Involving People: Patients, Participants & Consumers in U.K.Cancer Research, presented by Richard Stephens at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK

1. Involving People:
Patients, Participants & Consumers
In U.K. Cancer Research
Richard Stephens
Chair, NCRI Consumer Liaison Group
Eupati Leeds 6 Mar 2014 ppi@ncrn.org.uk

2. This Presentation Will Offer:
• An example of a consumer initiative to work directly with
researchers to explore general themes and issues, as well
as to work on particular studies
• An example of a consumer initiative to work directly with
Pharma, supporting an existing academic-Pharma alliance
• Some examples of how the UK’s cancer research ethos
and structures support and encourage consumer
involvement
• Some thoughts about UK cancer consumer involvement
and Eupati

3. CLG Meeting NCRI Conference
– The Dragon’s Den

4. Dragon’s Den 2012
Proposals, presenters and sponsors
1. Experiences of older people with cancer
Steve Sizmur: Picker Institute, Age UK & Pfizer
2. Using social media & interactive websites to help patients
comply with treatment requirements Rebecca Peagram: AZ
3. Patients’ perceptions on obtaining tumour biopsies
Shethah Morgan: AZ
4. Taking part in a clinical study when first diagnosed
Keith Murray & Anna Robinson: AZ
5. Best methods of managing missing data & disseminating of
results in palliative care trials
Lesley Turner, CLG/CSG, pp Dr Jamilla Hussain: Hull/York MS

5. Working with Astra Zeneca –
Preparation and Set-up of Patient Panel
• Visit To Alderley Edge, AZ HQ
– Examples of consumer involvement helping research
– Two open presentations to staff with Q&A
– Focus Group with Research Managers
– Drop-in lunchtime session “meet a patient rep”
• Dragon’s Den (3 out of 5 proposals)
• Two jointly-written articles in AZ and NCRN newsletters
• 10 Volunteers - evening dinner and work session + full day’s training
• Legal agreements re funding, confidentiality etc
8 experienced & trained consumers start work Feb 2014
• CLG Chair invited to Molndal to speak with Global medical Teams

6. Dragon’s Den
Feedback from AZ Researchers

7. Working Together – NCRI Partners

8. NCRI - Relationships and Initiatives
National Awareness and
Early Diagnosis Initiative
National
Infrastructure
NCRI
Secretariat
Cancer
Patients, carers
NCRN
Coordinating
Centre
NCRI
Members
National
Networks
Research
Initiatives
Surgical
Cancer
Research
CLG
National Prevention
Research Initiative
Survivorship after
Cancer & End of Life
Care

9. Major Consumer Activities 2013
Clinical Trials (and other NHS research)
– CSG Rep Toolkit, March (designed by consumers)
– International Clinical Trials Day – Mon 20th
May; It’s OK To Ask
– NIHR Toolkits from “Mystery Shopper” and NCPES
– Tissue donation/biobanking workshop NCRI Conference
– Action On Access; potential with registries? Cohort designs?
– Patient Panel with AstraZeneca
– Dragon’s Den 2 – bigger and better
NCPES (National Cancer Patient Experience Survey)
– Academic paper from 2012 and 2013 results
– Further analysis of 2013 responses – geography, age, deprivation
– Breaking news – research participation & patient satisfaction

10. NCPES 2013 (survey Apr 2013; results Aug)
n = 67,000 patients from 127,000 diagnosed Sept 2012-Feb 2013;
Q29: Have you seen information about cancer research in your hospital?
(poster/screen/leaflet ) YES - 85% (vs NIHR Mystery Shopper 2012 – 9%)
Q30: Since your diagnosis, has anyone asked you if you would like to take part
in cancer research? YES - 32% NO - 68% (2012 - 33% vs 67%)
Variations by Trust, lowest vs highest: 11% vs 62%
Q31: If yes, did you then go on to take part in cancer research? YES – 64%
Variations by Trust, lowest vs highest: 37% vs 94%
Variations as expected by tumour type, but unexpected by age; even allowing
for fewer trials, Over 65s are less likely to be asked yet still likely to say yes.

11. Action On Access
Consumer-led Report (2012)
• Practical advice for all
• Patient and carer led
• Industry facilitated and supported
• Looking very much to the future.
Available at www.ncrn.org.uk

12. The Consumer Liaison Group
0113 343 2254 ppi@ncrn.org.uk
Patients as Partners in ResearchPatients as Partners in Research