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DATA GUIDANCE TABLES
The four data guidance tables propose a range of options for jurisdictions to consider for data
collection. Many more options are proposed than are likely to be relevant or possible.
The data guidance tables list indicators that are high-level and not cancer type specific, so
that they can be applied across all 15 Optimal Cancer Care Pathways. Some jurisdictions
with the data capabilities may choose to collect and report on cancer type–specific data at
much greater depth than suggested in this guidance
Table 1.Monitoring Policy and Strategy Alignment (question 1)
Aspect of
embedding
Optimal Cancer
Care Pathways
Awareness of
Optimal Cancer
Care Pathways
across cancer
services and
among health
professionals and
other staff
Formal
agreements to
adopt Optimal
Cancer Care
Pathways
Incorporation of
Optimal Cancer
Care Pathways in
planning for
jurisdictional
cancer plans and
clinical pathways
Possible high-level indicators
Data source options to consider
 Percentage of cancer services that
are actively communicating
information about Optimal Cancer
Care Pathways to their staff
 Jurisdictional-led survey
 Communications activity data as a
proxy for message reach
 Percentage of cancer health
professionals who are aware of
Optimal Cancer Care Pathways
 Number of Memoranda of
Understanding (MOU) or other
formal agreements to adopt
Optimal Cancer Care Pathways
 Jurisdictional records
 Number of clinical pathways with
explicit reference to Optimal
Cancer Care Pathways
 Analysis of cancer plans and clinical
pathways
 Number of clinical pathways
reviewed in line with Optimal
Cancer Care Pathways
 Explicit reference to Optimal
Cancer Care Pathways within
jurisdictional and local service
policies
 Jurisdictional-led survey
(acknowledge that this will be
influenced by planning cycles and
timeframes for jurisdictions’ Cancer
Control Plans)
 Explicit reference to Optimal
Cancer Care Pathways within
Cancer Control Plans and shorter
term Cancer Work Plans
1
Table 2. Monitoring Patient Experience (question 2)
Aspect of
patient
experience
Patient
awareness of
Optimal Cancer
Care Pathways
Possible high-level indicators
Data source options to consider
 Percentage of patients:
o reporting that they are aware
of the patient Optimal
Cancer Care Pathway
 Jurisdictional-led patient survey
o
Information,
communication,
education
(diagnosis and
treatment)
reporting that they obtained
a copy of the Optimal Cancer
Care Pathway
 Percentage of patients:
o reporting that they
understood their diagnosis
o
who were given written
information about their
diagnosis
o
who were offered a written
assessment and care plan
o
who were given the name of
someone who coordinated
their care throughout
treatment
 Communications activity data as a
proxy for message reach
 Local health service/hospital data,
e.g. multidisciplinary team meeting
records, patient records
 Local/state Oncology Information
System
 Jurisdictional-led patient survey
 NHS National Cancer Patient
Experience Survey (developed by
the National Health Service in the
UK, currently being adapted and
use in some jurisdictions, e.g. NSW
Cancer Patient Experience Survey)
 Critical Cancer Care Events
(CCCE) Survey – patient
experience survey developed in
Victoria by Cancer Council Victoria
 Capture and reporting of key
validated patient-reported outcome
measures via Oncology Information
System (as undertaken in NSW)
 Local health service/ hospital data,
e.g. multidisciplinary team meeting
records, patient records
Patient
coordination and
integration of
care, continuity
and transition
Respect for
patient
preference
 Percentage of patients:
o reporting that their GP
appeared to receive enough
information about diagnosis,
care and treatment
o
reporting adequate
involvement in decisions
about care and treatment
o
reporting that their views
were taken into account
during treatment
 Percentage of patients:
o reporting that the possible
side effects of treatments
were explained in an
understandable way
o
 As above
 As above
who were given written
2
Aspect of
patient
experience
Possible high-level indicators
Data source options to consider
information about the side
effects of treatments
3
Table 3. Monitoring Alignment of Current Practice with Optimal Cancer Care Pathways
(question 3)
Element of
Optimal
Cancer Care
Pathway
Screening
participation
Possible high-level indicators1
Data source options to consider
 Percentage of target population
screened through national/state
and territory screening programs
 Primary Health Networks
 State & Territory BreastScreen
Registers
 State & Territory Cervical Cytology
Registers
Timeframes
 Time from abnormal/positive
screening result to diagnostic
assessment
 Time from diagnosis to treatment
 Screening registers: BreastScreen,
Cervical Cytology
 Local health service/hospital data, e.g.
