Katanoda Kota, Ito Hidemi, Ito Yuri, Katayama Kayoko, Nishino Yoshikazu, Tsutsui Anna, Togawa Kayo, Tanaka Hirokazu, Ohno Yuko, Nakaya Tomoki
Division of Surveillance and Policy Evaluation, National Cancer Center Institute for Cancer Control.
Division of Cancer Information and Control, Department of Preventive Medicine, Aichi Cancer Center Research Institute.
Nihon Koshu Eisei Zasshi. 2023 Mar 23;70(3):163-170. doi: 10.11236/jph.22-093. Epub 2023 Feb 10.
Worldwide, research based on geographic information of official statistical data, including cancer registries, is utilized for cancer control and public health policies. The National Cancer Registry of Japan was launched in 2016, making it possible to use data on cancer incidence systematically. Given the nature of this comprehensive survey, the usefulness of the National Cancer Registry would be further enhanced when it is utilized at small-regional levels, such as in municipalities or even smaller geographical units. It is essential to maintain a balance between privacy protection and data usability. Currently, the national and prefectural councils determine the availability of the data from the National Cancer Registry at the small-regional level on an individual application basis. Under this framework, use of the data is often restricted or declined. This paper showcases three model countries where geographic information obtained from cancer registry data are widely utilized: the United States, Canada, and the United Kingdom. It further discusses measures to ensure that data are effectively used, without compromising data privacy. In the three countries, data-providing systems have been established to compile the necessary data from the cancer registry and other linked databases, in accordance with the purpose of use. The relationships between healthcare access and various outcomes are elaborately examined at the small-regional level. In Japan, similar utilization of data has not been fully implemented, and there remain many hurdles to the application of the data use. For the National Cancer Registry to promote research and further enhance cancer control, it is necessary to establish a system that enables effective and safe utilization of the data from the National Cancer Registry, including linkage with other data and on-site use.
在全球范围内，基于官方统计数据（包括癌症登记数据）的地理信息研究被用于癌症控制和公共卫生政策。日本国家癌症登记处成立于2016年，使得系统地使用癌症发病率数据成为可能。鉴于这项综合调查的性质，当在较小区域层面（如市或更小的地理单位）使用时，国家癌症登记处的实用性将得到进一步提升。在隐私保护和数据可用性之间保持平衡至关重要。目前，国家和地方委员会根据个别申请来决定在较小区域层面获取国家癌症登记处数据的可用性。在此框架下，数据的使用常常受到限制或被拒绝。本文展示了三个广泛利用从癌症登记数据中获取的地理信息的典型国家：美国、加拿大和英国。本文还进一步讨论了确保数据在不损害隐私的情况下得到有效利用的措施。在这三个国家，已经建立了数据提供系统，以便根据使用目的从癌症登记处和其他相关数据库中汇编必要的数据。在较小区域层面，对医疗服务可及性与各种结果之间的关系进行了详尽研究。在日本，类似的数据利用尚未得到充分实施，并且在数据使用的应用方面仍存在许多障碍。为了国家癌症登记处促进研究并进一步加强癌症控制，有必要建立一个能够有效且安全地利用国家癌症登记处数据的系统，包括与其他数据的关联以及实地使用。
