David Ardron

Chair of North Trent Cancer Research Network Consumer Research Panel and NCRN Consumer Liaison Group

There has been a significant history of patient/carer involvement in the cancer research cycle in Sheffield, where one of the earliest consumer research groups was set up in 2001. The group still functions under the auspices of the North Trent Cancer Research Network as the Consumer Research Panel. When Sheffield applied for its status as an ECMC in development, the panel was delighted to help with this and our members were invited to join the development meetings.

The panel have mirrored the evolution of the NCRN Consumer Liaison Group, and several CRP members have served on the national group. We have experience of working hand in hand with researchers to develop and carry out research projects, mainly phase 3 clinical trials and qualitative supportive care studies, but we look forward to developing co-operative methods of working in early phase trials to help the development of the ECMC in Sheffield. When Professor Penella Woll highlighted consumer involvement as a key strength of our Centre at the ECMC Network meeting in November 2007, it was a proud moment for the panel, and we are keen to explore ways in which consumer involvement can enhance early phase and translational research.

I have been a member of the panel in Sheffield for five years and a member of CLG for four, and I have a great belief that patients and carers have an important role to play in cancer research. I am very pleased to be involved in the ECMC Initiative, and applaud the aims and objectives of the Centres. This Initiative will help to speed up the transition of scientific advances into effective clinical therapies, an aim which is central to consumer involvement, and one in which patients take great interest. I completely support the work of these major new centres of excellence.

Ernesto Rogata

Consumer Representative, Leeds, Bradford, Hull, York ECMC

I have been a cancer patient in the Leeds area for 10 years, where I have received excellent care and also have developed a very good relationship with the professionals who look after my health - in particular I have come to know Debbie Beirne, Nurse Consultant, who asked me if I would be interested in joining the centre?s local ECMC steering group and introduced me to Prof Chris Twelves. I felt very pleased and honoured, but also quite confused and overwhelmed. I kept asking myself how I could help, whether I would be saying useless things in meetings and by so doing would I be wasting everybody else's precious time.

After attending two meetings and talking to ECMCs members, my perception has already changed and I have started feeling more comfortable in my new role as a consumer representative.

There are two main components to this change: firstly, the anxiety-fuelled experience of sitting in a room with a large number of eminent professors proved to be an extremely rewarding and engaging one. I have always been amazed how the more successful and established people are, the more approachable, humane, ready to listen and interested in others' opinions they also are.

Secondly, with the help of reading material, training and networking, the ways in which a lay person can contribute to cancer research and the ECMCs' work started to become more clearly defined.

Patients and carers can play a very important role in fulfilling the aims of the ECMCs. From reviewing the ways recruitment for early stage trials is carried out to demystifying the idea that ECMCs might just be another way for the pharmaceutical industry to make money; from working as guarantors that the translational nature of ECMCs is never overlooked and that the focus ultimately has to be on the improvement of the quality of life of those affected by cancer to making sure that all the information is delivered in an effective, easy-to-understand way, with the acronyms explained, etc - these are just a few examples of the many opportunities we lay representatives have, to offer an important contribution and work hand-in-hand with scientists and researchers.

Anne Croudass, Cancer Research UK Lead Nurse

In the course of my job, I have been privileged to work with people affected by cancer in many different ways. One of these was setting up a consumer research panel. This involved recruiting a group of consumers with an interest in cancer research and ensuring that they were able contribute to local cancer research.

After the initial, very steep, learning curve - for them and me - the consumer group were able to interact with the local research community in a way that was mutually beneficial. The group were involved in a variety of activities including co-writing information sheets for complex cancer studies, assisting with training for junior researchers, advising on ethics applications, reviewing and re-writing tissue banking documentation right through to acting as co-researchers and leading focus groups.

Working with this group of people was exciting and rewarding. Seeing them develop their knowledge and skills and using them in conjunction with their own personal cancer experience made them a valuable asset to the research community. Working with them was always exciting, often challenging, but overwhelmingly rewarding.