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THE INTERNATIONAL CANCER BENCHMARKING PARTNERSHIP Summary of the partnership: findings, impacts and next steps Correct as of September 2016 Outline • What is the ICBP? • Findings from Phase 1 • Impacts • Launch of Phase 2 • Next steps Correct as of September 2016 2 Not just any international partnership • The only international cancer survival comparison study focussed on measuring differences and understanding factors that drive these • Multidisciplinary partnership of academics, clinicians, policymakers, cancer registry teams and data experts • Aimed at delivering high quality findings with rapid translation into practice • Funded by cancer charities (including CRUK), departments of health, cancer registries, universities in each jurisdiction Correct as of September 2016 3 Who has been involved so far? A total of 22 jurisdictions in 8 countries Correct as of September 2016 4 Phase 1 of the ICBP 13 jurisdictions in 6 countries 4 cancers Correct as of September 2016 5 Phase 1 modules Modules 1-3 are now complete (although followup studies are still occurring) Modules 4-5 are ongoing - up to 10 publications are due within the next 12 months Correct as of September 2016 6 Module 1 – survival differences (1 YEAR) • Breast, lung, colorectal and ovarian cancer survival is highest in Australia, Canada and Sweden, intermediate in Norway and lower in the UK and Denmark 90 AUS CAN SWE NOR DEN UK AUS SWE CAN NOR 85 80 45 40 SWE CAN 35 AUS NOR 30 DEN UK DEN 75 UK 70 25 65 20 1995-99 2000-02 2005-07 1995-99 Colorectal Cancer 1yr Relative Survival 2000-02 2005-07 Lung Cancer 1yr Relative Survival 80 100 98 96 94 92 SWE 75 CAN AUS NOR DEN UK 70 NOR CAN AUS DEN 65 UK 60 55 90 50 1995-99 2000-02 Breast Cancer 1yr Relative Survival 2005-07 1995-99 2000-02 2005-07 Ovarian Cancer 1yr Relative Survival Coleman MP, Forman D, Bryant H et al. Cancer survival in Australia, Canada, Denmark, Norway, Sweden and the UK, 1995-2007 (the International Cancer Benchmarking Partnership): an analysis of population-based cancer registry data. The Lancet 2011, 377: 127-138 Correct as of September 2016 7 Module 1 – survival differences (5 YEAR) Cancer survival improved overall between 1995-2007 in all jurisdictions Coleman MP, Forman D, Bryant H et al. Cancer survival in Australia, Canada, Denmark, Norway, Sweden and the UK, 1995-2007 (the International Cancer Benchmarking Partnership): an analysis of population-based cancer registry data. The Lancet 2011, 377: 127-138 Correct as of September 2016 8 Module 2 - awareness and beliefs • Lower survival rates in Denmark and UK are explained in part by lower cancer awareness and more negative beliefs about cancer Method • Surveyed the general population across all jurisdictions - nearly 20,000 were interviewed Headline findings • Surprisingly, positive attitudes and beliefs about cancer in all jurisdictions • Interestingly, found a low awareness of increasing risk with age (even in Sweden) • In the UK, people more likely to identify barriers to seeing their GP (though likely to vary at a national level) Forbes LJL, Simon AE, Warburton F et al. Differences in cancer awareness and beliefs between Australia, Canada, Denmark, Norway, Sweden and the UK (the International Cancer Benchmarking Partnership): do they contribute to differences in cancer survival? Brit J Cancer. 2013. 108(2):292-300 Correct as of September 2016 9 Module 3 – Primary care • • Investigated whether differences in primary care systems are associated with poor outcomes Surveyed of GPs focussing on clinical scenarios and direct questions about the health systems they work (length of consultations, direct access to diagnostic tests, waiting times for tests) Results • Association between overall survival and the readiness of GPs to refer or investigate a patient’s symptoms at first consultation - lung cancer scenario - UK has low survival rates and low readiness to refer/investigate Rose PW, et al. Explaining variation in cancer survival between 11 jurisdictions in the International Cancer Benchmarking Partnership: a primary care vignette survey. BMJ Open 2015;5: e007212 Correct as of September 2016 10 Module 4 - Time intervals and routes to diagnosis (from symptom to treatment) • Differences in time intervals from first symptom until diagnosis and treatment between jurisdictions could affect the outcomes of patients with suspected cancer. • The team developed validated patient, primary care practitioner (PCP) and cancer treatment specialists (CTS) questionnaires. Questionnaires gathered information on key milestones within the patient journey. • Information was provided on areas including: • • • • Specific time intervals and details of a patients route to diagnosis and treatment. The number of times a patient saw a health care professional before diagnosis. The nature of any referrals and diagnostic tests carried out To date, breast and colorectal data have been analysed. Correct as of September 2016 11 Module 5 – factors affecting short-term survival outcomes (registries and co-morbidities) The cancer survival benchmarking study highlighted that observed survival variation might be partly explained by differences in short-term survival. Two theories could explain this: Registry