Transcript Document

A world first in
cancer data
collection
Evaluation of Cancer
Outcomes Trial
Nicole Hopgood
Health Information Manager
Leigh Matheson
Health Information Manager
Ground breaking approach to cancer
data collection…
• A world first project involving the collection
of clinical cancer data across the entire
Barwon South West region
• A partnership between the Victorian
Department of Health, Barwon South
Western Regional Integrated Cancer
Service* and The Cancer Council Victoria
Evaluation of Cancer
Outcomes Trial
*The Integrated Cancer Services are funded by the Victorian
Government as part of Victoria's cancer reforms
Project Objectives
Trial a model of cancer data collection
across a regional area of Victoria
• Capture a nationally developed and agreed set
of data items
• Provision for statistical analysis and reporting
• Clinical Treatment
• Patient Outcomes
• Recurrence
• Population view of the occurrence of cancer in
the area
• Support current incidence and surveillance data
produced by the Victorian Cancer Registry (VCR)
Evaluation of Cancer
Outcomes Trial
Why this region for a world first
project?
• 33,000 Sq kms
• Pop – 340,000
• Approx. 230,000 live in Barwon Sub Region
• Approx. 1900 patients - diagnosed with
per annum
Evaluation of Cancer
Outcomes Trial
cancer
• Approx. 4000 patients - active prevalence
• 9 sites provide cancer treatment
The impact of cancer on our
community
‘When news broke in May (2006) that a
number of RMIT staff members had
been diagnosed with brain tumours,
questions were raised about a
possible ‘cancer cluster’.’
‘The details of the cancers showed it
wasn’t really a brain cancer cluster
after all’ (Registry Statistician and
Information Manager Vicky
Thursfield).
‘A similar process was used in April
(2006) to try to test the idea that
fluoridated water causes cancer.’
Evaluation of Cancer
Outcomes Trial
Figures going back to 1982 were used
to test the theory... ‘Rates in
metropolitan Melbourne, an area
that has had fluoridated water for a
long time, were actually lower than
the rest of Victoria’ (Ms Thursfield).
From "Cancer News" issue 193, July 2006
“It can’t be that difficult to collect, can
it?”
Two contrasting viewpoints…
• Surely we already have cancer staging
information, as it’s so simple and routine
to collect
• Collecting information on cancer stage,
especially TNM* detail may be a greater
challenge than the human genome
project
Evaluation of Cancer
Outcomes Trial
Viewpoints from “Collection of population-based cancer staging
information in Western Australia – a feasibility study”, 2004.
* Tumour Nodes Metastases.
Evaluation of Cancer
Outcomes Trial
Graphic from website "Creating Passionate Users"
Bridging the gap in cancer data
collection
What is currently
collected and sent to the
VCR
What is collected as part
of the ECO pilot
Patient Demographic
Information
Patient Demographic
Information
Basic Primary Tumour
and Metastatic
Tumour Information
Basic Primary Tumour
and Metastatic
Tumour Information
Basic Death Information
Death Information
Cancer Staging
Information
Tumour Size and Lymph
Node Information
Breast Tumour Stream
specific information
Treatment Information
Evaluation of Cancer
Outcomes Trial
Recurrence Information
(Primary and
Metastatic)
Who is involved?
St John of God, Geelong
Barwon Health
St John of God,
Colac Area Health
Warrnambool
Portland District Health
Western District Health Service Geelong Private Hospital
South West Healthcare
(Warrnambool & Camperdown)
Evaluation of Cancer
Outcomes Trial
The technical stuff…
Data repositories are currently being built at
each site to allow for monthly transfer of ECO
data to the Victorian Cancer Registry
Evaluation of Cancer
Outcomes Trial
ECO Trial Data January - October 2008 (All Public Sites)
Preliminary Findings
Breast Cancer Stage breakdown
70
64
Number of Cases
60
50
39
40
30
23
20
16
16
12
10
6
2
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2A
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2B
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3A
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3B
Stage
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3C
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ECO Trial Data January - October 2008 (All Public Sites)
Preliminary Findings
Breast Cancer – Stage 3&4 Treatment breakdown
Chemotherapy
5%
Surgery &
Chemotherapy
9%
Surgery
5%
Surgery,
Chemotherapy &
Radiotherapy
44%
Radiotherapy
9%
No Treatment
14%
Chemotherapy &
Radiotherapy
14%
ECO Trial Data January - October 2008 (Major Regional Site)
Preliminary Findings
Treatment modality across all Tumour Streams
Surgery
No treatment
Unknown
5%
4%
3%
26%
6%
Chemotherapy
11%
Radiotherapy
Surgery and Chemotherapy
11%
20%
14%
Radiotherapy and
Chemotherapy
Radiotherapy, Chemotherapy
and Surgery
Surgery and Radiotherapy
ECO Trial Data January - October 2008 (Major Regional Site)
Preliminary Findings
Most common Metastatic sites
36%
Lymph nodes
Bone and bone marrow
15%
Liver
15%
8%
Brain and cerebral meninges
7%
Lung
6%
Metasite
Pleura
5%
Retroperitoneum and peritoneum
3%
Other specified sites
Adrenal gland
1%
Large intestine and rectum
1%
Small intestine
1%
Skin
1%
Other and unspecified digestive organs
1%
Mediastinum
1%
Ovary
1%
0%
5%
10%
15%
20%
25%
Percentage
30%
35%
40%
Innovation benefits everyone!
• Patients and Community
• Improved quality of care
• Better Outcomes
• Healthcare Professionals
• Increased data quality
• Better access through comprehensive
data repositories
Evaluation of Cancer
Outcomes Trial
What have we learnt so far…
• 8 regional/rural sites = IT headache!
• More than just a Sunday drive…
• Who are you, What are you doing again?
• Can patients/health services opt out?
• A fractured approach to the patient
journey
Evaluation of Cancer
Outcomes Trial
Where to from here…
Evaluation of Cancer
Outcomes Trial
What may seem impossible today, may be
the norm tomorrow
Thank You for listening!