Abstract
Since its creation in 1964, the Ontario Cancer Registry (OCR) has been an important source of high-quality information on cancer incidence and mortality. As a population-based registry, the OCR can be used to assess the provincial burden of cancer, track the progress of cancer control programs, identify health disparities among subpopulations, plan and improve healthcare, perform health services research, verify clinical guideline adherence, evaluate screening effectiveness, and much more. With over one third of Canadians residing in Ontario, the OCR is the nation’s largest provincial cancer registry and a major contributor to the Canadian Cancer Registry. In 2015 alone, the OCR collected data on an estimated 83,000 malignant cases.
Through its active participation in Canadian, North American, and international standard setting bodies, the OCR adopts the latest methods for registry data collection and reporting. The OCR is created entirely from records generated for purposes other than cancer registration. These records include pathology reports, treatment-level activity, hospital discharges, surgery data, and death certificates. Electronic records are linked at the person level and then “resolved” into incident cases of cancer using a unique computerized medical logic. Recent technological updates to the OCR have further modernized the registry and prepared it for future developments in the field of cancer registration.
This chapter describes the evolution of the OCR, its basic processes and components of automation, data elements, data quality measures, linkage processes, and other aspects of the registry that make it of particular interest to health services researchers and more broadly to the healthcare and public health community.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Abbreviations
- AJCC:
-
American Joint Committee on Cancer
- ALR:
-
Activity Level Reporting
- CCO:
-
Cancer Care Ontario
- CIHI:
-
Canadian Institute for Health Information
- CS:
-
Collaborative Stage
- DAD:
-
CIHI’s Discharge Abstract Database
- DCO:
-
Death certificate only
- DSA:
-
Data sharing agreement
- eCC:
-
Electronic Cancer Checklist
- EDW:
-
Enterprise Data Warehouse
- EDW-OCR:
-
Enterprise Data Warehouse based OCR
- eMaRC:
-
Electronic Mapping, Reporting, and Coding Plus
- ePath:
-
Electronic pathology data collection system
- IACR:
-
International Association of Cancer Registries
- IARC:
-
International Agency for Research on Cancer
- ICBP:
-
International Cancer Benchmarking Partnership
- ICD:
-
International Classification of Diseases
- ICD-O:
-
International Classification of Diseases for Oncology
- MPH:
-
Multiple Primary and Histology
- NAACCR:
-
North American Association of Central Cancer Registries
- NACRS:
-
CIHI’s National Ambulatory Care Reporting System
- OCR:
-
Ontario Cancer Registry
- OCRIS:
-
Ontario Cancer Registry Information System
- OCTRF:
-
Ontario Cancer Treatment and Research Foundation
- RCC:
-
Regional Cancer Center
- SEER:
-
Surveillance, Epidemiology, and End Results program
- SSF:
-
Site-specific factors
- TNM:
-
Tumor Node Metastasis staging
References
Allemani C, Weir HK, Carreira H, Harewood R, Spika D, Wang XS. Global surveillance of cancer survival 1995–2009: analysis of individual data for 25,676,887 patients from 279 population-based registries in 67 countries (CONCORD-2). Lancet. 2015;385(9972):977–1010.
Ashworth A, Kong W, Chow EL, Mackillop W. The fractionation of palliative radiation therapy for bone metastases in Ontario. Paper presented at: The 56th Annual Meeting of the American Society for Radiation Oncology; San Francisco; Sept 2014.
Berman DM, Kawashima A, Peng Y, Mackillop WJ, Siemens DR, Booth CM. Reporting trends and prognostic significance of lymphovascular invasion in muscle-invasive urothelial carcinoma: a population-based study. Int J Urol. 2015;22(2):163–70.
Biagi JJ, Wong R, Brierley J, Rahal R, Ross J. Assessing compliance with practice treatment guidelines by treatment centers and the reasons for noncompliance. Paper presented at: The 2009 Annual Meeting of the American Society of Clinical Oncology; Orlando; May 2009.
Boon H, Westlake K, Deber R, Moineddin R. Problem-solving and decision-making preferences: no difference between complementary and alternative medicine users and non-users. Complement Ther Med. 2005;13(3):213–6.
Boucher BA, Cotterchio M, Curca IA, Kreiger N, Harris SA, Kirsh VA, et al. Intake of phytoestrogen foods and supplements among women recently diagnosed with breast cancer in Ontario, Canada. Nutr Cancer. 2012;64(5):695–703.
Boyd NF, Guo H, Martin LJ, Sun L, Stone J, Fishell E, et al. Mammographic density and the risk and detection of breast cancer. N Engl J Med. 2007;356(3):227–36.
