loraine d marrett population studies & surveillance, kamini milnes cancer informatics september...

Loraine D MarrettPopulation Studies & Surveillance,

Kamini MilnesCancer Informatics

September 25, 2009

Update to APHEO fromCancer Care Ontario, Informatics and Surveillance

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

Cancer InformaticsKamini Milnes

VP, Population Studies & SurveillanceJohn McLaughlin

VP & Chief Information Officer

Rick Skinner

Ontario Cancer Registry

Mary Jane King

Information Management CoordinatorCharles Sagoe

Loraine MarrettSurveillance

Ontario Health Study

OccupationalCancer Research

Centre

4

• 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

Changes to the Ontario Cancer Registry

5

• 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

Implications of changes

6

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

How can you learn more?

7

Updates on data releases

8

• 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

Update: SEER*Stat


On the menu bar click "View > Header and Footer" and then change the footer text 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

10

Most common cancers by sex

*Total of rounded numbers may not equal rounded total numberSource: Cancer Care Ontario (Ontario Cancer Registry: 2010 estimates provided by Informatics July 2007)

Thyroid1,409

Non-Hodgkin lymphoma

1,356

Ovary1,057

Melanoma1,013

Leukemia761

Kidney 744

All other cancers7,208

Body of uterus 1,985

Lung 3,845

Colon and rectum3,951

Breast8,539

Females N=31,867*

27%

12%

12%6%4%

3%

3%

23%

2%

4%

2%

Prostate11,878

Colon and rectum4,856

Lung4,250 Bladder

1,578


1,482

Melanoma 1,304

Stomach798

All other cancers7,241

Oral cavity and pharynx

958Kidney 1,063

Leukemia1,157

Males N=36,565

32%

13%

12%4%

4%

3%

4%

20%

3%3%

2%

11

Incidence trends by all cancers combined, Ontario, 1981-2005

Source: Cancer Care Ontario (Ontario Cancer Registry, 2009)

0

50

100

150

200

250

300

350

400

450

500

1981 1984 1987 1990 1993 1996 1999 2002 2005

Year of diagnosis or death

Ag

e-s

tan

dard

ized

rate

per

10

0,0

00

(3-y

ea

r m

ov

ing a

ve

rage

s)

Male incidence Female incidenceMale mortality Female mortality

12

Cancer by age groupNew cases diagnosed, Ontario, 2010Both sexes combined by age group

N=68,432*

Age 30–497,172 (10%)

Age 00–14348 (1%)

Age 15–291,010 (1%)

Age 65–8433,770(49%)

Age 50–6420,774 (30%)

Age 85+5,358(8%)

*Total of rounded numbers may not equal rounded total numberSource: Cancer Care Ontario (Ontario Cancer Registry: 2010 estimates provided by Informatics July 2007)

13

Incidence trends by age group, Ontario, 1981-2005


0

50

100

150

200

250

1981 1984 1987 1990 1993 1996 1999 2002 2005

Year of diagnosis

Ag

e-s

tan

dard

ized

rate

per

10

0,0

00

M, 0–14 M, 15–29 M, 30–49F, 0–14 F, 15–29 F, 30–49

0

500

1,000

1,500

2,000

2,500

3,000

1981 1984 1987 1990 1993 1996 1999 2002 2005

Year of diagnosis

Ag

e-s

tan

dard

ized

rate

per

10

0,0

00

M, 50–64 M, 65+

F, 50–64 F, 65+

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

http://www.cancercare.on.ca/

15

Example: Percentage distribution of new cases for selected cancers, males, Ontario, 2005

11.5

1.2

1.4

1.4

1.5

1.6

2.1

2.3

2.9

3.0

3.2

3.4

4.2

4.6

12.7

13.6

29.3

0 5 10 15 20 25 30 35

All Other Cancers

Thyroid

Esophagus

Myeloma

Liver and Intrahepatic Bile Duct

Brain and Other Nervous System

P ancreas

Stomach

Kidney and Renal P elvis

Oral Cavity and P harynx

Leukemia

Melanoma of the Skin

Urinary Bladder

Non-Hodgkin Lymphoma

Colon and Rectum

Lung and Bronchus

P rostate

New CasesN = 31,102

Type of Cancer

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

• Will continue about monthly• Thanks for input on evaluation – see

results in October Cancer Fact!!

