Meet Phil Mendoza Jones – Consumer

What motivated you to become a consumer representative?

Having survived colon cancer and chemotherapy, I was invited to join the CIPN (chemotherapy induced peripheral neuropathy) research project at UNSW because I was still experiencing peripheral neuropathy – consumer insight brings a real perspective to the research work. Soon after I was invited to participate in a Cancer Council webinar on the same subject. Then another webinar which led to podcasts and doing exercise videos for the CCNSW website. Next was training to be a CCNSW research grant reviewer, which led to rating over thirty applications and a meeting with other CRs to determine which researchers would get the funding. Following that, the TCRN (translational cancer research network) invited me to join their team. All of this work is very involved and incredibly rewarding.

What research projects have you been involved with?

There are so many, but I will list a few to demonstrate their diversity …

• Single cell multi-omics of circulating tumour cell clusters
• Chemotherapy Induced Peripheral Neuropathy
• New therapeutic option for lymph node metastasis in rectal cancer
• Supportive care interventions for colorectal cancer patients
• Evaluation of Vitamin D for prevention of prostate cancer
• Development of diagnostic device for pancreatic and ovarian cancers liquid biopsy

How have you been involved with cancer researchers?

Meetings and discussions with researchers and their teams about how best to develop and communicate their work; reviewing and developing their grant applications.

What do you enjoy the most about being involved with a research project?

Learning. Having experienced and survived cancer, understanding how many other forms of this insidious disease – and potential cures – is most rewarding. Knowing also that in some way my involvement will help a cancer patient down the line.

What are some of the challenges that you have faced as a consumer rep?

Acronyms, drug names, medical and clinical trial procedures, scientific jargon … anything scientifically obscure.

How have you been able to help your researcher with their project?

Translating everything from Point 7 into plain, simple language. Researchers admit to working within their own scientific bubble, and really need a consumer rep to help communicate their work so it can be understood and appreciated by the non-scientific world.

What do you know now that you would like to have known at the beginning of your involvement with researchers?

The learning process from square one has been invaluable to me. You can’t have an early brief on this. It must be experienced progressively and exponentially. The more you become involved with different researchers, the more confident you are with your input.

If you could say one thing to a new consumer representatives, what would it be?

Your involvement as a consumer representative is critical to the success of every researcher’s project. Their work can only be judged and appreciated when translated and presented in lay terms. They can’t do it, but you can. That’s why they need you.

A final word ……

There have been a number of spin-offs from my direct work with researchers …

• Talks to UNSW medical students about peripheral neuropathy
• All day session with 120 senior high school students on cancer and chemotherapy … they were in the process of deciding to do medicine or research at university
• Many surveys which included Covid 19 and prostate cancer, CIPN, post chemotherapy care.