Julyanti Agustina, Case Study

Supporting Indonesia’s population-based cancer registries (PBCRs)

Spotlight on data collection and analysis

Ms. Julyanti Agustina works at the cancer registry at the Dharmais National Cancer Centre (NCC), Jakarta, Indonesia since 2010. Her work there contributes to the mission of the Dharmais National Cancer Centre, which includes organising training and workshops, conducting evidence-based research, utilising a hospital based registry, strengthening national and international networking and improving the workforce. Together with her teamwork at the cancer registry, Ms. Agustina allows the National Cancer Centre to collect evidence, host workshops, and use the registry to inform decision- making.

In 2013, Ms. Agustina travelled to the National Cancer Centre in Tokyo, Japan, to complete a UICC fellowship. The head of Dharmais Cancer Registry Division (Dr Evlina Suzanna) suggested her to apply the UICC fellowship to upgrade knowledge about Cancer Registry in Japan. She wanted to learn about national cancer registry implementation, data collection and data analysis. At the same time, one of her colleagues visited Osaka, Japan with a focus on Japanese prefecture cancer registries. Together, using their newly acquired knowledge, they were able to contribute to the improvements made to the cancer registry at Dharmais.

Fellowship experience and its implications in Indonesia

Ms. Agustina worked under the supervision of Dr Tomohiro Matsuda during her month in Tokyo. During her fellowship, she learned how to standardise data collection and data analysis. Her improved understanding allowed her to look at Indonesia’s cancer registry more critically and identify areas that could be improved. Indonesia currently has 14 PBCRs that cover 14% of the population, however through her fellowship experience Ms. Agustina realized that there was a significant difference in the quality of data collected in her country to that in Japan, with it often lacking sufficient detail. To improve the quality of data collected by the Dharmais Cancer Registry, Ms. Agustina recommends that hospitals, private clinics and associations for pathologists and oncologist in Indonesia to join PBCR to standardize the information collected in order to improve data quality.

Another challenge Ms Agustina identified is the lack of human resources and staff in cancer registries in Indonesia. Currently, there are eight trained staff working in Dharmais Cancer Registry, but in other cancer registries are most work part-time and would benefit from further training to improve their skills as registrars. Ms. Agustina and her colleagues have been able to personally contribute by transferring the knowledge they learned in Japan to her colleagues in Dharmais by holding small workshops and giving presentations to their colleagues.

Additionally, Ms. Agustina has been able to establish strong connections between NCC Japan and Dharmais NCC on several levels. Dr. Matsuda, Ms Agustina’s host supervisor during her fellowship in Japan, visits Dharmais NCC to give presentations and to help train staff members on cancer registries. On an institutional level, NCC Japan and Dharmais NCC signed an MOU to establish collaboration on cancer research. Both institutions intend to strengthen their collaboration in cancer research, scientific workshop, and exchange of information for academics and public through the MOU.

The impact of data on Treatment for All

Ms. Agustina’s work contributes to one of the four pillars in UICC’s Treatment for All Campaign. Data collection and cancer registries are crucial to understanding the societal health burden, and it provides the foundation for making proper decisions to assist cancer control. Hopefully, more information will allow for creation of improved and target cancer control strategies and tactics.

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Last update: 
Monday 2 March 2020