Meet Bruce Cheek – Consumer Representative

When did you first become involved with cancer research as a consumer representative?

Around 2016.

What motivated you to become a consumer representative?

I am a very ordinary person, family oriented, had a good career, play golf and love sailing.

In 2014, I was diagnosed with Stage 3 Colorectal Cancer. During the next two years I was lucky enough to be able to observe first-hand the expertise, dedication, compassion and support provided by the medical professionals involved in my treatment. It is said that “it takes a village to raise a child.”, similarly I found that it takes a large team with different but complementary skills to treat a cancer patient.

My “team” consisted of a General Practitioner, Surgeons, Anaesthetists, Oncologists, Nurses (of all kinds), Pathologists, Administrative professionals and of course my family. Every one of them was great to me! I will always be profoundly grateful to all of them.

After my treatment concluded my oncologist, Professor Steve Ackland asked whether I might be interested in work as a consumer representative on a research project he was leading. I had very little idea what this would involve, but I was very keen to find out. Almost immediately I was hooked!

 

What research projects have you been involved with?

Initially I worked with several researchers at Hunter Medical Research Institute (HMRI) on preparation of grant applications relating to clinical trials. My role was reviewing the involvement of the patients in these proposed trials to ensure that their needs were being catered for.  This extended to work with Cancer Voices NSW and The Australian Gastro-Intestinal Trials Group (AGITG). I have also acted as a consumer advocate for several reviews managed by pharmaceutical suppliers.

I am now a member of the AGITG Community Advocates Panel, Lower Gastro-Intestinal Working Group and ASM Community Study/Co-ordinator Planning Committee and I am working on several active clinical trials.

Finally, I review applications for funding for a range of projects. I find these exercises particularly rewarding, I learn a lot, meet great people and I hope ensure that the needs of the patients who volunteer to take part in these studies are considered fully.

I recently had the opportunity to work with Danielle Skropeta from the University of Wollongong on an application titled “Overcoming the Sticking Points: Dual Targeting of Cell-Cell Interaction Processes to Treat Pancreatic Cancer”. This is a really interesting proposal to treat cancers very differently, instead of using drugs to kill the cancer cells they will attempt to train the patient’s immune system to identify and eliminate the cancer cells.

 

How have you been involved with cancer researchers?

My involvement includes a wide range of formal and informal activities. The “formal” activities are essential but not sufficient. As projects progress, informal communication becomes critically important. Formal, structured activities are often about ticking off that everything has been done and tidying up loose ends.   For “big-picture” questions such as “why are we doing this?” and “what could we do better?” we need to have informal and unstructured conversations over days and weeks. However, most of the teams with which I work are spread over the country and so face to face conversations aren’t practical. Holding such conversations such as these via email and Zoom can be difficult for those of us used to talking face to face. Luckily though, I don’t think it impossible.

I am a curious person and I talk a lot about things that interest me. So, even in emails I try to tell the people what I am doing and ask what they are doing outside the specific project we are working on. Apart from finding out lots of interesting stuff, this often leads to much more wide-ranging discussion about those “big-picture” issues within the project. This involves many emails passing backward and forward, but the effort is always worth it!  For me, the most important communication mechanisms for this work are email and Zoom!

 

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

Everything! Learning interesting things, meeting interesting and caring people and that feeling that we are doing something worthwhile.

And of course hopefully contributing to better Quality of Life for the patients and their carers who kindly agree to participate in these incredibly important projects.

 

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

Very different to what I expected. I thought understanding the medical terms and treatments would be difficult and it is sometimes a challenge, but the experts I work with are always happy to explain things in terms that I can understand – and there is always “Google”.

The two major challenges turned out to be:

• meeting tight submission deadlines for grant applications when all of the members of a large multi-disciplinary team are over-committed just doing their normal work

and

• accepting that, even though all of the grant applications I have been involved with are well planned, grounded in great science and promise great outcomes, very few of them will eventually attract funding. The competition is intense and funding available is woefully inadequate.

 

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

That is a question to ask them.  I hope that I am supportive, and I try to look “from outside” the project to see and suggest new opportunities.

Above all else, I try to bring the perspectives of patients, carers and families into the conversation. My favourite question is “how can we improve quality of life for the patients, their carers and their communities?”

 

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

How open, caring, friendly, clever, and incredibly over-committed they all are!

 

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

The work you are beginning is very important and really interesting. You are lucky to have the opportunity to make a difference. Just do your best and enjoy every minute of it.

But don’t be the quiet team member, say what you think, especially when you see something which could be improved. It is better to be wrong than not to be heard.

 

Is there anything else you would like to add?

One common thing people say when thinking about becoming a consumer representative is along the lines of “Being a consumer representative certainly seems worthwhile and interesting, but I just don’t know if I can afford the time”.

Yes, it can involve a lot of time and effort if you become involved in many projects, BUT if you only contribute to one or two projects a year it is very manageable – so start off with just one project that really interests you and see how it goes.

For a few weeks every year the time commitment will be around 2-3 hours per week, but this varies greatly from week to week. Most weeks there will be little that needs to be done. You will still have plenty of time to do everything else you want/need to.

In my case, I do most of the consumer representative work in front of the television in the evening. It is much more interesting than TV!

I have three adorable grandchildren aged 7, 5 and 3 (almost) {in 2023}. If it weren’t for the efforts of the team that treated me, I would never have had the opportunity to get to know any of them. That is why this work is so important to me.

 

August 2023