A/Prof Chris Stevenson 29/08/2016

CANCER SURVEILLANCE
ROUTINE SURVEILLANCE What is a good surveillance system?
How do we do cancer surveillance?
OF CANCER How do we use the data?
What do we know about cancer that we would not
know without the surveillance data?
Issues for policy makers

CHRIS STEVENSON

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PUBLIC HEALTH SURVEILLANCE PUBLIC HEALTH SURVEILLANCE

Public health surveillance is the systematic, ongoing
collection, management, analysis, and interpretation of
data followed by the dissemination of these data to
public health programs to stimulate public health action
Thacker SB, Qualters JR & Lee LM
Public health surveillance is the systematic, ongoing
collection, management, analysis, and interpretation of
data followed by the dissemination of these data to
public health programs to stimulate public health action
Thacker SB, Qualters JR & Lee LM

Centers for Disease Control and Prevention. Public Health Surveillance in the United States: Centers for Disease Control and Prevention. Public Health Surveillance in the United States:
Evolution and Challenges. MMWR 2012;61(Suppl; July 27, 2012):pp79. Evolution and Challenges. MMWR 2012;61(Suppl; July 27, 2012):pp79.

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PUBLIC HEALTH SURVEILLANCE HEALTH EVENT SURVEILLANCE

The essential features of a surveillance system are:
Practical, clear case definition for each disease;
Workable, uniform and continuous data collection methods; and Follow long term trends or patterns
Secular trends (ignoring fluctuations)
Rapidity of collection, analysis, interpretation and dissemination of data Forecast future trends or patterns
Essential Epidemiology Webb, P & Bain, C Recognise new agents, changes in host response
Assess potential for new diseases to emerge
Understand & prepare for greater susceptibility
Detect sudden changes (person, place & time)
Disease new population subgroup
Disease new areas
Identification of epidemics & outbreaks
Identification of bio-terrorist activity

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A/Prof Chris Stevenson 29/08/2016

HEALTH EVENT SURVEILLANCE POLICY ISSUE

Balance between spending money on counting disease
and actually preventing, controlling and treating disease

Essential for:
public health planning & implementation
evaluation of health practice

disease prevention & control

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CANCER SURVEILLANCE CANCER SURVEILLANCE

Cancer in Australia is a notifiable disease Disease incidence
Except for Non-Melanoma Skin Cancer Number of new cases of a disease in a specific time period
Disease prevalence
Hospital Pathology laboratories Radiotherapy centres
Number of existing cases of disease at a point in time
Cancer surveillance gives cancer incidence
State/Territory cancer Registries Primarily used for cancer prevention and control

Registrar of births deaths and marriages

Australian Institute of Health and Welfare

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CANCER SURVEILLANCE POLICY ISSUE

Information is collected about patients with cancer and Balance between personal privacy and public good
includes:
name and address

sex

date of birth
country of birth

whether the person is of Aboriginal or Torres Strait Islander descent

clinical details about the cancer

the notifying institution and doctor.

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A/Prof Chris Stevenson 29/08/2016

CANCER SURVEILLANCE CANCER SURVEILLANCE

Information is collected about patients with cancer and Information is collected about patients with cancer and
includes: includes:
name and address name and address
sex
sex
date of birth
date of birth
country of birth
country of birth whether the person is of Aboriginal or Torres Strait Islander descent
whether the person is of Aboriginal or Torres Strait Islander descent clinical details about the cancer
clinical details about the cancer the notifying institution and doctor.
the notifying institution and doctor. Used for investigating cancer incidence in subgroups
May need to verify details with potentially different trends and/or at different risk
Equity
Difficult data to collect

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CANCER SURVEILLANCE CANCER SURVEILLANCE

Information is collected about patients with cancer and Information is collected about patients with cancer and
includes: includes:
name and address name and address
sex sex
date of birth date of birth
country of birth country of birth
whether the person is of Aboriginal or Torres Strait Islander descent whether the person is of Aboriginal or Torres Strait Islander descent
clinical details about the cancer clinical details about the cancer
the notifying institution and doctor. the notifying institution and doctor.
Investigate trends by age Match data from many sources
Early onset cancers Maintain data over time

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POLICY ISSUE NATIONAL CANCER SURVEILLANCE

Strong privacy protection vs health policy Data provided to the AIHW
makers/researchers need to know
Matching records
between States
Matching with
deaths data

National trends by
socioeconomic status

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A/Prof Chris Stevenson 29/08/2016

