The International Cancer Benchmarking Partnership (ICBP): A model for international collaboration

1. The International Cancer Benchmarking Partnership (ICBP):A model for international collaboration Professor Sir Mike Richards Copenhagen April 2012

2. The International Cancer Benchmarking Partnership (ICBP) Why do we need an international partnership? Who is involved? What are we doing? Successes and challenges How are we using the findings from ICBP in the UK Possible lessons for future collaborations

3. Why do we need an international collaborative? (1) • We already have a considerable amount of internationally comparable data on cancer e.g. • Incidence (Globocan: IARC) • Mortality (IARC; OECD) • Survival (EUROCARE; CONCORD – but only for patients diagnosed more than 10 years ago) • Chemotherapy (International variations report 2010) • CT and MRI scanners (OECD) • Radiotherapy facilities (OECD)

4. Why do we need an international collaboration? (2) But ... there’s a lot we do not know, because we do not collect routine data Better information could help individual countries to formulate policy to improve outcomes

5. Gaps in information • What didn’t we know at start of ICBP? • Up to date comparisons of survival • Reasons for variations on survival • What we still don’t know • Differences in access to care and use of diagnostics • Differences in treatment rates • Differences in quality of life of survivors • Differences in patients’ experience of care • Differences in costs of cancer care • Etc.

6. European Country Selection:National Cancer Registration

7. ICBP: Who is involved? (1) • 6 countries; 12 Jurisdictions • Australia (New South Wales; Victoria) • Canada (British Columbia, Alberta, Manitoba and Ontario) • Denmark • Norway • Sweden • UK (England, Wales and Northern Ireland) • Jurisdictions selected on basis of comprehensive cancer registration and willingness to participate

8. ICBP: Who is involved? (2) • A very large number of policy makers, cancer registry staff, epidemiologists, academic clinicians, behavioural scientists • A Programme Board with representation from each jurisdiction (funders) • Module teams • Programme management secretariat • Initially McKinsey’s • Now Cancer Research UK

9. ICBP: What are we doing? • Two key questions are being addressed • How has survival changed between 1995 and 2007? • Can we explain international differences in survival? • Focusing on 4 cancers • Breast, colorectal, lung and ovarian cancer • 5 Modules • Module 1: Epidemiology (survival, stage + treatment) • Module 2: Survey of public awareness, beliefs and behaviours (study specific survey tool) • Module 3: Survey of primary care physicians • Module 4: Newly diagnosed patients – Routes to diagnosis, delays, stage and treatment • Module 5: To be decided

10. ICBP: Successes • The partnership is now well established. Partners are enthusiastic about working together • Module 1 • Survival comparisons published (Lancet 2011) • New methods for comparing different staging systems (“esperanto” for stage) submitted for publication • Stage and survival papers x 4: Submitted • Module 2 • Survey tool developed and survey conducted in all 6 countries • Methods and results papers: completed • Module 3 • In progress

11. ICBP Module 1: Lancet paper

12. ICBP: 5 year relative survival. Coleman et al, Lancet 2011 AUS Lung Cancer 5yr RS Colorectal Cancer 5yr RS Breast Cancer 5yr RS Ovarian Cancer 5yr RS

13. ICBP: 1 year relative survival. Coleman et al, Lancet 2011 Colorectal Cancer 1yr RS Lung Cancer 1yr RS Breast Cancer 1yr RS Ovarian Cancer 1yr RS

14. ICBP: Challenges

15. ICBP: Challenges • Programme Board meetings: Finding an acceptable time of day for participants from 3 continents! • Funding • Department of Health in England funded Module 1. This enabled trust and understanding to develop within the partnership • Shared funding for other modules – difficult to get jurisdictions to commit • Timescales • Time costs money • Getting the balance right between ‘quick and dirty’ and ‘academically rigorous’ • Ensuring comparability of data/survey tools. Harmonisation between languages • Sustainability

16. How are we using the findings in England? • The Government has set a goal of “saving an additional 5000 lives” from cancer by 2014/15. In effect this means halving the gap between England and the best in Europe (or around the world) • We are now converting the “5000 lives” into 1 and 5 year survival rates for breast, colorectal and lung cancer • The findings have re-emphasised the need to focus on early diagnosis of cancer. A National Awareness and Early Diagnosis Initiative is in progress

17. Breast cancer: 5 year relative survival, England v. combined Australia, Sweden and Canada

18. Colorectal cancer: 5 year relative survival, England v. combined Australia, Sweden and Canada

19. Lung cancer: 5 year relative survival, England v. combined Australia, Sweden and Canada

20. Be clear on cancer: Bowel cancer

21. Lung Cancer Campaign

22. Possible lessons for future collaborations • International collaborations are hard work, take time and cost money ... but can yield very valuable insights • There is still a great deal of scope for going further on cancer (e.g. Other outcomes apart from survival) and inclusion of other countries • There is potential to look at other disease areas (e.g. cardiovascular) if adequate datasets exist – and if there is sufficient interest • Excellent programme management is essential