Update: Cancer facts

17

Colorectal cancer incidence in adolescents and young adults aged 15–29, Ontario, 1992–2005

0.0

0.5

1.0

1.5

2.0

1992 1994 1996 1998 2000 2002 2004 2006

Year of diagnosis

Ag

e-s

tan

dard

ized

rate

per

10

0,0

00

(3

-year

movin

g a

vera

ges)

Source: Ontario Cancer Facts, August 2009

18

New cases of mesothelioma in malesOntario, 1980–2006


0

20

40

60

80

100

120

140

160

180

1980 1984 1988 1992 1996 2000 2004 2008

Year of diagnosis

New

cas

es o

f m

eso

thel

iom

a (3

-yea

r m

ovin

g av

erag

e)

19

• Occupational Cancer Research Centre • Ontario Health Study• Ontario Renal Network

Recent developments at CCO

20

Opportunities for APHEO/CCO collaboration

21

Requests from APHEO*

1. a clear process where Boards of Health may obtain timely data for areas smaller than the health unit level;

2. mechanisms or workshops to train public health epidemiologists on cancer analysis techniques;

3. 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

1. that data continue to be provided by CCO, to the health units, in the SEER*Stat format on a regular basis;

2. that training in the use of cancer data and SEER*Stat be offered periodically by CCO;

3. 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;

4. 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;

5. 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


Kidney cancer

Testicular cancer

Esophageal cancer

Liver cancer

31

Example: Percentage distribution of new cases for selected cancers, males, Ontario, 2005

11.5

1.2

1.4

1.4

1.5

1.6

2.1

2.3

2.9

3.0

3.2

3.4

4.2

4.6

12.7

13.6

29.3

0 5 10 15 20 25 30 35

All Other Cancers

Thyroid

Esophagus

Myeloma

Liver and Intrahepatic Bile Duct

Brain and Other Nervous System

Pancreas

Stomach

Kidney and Renal Pelvis

Oral Cavity and Pharynx

Leukemia

Melanoma of the Skin

Urinary Bladder

Non-Hodgkin Lymphoma

Colon and Rectum

Lung and Bronchus

Prostate

New CasesN = 31,102

Type of Cancer

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

Thyroid cancer: Incidence trends, 1985-2004, age 15+, Ontario

APC= 12.3%

APC= 5.3%

APC= 5.4%

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

0 5 10 15 20 25 30 35 40

Erie St. Clair

South West

Waterloo Wellington

Hamilton Niagara H.B

Central West

Mississauga Halton

Toronto Central

Central

Central East

South East

Champlain

North Simcoe Muskoka

North East

North West

Ontario

Age-standardized rate per 100,000

34

Thyroid cancer: Differences in detection by LHIN

Source: Ontario Health Insurance Plan (OHIP); Ontario Cancer Registry, 2007

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

GTA

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


0

5

10

15

20

25

1981 1984 1987 1990 1993 1996 1999 2002 2005

Year of diagnosis

Ag

e-s

tan

dard

ized

rate

per

10

0,0

00

(3-y

ea

r m

ov

ing

av

era

ge

s)

Male Female

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

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


0

2

4

6

8

10

12

14

1981 1984 1987 1990 1993 1996 1999 2002 2005

Year of diagnosis

Ag

e-s

tan

dard

ized

rate

per

10

0,0

00

(3-y

ea

r m

ov

ing

av

era

ge

s)Male incidence Female incidence

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

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

*Significant Annual Percent Change (APC), p<0.05Source: Cancer Care Ontario (Ontario Cancer Registry, 2009)

0

1

2

3

4

5

6

1981 1984 1987 1990 1993 1996 1999 2002 2005

Year of diagnosis

Ag

e-s

tan

dard

ized

rate

per

10

0,0

00

(3-y

ea

r m

ov

ing

av

era

ge

s)

Rising (1.4% per year*)

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

* Significant Annual Percent Change (APC), p<0.05Source: Cancer Care Ontario (Ontario Cancer Registry, 2007)

0

1

2

3

4

5

1981 1984 1987 1990 1993 1996 1999 2002 2005

Year of diagnosis

Ag

e-st

and

ard

ized

rat

e p

er 1

00,0

00(3

-yr

mov

ing

aver

ages

)

All subtypes Adenocarcinoma Squamous cell carcinoma

Stable (0.19% per year)

Falling (-2.1% per year*)


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

*Significant Annual Percent Change (APC), p<0.05Source: Cancer Care Ontario (Ontario Cancer Registry, 2009)

0

1

2

3

4

5

6

7

1981 1984 1987 1990 1993 1996 1999 2002 2005

Year of diagnosis

Ag

e-s

tan

dard

ized

rate

per

10

0,0

00

(3-y

ea

r m

ov

ing a

ve

rage

s)

Male incidence Female incidence



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

• [email protected]

Kamini Milnes, Director, Cancer Informatics


Charles Sagoe, Information Management Coordinator


mailto:[email protected]



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 the Information: [email protected].

For details on the Data Request Process: http://www.cancercare.on.ca/toolbox/systeminfo/requestccodata/






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