POLICY ISSUE PUBLIC HEALTH SURVEILLANCE

Who owns and reports on data? The essential features of a surveillance system are:
Consistent data Practical, clear case definition for each disease;
Data collected by different people in different jurisdictions at different
times. Workable, uniform and continuous data collection methods; and
How do we aggregate it to be national data? Rapidity of collection, analysis, interpretation and dissemination of data
eg who is a current smoker? Essential Epidemiology Webb, P & Bain, C

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POLICY ISSUE POLICY ISSUE

How often do we need data? Who needs the data?
Cancer data changes slowly Policy makers
Health planners
Prevention interventions take many years to produce results Researchers
How current can we make the data? General public

Policy makers need current data Data must be presented in an appropriate form
Aggregate data available in spreadsheets from AIHW website
Reporting takes time De-identified, national unit-record data may be released for specific
Verification/data matching takes time purposes
Very strict approval process requiring scientific and ethical review
Most current data 2014 Reports use appropriate language
Required some estimation AIHW reports written to be understood by interested general public
Year 12 level

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POLICY ISSUE WHAT ABOUT NON-MELANOMA SKIN CANCER?

Balance between accurate language and technical
jargon
non melanocytic skin cancer vs non melanoma skin cancer
Most frequently diagnosed cancer in Australia
more NMSC diagnosed each year than all cancers combined
Small mortality burden but high cost burden
Not recorded in cancer registries.
Treatment for NMSC is often carried out in doctors
surgeries without histological confirmation

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A/Prof Chris Stevenson 29/08/2016

WHAT ABOUT NON-MELANOMA SKIN CANCER? POLICY ISSUE

Where do we get NMSC data from? Dont get complete list of all NMSC
National Household survey data. Does this matter?
Most recent data from 2002 Get population estimates from the survey data
Reports of NMSC followed up with treating doctor or hospital These are probably close enough for surveillance purposes
Gives the frequency of NMSC treated during the previous 12 months Cant link incidence to death register
Is this the same as incidence? Can get unlinked deaths data
We dont know how long the cancer has been there Mortality burden is very small.
Treatment involves removal of cancer, so majority of cancers only Cant get survival estimates.
treated once.

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SOME KEY RESULTS KEY RESULTS FOR 2014

Unless otherwise stated, all results taken from Lifetime risk.
Excludes non melanoma skin cancer
Australian Institute of Health and Welfare 2014. Cancer
in Australia: an overview 2014. Cancer series No 90. Cat.
no. CAN 88. Canberra: AIHW
Downloadable from
http://www.aihw.gov.au/publication-detail/?id=60129550047

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KEY RESULTS FOR 2014 KEY RESULTS FOR 2014

Top 10 incident cancers 2014.
Excludes non melanoma skin cancer
Top 5 most commonly
diagnosed cancers account for
around 64% of all new cancers
Top 10 incident cancers 2014.
Excludes non melanoma skin cancer
Top 5 most commonly
diagnosed cancers account for
around 63% of all new cancers

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A/Prof Chris Stevenson 29/08/2016

KEY RESULTS FOR 2014 KEY RESULTS FOR 2014

Top 10 cancers 2014 incidence and mortality. Top 10 cancers 2014 incidence and mortality.
Excludes non melanoma skin cancer Excludes non melanoma skin cancer

Top 5 most commonly fatal Top 5 most commonly fatal

cancers account for around cancers account for around
51% of all new cancers 55% of all cancer deaths

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OVERALL TRENDS OVERALL TRENDS PROSTATE CANCER

Introduction of PSA testing

New cases brought forward by testing

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COMPARISON BETWEEN GROUPS COMPARISON BETWEEN GROUPS

Poorer access to services later diagnosis

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A/Prof Chris Stevenson 29/08/2016

COMPARISON BETWEEN GROUPS COMPARISON BETWEEN GROUPS

Socioeconomic status
Based on area measure
ABS Index of Relative Disadvantage
Quintiles of disadvantage
From most disadvantaged to least disadvantaged

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COMPARISON BETWEEN GROUPS WHAT IS MISSING

Cancer stage
Cancer stage at diagnosis refers to the extent or spread of cancer at the
time of diagnosis
Treatment details
No information is available on the treatments applied to cancers,
complications with cancer treatment, or the frequency of recurrence of
cancer after treatment
Health system expenditure on cancer
Indigenous status
There is no national mechanism for reporting Aboriginal or Torres Strait
Islander identification on pathology forms.
All state and territory cancer registries collect information on Indigenous
status; however, in some jurisdictions the quality of Indigenous status
data is insufficient for analyses.

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