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Update to APHEO from Cancer Care Ontario, Informatics and Surveillance

Update to APHEO from Cancer Care Ontario, Informatics and Surveillance. Loraine D Marrett Population Studies & Surveillance, Kamini Milnes Cancer Informatics September 25, 2009. Outline. CCO organization Changes to the Ontario Cancer Registry Updates on SEER*Stat and other data releases

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Update to APHEO from Cancer Care Ontario, Informatics and Surveillance

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  1. Update to APHEO fromCancer Care Ontario, Informatics and Surveillance Loraine D Marrett Population Studies & Surveillance, Kamini Milnes Cancer Informatics September 25, 2009

  2. Outline • CCO organization • Changes to the Ontario Cancer Registry • Updates on SEER*Stat and other data releases • Recent developments at Cancer Care Ontario • Addressing questions from APHEO to CCO, Oct 08 • Some emerging cancer trends • Future interactions

  3. CCO organization VP, Population Studies & Surveillance John McLaughlin VP & Chief Information Officer Rick Skinner Loraine Marrett Surveillance Cancer Informatics Kamini Milnes Ontario Health Study Ontario Cancer Registry Mary Jane King Occupational Cancer Research Centre Information Management Coordinator Charles Sagoe

  4. Changes to the Ontario Cancer Registry • The Ontario Cancer Registry is being reengineered • Will remain fully automated • Essential as the old system was developed in late 1970s based on now out-dated software, disease coding, data quality and understanding of cancer biology • Moved into a Data Warehouse environment • New tumour counting rules to align with North American registry standards effective 2007 diagnoses • all other Canadian provincial registries will report to the Canadian Cancer Registry at Stats Can using these rules • New system will enhance ability for OCR to respond to future changes in rules and cancer coding schemes

  5. Implications of changes • More cases of some types of cancers from 2007 on • Due largely to more liberal multiple primary counting rules • Most affected will be paired organs (e.g., breast) or large organs with multiple subsites (e.g., colon and melanoma) • We will register some types of tumours not now registered (e.g., in situs, benign and uncertain behaviour brain tumours) • New system is nearly complete • 1st release Mar 2010: 2007 & 2008 diagnoses to StatsCan • Public release: mid-late 2010 • We will be evaluating impact over next 9-12 months • Includes protocol for bridging trending and forecasting • We will be developing a communication strategy to anticipate and accompany public release

  6. How can you learn more? Initial informational sessions will be held for interested stakeholders through October More in depth sessions will be held in future, as we gain understanding of impact

  7. Updates on data releases

  8. Update: SEER*Stat • SEER*Stat 2005 CD just released • More accurate and complete populations, especially for LHINs • Enhanced documentation • To request, go to http://www.cancercare.on.ca/toolbox/systeminfo/requestccodata/ • SEER*Stat 2006 will be released in Spring 2010 • Last public cut using ‘old’ registry system • Awaiting updated populations from STC and Ontario MoFinance, particularly for LHINs • SEER*Stat 2007/2008 will be released late in 2010 • 2007/08 data only produced via new system • To include documentation about differences from earlier data • To include stage data, essentially complete for ‘big 4’ cancers • Release date depends in part of availability of cause of death data from ORG

  9. Update: Cancer in Ontario - a new cancer surveillance report • Cancer rates & trends 1981-2006 interpreted • Incidence and mortality • Survival • Prevalence • By age groups • Common cancers • ~40 page report + pdf on web • To be released in late 2009/early 2010 • Future focused reports on specific topics (e.g., risk modifiers, specific age groups) planned On the menu bar click "View > Header and Footer" and then change the footer text

  10. Most common cancers by sex *Total of rounded numbers may not equal rounded total number Source: Cancer Care Ontario (Ontario Cancer Registry: 2010 estimates provided by Informatics July 2007)

  11. Incidence trends by all cancers combined, Ontario, 1981-2005 Source: Cancer Care Ontario (Ontario Cancer Registry, 2009)

