Pitfalls and peaks: the formation of a Consumer Research Panel (CRP)

2006 Conference

Consumer Research Panels are being developed over the next two years in Cancer Research Networks in England. They aim to advance consumer involvement in NHS cancer research, through their establishment in three pilot site cancer networks. The panels are made up of consumers (patients and carers) who in some way have experience of cancer services. The Humber and Yorkshire Coast Network is one of the three pilot sites.

In order to incorporate the views of users/consumers in its research programme, the National Cancer Research Network (NCRN) and Macmillan Cancer Relief initiated funding for the three national panels. The main role of the panel is to offer a consumer perspective for potential new and existing research studies, review cancer research protocols, write patient information sheets, and generate fresh research ideas in the cancer field and to promote the benefits of consumer involvement.

We are gradually overcoming the problem of being isolated from the research community and have recently completed commentaries on research proposals. From our experiences we are producing our own guidelines on how consumers assess, and usefully comment on, research protocols. We feel as a group experienced to advise others on what makes a consumer research panel successful.

The paper will provide information on how the group was set up. It will identify the obstacles faced and how we overcame these. The main points discussed will be:

• How the group came about
• Background of members
• How consumers are involved and roles played
• Training
• Experiences
• How to set up a CRP
• Options of how to be involved
• Funding
• Time commitments/meetings
• Further opportunities