Delivering clinical research to make patients, and the NHS, better Cancer Patients’ Experience of Research Findings and Opportunities From NCPES (National Cancer Patient Experience Survey)

The report gives analyses by: Type of cancer Patient Demographics Individual Trust Region It is openly accessible and available online at: experience-survey Analyses In National Report

Tumour GroupNumber of RespondentsPercentage Breast % Colorectal / Lower Gastroinstestinal % Lung % Prostate % ‘Big 4’ Combined % Brain / Central nervous system % Gynaecological % Haematological % Head and neck % Sarcoma7201.0% Skin % Upper Gastroinstestinal % Urological (excluding Prostate) % Other Cancers % Respondents by Cancer Type

These questions were introduced in 2012 following consumer pressure. In 2012 the results were as follows: 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% 3 Questions about Research 2012

Have you seen information (such as leaflets, posters, information screens, etc.) about cancer research in your hospital? Yes 84% Since your diagnosis, has anyone discussed with you whether you would like to take part in research? Yes 32% If so, did you then go on to take part in research? Yes 64% 3 Questions about Research 2013

By Type of Cancer By Trust By Local Clinical Research Network (LCRN) By Patient Demographics Variations in Responses to Research Questions

2012 Discussion about taking part in research? Breast 39%All 33%Range 15%-39% Glad to have been asked? All 95%no significant difference between cancer types Would like to have been asked? Breast 56%All 53%Range 47% - 64% 2013 Saw Information? Breast 87%All 85%Range 78% - 88% Discussion? Breast 37%All 32%Range 16% - 38% Went on To Take Part? Breast 58% All 64%Range 26% - 73% Breast Patients

2012 Discussion about taking part in research? Colorectal 36%All 33%Range 15%-39% Glad to have been asked? All 95%no significant difference between cancer types Would like to have been asked? Colorectal 51%All 53%Range 47%-64% 2013 Saw Information? Colorectal 85%All 85%Range 78%-88% Discussion? Colorectal 32%All 32%Range 16%-38% Went on To Take Part? Colorectal 65% All 64%Range 26%-73% Colorectal/ Lower Gastro-intestinal Patients

2012 Discussion about taking part in research? Lung 35%All 33%Range 15%-39% Glad to have been asked? All 95%no significant difference between cancer types Would like to have been asked? Lung 53%All 53%Range 47%-64% 2013 Saw Information? Lung 88%All 85%Range 78%-88% Discussion? Lung 31%All 32%Range 16%-38% Went on To Take Part? Lung 56%All 64%Range 26%-73% Lung Patients

2012 Discussion about taking part in research? Prostate 35%All 33%Range 15%-39% Glad to have been asked? All 95%no significant difference between cancer types Would like to have been asked? Prostate 54%All 53%Range 47%-64% 2013 Saw Information? Prostate 85%All 85%Range 78%-88% Discussion? Prostate 34%All 32%Range 16%-38% Went on To Take Part? Prostate 62%All 64%Range 26%-73% Prostate Patients

2012 Discussion about taking part in research? Brain 34%All 33%Range 15%-39% Glad to have been asked? All 95%no significant difference between cancer types Would like to have been asked? Brain 64%All 53%Range 47%-64% 2013 Saw Information? Brain 87%All 85%Range 78%-88% Discussion? Brain 38%All 32%Range 16%-38% Went on To Take Part? Brain 64% All 64%Range 26%-73% Brain/ CNS Patients

2012 Discussion about taking part in research? Gynaecology 28% All 33% Range 15%-39% Glad to have been asked? All 95% no significant difference between cancer types Would like to have been asked? Gynaecology 51% All 53% Range 47%-64% 2013 Saw Information? Gynaecology 85% All 85% Range 78%-88% Discussion? Gynaecology 38% All 32% Range 16%-38% Went on To Take Part? Gynaecology 63% All 64% Range 26%-73% Gynaecology Patients

2012 Discussion about taking part in research? Haematology 33% All 33% Range 15%-39% Glad to have been asked? All 95% no significant difference between cancer types Would like to have been asked? Haematology 53% All 53% Range 47%-64% 2013 Saw Information? Haematology 86% All 85% Range 78%-88% Discussion? Haematology 36% All 32% Range 16%-38% Went on To Take Part? Haematology 73% All 64% Range 26%-73% Haematology Patients