  12. Cancer by age group *Total of rounded numbers may not equal rounded total number Source: Cancer Care Ontario (Ontario Cancer Registry: 2010 estimates provided by Informatics July 2007)

  13. Incidence trends by age group, Ontario, 1981-2005 Source: Cancer Care Ontario (Ontario Cancer Registry, 2009)

  14. Update: 2005 Cancer ‘Snapshot’ on CCO website soon • New cases and deaths: numbers and rates for top cancers (tables and graphs) • by sex • by LHIN • Currently 2005 data, will have 2006 data for all Ontario • www.cancercare.on.ca click on Ontario Cancer System then Cancer Surveillance then Cancer Statistics & on Geographic Patterns

  15. Example: Percentage distribution of new cases for selected cancers, males, Ontario, 2005 New cases: All Other Cancers excludes non-melanoma (basal cell and squamous cell) skin cancer Source: Data extracted from Ontario Cancer Registry in February 2009 for SEER*Stat data release March 2009

  16. Update: Cancer facts • Will continue about monthly • Thanks for input on evaluation – see results in October Cancer Fact!!

  17. Colorectal cancer incidence in adolescents and young adults aged 15–29, Ontario, 1992–2005 Source: Ontario Cancer Facts, August 2009

  18. New cases of mesothelioma in malesOntario, 1980–2006 Source: Cancer Care Ontario (Ontario Cancer Registry, 2009)

  19. Recent developments at CCO • Occupational Cancer Research Centre • Ontario Health Study • Ontario Renal Network

  20. Opportunities for APHEO/CCO collaboration

  21. Requests from APHEO* • a clear process where Boards of Health may obtain timely data for areas smaller than the health unit level; • mechanisms or workshops to train public health epidemiologists on cancer analysis techniques; • a forum by which Boards of Health and CCO can share findings and data quality issues. * Letter from J. Oliver to K. Milnes, October 2008

  22. Additional APHEO recommendations • that data continue to be provided by CCO, to the health units, in the SEER*Stat format on a regular basis; • that training in the use of cancer data and SEER*Stat be offered periodically by CCO; • that cancer incidence and mortality data continue to be updated on the CCO website, including information on potential causes of cancer as well as explanations about trends; • that cancer incidence and mortality information on CCO’s website be provided at the public health unit level, and not just at the Local Health Integration Network level; • that alPHa’s recommendation for more timely data at smaller levels of geography be given high priority to allow Boards of Health to address cancer clusters and environmental exposure concerns.

  23. 1. Production of SEER*Stat • CCO is committed to providing cancer incidence & mortality data in the SEER*Stat format • Updates will occur on an annual basis or when a new year of complete data is available • Timeliness is affected by delays in receipt of Cause of Death from the Registrar General and updated population projections from the Ministry of Finance • 2007 data will be released later than usual due to the significant changes to the Ontario Cancer Registry, but the regular schedule will resume for 2008

  24. 2. Training in the use of cancer data • There is an excellent introductory program for SEER*Stat users, developed by NAACCR (North American Association of Central Cancer Registries) called the Cancer Surveillance Institute (CSI). • This program is offered periodically in Canada, sponsored by the Public Health Agency of Canada (PHAC), and has been well-attended by CCO and other provincial cancer agency staff. • CCO is willing to work with NAACCR and APHEO to make this available to Ontario PHU staff, provided funding can be secured.

  25. 3. CCO website content • Cancer in Ontario will be available on CCO’s website in late 2009/early 2010, and data will be updated periodically. • This report will contain rates and trends for 1964-2005, with explanations and interpretation. • CCO is happy to participate more regularly in APHEO events to provide more interpretation of emerging trends and risk factor analysis.

  26. 4. Information at PHU level on website • Currently, PHU-level incidence and mortality data are included in the SEER*Stat package • CCO would like to identify a few key representatives from the Health Units to work with to better understand the needs for PHU-level reporting on the CCO website. • CCO technical staff can then determine the feasibility and best approach to providing this information on the website.

