How does the cancer community guide our research funding?
By Cancer Council NSW
This year, we’re excited to grant almost $9 million in funding to 13 new research projects at our annual Research Awards night. As always, we received dozens of worthy funding applications, which raises the question: How do we choose which research projects to fund?
Every eligible research proposal submitted to us is reviewed by both a panel of scientific experts and a Consumer Review Panel, which consists of cancer survivors, carers and other interested community members, before we decide to invest in them. The scores given by both the two panels are combined 50:50 to determine which projects receive funding. By including both groups, we aim to ensure the research we fund is as relevant to the community as possible, while also meeting the highest scientific standards.
A Consumer Review Panel is convened each year to make sure it’s representative of regional and metro communities, different cancer experiences, gender, and age.
We talked with Phil Mendoza-Jones, who was on the panel last year to decide funding in 2019, to see what it’s like to be involved in guiding cancer research funding at Cancer Council NSW.
Why did you want to get involved with cancer research? And how did you get started?
After I had my operation and chemotherapy for colon cancer, my surgeon invited me to get involved with bowel cancer awareness. We did some TV, radio, magazines and press. From there, one thing has led to another. I’ve done things like peer support – having coffees with people who’re going through chemotherapy, I’ve been involved with research at the Prince of Wales Hospital and I recently joined the Translational Cancer Research Network (TCRN). I’ve also done all sorts of things with Cancer Council like webinars, podcasts and exercise videos, before I became a consumer advisor with them late last year.
What was the process of joining the Consumer Review Panel and what did that involve?
I attended a training course in September (2018) to qualify to join the panel. I was then invited to join the panel, which I accepted. I was then given 31 research proposals to review. You’ve got about a month to get through them before you sit down with the other members of the panel and you review everything again together.
How does the review process work? How do you review the research proposals?
You rate each proposal objectively, looking at five elements: “What are you doing? How and why are you doing it? How long will it take? What’s the equity involved? Have you involved a consumer advocate in your research?”.
Some of the proposals are brilliantly written. And some are harder to understand because they use too much jargon. Some you relate to because it’s personal. And some you don’t relate to, but you can understand what the research is trying to achieve. I learned a lot and really enjoyed the process.
What happens when the panel comes back together to review everything as a group?
When you sit down with everybody to go through it all again, it’s amazing because you get to hear everybody else’s point of view. You might disagree with other panellists but you can understand where each other is coming from. The Chair, James Butler, did a great job at moderating the discussion and making sure panellists score according to the five criteria. He gave people their chance to speak and moved things along when he needed to.
In the meeting, you’re allowed to change your original scores. But mine didn’t change that much because I was fairly clear about what I thought about each element. If anything, I found that the conversation helped me examine and justify my own thoughts. It’s a very good process.
What would you say to someone who’s interested in getting involved with the Consumer Review Panel?
Giving back after having cancer myself has been one of the most rewarding things I’ve ever done. I go back to the surgeon who first asked me to get involved. He said to me once: “At the barest minimum you’ve saved somebody’s life. You’ve sparked something in somebody to get checked and thank God they did”. That sort of thing spurs me on to be involved more because I know what I’m doing is helping somebody somewhere in some way. So, if you’re interested in giving back to cancer research, I’d highly recommend it.
Thank you, Phil, for so generously giving your time to guide our cancer research funding. We’re thrilled to hear that you found it an engaging and rewarding experience and hope you continue your involvement with cancer research and support into the future!
If you’d like to get involved in cancer research like Phil, you need to complete two courses. The first course is the Consumers in Research training. You can register your interest in attending our next training session on Friday, 20 September 2019 in Sydney. The training is free, but spaces are limited. If you complete this course, you’ll be eligible for the second course (Consumer Review Panel training) which will be held in September 2020.