Download Attachment 2 Statement of reasons in the final draft of the

Attachment 2
Statement of reasons in the final draft of the
regulations
Cancer (Reporting) Regulations 2012
Table 1: Statement of reasons
Issue raised
Response from the Department of Health
Number of submissions raising
the issue
The responding organisation states
that they are unable to provide the
ECOG status
As a prescribed register, under the proposed
regulations, the agency will not be required to
record the ECOG status.
1
Disparities in cancer treatment
outcomes based on socio-economic
factors, age and rurality
The department undertakes to discuss with the 1
Registry a work program to assist with
descriptive analyses for monitoring. In addition
the department has in principle agreement with
the Cancer Council Victoria to facilitate the
routine linking of the Registry dataset with the
department’s admitted episode data collection
(with due consideration of privacy) to help us
better understand access and utilisation of
treatment following diagnosis. This will be the
first step in helping us understand (utilising
relevant analyses) what might be some of the
underlying causes of cancer outcomes
disparities.
Recommendation that the proposed
regulations capture information on
cancer stage at time of diagnosis
and the time points to disease
recurrence and progression
The Department acknowledges that the capture 2
of information on cancer stage at diagnosis and
the time points to disease
recurrence/progression is very important in
understanding the impact of treatment/s and
impact of the disease on individuals with
cancer.
Currently, the regulations as they stand and as
proposed under the Regulatory Impact
Statement require the reporting of this
information from existing notifying organisations
and will include private radiotherapy and day
oncology centres in the near future. This
requirement is via the specification of disease
stage (at time of diagnosis) and subsequent
advice on recurrence (date, sites and details of
treatment (if any)) in Schedule 2 of the
regulations.
The Victorian Cancer Registry currently
routinely collects stage of disease at diagnosis
for breast, bowel and prostate cancer. Capture
of recurrence/progression does rely on contact
with notifying organisations either at the time of
active treatment or following histological
confirmation of disease recurrence/progression
and these organisations being able to efficiently
capture and then report this information to the
Registry.
It is acknowledged that not all individuals will
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Department of Health
Issue raised
Response from the Department of Health
Number of submissions raising
the issue
have details of their recurrence captured
contemporaneously with the event, as there will
be some individuals where the diagnosis of
progression is made on imaging or on the basis
on clinical opinion. Under the current
regulations and those proposed notification
under these circumstances would not routinely
occur.
Methodologically, the capture of this
information on a routine and cost effective
basis is problematic. There are currently a
couple of projects underway which will
contribute to our understanding of the systems
required to promote this:
 A region wide cancer clinical registry project
(Barwon South West Region in partnership
with the Victorian Cancer Registry) which is
currently routinely capturing information on
cancer stage and date and site of first
recurrence where individuals re-present for
treatment (inpatient and day care settings).
This project has not yet been evaluated with
respect to this data collection. (Refer to
http://www.swarh2.com.au/bswrics/content/
eco-project for details.)
 The Victorian Cancer Registry is currently
undertaking a project, funded by Cancer
Australia, in the use of natural language
processing (NLP) to effectively and
efficiently extract information from existing
Information Technology systems, including
imaging data systems, for information on
cancer stage and recurrence. Diagnostic
imaging reports, specifically CT, MRI and
PET have been identified as a rich source
of information on cancer stage and
recurrence. (Refer to
http://www.cancervic.org.au/about-ourresearch/registry-statistics/capture-stagerecurrence for details.) A similar project
looking at data extraction from pathology
reports (utilising e-path technologies) is also
being tested.
This work is ongoing and will inform future
efforts to broaden and improve data capture via
the Victorian Cancer Registry. Unfortunately
this work will take some further time, but it is
being actively monitored in the hope it will
assist in achieving desired improvements.
Currently the most robust methodological
means we have for investigating time to
recurrence/disease progression and the
changes (if any) in tumour characteristics is via
clinical trials and the Department and the
Cancer Council of Victoria are both actively
supporting improved access and uptake of
cancer clinical trials.
Difficult, in a clinical setting, to
mandate the capture of ECOG
status
Page 2
The Department acknowledges that the capture 2
of ECOG status will be difficult. However, we
know that there are some services who,
through diligence and commitment, are
Department of Health
Issue raised
Response from the Department of Health
Number of submissions raising
the issue
managing to capture this data on a routine
basis.
The department is committed to continuing to
work with our ICS and health services to
improve the recording and capture of this
information on a routine basis
The regulations need to define
The Department accepts the need to clarify the 2
precisely when the ECOG should be proposed regulations and the drafting will be
captured and recorded by clinicians amended to reflect this by requesting that
ECOG performance status be recorded at the
time of diagnosis.
Inclusions of the residential aged
care sector and private clinicians as
required reporters to the Registry
Page 3
The Cancer Act does not recognise these
categories as potential notifiers. A revision of
the Act would be required and would
necessitate considerable consultation with the
affected sector.
In addition, under the Cancer Act, we could
prescribe some, but not all, residential aged
care providers as health service
establishments. The Act would allow us to
capture supported residential services, but not
Commonwealth-funded aged care providers,
who are regulated under the Commonwealth
Aged Care Act.
1
Department of Health