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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