DATA GUIDANCE TABLESThe 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
Possible high-level indicators Data source options to consider
Awareness of Optimal Cancer Care Pathways across cancer services and among health professionals and other staff
Percentage of cancer services that are actively communicating information about Optimal Cancer Care Pathways to their staff
Percentage of cancer health professionals who are aware of Optimal Cancer Care Pathways
Jurisdictional-led survey Communications activity data as a
proxy for message reach
Formal agreements to adopt Optimal Cancer Care Pathways
Number of Memoranda of Understanding (MOU) or other formal agreements to adopt Optimal Cancer Care Pathways
Jurisdictional records
Incorporation of Optimal Cancer Care Pathways in planning for jurisdictional cancer plans and clinical pathways
Number of clinical pathways with explicit reference to Optimal Cancer Care 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
Explicit reference to Optimal Cancer Care Pathways within Cancer Control Plans and shorter term Cancer Work Plans
Analysis of cancer plans and clinical pathways
Jurisdictional-led survey (acknowledge that this will be influenced by planning cycles and timeframes for jurisdictions’ Cancer Control Plans)
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Table 2. Monitoring Patient Experience (question 2)
Aspect of patient experience
Possible high-level indicators Data source options to consider
Patient awareness of Optimal Cancer Care Pathways
Percentage of patients:o reporting that they are aware
of the patient Optimal Cancer Care Pathway
o reporting that they obtained a copy of the Optimal Cancer Care Pathway
Jurisdictional-led patient survey 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
Information, communication, education (diagnosis and treatment)
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
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
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
As above
Respect for patient preference
Percentage of patients:o reporting that the possible
side effects of treatments were explained in an understandable way
As above
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Aspect of patient experience
Possible high-level indicators Data source options to consider
o who were given written information about the side effects of treatments
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Table 3. Monitoring Alignment of Current Practice with Optimal Cancer Care Pathways (question 3)
Element of Optimal Cancer Care Pathway
Possible high-level indicators1 Data source options to consider
Screening participation
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 evidence-based 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)
Ratio of actual radiotherapy utilisation compared with optimal evidence-based utilisation
As above
Chemotherapy utilisation
Percentage of patients treated with chemotherapy within 12 months of diagnosis (first treatment only)
Ratio of actual chemotherapy utilisation compared with optimal evidence-based utilisation
As above
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.
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Element of Optimal Cancer Care Pathway
Possible high-level indicators Data source options to consider
Multidisciplinary care
Percentage of new cancer cases discussed at a multidisciplinary team (MDT) meeting
Percentage of cases discussed at a MDT meeting for which treatment plans are developed by the MDT
Local health service/hospital data, e.g. multidisciplinary team meeting records, patient records
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
Percentage of clinical trials with nil recruitment
Percentage of clinical trials closed early due to low recruitment
Hospital clinical trial registers
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
Percentage of patients with an advanced care directive
Local health service/hospital data, e.g. multidisciplinary team meeting records, patient records
Table 4. Across all Priority Questions (qualitative data)
Reporting element
Possible high-level indicators Data source options to consider
Variation across the pathway
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
Jurisdictional records
Resource implications of adopting Optimal Cancer Care Pathways
Resources associated with adopting Optimal Cancer Care Pathways
Any resource savings associated with adopting Optimal Cancer Care Pathways
Map and description of resource implications
Jurisdictional records Stakeholder consultations
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Reporting element
Possible high-level indicators Data source options to consider
Enablers for adopting Optimal Cancer Care Pathways
What has helped most in working towards Optimal Cancer Care Pathway adoption?
What have the successes been? What tips would you share with
another jurisdiction seeking to adopt the same Optimal Cancer Care Pathway/s?
Synthesis of a breadth of perspectives (across locations and roles) that can be collected in formal and informal ways, such as:
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?
How have these been overcome?
As above
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