which has made it more cost effective for cancer care facilities and related healthcare providers of all sizes.

 The Division of Cancer Information Service (DCIS) continues to act as a hub, bringing together the over 2,000 specialists that run the 447 Cancer Information and Support Centers (CISCs) deployed nationwide, with a biannual conference for prefectural CISC leadership, where practitioners can share their latest best practices. The first joint CISC leadership meeting was conducted with the designated hospitals for childhood cancer to share issues and support information regarding adolescents and young adults.

Research activities

 As part of our multi-year efforts to devise a more sustainable model for operating a national Cancer Information Service (as well as the CISC network), research programs are ongoing in the following areas: 1) Strategic review of the information portfolio to better define core/non-core domains, methods for further standardizing the content structure and the editorial processes, and opportunities and processes to better leverage other stakeholders (e.g., cancer academic societies and support groups) in collaborative production and load sharing, 2) Developing viable assessment scales for CISC activities, and 3) Developing CISC support tools that enhance their ability to seek out reliable information in a shorter time span.

Nurturing Professionals

 The cancer counselor specialists that staff the nationwide network of CISCs undergo both online training (e-learning curriculums delivered via a site we operate) and on-site group training sessions. We have provided a total of 43 lectures for basic and further training courses.

 Last year, we started a three-year on-site training program for quality assurance in the cancer counseling process, offering it in 12 prefectures in FY2020, and in a total of 43 out of 47 prefectures to date. A newly introduced certification scheme has now made it possible for cancer counselors in hospitals outside the fold of the MHW-designation (nationally orchestrated regional cancer center designation) schemes to undergo the same set of fundamental training, and to receive certifications. This potentially opens an avenue for cancer information counselors to be deployed at upwards of 300 prefecture-designated cancer care hospitals and 436 nationally designated locations. In this scheme, 157 certified cancer counselors were trained and three certified CISCs were created in 2020, for a total of 474 and 25, respectively.

 The DCIS has spearheaded efforts to encourage regional networking of CISC professionals, so that a more frequent and more pertinent mix of skill-enhancing opportunities are made available to a broader set of professionals in this still nascent field. Regarding the regional CISC training forums, now in their tenth year, one region conducted the first online-forum although others were postponed due to the corona pandemic; also, they have become regionally self-sustaining, with an agreed-upon model to jointly manage annual programs with rotating venues.

 We have also added public libraries to our dissemination channel with the donation-funded initiative “Cancer Information Gifts”, which not only provided cancer information booklets and leaflets but also ensures that reference librarians can put their users in touch with local CISCs when and where this is deemed desirable. As of the end of FY2020, 479 public libraries throughout the nation have joined this network, and our networking venues, which bring interested librarians and CISC counselors together in half-day forums, have taken place online.

Future Prospects

 While the DCIS remains committed to our stated aims of bringing more accurate and reliable information to patients, families, caregivers, as well as healthcare practitioners in a context-sensitive manner, we are constantly challenged by the need to keep abreast of the rapid proliferation of new information in all related fields from treatment to survivorship, while running a tight ship within the constraints of a publicly funded agency. In light of the challenge, we endeavor to incrementally evolve our production model and the CISC framework, to better leverage the capabilities of various extramural partners, and to arrive at a more sustainable set of processes and services.

List of papers published in 2020

Journal

1. Takayama T, Yamaki C, Hayakawa M, Higashi T, Toh Y, Wakao F. Development of a New Tool for Better Social Recognition of Cancer Information and Support Activities Under the National Cancer Control Policy in Japan. J Public Health Manag Pract, 27:E87-E99, 2021

2. Haragi M, Hayakawa M, Watanabe O, Takayama T. An exploratory study of the efficacy of medical illustration detail for delivering cancer information. J Vis Commun Med, 44:2-11, 2021

3. Toh Y, Hagihara A, Shiotani M, Onozuka D, Yamaki C, Morita S, Takayama T. Employing multiple-attribute utility technology to evaluate publicity activities for cancer information and counseling programs in Japan. J Cancer Policy, 27:100261, 2021

4. Takayama T, Inoue Y, Yokota R, Hayakawa M, Yamaki C, Toh Y. New Approach for Collecting Cancer Patients' Views and Preferences Through Medical Staff. Patient Prefer Adherence, 15:375-385, 2021