1. Delivering clinical research to make patients, and the NHS, better Cancer Patients’ Experiences of Research Findings from the National Cancer Patient Experience Survey 2012–2014 dd/mm/yyyy (Your name here) NCRI (name of) Clinical Studies Group Member, Consumer Liaison Group

2. National Cancer Patient Experience Survey (NCPES) WHAT IS NCPES (aka. CPES)? Annual postal survey 70 detailed questions about experience of care WHO TAKES PART? All adult patients (16+) treated Sept-Nov All 153 Trusts in England (not UK-wide) Data on 70,141 patients in 2014 = 64% response rate ANALYSES By Cancer type, by Trust, by CCG* & by Network Detailed demographics: Age, Deprivation, Sexuality, Ethnicity…

3. Why the Consumer Liaison Group is involved: Can look at national trends and drill down into local practice Analyses by Cancer type, by Trust and by patient demographics: age, deprivation, sexuality, ethnicity... Results are used to bring about change Data are available to anyone: www.quality-health.co.uk/surveys/national-cancer-patient-experience-survey The questions about research awareness are OUR questions; introduced into NCPES 2012, following representations from the CLG, including the topics to be covered by the questions (amended in 2013)

4. Responses Show: It’s OK To Ask! 1/3 of cancer patients are having discussions about research 2/3 of those asked go on to take part in research 95% of those asked are glad to be asked  53% of those not asked would be glad to be asked Taking part in research is associated with better experience of care  Significant and persistent variations:- by cancer, by age, by network and by Trust

5. NCPES: 2012 Research Awareness Questions In 2012 we added our first 3 questions: Since your diagnosis, has anyone discussed with you whether you would like to take part in cancer research?Yes 33% If yes, were you glad to have been asked?Yes 95% If no, would you like to have been asked?Yes 53% On discussion question, Trusts ranged between 14% and 62% of their patients saying they’d had a discussion Cancer types ranged 15% - 39% having a discussion

6. NCPES: 2013 & 2014 Research Awareness Questions Have you seen information (such as leaflets, posters, information screens, etc.) about cancer research in your hospital? Since your diagnosis has anyone discussed with you whether you would like to take part in cancer research? If so did you then go on to take part in research?

7. NCPES Findings 2014 2013 Seen information? Yes 86% 85% Had a discussion? Yes 31% 32% Go on to take part in research? Yes 63% 64%

8. National Cancer Patient Experience Survey Results 201220132014 CSGs Q1- Had a discussion about taking part? Q2 - Glad to have been asked? Q3 - Would like to have been asked? Q1 - Did you see the information? Q2 - Taking part in cancer research discussed? Q3 - Did you take part in the research? Q1 - Did you see the information? Q2 - Taking part in cancer research discussed? Q3 - Did you take part in the research? Total33%95%53%85%32%64%86%31%63% Bladder15% n o significant difference between cancer types 47%78%16%56%78%14%58% Brain34%64%87%38%64%85%37%75% Breast39%56%87%37%58%88%35%59% Colorectal36%51%85%32%65%86%29%61% Gynaecology28%51%85%38%63%86%29%64% Head and Neck34%54%86%29%67%88%34%69% Haematology33%53%86%36%73%88%37%71% Lung35%53%88%31%56%88%30%58% Prostate35%54%85%34%62%85%34%58% Sarcoma33%59%86%34%72%86%35%64% Skin27%47%80%18%60%80%17%59% Upper GI38%54%86%35%61%88%34%63% Other cancers36%57%85%33%68%88%35%63% Summarised by cancer types

9. Involvement in Research = Better Patient Experience 2013 Did not have a discussion Had discussion but did not go on to participate Had discussion and did go on to participate Rating of care as excellent or very good Rating of care as less than excellent or very good 87.2% 12.8%  90.2% 9.8%  91.9% 8.1% Ref: Keeping the Customer Satisfied - It’s OK to Ask: Is Taking Part in Research Associated with Better Experience of Care? Findings from 2013 NCPES: Morris et al, 2014

10. The Impact of Age Nearly a quarter of respondents are over 75 BUT less likely to be engaged by information about research Significantly less likely to have had a discussion and less likely to take part BUT, when asked to take part, participation of over 75s is over 50% Is this about the co-morbidities of the patient or the assumptions of the research community?

11. Variation Between Trusts 2014 Overall findings for all Trusts: Q.29: 86% Q.30: 31% Q.31: 63%

12. Variation Between Cancers

13. Variation Between Cancers 2014

14. Variation Between Cancers

15. Breast Patients:2012 QuestionsBreast patientsAll patientsRange Had Discussion? 39%33%15%-39% Glad? No significant differences between cancers 95% Would like to have been asked? 56%53%47%-64%

16. Breast Patients: 2013 & 2014 QuestionsBreast 2013 All 2013 Breast 2014All 2014 Saw?87%85%88%86% Had Discussion?37%32%35%31% Went on to take part? 58%64%59%63%

17. Colorectal & Lower GI Patients:2012 Questions 2012 Colorectal patients All patients Range Had Discussion?36%33%15%-39% Glad? No significant differences between cancers 95% Would like to have been asked? 51%53%47%-64%

18. Colorectal & Lower GI Patients: 2013 & 2014 QuestionsColorectal 2013 All 2013 Colorectal 2014 All 2014 Saw?85% 86% Had Discussion? 32% 29%31% Went on to take part ? 65%64%61%63%

19. Lung Patients: 2012 QuestionsLung patients All Patients Range Had Discussion?35%33%15%-39% Glad? No significant differences between cancers 95% Would like to have been asked? 53% 47%-64%

