Consumer Advisory Panel (CAP) Update

By Belinda Jago, CAP Chair

As 2020 draws to a close it will certainly be a year The CAP did a fantastic job supporting this event by that we remember, especially for the Victorian CAP participating, donating, fundraising and promoting. members who were in lock down for many months. It provided a great opportunity to focus on something The CAP normally meets face very positive during the pandemic. The event will to face but due to COVID-19 continue next year in May we have been using zoom and I encourage all readers as a meeting platform. to consider joining the This hasn’t stopped our challenge. All funds raised important contribution to go directly to below the belt ANZUP’s trials. Including cancer research. our involvement in the I had initially thought about Below the Belt Research sitting this activity out. It Fund application selection has been a long hard winter process. This has worked in Melbourne. Being home really well and zoom since mid-March, it was has certainly helped in a year where there were facilitating the discussions many special milestones to especially around the patient be celebrated but were all / community feedback cancelled. Hopefully in 2021 required as part of the we will start to catch up! We selection criteria. miss our life and although we During this challenging are way better off than many year, ANZUP has remained people we just felt very flat committed to running its and very unmotivated. clinical trials and delivering the TOP ROW L-R; COLIN O’BRIEN, LEONIE YOUNG, JOE ESPOSITO MIDDLE ROW L-R; MELISSA LE MESURIER, MATT LEONARD, The whole COVID pandemic best standard of care for those RAY ALLEN. BOTTOM ROW L-R; LES LAND, BELINDA JAGO, took us back to when Bec was impacted by below the belt MICHAEL TWYCROSS diagnosed with kidney cancer (bladder, kidney, penile, prostate and testicular) cancers. in 2006 and for the next 5 years we had to learn to deal They have taken a very proactive approach to ensure the with uncertainty, change and no long term planning. health and well-being of the clinical members, staff and You feel you have lost control of your life and now it was especially the community, in particular those patients happening again. participating on our clinical trials. But for those who know me I’m not good at sitting This year has also welcomed positive initiatives. on my hands. I decided I should support the #YourWay Teletrials have been implemented for rural and regional campaign in a more active way and would regret patients, as well as patients who are not comfortable it if I passed up the opportunity. leaving their homes during the pandemic. So I’m very happy to say we are really glad we joined ANZUP also introduced a new virtual campaign Below the #YourWay challenge. It has really improved our the Belt “#YourWay” developed to raise awareness daily focus in a very positive way as we deal with the and funds for below the belt cancer research. The Melbourne #lockdown blues. #gettingfit #fewblisters annual Pedalthon events were postponed due to AND importantly we are helping to raise much needed COVID-19 restrictions, so the Below the Belt #YourWay funds for clinical trial research. Challenge took place over the entire month of September and participants could walk, run, cycle or swim as many kilometres as they could – keeping both mind and body healthy. Tony and I called our team ‘Just the 2 of Us’. Once again we thank the many family and friends who have supported us and ultimately helped clinical trial research into these #belowthebeltcancers. This support

will help improve the lives of families with a loved one like our beautiful Bec.

We were delighted to receive news that ANZUP had successfully won three awards from ACTA (Australian Clinical Trials Alliance) Clinical Trials 2020: National Tribute and Award Ceremony including ACTA Trial of the Year. ANZUP’s ENZAMET trial has been recognised as one of the most important clinical research advances for advanced prostate cancer. Not only did ANZUP win ACTA Trial of the Year but also the ACTA STinG Excellence in Trial Statistics Award and the ACTA Consumer Involvement Award.

The CAP were delighted to be involved in the ENZAMET trial and provide a patient perspective.

I would like to acknowledge and congratulate the ANZUP CAP who worked together on the ENZMAMET trial with the trial management committee. In particular, I would like to thank CAP members Ray Allen and Colin O’Brien for adding their own personal experiences with prostate cancer.

More details can be found on page 21.

On behalf of the ANZUP CAP, I wish you a healthy and happy festive season.

May 2021 be bigger and better.

BELINDA JAGO CAP Chair Blog Post DAY 14 - Tony and I have continued to walk many #YourWay kms in the second week and hope to reach 250kms by the end of Sept - an extra 100kms on what we set out to do.

BELINDA & TONY WALKING FOR #YOURWAY

CAP Grant Review Guidelines

ANZUP’s mission is to conduct clinical trial research to improve treatment of bladder, kidney, testicular, penile and prostate cancers so we have policies and procedures in place to provide a roadmap for day-to-day operations. These policies and procedures give guidance to decision making, streamline processes and ultimately ensure the safety of the patients involved in our clinical trials.

This year we decided to reassess some of our processes and guidelines to ensure they are fit for purpose. It is important our governance processes are based on evidence and feedback so the first step was updating the review process for the Below the Belt Research Fund applications. The Below the Belt Research Fund was established to support our members in the development of investigator-initiated studies and grants of up to $50,000 are available to successful applications. So it is extremely important all applications are reviewed equally and follow a set procedure. number of our members, but up until the review of this process, the Consumer Advisory Panel (CAP) had minimal input. In previous years only two CAP members were appointed to review the applications individually. They would then attend the larger grant review meeting. Feedback from only two of the CAP members did not fully represent the opinions and experience of the entire CAP.

The decision was then made to review and re-write the CAP Grant Review Guidelines by both the CAP and ANZUP Trials team. The revision meant the entire CAP would now be able to review all the applications together, before two nominated members joined the wider review committee to share the views and feedback of the entire CAP.

Being able to discuss all grant applications as a complete group made the two nominated members feel much more confident when joining the larger review panel. The revised process meant the CAP review really represented the voice of the community and reflected what was important while also taking into consideration what ANZUP as an organisation stands for – i.e. to “improve patient outcomes” through following our strategic direction.

Not only was the review process updated but the review ‘score sheet’ was also evaluated and improved. This was necessary to ensure the questions and scoring reflected the knowledge and experience of the CAP and ultimately represents the voice of the patient and public.

This improved process means the CAP can continue to be a mechanism for advice on specific studies, general research directions, and priorities from a consumer perspective. Clinical trials are an important element of the cancer journey for cancer patients, but there are issues that require clarification for cancer consumers. The CAP will continue to provide a conduit for communication from ANZUP back to the community in order to promote research and engage community support. We look forward to working with our CAP on the review of future grant applications.