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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