20. Lung Patients:2013 & 2014 Questions Lung 2013 All 2013 Lung 2014 All 2014 Saw?88%85%88%86% Had Discussion? 31%32%30%31% Went on to take part ? 62%64%58%63%

21. Prostate Patients:2012 Questions Prostate patients All patients Range Had Discussion?35%33%15%-39% Glad? No significant differences between cancers 95% Would like to have been asked? 84%53%47%-64%

22. Prostate Patients:2013 & 2014 Questions Prostate 2013 All 2013 Prostate 2014 All 2014 Saw?85% 86% Had Discussion? 34%32%34%31% Went on to take part ? 62%64%58%63%

23. Brain & CNS Patients:2012 Questions Brain & CNS patients All patients Range Had Discussion?34%33%15%-39% Glad? No significant differences between cancers 95% Would like to have been asked? 64%53%47%-64%

24. Brain & CNS Patients: 2013 & 2014 Questions Brain & CNS 2013 All 2013 Brain & CNS 2014 All 2014 Saw? 87%85% 86% Had Discussion? 38%32%37%31% Went on to take part ? 70%64%75%63%

25. Gynaecological Patients:2012 Questions Gynae patients All patients Range Had Discussion?28%33%15%-39% Glad? No significant differences between cancers 95% Would like to have been asked? 51%53%47%-64%

26. Gynaecological Patients: 2013 & 2014 Questions Gynae 2013 All 2013 Gynae 2014 All 2014 Saw?85% 86% Had Discussion? 28%32%29%31% Went on to take part ? 63%64% 63%

27. Haematological Patients: 2012 Questions Haem. patients All patients Range Had Discussion?33% 15%-39% Glad? No significant differences between cancers 95% Would like to have been asked? 53% 47%-64%

28. Haematology Patients: 2013 & 2014 QuestionsHaem. 2013 All 2013 Haem. 2014 All 2014 Saw?86%85%88%86% Had Discussion? 36%32%37%31% Went on to take part ? 73%64%71%63%

29. Head & Neck Patients: 2012 Questions Head & Neck patients All patients Range Had Discussion?24%33%15%-39% Glad? No significant differences between cancers 95% Would like to have been asked? 54%53%47%-64%

30. Head & Neck Patients: 2013 & 2014 QuestionsHead & Neck 2013 All 2013 Head & Neck 2014 All 2014 Saw?86%85%88%86% Had Discussion? 29%32%34%31% Went on to take part ? 67%64%69%63%

31. Sarcoma Patients:2012 Questions Sarcoma patients All patients Range Had Discussion?24%33%15%-39% Glad? No significant differences between cancers 95% Would like to have been asked? 59%53%47%-64%

32. Sarcoma Patients: 2013 & 2014 QuestionsSarcoma 2013 All 2013 Sarcoma 2014 All 2014 Saw?86%85%86% Had Discussion? 34%32%35%31% Went on to take part ? 72%64% 63%

33. Skin Patients:2012 Questions Skin patients All patients Range Had Discussion?27%33%15%-39% Glad? No significant differences between cancers 95% Would like to have been asked? 47%53%47%-64%

34. Skin Patients:2013 & 2014 Questions Skin 2013 All 2013 Skin 2014 All 2014 Saw?80%85%80%86% Had Discussion? 18%32%17%31% Went on to take part ? 60%64%59%63%

35. Upper GI Patients: 2012 Questions Upper GI patients All patients Range Had Discussion?30%33%15%-39% Glad? No significant differences between cancers 95% Would like to have been asked? 54%53%47%-64%

36. Upper GI Patients: 2013 & 2014 Questions Upper GI 2013 All 2013 Upper GI 2014 All 2014 Saw?86%85%88%86% Had Discussion? 35%32%34%31% Went on to take part ? 61%64%63%

37. Urology Patients:2012 Questions Urology patients All patients Range Had Discussion?15%33%15%-39% Glad? No significant differences between cancers 95% Would like to have been asked? 47%53%47%-64%

38. Urology Patients: 2013 & 2014 Questions Urology 2013 All 2013 Urology 2014 All 2014 Saw?78%85%78%86% Had Discussion? 16%32%14%31% Went on to take part ? 58%64%56%63%

39. Other Cancers:2012 Questions 2012 Other patients All patients Range Had Discussion?36%33%15%-39% Glad? No significant differences between cancers 95% Would like to have been asked? 57%53%47%-64%

40. Other Cancers: 2013 & 2014 Questions 2013 & 2014 Other 2013 All 2013 Other 2014 All 2014 Saw?85% 87%86% Had Discussion?33%32%35%31% Went on to take part ? 68%64%63%

41. Variation by LCRN

47. Changing the culture How can we: improve awareness of research? improve access to opportunities to take part in research? ensure patients have conversations about taking part as a routine part of treatment choices? Improving NCPES results

48. Our action plan for 2015……. Improving NCPES results

49. Quality Health, Dr Reg Race SPADE (consumer-led Strategic PPI Advice, Delivery and Evaluation panel supported by NIHR CRN: Cancer) Communications and PPI Team at NIHR CRN Coordinating Centre NIHR CRN Cancer: NCPES Working Group (Consumers, Researchers, NCIN and NIHR CRN Cancer) Special thanks to Professor Robert West for analyses Working group chaired by Carolyn Morris: carolynmorris@gmail.com NCPES: Acknowledgements & Thanks

50. 50 Why not add a photo to your presentation?

51. 51 Why not add a photo to your presentation?

52. … let us know where you use the presentation... and what impact it had Send your feedback to: carolynxmorris@gmail.comcarolynxmorris@gmail.com Thank you…….