1. The North Trent Cancer Research Network Consumer Research Panel
A Consumer Perspective on Cancer Research
David Ardron
Involve
Wednesday 6th September 2006.

2. A Brief Introduction … Founded 2001
Funded by North Trent Cancer Research Network c.£11,000 p.a.
30 members: carers, current and former patients
Role: to provide a consumer perspective at all stages of the research process
Part time paid facilitator and secretary

3. Curriculum Vitae - North Trent CRN Consumer Research Panel
Thirty plus business members, all patients or carers with experience of most of the major tumour groups.
Experience of working on cancer research projects both quantitative studies and randomised controlled trials.
Many have represented and spoken at local, national, and some international conferences and meetings.

5. Curriculum Vitae - David Ardron
Member of NCRI Consumer Liaison Group and Lung Cancer Clinical Studies Group since August 2004.
Member of Trial Management Group for MRC QUARTZ trial into WBRT for brain metastases from lung cancer.
Member of NCRI PET Strategic Planning Group.
Participant in local nursing studies in lung cancer.
Invited member of the Macmillan Consumer Research Panels Knowledge and Skills Resources working party.
Spoken at conferences about user involvement and cancer research.

6. Where do we go from here? Importance of training and group identity
Continue to respond to requests for input to research projects
Help establish new panels
Plan future activities
Consumers identify potential research projects

7. DOCTER A User Led Research Project?
Involve
Wednesday September 6th
2006

8. DOCTER Diagnosis Of Cancer, The Economic Reality?
A Consumer Led Study of the Financial Cost to The Patient and Their Family of the Diagnosis of Cancer.

9. 10 minutes to describe DOCTER!?
Groundbreaking?
An Idea (Jan 2005)
A Research Sub Group
A Questionnaire
A Pilot Study
A Refined Questionnaire
A Protocol (Oct 2005)
A Bid Submission to SPORG
A Failure or two (Jul 2006)

10. Identify suitable user Disseminate and inform user groups of findings
groups from different
tumour sites
DOCTER
FLOW CHART
CLG members
Research
Sub Group
Address
membership
in focus group
Distribute
questionnaires
Seek minimum
response of 20
per tumour site
Disseminate and inform
user groups of findings
Analyse responses

11. DOCTER ?
Idea and concept are “Really Super”, Sheila Casserley at NCRN.
“Highly Original”, “Worthwhile and Timely”, etc.
An early attempt for user led research.
There are problems, and some of them have been caused by lack of conference with professionals, but not for lack of trying.
This addresses a real need.

12. Is anyone interested ?
Annual Meeting of Consumer Liaison Group. London, June 2006.
Surrey, West Sussex & Hampshire CRP, Guildford, July 2006.
5th National Conference of INVOLVE, University of Hertfordshire. September 2006.
Yorkshire CRN Consumer Research Panel, York, October 2006.

13. What has changed since The First Bid?
Included a professional researcher in the bid costings to help with ethics, governance and presentation issues.
Clarified the position regarding the Macmillan study.
Opted to make all investigations as local as possible, to include North Trent user groups.

14. What happens next?????

15. Any questions? Website address www.ntcrp.org.uk daveardron@aol.com
Panel Facilitator
Dr. Karen Collins, Academic Palliative Medicine Unit, The University of Sheffield, K Floor, Royal Hallamshire Hospital, Sheffield, S10 2JF telephone
E mail:

16. DOCTER A User Driven Research Project
Involve
Wednesday
September 6th
2006