1 Consumer Research Panels - Increasing the knowledge and building up skills INVOLVE CONFERENCE WORKSHOP 6 th September 2006 Gillian Fletcher & Neil Gillespie

Increasing the knowledge and building up skills ‘ Help, I’m new to consumer involvement in research’ Or, put another way

Q & A ‘Help, I’m new to consumer involvement in research’ Background and context A consumer’s personal experience Skills Resource pack The 4 R’s - or is it 5? Research terminology

4 Consumer Research Panels - History Definition of Consumer: The term 'consumer’ encompasses current and past patients, carers, users, customers, clients and supporters; therefore the NCRI and the NCRN have adopted this terminology as the terms 'user', 'service user' or 'patient' are unpopular with some people because they seem to imply dependency and sickness. Aims of Panels: The panels aim to be the consumer voice in the prioritising, development, monitoring and evaluation of cancer research projects both local and national; To work with professionals participating in the basic and clinical research cycle for areas of cancer research: To act as an advisory body to cancer, supportive and palliative care clinicians/researchers seeking to educate service users and the general public about cancer care issues

5 Consumer Research Panels - History A National Cancer Research Network (NCRN) initiative in 2004 Three pilot sites established Oct 2004 – Feb 2005 with different models South Coast Panel – Southampton Launched Oct 2004 with the membership made up from Consumers only – some of whom had a previous medical background or detailed knowledge of their Cancer and were involved on National and International Working Parties. Humberside & Yorkshire Panel – Hull Launched Jan 2005 with the membership made up from Consumers only – some of whom had a previous medical background or detailed knowledge of their Cancer and were involved on National and International Working Parties. Surrey West Sussex & Hampshire Panel - Guildford Launched Feb 2005 with the membership made up from 2/3 rd Consumers and 1/3 rd Medical Professionals – including Consultants from differing specialties; again many of the consumers were involved on National and International Working Parties.

6 Consumer Research Panels - History Three pilot sites established Oct 2004 – Feb 2005 with different models The initial site were chosen for their characteristics – Southampton had the Research Departments of the University – Guildford for its diverse area and different hospitals – Hull for its size being a smaller rural locality Each site has been subject to an independent evaluation by the Patient & Public Involvement Research Unit at Worthing & Southlands Hospitals NHS Trust– report due out soon.

7 Consumer Research Panels - History ‘Help, I’m new to consumer involvement in research’ In 2005 the NCRN, in Conjunction with Macmillan Cancer Support developed a Resource Manual entitled An Introduction to Clinical Research The key aims of the manual are to provide panel members with a reference to basic research information to enable them to have to the confidence to actively participate in Research projects they are involved in, and not be overwhelmed by the jargon and medical terms. After completion of the Reference Manual came the need to provide additional support to Consumers by way of training.

8 Consumer Research Panels

Six Chapters - Cancer research & consumer involvement - What is Cancer - Research Methodology - Roles and Responsibilities - Influencing research - Health economics/decision making Skills Training Resource Contents:

People who are researchers are……

The barriers to effective consumer involvement are…

12 Thank you