2012 Discussion about taking part in research? Head/Neck 34%All 33%Range 15%-39% Glad to have been asked? All 95%no significant difference between cancer types Would like to have been asked? Head/Neck 54%All 53%Range 47%-64% 2013 Saw Information? Head/Neck 86%All 85%Range 78%-88% Discussion? Head/Neck 29%All 32%Range 16%-38% Went on To Take Part? Head/Neck 67%All 64%Range 26%-73% Head and Neck Patients

2012 Discussion about taking part in research? Sarcoma 33%All 33%Range 15%-39% Glad to have been asked? All 95%no significant difference between cancer types Would like to have been asked? Sarcoma 59%All 53%Range 47%-64% 2013 Saw Information? Sarcoma 86%All 85%Range 78%-88% Discussion? Sarcoma 34%All 32%Range 16%-38% Went on To Take Part? Sarcoma 72%All 64%Range 26%-73% Sarcoma Patients

2012 Discussion about taking part in research? Skin 27%All 33%Range 15%-39% Glad to have been asked? All 95%no significant difference between cancer types Would like to have been asked? Skin 47%All 53%Range 47%-64% 2013 Saw Information? Skin 80%All 85%Range 78%-88% Discussion? Skin 18%All 32%Range 16%-38% Went on To Take Part? Skin 60%All 64%Range 26%-73% Skin Patients

2012 Discussion about taking part in research? Upper GI 38%All 33%Range 15%-39% Glad to have been asked? All 95%no significant difference between cancer types Would like to have been asked? Upper GI 54%All 53%Range 47%-64% 2013 Saw Information? Upper GI 86%All 85%Range 78%-88% Discussion? Upper GI 35%All 32%Range 16%-38% Went on To Take Part? Upper GI 61%All 64%Range 26%-73% Upper Gastro-intestinal Patients

2012 Discussion about taking part in research? Urological 15%All 33%Range 15%-39% Glad to have been asked? All 95%no significant difference between cancer types Would like to have been asked? Urological 47%All 53%Range 47%-64% 2013 Saw Information? Urological 78%All 85%Range 78%-88% Discussion? Urological 16%All 32%Range 16%-38% Went on To Take Part? Urological 56%All 64%Range 26%-73% Urology Patients

2012 Discussion about taking part in research? Other 36%All 33%Range 15%-39% Glad to have been asked? All 95%No significant difference between cancer types Would like to have been asked? Other 57%All 53%Range 47%-64% 2013 Saw Information? Other 85%All 85%Range 78%-88% Discussion? Other 33%All 32%Range 16%-38% Went on To Take Part? Other 68%All 64%Range 26%-73% Other Cancer Patients

Had A Discussion About Research? 2012All 33%Trusts range 14% - 62% 2013All 32% range 11% - 62% Glad to have been asked? All 95% range 85% - 100% Would like to have been asked? All 53% range 47% - 64% Saw Information? All 85% range 71% - 95% Went on to take part? All 64% range 37% - 94% Variations by Trust

Variations by Local Clinical Research Network (LCRN) Saw information on research 21 % response per LCRN

Variations by LCRN Had a discussion 22 % response per LCRN

Variations by LCRN Went on to take part 23 % response per LCRN

The Impact of Age Nearly a quarter of respondents are over 75 BUT less likely to be engaged by info about research Significantly less likely to have had a discussion and less likely to participate BUT, when asked to participate, participation of over-75s is comparable to other groups Is this about co-morbidities or assumptions?

What more can be done to facilitate high quality studies in those tumour groups where opportunities to take part in trials are more limited, if there are treatment/outcome questions for those groups? Reflecting on the portfolio balance of this CSG, is there scope for a trial in older patients with this type of cancer (or the most common type of treatment for it)? What further analyses would this group like to see from the NCPES data? (Who might do it or fund it?) Some Questions

Patients are asked to rate their care overall. Of those who did not have a discussion about research: 87.2% Rated Their Care Excellent or Very Good Of those who did have a discussion and did not go on to participate: 90.2% Rated Their Care Excellent or Very Good Of those who did have a discussion and did go on to participate: 91.9% Rated Their Care Excellent or Very Good This is highly statistically significant. Research Participation and Quality of Care

27 Why not add a photo to your presentation?

28 Why not add a photo to your presentation?

Quality Health, Dr Reg Race SPADE (consumer-led Strategic PPI Advice, Delivery and Evaluation panel) Communications 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 NCPES: Acknowledgements & Thanks