The challenge of the implementation and evaluation of hospital-based cancer registry in Indonesia’s national referral hospital
BACKGROUND To lower the burden caused by cancer, the Ministry of Health of the republic of Indonesia requires valid data collection to plan and evaluate cancer programs. This study aimed to evaluate the challenge of developing a cancer registry (CanReg) in Cipto Mangunkusumo Hospital.
METHODS This was an observational study on the implementation of cancer registration from the initial licensing until the creation of valid and accurate data, also the challenges in implementing hospital-based cancer registry (HBCR) in Cipto Mangunkusumo Hospital.
RESULTS Cancer registry was developed in 2016 using the 2013 Indonesian version of CanReg5 program called SriKandI. We identified some problems in this registry implementation, such as legal and human resources, medical records, electronic health records, and the CanReg5 program. Moreover, this team processed 886,086 raw patients’ data with fairly good topography and age data completeness.
CONCLUSIONS Several obstacles were encountered upon the establishment of HBCR at Cipto Mangunkusumo Hospital from program to bureaucracy and resources. Nevertheless, CanReg data can be used as a basis for decision making by stakeholders.
National Cancer Institute. SEER cancer statistics review, 1975-2012. SEER Cancer Stat Rev 1975-2012 [Internet]. National Cancer Institute: U.S. Department of Health and Human Services; 2015 [cited 2018 Dec 29]. Available from: http://seer.cancer.gov/csr/1975_2012/.
Vijayakumar M, Ramesh C, Ramachandra Reddy K. Leading sites of cancer in India. Consol Rep HBCR, 2007-2011. 2010;1:1-16.
Globocan. Fact sheets by population [Internet]. 2014 [cited 2019 Jan 20]. Available from: http://globocan.iarc.fr/Pages/fact_sheets_population.aspx.
Bray F, Jemal A, Grey N, Ferlay J, Forman D. Global cancer transitions according to the Human Development Index (2008-2030): a population-based study. Lancet Oncol. 2012;13(8):790-801. https://doi.org/10.1016/S1470-2045(12)70211-5
Torre LA, Bray F, Siegel RL, Ferlay J, Lortet-Tieulent J, Jemal A. Global cancer statistics, 2012. CA Cancer J Clin. 2015;65(2):87-108. https://doi.org/10.3322/caac.21262
Ministry of Health of the Republic of Indonesia. Health minister announced a commitment to tackling cancer in Indonesia. [Internet]. Jakarta: Ministry of Health of the Republic of Indonesia; 2015 [cited 2019 Jan 20]. Available from: http://www.depkes.go.id/article/view/15020400003/menkescanangkankomitmen-penanggulangan-kanker-di-indonesia.html. Indonesian.
Sohier BR, Sutherland AGB. The International Agency for Research on Cancer [Internet]. 2015 [cited 2019 Jan 19]. Available from: http://www.iarc.fr/.
Chiang CJ, You SL, Chen CJ, Yang YW, Lo WC, Lai MS. Quality assessment and improvement of nationwide cancer registration system in Taiwan: a review. Jpn J Clin Oncol. 2015;45(3):291-6. https://doi.org/10.1093/jjco/hyu211
Larsen IK, Småstuen M, Johannesen TB, Langmark F, Parkin DM, Bray F, et al. Data quality at the Cancer Registry of Norway: an overview of comparability, completeness, validity and timeliness. Eur J Cancer. 2009;45(7):1218-31. https://doi.org/10.1016/j.ejca.2008.10.037
Parkin DM, Bray F. Evaluation of data quality in the cancer registry: principles and methods Part II. Completeness. Eur J Cancer. 2009;45(5):756-64. https://doi.org/10.1016/j.ejca.2008.11.033
Siesling S, Louwman WJ, Kwast A, van den Hurk C, O'Callaghan M, Rosso S, et al. Uses of cancer registries for public health and clinical research in Europe: results of the European Network of Cancer Registries survey among 161 population-based cancer registries during 2010-2012. Eur J Cancer. 2015;51(9):1039-49. https://doi.org/10.1016/j.ejca.2014.07.016
Anttila A, Lönnberg S, Ponti A, Suonio E, Villain P, Coebergh JW, et al. Towards better implementation of cancer screening in Europe through improved monitoring and evaluation and greater engagement of cancer registries. Eur J Cancer. 2015;51(2):241-51. https://doi.org/10.1016/j.ejca.2014.10.022
Ruiz A, Facio Á. Hospital-based cancer registry: a tool for patient care, management and quality. A focus on its use for quality assessment. Rev Oncol. 2004;6(2):104-13. https://doi.org/10.1007/BF02710038
The ACTION Study Group. Catastrophic health expenditure and 12-month mortality associated with cancer in Southeast Asia: Results from a longitudinal study in eight countries. BMC Med. 2015;13(1):190. https://doi.org/10.1186/s12916-015-0433-1
Indonesia Ministerial of Health Decree. Guideline on classification and standard of teaching hospital. 2008 [cited 2020 Jul 12]. Available from: http://bprs.kemkes.go.id/v1/uploads/pdffiles/peraturan/5%20KMK%20No.%201069%20ttg%20Pedoman%20Klasifikasi%20dan%20Standar%20RS%20Pendidikan.pdf. Indonesian.
Indonesia Ministerial of Health Decree. Cancer registration managing hospital and national cancer burden data control center. 2016 [cited 2020 Jul 12]. Available from: https://www.persi.or.id/images/regulasi/kepmenkes/kmk4102016.pdf. Indonesian.
Godjali DD, Pardamean B, Suzanna E. Development of Indonesia's cancer registration system. Indonesian Journal of Cancer. 2012;6(2):61-6. Indonesian.
Copyright (c) 2020 Soehartati Gondhowiardjo, Ericko Ekaputra, Achmad Randi, Sri Mutya Sekarutami
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
Authors who publish with Medical Journal of Indonesia agree to the following terms:
- Authors retain copyright and grant Medical Journal of Indonesia right of first publication with the work simultaneously licensed under a Creative Commons Attribution-NonCommercial License that allows others to remix, adapt, build upon the work non-commercially with an acknowledgment of the work’s authorship and initial publication in Medical Journal of Indonesia.
- Authors are permitted to copy and redistribute the journal's published version of the work non-commercially (e.g., post it to an institutional repository or publish it in a book), with an acknowledgment of its initial publication in Medical Journal of Indonesia.