Cancer Act, R.S.O 1990, c. C.1 [Internet]. 22 June 2006 [cited 28 Oct 2015]. Available from: http://www.ontario.ca/laws/statute/90c01
Candido E, Young S, Nishri D. One cancer or two? The impact of changes to the rules for counting multiple primary cancers on estimates of cancer burden in Ontario [Internet]. In: Proceedings of the 2015 Canadian Society for Epidemiology and Biostatistics Conference; 1–4 June 2015; Mississauga/Toronto: Cancer Care Ontario; 2015. Available at: http://csebca.ipage.com/wordpress/wp-content/uploads/2014/06/June-2_1430_SouthStudio_C1.2-Candido.pdf
Centres for Disease Control and Prevention. Registry Plus, a suite of publicly available software programs for collecting and processing cancer registry data [Internet]. Atlanta: National Center for Chronic Disease Prevention and Health Promotion; Jan 2015 [cited 28 Oct 2015]. Available at: http://www.cdc.gov/cancer/npcr/
Chiarelli AM, Majpruz V, Brown P, Theriault M, Shumak R, Mai V. The contribution of clinical breast examination to the accuracy of breast screening. J Natl Cancer Inst. 2009;101(18):1236–43.
Chiarelli AM, Edwards SA, Prummel MV, Muradali D, Majpruz V, Done SJ, et al. Digital compared with screen-film mammography: performance measures in concurrent cohorts within an organized breast screening program. Radiology. 2013;268(3):684–93.
Clarke EA, Marrett LD, Kreiger N. Cancer registration in Ontario: a computer approach. IARC Sci Publ. 1991;95:246–57.
Coleman MP, Quaresma M, Berrino F, Lutz JM, De Angelis R, Capocaccia R, et al. Cancer survival on five continents: a worldwide population-based study (CONCORD). Lancet Oncol. 2008;9(8):730–56.
Cordeiro ED, Dixon M, Coburn N, Holloway C. A patient-centered approach toward wait times in the surgical management of breast cancer in the province of Ontario. Ann Surg Oncol. 2015;22(8):2509–16.
Enright K, Grunfeld E, Yun L, Moineddin R, Dent SF, Eisen A, et al. Acute care utilization (ACU) among women receiving adjuvant chemotherapy for early breast cancer (EBC). Paper presented at: The 2012 Breast Cancer Symposium; San Francisco; Sept 2012.
Hodgson DC, Grunfeld E, Gunraj N, Del Giudice L. A population-based study of follow-up care for Hodgkin lymphoma survivors: opportunities to improve surveillance for relapse and late effects. Cancer. 2010;116(14):3417–25.
International Cancer Benchmarking. Showcasing our findings and impacts. London: Cancer Research; Dec 2014 [cited 28 Oct 2015]. Available from: http://www.cancerresearchuk.org/sites/default/files/icbp_pb_1012214_booklet_final.pdf
Johnson CH, Peace S, Adamo P, Fritz A, Percy-Laurry A, Edwards BK. The 2007 Multiple Primary and Histology Coding Rules [Internet]. Bethesda: National Cancer Institute’s Surveillance Epidemiology and End Results Program; Aug 2012. Available at: http://seer.cancer.gov/tools/mphrules/
Kagedan DJ, Raju R, Dixon M, Shin E, Li Q, Liu N, et al. Predictors of actual survival in resected pancreatic adenocarcinoma: A population-level analysis. Paper presented at: The 15th Annual Americas Hepato-Pancreato-Biliary Congress; Miami Beach; Sept 2015.
Krahn MD, Bremner KE, Alibhai SM, Ni A, Tomlinson G, Laporte A, et al. A reference set of health utilities for long-term survivors of prostate cancer: population-based data from Ontario, Canada. Qual Life Res. 2013;22(10):2951–62.
Leveridge MJ, Siemens DR, Mackillop WJ, Peng Y, Tannock IF, Berman DM, et al. Radical cystectomy and adjuvant chemotherapy for bladder cancer in the elderly: a population-based study. Urology. 2015;85(4):791–8.
MacKillop W, Siemens R, Zaza K, Kong W, Peng P, Berman D, et al. The outcomes of radiation therapy and surgery for bladder cancer: a population-based study. Paper presented at: The 56th Annual Meeting of the American Society for Radiation Oncology; San Francisco; Sept 2014a.
MacKillop W, Kong W, Zaza K, Owen T, Booth C. Volume of practice and the outcomes of radiation therapy for head and neck cancer. Paper presented at: The 56th Annual Meeting of the American Society for Radiation Oncology; San Francisco; Sept 2014b.
Macneil SD, Liu K, Shariff SZ, Thind A, Winquist E, Yoo J, et al. Secular trends in the survival of patients with laryngeal carcinoma, 1995–2007. Curr Oncol. 2015;22(2):85–99.
McGee J, Narod S. Low-malignant-potential tumor risk factor analysis: a matched case–control analysis. Paper presented at: The 41st Annual Meeting of the Society of Gynecologic Oncologists; San Francisco; Mar 2010.
Mittmann N, Isogai PK, Saskin R, Liu N, Porter J, Cheung MC, et al. Homecare utilization and costs in colorectal cancer. Paper presented at: Healthcare Cost, Quality, and Policy: Driving Stakeholder Innovation in Process and Practice Conference; Toronto; Nov 2013.
