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Annual Report 2019

Division of Cancer Information Service

Tomoko Takayama, Masayo Hayakawa, Chikako Yamaki, Yoji Inoue, Yumi Iwamitsu, Ayako Ishikawa, Otome Watanabe, Yuki Nakatani, Asako Mimura, Yumiko Sano, Yuko Ogo, Tomoko Takahashi, Masayo Sakurai, Toshiko Sato, Emi Sawai, Kumiko Shiga, Sayo Miyamoto, Fumika Horinuki, Yoshiko Ikeguchi, Mizuho Maruyama, Ayumi Kishimoto, Akiko Shiratani, Satoshi Takisawa, Mina Nakajima, Erika Yamaguchi, Miyuki Monma, Aki Oku, Kaori Shioda

Lines of Service

 We have continued to enhance and update “Ganjoho.jp”, the nation’s trusted source of cancer information with about 19,300 pages, and annual usage is now at 65.3 million PV. Our library of patient education publications has updated 9 cancer-related titles, and 74 other titles, such as genomic medicine, lymphedema, and supportive care information. Content regarding regional cancer information resources and clinical trials has also been updated extensively. All of our patient education publications, in either booklet or pamphlet formats, are available for free download online 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 that brings together the over 2,000 specialists that run the 436 Cancer Information & Support Centers (CISCs) deployed nationwide, with a bi-annual conference for prefectural CISC leadership, where we look to allow the practitioners to share the latest set of best practices. The first joint CISC leadership meeting was carried out 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 effort 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, ways to further standardize both 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, 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.

 We have started a three-year on-site training program for quality assurance in the cancer counseling process since 2018. We offered it in 11 prefectures in FY2019, and have offered it in a total of 24 out of 47 prefectures so far. 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, 126 certified cancer counselors and three certified CISCs were created in 2019, for a total of 436 and 24, 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. The regional CISC training forums, now in their ninth year, took place in more than six regions this year, although two of them 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.

 Our media education initiatives are now in their 13th year, with one final theme conference held during 2019.

 We have also added public libraries to our dissemination channel with the donation-funded initiative “Cancer information gifts” – not only providing cancer information booklets and leaflets but also ensuring that reference librarians can put their users in touch with the local CISCs when and where this is deemed desirable. As of the end of FY2019, 349 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 in the Hokkaido region.

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 through 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 both our production model, as well as the CISC framework, to better leverage the capabilities of various extramural partners, to arrive at a more sustainable set of processes and services.

List of papers published in 2019

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, 2020, DOI: 10.1097/PHH.0000000000001155.

2. Kikuzawa S, Pescosolido B, Kasahara-Kiritani M, Matoba T, Yamaki C, Sugiyama K. Mental health care and the cultural toolboxes of the present-day Japanese population: Examining suggested patterns of care and their correlates. Soc Sci Med, 228:252-261, 2019

3. Hayakawa M, Imai T, Kawazoe Y, Kozaki K, Ohe K. Auto-Generated Physiological Chain Data for an Ontological Framework for Pharmacology and Mechanism of Action to Determine Suspected Drugs in Cases of Dysuria. Drug Saf, 42:1055-1069, 2019