practices • • High quality cancer registration is essential for the calculation of cancer survival rates which underpin the core benchmark study. Differences in the collection and recording of data by cancer registries could be responsible for variations in 1-year survival calculations. Semi-structured interviews were conducted with key informants (face-to-face and by telephone). Variation practices, data sources and definitions used to register cancer patients were documented for each jurisdiction. Comorbidities • • Patients who die shortly after diagnosis could be more likely to be living with one or more health condition(s) (comorbidities) which affects treatment they receive and their chances of surviving. Data from cancer registries (Canada, Australia, UK and Norway) was linked with routine hospital admission datasets and analysed for lung cancer patients diagnosed between 2009-2012. The analysis explored international differences in co-morbidity, as well as the relation between co-morbidity and early deaths. Correct as of September 2016 12 Ovarian Module 1: data stage data: over 20,000 from 2.4 million patients adults Colorectal stage data: over 310,000 patients Over 150 collaborators in 13 jurisdictions Correct as of September 2016 Breast stage data: over 250,000 patients Lung stage data: over 57,000 patients Presented at over 15 Over 35 organisations conferences / globally funders Impact in numbers Module 2: over 19,000 people over the age of 50 Module 3: over 2,700 PCPs surveyed Module 4: over 22,000 surveys returned (so far) Over 1,600 citations for papers referencing ICBP Over 250 citations for centrally funded papers Impact - academic reach • Pioneered a range of methods and research tools to enable robust and unique international comparisons • Published 13 quality peer reviewed papers • Figures from the survival benchmark quoted in conference presentations globally; used as part of the rationale for many investigative research studies • Completed the first international comparisons of: Cancer survival and stage at diagnosis using routine data Cancer survival and public awareness, attitudes and beliefs (at this scale) Cancer survival and primary care referral behaviour and health system Correct as of September 2016 14 Impact - additional analyses Correct as of September 2016 Impact – policy reach The partnership has provided evidence for: • Cancer plans in Norway, Australia (Victoria) and the UK (Scotland and England). • Identifying priorities for new cancer control initiatives in Canada, such as establishing a Rapid Access Clinic for lung cancer in Alberta. • Public awareness campaigns in Denmark, targeting specific sections of the population, addressing barriers to seeing a health professional in England and Scotland. • Initiatives in England, Scotland and Wales aiming to improve access to diagnostics and exploring innovative diagnostic referral pathways. • The relevance of Danish reforms to cancer diagnostic pathways aimed at diagnosing cancers earlier. • Engagement exercises with GPs in Manitoba about barriers to accessing diagnostics, including urban/rural issues. • Projects to improve cancer data completeness and availability in NSW, Ontario, England and Wales. Correct as of September 2016 Phase 2 – who/what is involved 19 jurisdictions in 6 countries 8 cancers Correct as of September 2016 Phase 2 – Research questions 1. To establish the most up to date international cancer survival benchmark (plus insights into the impact of stage at diagnosis and stage-specific survival) for cancers of the colon, rectum, lung, ovary, liver, stomach, oesophagus, pancreas Plus two supplementary analyses: • Overview of international coding frameworks, including staging classifications – to confirm feasibility of collecting & comparing data • Quantifying the impact of local registration practices on short term cancer survival – to identify whether an adjustment factor should be applied to cancer survival comparisons Correct as of September 2016 18 Phase 2 – Research questions Further in-depth analyses: 2. Access to diagnostics and investigations e.g. capacity, workforce, use, location, guidelines, safety procedures, quality measures, costs. 3. Access to treatment and related factors e.g. specialisation/centralisation, quality of treatment, appropriateness, patient safety and innovation. 4. Cancer patient care pathways e.g. standardised clinical pathways, typical costs, who pays. 5. Structure of health systems e.g. care coordination and continuity, interface between primary and secondary care, comprehensiveness of healthcare systems. Correct as of September 2016 ICBP management team To be commissioned 19 Next steps • Open research calls for teams to carry out ‘health systems’ and ‘cancer patient pathways’ • Findings communicated to wide-range of audiences at upcoming international conferences • Production of an annual report reflecting progress and policy/practice impacts • Within the next 12 months up to 10 new publications from Module 4 and 5 Correct as of September 2016 20 Thank you! www.ICBP.org.uk [email protected] These slides were produced by the ICBP Programme Management team, based at Cancer Research UK: Brad Groves, Deborah Robinson, Samantha Harrison, Irene Reguilon Correct as of September 2016 21