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Taiwan's Nationwide Cancer Registry System of 40 Years: Past, Present

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Taiwan's Nationwide Cancer Registry System of 40 Years: Past, Present Journal of the Formosan Medical Association (2019) 118, 856e858 Available online at www.sciencedirect.com ScienceDirect journal homepage: www.jfma-online.com Perspective Taiwan’s Nationwide Cancer Registry System of 40 years: Past, present, and future Chun-Ju Chiang a,b, Ying-Wei Wang c, Wen-Chung Lee a,b,* a Institute of Epidemiology and Preventive Medicine, College of Public Health, National Taiwan University, Taipei, Taiwan b Taiwan Cancer Registry, Taipei, Taiwan c Health Promotion Administration, Ministry of Health and Welfare, Taipei, Taiwan Received 29 October 2018; accepted 15 January 2019 The Taiwan Cancer Registry (TCR) is a nationwide demonstrate that the TCR is one of the highest-quality population-based cancer registry system that was estab- cancer registries in the world.3 lished by the Ministry of Health and Welfare in 1979. The The TCR publishes annual cancer statistics for all cancer data of patients with newly diagnosed malignant cancer in sites, and the TCR’s accurate data is used for policy making hospitals with 50 or more beds in Taiwan are collected and and academic research. For example, the Health Promotion reported to the TCR. To evaluate cancer care patterns and Administration (HPA) in Taiwan has implemented national treatment outcomes in Taiwan, the TCR established a long- screening programs for cancers of the cervix uteri, oral form database in which cancer staging and detailed treat- cavity, colon, rectum, and female breast,4 and the TCR ment and recurrence information has been recorded since database has been employed to verify the effectiveness of 2002. Furthermore, in 2011, the long-form database these nationwide cancer screening programs for reducing began to include detailed information regarding cancer cancer burdens in Taiwan.5,6 Additionally, liver cancer was site-specific factors, such as laboratory values, tumor once a major health problem in Taiwan; however, since the markers, and other clinical data related to patient care. implementation of the National Immunization Program and Additional details about the history and activities of the the National Viral Hepatitis Treatment Program, the inci- TCR have been well-documented.1,2 Following the enact- dence and mortality of liver cancer in Taiwan has significantly ment of the Cancer Control Act in 2003, the data quality decreased.7 A recent TCR database study projected that the and completeness of the TCR database were improved and secular trend of liver cancer incidence for both sexes will standards of excellence have been continuously main- continue to decrease by 27%e37% from 2015 to 2035.8 tained. Specifically, the completeness of the TCR is 98.4%; The TCR and the Taiwan Society of Cancer Registry the percentage of cases with death certificate only is 0.9%; (TSCR) have been working closely to develop and promote the mortality versus incidence ratio is 45.1%; the percent- uniform data standards for cancer registration. Addition- age of morphological verification is 93.0% for all sites ally, these databases periodically undergo field data audits combined and 97.6% for all sites excluding the liver; and the based on medical chart reviews to ensure data accuracy.2 data timeliness is 14 months (Table 1). These data The TSCR is a professional organization that collaborates with reporting hospitals, clinical professionals, and governmental agencies. The TSCR provides education and * Corresponding author. Institute of Epidemiology and Preventive counseling services to registrars to help them enhance their Medicine, College of Public Health, National Taiwan University, professional skills. The TSCR also offers certification for Room 536, No. 17 Hsu-Chow Road, Taipei 100, Taiwan. basic and advanced cancer registrars. E-mail address: [email protected] (W.-C. Lee). https://doi.org/10.1016/j.jfma.2019.01.012 0929-6646/Copyright ª 2019, Formosan Medical Association. Published by Elsevier Taiwan LLC. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). Taiwan’s Nationwide Cancer Registry System of 40 Years 857 Table 1 Data quality indicators of the Taiwan Cancer Registry after enactment of the Cancer Control Act in 2003. Indicator Year of diagnosis 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 Completenessa 95.5 94.3 96.7 97.6 97.8 97.6 97.6 97.0 97.7 98.4 98.4 98.2 98.2 98.4 Percentage of death 2.6 2.3 1.7 1.4 1.3 1.2 1.1 0.8 0.8 0.7 0.8 0.9 0.8 0.9 certificate onlyb Mortality verse incidence ratioc 55.5 51.2 51.8 50.0 50.5 47.1 44.4 44.0 44.9 44.3 44.1 44.0 43.8 45.1 Percentage of morphological 87.1 88.5 88.1 88.8 89.5 90.1 90.5 90.9 91.2 91.4 91.8 92.4 92.6 93.0 verificationd Percentage of morphological 94.4 95.2 95.1 95.3 96.0 96.3 96.3 96.4 96.7 96.8 97.1 97.2 97.4 97.6 verificationd (excluding liver cancer) Timelinesse 24 23 17 17 17 17 17 17 17 17 17 16 16 14 a Completeness (%): all registered cancer cases divided by all potential cancer cases from profiles of death certificate, NHI cata- strophic illnesses, and four major cancer screening programs. b Percentage of death certificate only (DCO): proportion of incident cases with information based on DCO. c Mortality verse incidence ratio (%): crude mortality rate divided by crude incidence rate (measured during the same period) of an invasive cancer. d Percentage of morphological verification (MV): proportion of incident cases with histological or cytological verification of cancer diagnosis. e Timeliness (months): interval between the date of diagnosis and the date at which the case was reported to the central cancer registry system. Healthcare quality for patients with cancer directly in- professionals to develop predictive, preventive, personal- fluences the survival rate of this population. In 2004, the ized, and participatory (P4) medical visions. Artificial in- HPA developed core measurement indicators to assess the telligence (AI)-based distributed machine learning care quality associated with major cancers in Taiwan, and techniques and cutting-edge statistical methods are play- the National Health Research Institutes (NHRI) in Taiwan ing increasingly critical roles in health data sciences.9 AI- established the “Cancer Treatment Quality Certification” based auto-abstracting may help registrars enhance the system and related operational standards in 2008.1,4 The quality and timeliness of routine cancer reporting. The goal of the certification standard is to help hospitals application of big data with AI to the development of new establish cancer health care structures and cancer treat- tools and systems will usher in a new era of quality in ment schemes. Evaluated hospitals are required to create clinical cancer treatment and introduce exciting break- holistic cancer committees to plan and supervise their throughs in patient care. The success of these efforts cancer operations, implement plans for cancer registration requires collaboration among government agencies, information and product management, form professional health facilities, academic institutes, and the technology cancer healthcare teams, devise clinical treatment indices, industry. and formulate standard operating procedures for adminis- tering health care. Since 2010, the TCR has regularly pro- vided feedback based on cancer survival data to reporting Conflicts of interest hospitals to help these institutions improve patient care. In addition, the TCR provides requisite data to the HPA and None of the authors have conflicts of interest to disclose. NHRI to enable monitoring of core cancer measurement indicators in individual hospitals. At the end of 2017, a total Acknowledgements of 58 hospitals had passed the certifications.4 These hos- pitals accounted for treatment of nearly 90% of incident The authors thank all team members of Taiwan Cancer cancer cases in Taiwan. Registry Center for their efforts and contributions. This The national cancer registry of Taiwan has been work was supported by grants from the Health Promotion operated smoothly for 40 years. In addition to cancer Administration, the Ministry of Health and Welfare, Taipei, registration data, numerous other health information Taiwan (A1051011; the tobacco control and health care profiles are recorded in Taiwan, such as death certificate funds). The funders had no role in the study design, anal- data, national health insurance claim data, cancer ysis, interpretation, reporting of results, or in the decision screening data, national biobank data, and health survey to submit themanuscript for publication. data. In 2011, the Health and Welfare Data Science Center (HWDC) began operations to enhance the quality of public health decision-making and promote related academic Appendix A. Supplementary data research. The HWDC integrates all of Taiwan’s health in- formation databases to provide a foundation for person- Supplementary data to this article can be found online at alized medicine and thereby enable health care https://doi.org/10.1016/j.jfma.2019.01.012. 858 C.-J. Chiang et al. References 5. Chen YY, You SL, Chen CA, Shih LY, Koong SL, Chao KY, et al. Effectiveness of national cervical cancer screening pro- gramme in Taiwan: 12-year experiences. Br J Canc 2009;101: 1. Chiang CJ, You SL, Chen CJ, Yang YW, Lo WC, Lai MS. Quality 174e7. assessment and improvement of nationwide cancer registration 6. Chiu HM, Chen SL, Yen AM, Chiu SY, Fann JC, Lee YC, et al. system in Taiwan: a review. Jpn J Clin Oncol 2015;45:291e6. Effectiveness of fecal immunochemical testing in reducing 2. Chiang CJ, Lo WC, Yang YW, You SL, Chen CJ, Lai MS. Incidence colorectal cancer mortality from the One Million Taiwanese and survival of adult cancer patients in Taiwan, 2002-2012.
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