  27. 5. Cancer clusters & analysis of environmental exposure • The release of small area data is governed by CCO’s Data Use and Disclosure Policy, and requires small cell suppression for non-research disclosures. • CCO would like to work with the OAHPP to discuss how best to develop capacity to support cancer cluster analysis. • The OHEIS project within CCO has also developed a cancer risk assessment system based on geospatial analysis of small area units. • Initial project underway with Sarnia PHU / OAHPP / Ministry of Environment. • Project is developing process to provide web-based access to the output of this system.

  28. Next steps • Schedule OCR Update session for interested APHEO members (web/phone conference) • Identify APHEO/CCO representatives to work on planning for: • CCO presentations at subsequent meetings on data quality, emerging trends, etc. • Opportunity to host Cancer Surveillance Institute for APHEO members • Understanding needs for web-based reporting • Further collaboration with OAHPP on cancer cluster analysis

  29. Emerging Cancer Trends

  30. Some emerging cancer trends • Thyroid cancer • Non-Hodgkin lymphoma • Kidney cancer • Testicular cancer • Esophageal cancer • Liver cancer

  31. Example: Percentage distribution of new cases for selected cancers, males, Ontario, 2005 New cases: All Other Cancers excludes non-melanoma (basal cell and squamous cell) skin cancer Source: Data extracted from Ontario Cancer Registry in February 2009 for SEER*Stat data release March 2009

  32. APC= 12.3% APC= 5.3% APC= 5.4% Thyroid cancer: Incidence trends, 1985-2004, age 15+, Ontario Significant Annual Percent Change (APC), p<0.05 Source: Cancer Care Ontario (Ontario Cancer Registry, 2007).

  33. Thyroid cancer: Incidence, 2000-04, females by LHIN

  34. GTA Thyroid cancer: Differences in detection by LHIN Relationship between 5-year average rate of diagnostic ultrasound (head/neck) and thyroid cancer incidence, Ontario 2000-04, Females by LHIN r=0.879, p<0.0001 Source: Ontario Health Insurance Plan (OHIP); Ontario Cancer Registry, 2007

  35. Thyroid cancer • Since 1985, thyroid cancer incidence  dramatically in Ontario, particularly among females • Reasons for this  remain unknown but likely include both: • Changes in diagnostic practices • Changing risk factor exposure and/or immigration patterns • Particularly rapid rise in females and geographic variation may be due to: • Differences in health care seeking behaviours • Differences in diagnostic services availability/utilization

  36. Non-Hodgkin lymphoma incidence, 1981–2005, Ontario APC: Males 1981-90: 3.1% per year* 1990-05: 1.1% per year* Females 1981-05: 1.7% per year* *Significant Annual Percent Change (APC), p<0.05 Source: Cancer Care Ontario (Ontario Cancer Registry, 2009)

  37. Non-Hodgkin lymphoma • Incidence rising prior to 1981 in Ontario • 5th most common cancer in Ontario males and 6th in females • Little is known about the causes for this increase • Strongest known risk factors of NHL are related to immune function (drugs, disease, viruses, etc.). • No evidence that increases in these risk factors accounted for the observed rise in incidence • In young men, incidence rose dramatically in the 1980s and fell in the early 1990s – reflects the rise and fall in AIDS cases

  38. Kidney and renal pelvis incidence, 1981–2005, Ontario APC” Males 1981-89: 3.5% per year* 1989-05: 0.5% per year* Females 1981-87: 7.8% per year* 1987-94: -0.7% per year 1994-05: 2.0% per year* *Significant Annual Percent Change (APC), p<0.05 Source: Cancer Care Ontario (Ontario Cancer Registry, 2009)

  39. Kidney cancer • Incidence rates in females have increased by 80% over the last 24 years • In males, the rise in incidence has been less steep and confined to earlier years. The rate in 2005 is about 44% higher than in 1981. • Rising incidence rates, particularly through the 1980s, were due in part to the introduction of new imaging methods that detect early tumours, such as ultrasound and computed tomography. • More recent rises in females may be related to the increasing prevalence of obesity and the continuing impact of smoking, both major risk factors for this cancer.