admissions data
 Local/state Oncology Information
Systems
Surgical
utilisation
 Ratio of surgery procedural rates
compared with optimal evidencebased utilisation
 Local health service/hospital data, e.g.
admissions data
 Local/state Oncology Information
Systems
 Cancer Clinical Registries
 National Hospital Morbidity Database
(Australian Institute for Health and
Welfare is the data custodian)
 Medicare Benefits Scheme data
(where procedure descriptors are
specific enough to relate these data to
cancer type)
 Established cancer type–specific data
sets, e.g. Bi-National Colorectal
Cancer Minimum Dataset
Radiotherapy
utilisation
 Percentage of patients who
receive external beam radiation
therapy within 12 months of
diagnosis (first treatment only)
 As above
 Ratio of actual radiotherapy
utilisation compared with optimal
evidence-based utilisation
Chemotherapy
utilisation
 Percentage of patients treated with
chemotherapy within 12 months of
diagnosis (first treatment only)
 As above
 Ratio of actual chemotherapy
utilisation compared with optimal
evidence-based utilisation
1
Indicators are intentionally not disease-specific. In most cases, details for measurement and
interpretation will need to be adapted for the Optimal Cancer Care Pathway(s) of focus.
4
Possible high-level indicators1
Data source options to consider
 Percentage of new cancer cases
discussed at a multidisciplinary
team (MDT) meeting
 Local health service/hospital data, e.g.
multidisciplinary team meeting records,
patient records
 Percentage of cases discussed at
a MDT meeting for which
treatment plans are developed by
the MDT
 Local/state Oncology Information
Systems
Psychosocial
care
 Percentage of patients screened
for psychosocial distress
 Local health service/hospital data, e.g.
multidisciplinary team meeting records,
patient records
Clinical trial
participation
 Percentage of patients who were
enrolled in a clinical trial
 Hospital clinical trial registers
Element of
Optimal
Cancer Care
Pathway
Multidisciplinary
care
 Percentage of clinical trials with nil
recruitment
 Percentage of clinical trials closed
early due to low recruitment
Survivorship
 Percentage of patients who have a
survivorship plan
 Local health service/hospital data, e.g.
multidisciplinary team meeting records,
patient records
End-of-life and
palliative care
 Percentage of patients who
received chemotherapy during last
month of life
 Local health service/hospital data, e.g.
multidisciplinary team meeting records,
patient records
 Percentage of patients with an
advanced care directive
Table 4. Across all Priority Questions (qualitative data)
Reporting
element
Variation across
the pathway
Resource
implications of
adopting
Optimal Cancer
Care Pathways
Possible high-level indicators
Data source options to consider
 Extent to which jurisdiction is able to
use available data to identify areas
of variation in align with Optimal
Cancer Care Pathways, e.g.
variation by cancer type, point in
cancer pathway, geographic region,
patient socioeconomic or other
factors
 Description of data available and
how it has been used
 Resources associated with adopting
Optimal Cancer Care Pathways
 Map and description of resource
implications
 Any resource savings associated
with adopting Optimal Cancer Care
Pathways
 Jurisdictional records
 Jurisdictional records
 Stakeholder consultations
5
Reporting
element
Enablers for
adopting
Optimal Cancer
Care Pathways
Possible high-level indicators
Data source options to consider
 What has helped most in working
towards Optimal Cancer Care
Pathway adoption?
 Synthesis of a breadth of
perspectives (across locations and
roles) that can be collected in formal
and informal ways, such as:
 What have the successes been?
 What tips would you share with
another jurisdiction seeking to adopt
the same Optimal Cancer Care
Pathway/s?
 Stakeholder interviews
 Workshops and meetings with key
stakeholders
 Stakeholder survey
 Opportunistic feedback
Challenges for
adopting
Optimal Cancer
Care Pathways
 What have some of the challenges
been in working towards Optimal
Cancer Care Pathway adoption?
 As above
 How have these been overcome?
6