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

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…

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)

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

NCPES: 2012Research 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

NCPES: 2013 & 2014Research 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?

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%

Summarised by cancer types

Was taking part in research discussed with you?

Cancer type 2012 2013 2014

Brain 34% 38% 37%

Breast 39% 37% 35%

Colorectal 36% 32% 29%

Gynaecological 28% 28% 29%

Head & Neck 34% 29% 34%

Haematology 33% 36% 37%

Lung 35% 31% 30%

Prostate 35% 34% 34%

Sarcoma 33% 34% 35%

Skin 27% 18% 17%

Upper GI 38% 35% 34%

Urological 15% 16% 14%

Other cancers 36% 33% 35%

Total 33% 32% 31%

Summarised by cancer types

Was taking part in research discussed with you?

Cancer type 2012 2013 2014

Brain 34% 38% 37%

Breast 39% 37% 35%

Colorectal 36% 32% 29%

Gynaecological 28% 28% 29%

Head & Neck 34% 29% 34%

Haematology 33% 36% 37%

Lung 35% 31% 30%

Prostate 35% 34% 34%

Sarcoma 33% 34% 35%

Skin 27% 18% 17%

Upper GI 38% 35% 34%

Urological 15% 16% 14%

Other cancers 36% 33% 35%

Total 33% 32% 31%

Summarised by cancer types

Was taking part in research discussed with you?

Cancer type 2012 2013 …if so, did you take part?

2014 …if so, did you take part?

Brain 34% 38% 70% 37% 75%

Breast 39% 37% 58% 35% 59%

Colorectal 36% 32% 65% 29% 61%

Gynaecological 28% 28% 63% 29% 64%

Head & Neck 34% 29% 67% 34% 69%

Haematology 33% 36% 73% 37% 71%

Lung 35% 31% 62% 30% 58%

Prostate 35% 34% 62% 34% 58%

Sarcoma 33% 34% 72% 35% 64%

Skin 27% 18% 60% 17% 59%

Upper GI 38% 35% 61% 34% 63%

Urological 15% 16% 56% 14% 58%

Other cancers 36% 33% 58% 35% 63%

Total 33% 32% 64% 31% 63%

Summarised by cancer types

Did you see information about cancer research?

Cancer type 2013 2014

Brain 87% 85%

Breast 87% 88%

Colorectal 85% 86%

Gynaecological 85% 86%

Head & Neck 86% 88%

Haematology 86% 88%

Lung 88% 88%

Prostate 85% 85%

Sarcoma 86% 86%

Skin 80% 80%

Upper GI 86% 88%

Urological 78% 78%

Other cancers 85% 88%

Total 85% 86%

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?

Variation Between Trusts2014

Overall findings for all Trusts: Q.29: 86% Q.30: 31% Q.31: 63%

Variation Between Cancers

Variation Between Cancers2014

Variation Between Cancers

Breast Patients:2012

Questions Breast patients All patients Range

Had Discussion?

39% 33% 15%-39%

Glad?No significant

differences between cancers

95%

Would like to have been

asked?56% 53% 47%-64%

Breast Patients: 2013 & 2014

Questions Breast 2013

All2013

Breast 2014 All 2014

Saw? 87% 85% 88% 86%

Had Discussion? 37% 32% 35% 31%

Went on to take part?

58% 64% 59% 63%

Colorectal & Lower GI Patients:2012

Questions 2012 Colorectal

patientsAll

patientsRange

Had Discussion? 36% 33% 15%-39%

Glad?No significant

differences between cancers

95%

Would like to have been asked?

51% 53% 47%-64%

Colorectal & Lower GI Patients: 2013 & 2014

Questions Colorectal2013

All 2013

Colorectal2014

All 2014

Saw? 85% 85% 86% 86%

Had Discussion? 32% 32% 29% 31%

Went on to take part ?

65% 64% 61% 63%

Lung Patients: 2012

Questions Lung patientsAll

PatientsRange

Had Discussion? 35% 33% 15%-39%

Glad?No significant

differences between cancers

95%

Would like to have been

asked?53% 53% 47%-64%

Lung Patients:2013 & 2014

QuestionsLung2013

All 2013

Lung2014

All 2014

Saw? 88% 85% 88% 86%

Had Discussion?

