A cancer registry is an essential part of any rational programme of cancer control. Cancer incidence data is currently collected by provincial and territorial cancer registries (PTCRs) and reported to the Canadian Cancer Registry (CCR) and maintained by Statistic Canada. Completeness and quality of data resides with the provinces. Furthermore, each province submits its data set to the North American Association of Central Cancer Registries (NAACCR) based in the US.
While progress has been made to the Canadian national cancer registry, the system falls short in key areas. The problem with the latter underlines the fact that Canada cannot look to other countries for cancer data. Our healthcare system is too different. Our wait times for surgery and radiation are far longer than other Westernized countries with socialized healthcare systems. Surgery is often the entry point into cancer treatment and delays have the potential to affect outcomes. Wait times are typically a means to assess how well the cancer system in a province is working. In fact, a study conducted by the Fraser Institute compared the costs and performance (using 42 indicators) of 28 universal healthcare systems in high-income countries. Canada ranked at the bottom half of the list.
Key areas that need to be addressed:
(1) Lack of treatment data: Cancer registries main purpose resides around public health surveillance. The registries assess the burden side but do not thoroughly collect data on the treatment side. By omitting treatment data, a big part of the cancer picture is not captured. Lack of data leads to a higher reliance on trial data. A controlled trial environment does not necessarily translate into the results observed on the community level. Conversely, we have no way of knowing which drugs or regimens are providing increased overall survival and/or progression free survival. Collecting hospital based treatments and oral therapies would encourage the inclusion of cancer drugs on provincial formularies and provide much needed longitudinal data.
(2) Working from the same play book: For a national registry feeding off provincial registries to function, all provinces must work off the same play book. A quick look at ovarian cancer survival statistics highlights this issue. The fine print notes that data from Quebec were excluded, in part, because the method for ascertaining the date of cancer diagnosis in Quebec differed from the method used by other provinces. How can we compare outcomes across provinces if there is no uniformity on the collection of data?
(3) Under-reporting a strong concern: From 1992-2012, Ontario did not report in-situ bladder cancers and underestimated cases of Kaposi’s sarcoma. Newfoundland and Labrador had incomplete linkage of cancer data with death data. Quebec’s reliance until 2010 on hospital data (hospitalization or day surgeries) under represents cancers such as prostate and melanoma which can be managed without hospitalization or day surgery.
Three Canadian registries were ineligible for NAACCR certification in 2016 for 2013 Incidence data: Ontario, Quebec, and Prince Edward Island. Why? Certification is based on how complete the data set is and whether all criteria were met. For example, Ontario does not have a death certificate process. A patient whose death was attributed to cancer but did not go through the hospital system would not be registered in the system hence the concern of under reporting.
(4) Lack of Race or ethnicity data: Surprisingly, no race or ethnicity data is collected in Canada short-changing the registry of any racial or ethnic variations. Certain tumour types have higher incidence rates among certain ethnic groups. This hinders health authorities’ ability to reduce inequalities in cancer incidence and survival rates. In a country where over half the citizens claim a 2nd heritage on census forms, this seems troubling.
(5) Are prevention programs working? Lung or malignant melanoma which are cancer types that are highly preventable are allocated government funds to raise awareness among citizens. A comprehensive national tumour registry allows government to gauge whether its prevention programs are having any impact on incidence rates. But as mentioned previously, if cancers such as melanoma are being under reported there is no way to gauge the success of such programs
