The Role of the 3 rd sector in Cancer Research

1. The Role of the 3rd sector in Cancer Research Professor Jane Maher Joint Chief Medical Officer Macmillan Cancer Support Twitter: @maherjane Welsh Cancer Conference, Cardiff 23rd November 2017

2. “I thought research was to do with drugs” - Roberta Lovick, end of life campaigner

3. What we’re covering • Some roles of the third sector in cancer research: • Making the invisible visible. • Making big data relevant. • Maintaining focus on what matters most • Work together on shared goals to achieve more

4. By making the invisible, visible… …we make the un-researchable, researchable

5. Step one -providing a big number …..

6. 2 million UK cancer survivors at end of 2008

8. The next step - revealing unmet needs in this population.

10. Needs were significant and specific to cancer and its treatment

11. …providing the case for support in the cancer survivorship agenda

13. In Northern Ireland, breast cancer patients offered self-managed follow-up. • Patients feel more supported to manage the physical, emotional and practical aspects of cancer • Thousands of follow-up appointments released • Waiting times reduced PricewaterhouseCoopers. Macmillan Cancer Support -Evaluation of the Transforming Cancer Follow-up Programme in Northern Ireland Final Report. February 2015. http://www.evidence.nhs.uk/qipp

14. Ongoing research showing how the cancer story is changing Cancer is no longer this simple Cured cancer • Incurable cancer

16. Consequences of treatment At least 22,000 people living with and beyond cancer are experiencing chronic fatigue • Estimated prevalence of long term consequences in Wales in 2015 At least 33,000 people in Wales are facing poor health or disability after treatment for cancer At least 22,000 are having sexual difficulties At least 15,000 are living with mental health problems, which can include moderate to severe anxiety Around 13,000 are living with moderate to severe pain after curative treatment Rates based on those in Macmillan Cancer Support (2013) Throwing light on the consequences of cancer and its treatment applied to the estimated cancer prevalence in Wales in 2015. These rates are generally UK rates or English rates rather than Welsh specific.

17. Cancer increasingly co-exists with other conditions Macmillan Cancer Support. Cancer in the context of other long-term conditions. Scoping evidence review and secondary data analysis. 2015.

18. 3 in 4 people living with cancer are in the survivorship stage1 Surviving cancer does not necessarily mean living well 1 in 4 of them deal with consequences of their treatment2 1 in 5 of cancer survivors may have unmet needs3 • Maher J and McConnell H. New pathways of care for cancer survivors: adding the numbers. Br J Cancer. 2011. 105: S5-S10 • Macmillan Cancer Support. Throwing light on the consequences of cancer and its treatment. 2013. London • Armes J et al. Patients’ supportive care needs beyond the end of treatment: A prospective, longitudinal survey. Journal of Clinical Oncology.2009. 27:36 6172-6179

19. Making big data relevant.

20. Working with the Welsh Cancer Intelligence and Surveillance Unit to provide data that matters to patients

21. People living with cancer in Wales • 19,088 people were diagnosed with cancer in Wales in 2015 • There are now an estimated 130,000people living with cancer in Wales Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 2012; 107: 1195-1202.  (Projections scenario 1), and Macmillan analysis based on extrapolation of 2010 and 2020 projections and distribution across the nations taken from Maddams J., Thames Cancer Registry, personal communication. See also Maddams J, et al. Cancer prevalence in the United Kingdom: estimates for 2008. British Journal of Cancer. 2009. 101: 541-547.

22. Numbers are increasing Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 2012; 107: 1195-1202.  (Projections scenario 1), and Macmillan analysis based on extrapolation of 2010 and 2020 projections and distribution across the nations taken from Maddams J., Thames Cancer Registry, personal communication. See also Maddams J, et al. Cancer prevalence in the United Kingdom: estimates for 2008. British Journal of Cancer. 2009. 101: 541-547.

23. Different cancers have different ‘shapes’ K. Yip, H. McConnell, R. Alonzi, J. Maher. Using routinely collected data to stratify prostate cancer patients into phases of care in the UK: implications for resource allocation and cancer survivorship. Br J Cancer 2015.

24. Longer term survival • Intermediate • Shorter term survival

25. Pathways are different Group 1: Many live for more than a decade Group 2: Most similar to a long term condition Group 3: Survival for the majority is short term McConnell H, White R, Maher J. Understanding variations: Outcomes for people diagnosed with cancer and implications for service provision. 2014.  European Network of Cancer Registries Scientific Meeting and General Assembly

26. Focus for intervention will differ for people in each group Group 1: Reduce overtreatment, focus on recovery & late effects Group 2: Balance acute intervention and chronic illness management Group 3: Diagnose earlier; manage comorbidity early; palliative care for most McConnell H, White R, Maher J. Understanding variations: Outcomes for people diagnosed with cancer and implications for service provision. 2014.  European Network of Cancer Registries Scientific Meeting and General Assembly

27. Three cancer groups in numbers

29. Treatable not curable into end of life in numbers

30. Keeping focussed on what matters

31. We need to know more about treatment in a real-world context

32. Only by understanding treatment in a real-world context can we produce realistic models of resource use

33. Measure what matters to people Adverse symptom events over time reported by patients vs clinicians Basch E. N Engl J Med 2010;362:865-869.

34. Quality of life data: too often missing 11 of17commonly used drugs have no data on quality of life outcomes Where QoL data is collected, the effect size is significantly smaller Leucht et al. How effective are common medications: a perspective based on meta-analyses of major drugs. BMC Medicine (2015) 13:253. DOI 10.1186/s12916-015-0494-1

36. Good supportive care improves survival

37. Centre for Patient Reported Outcomes Research Phase I - Determine the rate of PRO reporting in UK cancer trials – Assessthe current situation. Phase 2 - Determine barriers/enablers to optimal PRO protocol content, implementation and reporting – Evaluate and analyse the reasons behind the current situation. Phase 3 - Develop an online, free to use PRO training resource – Improve the current situation.

38. Stimulating better conversations with professionals Macmillan Cancer Support. Electronic Holistic Needs Assessment data as of 20/04/2015.

39. Who better to tell us about the quality of cancer care than cancer patients? Welsh CPES results 2016

40. We are learning what works. One of the key factors in having a good experience is having access to a Clinical Nurse Specialist

41. Working together to achieve more.

42. Improving awareness of the English cancer registry amongst patients, health professionals and the public Review of Informed Choice for Cancer Registration September 2016

43. WE ENGAGED Widely to understand the situation and test ideas for improving awareness • 1,400people affected by cancer • 340 health professionals • 1,000 members of the public • 20 cancer charities