delivering clinical research to make patients, and the nhs, better cancer patients’ experience of...
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![Page 1: Delivering clinical research to make patients, and the NHS, better Cancer Patients’ Experience of Research Findings and Opportunities From NCPES (National](https://reader037.vdocuments.site/reader037/viewer/2022110304/551b3456550346d41a8b5041/html5/thumbnails/1.jpg)
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)
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The report gives analyses by:
• Type of cancer
• Patient Demographics
• Individual Trust
• Region
It is openly accessible and available online at:
http://www.quality-health.co.uk/surveys/national-cancer-patient-experience-survey
Analyses In National Report
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Tumour Group Number of Respondents Percentage
Breast 13916 20.2%Colorectal / Lower Gastroinstestinal
8899 12.9%
Lung 5018 7.3%Prostate 5585 8.1%‘Big 4’ Combined 33418 49%Brain / Central nervous system
730 1.1%
Gynaecological 3896 5.7%Haematological 11602 16.9%Head and neck 2437 3.5%Sarcoma 720 1.0%Skin 1854 2.7%Upper Gastroinstestinal 4283 6.2%Urological (excluding Prostate)
7058 10.3%
Other Cancers 2739 4.0%
Respondents by Cancer Type
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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 Research2012
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• 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 Research2013
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• By Type of Cancer
• By Trust
• By Local Clinical Research Network (LCRN)
• By Patient Demographics
Variations in Responses to Research Questions
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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
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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
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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
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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%
2013Saw 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
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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%
2013Saw 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
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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%
2013Saw 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
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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%
2013Saw 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
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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%
2013Saw 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
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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%
2013Saw 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
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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%
2013Saw 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
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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%
2013Saw 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
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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%
2013Saw 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
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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%
2013Saw 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
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Had A Discussion About Research?
2012 All 33% Trusts range 14% - 62%
2013 All 32% range 11% - 62%
2012 - Glad to have been asked?
All 95% range 85% - 100%
2012 - Would like to have been asked?
All 53% range 47% - 64%
2013 - Saw Information?
All 85% range 71% - 95%
2013 - Went on to take part?
All 64% range 37% - 94%
Variations by Trust
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Variations by Local Clinical Research Network (LCRN)Saw information on research
21
% r
espo
nse
per
LC
RN
0102030405060708090
100
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Variations by LCRN Had a discussion
22
% r
espo
nse
per
LC
RN
05
101520253035404550
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Variations by LCRNWent on to take part
23
% r
espo
nse
per
LC
RN
52545658606264666870
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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?
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• 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
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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
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Why not add a photo to your presentation?
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Why not add a photo to your presentation?
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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 [email protected]
NCPES: Acknowledgements & Thanks