Nanji S, Mackillop WJ, Wei X, Booth CM. Management and outcome of colorectal cancer (CRC) liver metastases in the elderly: A population-based study. Paper presented at: The 15th Annual Americas Hepato-Pancreato-Biliary Congress; Miami Beach; Sept 2015.
Nishri ED, Sheppard AJ, Withrow DR, Marrett LD. Cancer survival among First Nations people of Ontario, Canada (1968–2007). Int J Cancer. 2015;136(3):639–45.
Parkin DM, Bray F. Evaluation of data quality in the cancer registry: principles and methods part II: Completeness. Eur J Cancer. 2009;45:756–64.
Personal Health Information Protection Act; June 2016 [cited July 2016]. Available from: https://www.ontario.ca/laws/statute/04p03
Richard PO, Alibhai S, Urbach D, Fleshner NE, Timilshina N, Klotz L, et al. The uptake of active surveillance in prostate cancer: Results of a population based-study. Paper presented at: The 2015 Annual Meeting of the American Urological Association; New Orleans; Apr 2015.
Smith LM, Strumpf EC, Kaufman JS, Lofters A, Schwandt M, Levesque LE. The early benefits of human papillomavirus vaccination on cervical dysplasia and anogenital warts. Pediatrics. 2015;135(5):1131–40.
Tinmouth JM, Lim T, Kone A, Mccurdy B, Dube C, Rabeneck L. Risk of colorectal cancer among those who are gFOBt positive but have had a recent prior colonoscopy: experience from an organized screening program. Paper presented at: Digestive Disease Week 2015; Washington, DC; May 2015.
Zhukova N, Pole J, Mistry M, Fried I, Bartels U, Huang A, et al. Clinical and molecular determinants of long-term survival in children with low grade glioma; a population based study. Paper presented at: The 16th International Symposium on Pediatric Neuro-Oncology in Conjunction with the 8th St. Jude-VIVA Forum; Singapore; 28 June 2015–2 July 2015.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Technical Appendix
Technical Appendix
Synoptic pathology reports are an integral component of the EDW and feed the Pathology Data Mart, which is needed for CS integration (Fig. 9). Synoptic pathology reports from the Pathology Data Mart, OCR case files and CS abstracts are utilized by the Registry Plus service to drive CS integration and populate the CS data mart (see section “Cancer Stage at Diagnosis” for more information on CS and its processes). Registry Plus is a suite of publicly available free software programs for collecting and processing cancer registry data (Centers for Disease Control and Prevention 2015).
ePath, eMaRC, and ASTAIRE
All pathology reports are handled through CCO’s ePath electronic pathology reporting system. receives, processes and stores pathology reports, connecting the diagnostic laboratories to the OCR. ePath is comprised of several major subsystems, including the Electonic Mapping, Reporting, and Coding (eMaRC) and the Automated Synoptic Template Analysis Interface and Rule Engine (ASTAIRE).
CCO eMaRC is a subcomponent of the ePath system, which processes and stores pathology reports received in HL7 messaging format. CCO eMaRC automatically filters cancer vs non-cancer reports and non-reportable reports and provides partial automation for numerous ICD-O-3 diagnoses codes, collaborative staging elements, and creates NAACCR compatible abstract records. The system also merges multiple reports for a single patient so as to prevent the creation of extra cases in the OCR.
A data quality assessment tool, ASTAIRE ensures that synoptic data is compliant with the College of American Pathologists standards. ASTAIRE is made up of three components: GINGER, FRED, and ADELE. Combined, GINGER and FRED ensure that synoptic data is sufficiently complete and in line with current eCC versions. ADELE then cleans data so that may be admitted to the EDW.
In the interest of privacy and efficiency, data handled through ePath is coded in Health Level Seven V2 format, which is a secure method of data transmission designed to protect sensitive health information. This data contains three main elements: patient ID (PID), observation report ID (OBR), and observations (OBX). Patient ID contains personal and identifiable information, such as a patient’s name, sex, and address. The observation report ID pertains to the pathology report and provides information regarding the pathologist, surgeon, referrals, and specimen collection. The observations data element conveys information regarding the clinical diagnosis, clinical history, gross pathology, submitted tissues, and full diagnosis.
Rights and permissions
Copyright information
© 2019 Her Majesty the Queen in Right of Canada
About this entry
Cite this entry
Prodhan, S., King, M.J., De, P., Gilbert, J. (2019). Health Services Data: The Ontario Cancer Registry (a Unique, Linked, and Automated Population-Based Registry). In: Levy, A., Goring, S., Gatsonis, C., Sobolev, B., van Ginneken, E., Busse, R. (eds) Health Services Evaluation. Health Services Research. Springer, New York, NY. https://doi.org/10.1007/978-1-4939-8715-3_18
Download citation
DOI: https://doi.org/10.1007/978-1-4939-8715-3_18
Published:
Publisher Name: Springer, New York, NY
Print ISBN: 978-1-4939-8714-6
Online ISBN: 978-1-4939-8715-3
eBook Packages: MedicineReference Module Medicine