31% 32% 30% 31%

Went on to take part ?

62% 64% 58% 63%

Prostate Patients:2012

Questions Prostatepatients

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%

Prostate Patients:2013 & 2014

QuestionsProstate

2013 All

2013 Prostate

2014All

2014

Saw? 85% 85% 85% 86%

Had Discussion? 34% 32% 34% 31%

Went on to take part ?

62% 64% 58% 63%

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%

Brain & CNS Patients: 2013 & 2014

QuestionsBrain & CNS

2013 All

2013 Brain & CNS

2014All

2014

Saw? 87% 85% 85%86%

Had Discussion? 38% 32% 37% 31%

Went on to take part ? 70% 64% 75% 63%

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%

Gynaecological Patients: 2013 & 2014

QuestionsGynae 2013

All 2013

Gynae2014

All 2014

Saw? 85% 85% 86% 86%

Had Discussion? 28% 32% 29% 31%

Went on to take part ?

63% 64% 64% 63%

Haematological Patients:

2012

Questions Haem.

patients All

patients Range

Had Discussion? 33% 33% 15%-39%

Glad?No significant

differences between cancers

95%

Would like to have been

asked?53% 53% 47%-64%

Haematology Patients: 2013 & 2014

Questions Haem.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%

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%

Head & Neck Patients:

2013 & 2014Questions Head & Neck

2013 All

2013 Head & Neck

2014All

2014

Saw? 86% 85% 88% 86%

Had Discussion? 29% 32% 34% 31%

Went on to take part ?

67% 64% 69% 63%

Sarcoma Patients:2012

Questions Sarcomapatients

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%

Sarcoma Patients: 2013 & 2014

Questions Sarcoma2013

All 2013

Sarcoma2014

All 2014

Saw? 86% 85% 86% 86%

Had Discussion? 34% 32% 35% 31%

Went on to take part ?

72% 64% 64% 63%

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%

Skin Patients:2013 & 2014

QuestionsSkin

2013 All

2013 Skin2014

All 2014

Saw? 80% 85% 80% 86%

Had Discussion?

18% 32% 17% 31%

Went on to take part ?

60% 64% 59% 63%

Upper GI Patients: 2012

Questions Upper GIpatients

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%

Upper GI Patients:2013 & 2014

QuestionsUpper GI

2013 All

2013 Upper GI

2014All

2014

Saw? 86% 85% 88% 86%

Had Discussion?

35% 32% 34% 31%

Went on to take part ?

61% 64% 63% 63%

Urology Patients:2012

Questions Urologypatients

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%

Urology Patients: 2013 & 2014

QuestionsUrology2013

All 2013

Urology2014

All 2014

Saw? 78% 85% 78% 86%

Had Discussion? 16% 32% 14% 31%

Went on to take part ? 58% 64% 56% 63%

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%

Other Cancers:2013 & 2014

Questions 2013 & 2014

Other 2013

All 2013

Other 2014

All 2014

Saw? 85% 85% 87% 86%

Had Discussion? 33% 32% 35% 31%

Went on to take part ?

68% 64% 63% 63%

Variation by LCRN Geography

Variation by LCRN Geography

Variation by LCRN Geography

Variation by LCRN Geography

Variation by LCRN Geography

Regional variation in enrolment

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0.0

10.0

20.0

30.0

40.0

50.0

60.0

2012-13

2013-14

Recruitment of cancer patients to research studies as a % of cancer incidence.

Data shown for the 2 years before the start of LCRNs (April 2014), configured to the LCRN boundaries

Link between NCPES data and NIHR CRN Cancer recruitment

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15 20 25 30 35 40 45 500

5

10

15

20

25

30

35

40

45

% patients reporting “taking part in research discussed” in NCPES 2014

patients enrolled in NIHR Cancer

studies as % incidence,

2013-14

each represents data for Trusts in one LCRN geography

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

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

Our action plan for 2015…….

Improving NCPES results

• 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: carolynxmorris@gmail.com

NCPES: Acknowledgements & Thanks

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Send your feedback to: carolynxmorris@gmail.com

Thank you…….