  40. Testicular cancer incidence, 1981–2005, Ontario Rising (1.4% per year*) *Significant Annual Percent Change (APC), p<0.05 Source: Cancer Care Ontario (Ontario Cancer Registry, 2009)

  41. Testicular cancer • There is no accepted explanation for the rising trend • Rise also seen in other developed countries • Known causes, including undescended testicle, previous testicular cancer and family history of the disease, do not explain the increasing trend • Other causes of testicular cancer are poorly understood

  42. Esophageal cancer incidence, 1981–2005, Ontario Stable (0.19% per year) Falling (-2.1% per year*) Rising (4.1% per year*) * Significant Annual Percent Change (APC), p<0.05 Source: Cancer Care Ontario (Ontario Cancer Registry, 2007)

  43. Esophageal cancer • The main cell types of esophageal cancer show opposing trends: • Esophageal adenocarcinoma on the rise • Squamous cell carcinoma on the decline • The relative importance of risk factors differ by subtype • Smoking increases the risk of both cell types but risk is much higher for squamous cell carcinoma than adenocarcinoma. • Obesity increases the risk of esophageal adenocarcinoma, evidence is inconsistent and unclear for squamous cell carcinoma. • Alcohol intake is primarily associated with squamous cell cancers

  44. Esophageal cancer • Obesity on rise since at least the 1980s in Ontario and since 1970s Canada-wide • The increase in adenocarcinoma may be related to an increase in the prevalence of obesity in Ontario • An increase gastroesophageal reflux disease (GERD) may also explain the rise (GERD is a condition that causes Barrett esophagus, considered a precursor to esophageal adenocarcinoma). Obesity may increase the risk of GERD. • Smoking rates have been declining since at least mid 1980s in Ontario and since mid-1960s in men and 1980s in women Canada-wide • The decline in squamous cell carcinoma may result from reductions in smoking

  45. Liver and intrahepatic bile duct cancer incidence, 1981–2005, Ontario Rising (4.3% per year*) Rising (3.6% per year*) *Significant Annual Percent Change (APC), p<0.05 Source: Cancer Care Ontario (Ontario Cancer Registry, 2009)

  46. Liver cancer • Part of rise likely due to increases in immigration to Ontario from regions where hepatitis B, aflatoxin-contaminated foods and liver flukes are more common • 90% of immigrants to Canada 1981-2006 came from countries where hepatitis B infection is "mid to strongly endemic“, ~ 5% of these immigrants would have chronic Hep B infection (Sherman & coworkers, population-based sero-surveys published for countries from which immigrants come to Canada) • Currently reporting on immigration from countries with high rates of chronic hepatitis B infection (Morris Sherman, Toronto General Hospital, unpublished) • Currently examining the effect of place of birth on liver cancer mortality (Prithwish De)

  47. Contact information • Loraine Marrett, Director, Surveillance • Loraine.marrett@cancercare.on.ca • Kamini Milnes, Director, Cancer Informatics • Kamini.milnes@cancercare.on.ca • Charles Sagoe, Information Management Coordinator • Charles.sagoe@cancercare.on.ca

  48. Data access process How do I request data from CCO? All data requests are made to the Information Management Coordinator: • Data requests for research are made on the Research Data Request Form, signed and emailed or faxed to the Information Management Coordinator: 416-971-6888. The research protocol and Research Ethics Board approval must also be sent before the request will be reviewed. • Data requests unrelated to research are made on the General Data Request Form and emailed to theInformation:DataRequest@cancercare.on.ca. • For details on the Data Request Process: http://www.cancercare.on.ca/toolbox/systeminfo/requestccodata/

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