Consumer Advisory Panel
ANNUAL
REPORT 2024
Consumer Advisory Panel
ANNUAL
REPORT 2024
ANNUAL REPORT 2024
Consumer Advisory Panel
Consumer Advisory Panel
Belinda Jago
CHAIR
Ray Allen
DEPUTY CHAIR
The Consumer Advisory Panel (CAP) provides ANZUP with invaluable advice on specific studies, general research directions and priorities from a consumer perspective. The CAP also provides a conduit for communication from ANZUP back to the community in order to promote research and engage community support.
Each CAP member brings their own cancer experience, professional expertise, networks, advocacy knowledge and a dedication to the clinical trials research process. Members participate on various ANZUP committees and contribute to many prostate, bladder, kidney, penile and testicular cancer research, advocacy, support and fundraising projects.
Research Meetings and Reviewing Grant Applications
The CAP continues to be actively involved in all of ANZUP’s subcommittees, Ideas Generation Workshops, and the Scientific Advisory Committee (SAC), as well as reviewing grant applications for the ANZUP Synchrony Fellowship and ANZUP Below the Belt Research Fund. The CAP also supports members with our advice from a community/consumer perspective through other ad hoc requests. Additionally, there is an increasing number of the CAP members being part of the grant applications as Chief Investigator (CI) or Associate Investigators (AI) and we continue to review Patient Information and Consent (PIC) forms.
The CAP also participated in the specific meetings as follows:
CAP Face to Face Education Session at the #ANZUP23 ASM (Sunday 9 July 2023)
This continues to be a key activity each year for the CAP. We had an excellent education session with a good interactive discussion, attended by 11 of the 12 CAP members. Given the disruption to the CAP face to face meetings due to COVID-19 and only a small group able to attend in Adelaide in 2022, it was great to have a full team and some members meeting face to face for the first time. This session was followed by the Community Engagement Forum, chaired by Leonie Young, where CAP participated in some excellent presentations throughout the afternoon. At this meeting and throughout the year, many ANZUP members generously provided their time and expertise through their presentations as part of our education topics. We thank them all for their time and for sharing their knowledge and insights with us.
International Society for Quality of Life Research (ISOQOL) (October 2023)
Whilst not a direct ANZUP CAP activity, CAP member Leonie Young was invited to present at a conference in Calgary Canada in October 2023 for the International Society for Quality of Life Research (ISOQOL). Her presentation topic was “Patient Engagement in Clinical Trials”. This gave Leonie the opportunity to showcase the ANZUP CAP model of how effectively we are engaged at ANZUP in all aspects of clinical trial research. Feedback on the presentation was very positive, and it was great to have the ANZUP CAP showcased in this way. A big thank you to Leonie for taking this opportunity as a long standing member of our CAP.
ACTA – International Clinical Trials Symposium (27-29 November 2023)
ANZUP is one of 74 member organisations with the Australian Clinical Trials Alliance (ACTA) and it crosses all health related trials not just cancer trials.
I had the opportunity to attend this meeting, which provided valuable insights into activities beyond the scope of ANZUP and offered a chance to engage with a variety of captivating presentations.
Key themes raised at the meeting regardless of disease from a consumer perspective and brought back to the CAP for continuing discussion were:
- Importance of consumer engagement
- Sapphire – The grant funding application platform
- The Patient Information and Consent Forms
- Increasing clinical trial participation rates in regional and rural areas
CQUEST (February 2024)
CAP members Juliet DeNitis and Paul Zawa had the opportunity to attend the Cancer Quality of Life Expert Service Team (CQUEST) Workshop in February 2024.
The CQUEST provides advice and support to the multi-site Cancer Cooperative Trials Groups (CCTGs) about the inclusion of Patient Reported Outcomes (PROs) in their clinical trials and other studies.
The CAP engaged in further discussion about the PROs. It was agreed that the questionaries developed to provide the PROs are an important tool, but there is much work to be done around the questions in the standard forms used. This is a topic that will be discussed further.
MRFF Consumer Led Grant Application – OAK (Outcome for Australian Kidney Cancer Patients) (June 2023)
On 14 June 2023, we submitted a Consumer Led Grant Application for Power of Patient’s Patience with four members of the CAP as Chief Investigators (CIs) with huge support from ANZUP members Haryana Dhillon, Natasha Roberts and Craig Gedye along with the ANZUP trials team. The grant application was to support “Our vision is to create a digital platform to support clinical care, provide information and decision making resources to engage consumers in research supporting Active Surveillance(AS) treatment options”. This idea arose as one of the priority needs identified through the RCC (Kidney Cancer) Horizon Scanning Meeting held in 2021.
With only 4% of applicants being successful, in December 2024 we were advised that our application was unsuccessful. However, we are continuing to pursue other funding options to keep the idea moving to provide kidney cancer patients in Australia with some decision making tools.
Farewell and Thank You – Marg McJannett (March 2024)
At the CAP’s meeting on 7 March 2024, it was our final opportunity to pass on our heartfelt gratitude to Marg for her outstanding leadership of ANZUP, particularly for her wonderful support of the CAP. She has worked tirelessly and whilst acknowledging that she has had the support of a Board and now a much larger team, the growth, success and professional image of ANZUP would not have been achieved without her passion and belief in what ANZUP stands for. As CAP we have learned so much from Marg about the importance of consumer engagement. She has ensured that we have been offered education and importantly good mentors that have allowed us to integrate and work alongside the ANZUP membership successfully. Marg has always been there for the CAP, providing a guiding hand even when she had too much to do! The CAP wishes Marg all the best for the change of pace in her well-deserved retirement.
Welcome Samantha Oakes
ANZUP welcomed its new CEO Samantha Oakes in March 2024. We look forward to working with Sam and involving her at our face to face meeting during #ANZUP24 ASM in July 2024.
In closing, the CAP remains engaged and fully supported by ANZUP through our various activities. We thank ANZUP Chair Ian Davis and past CEO Marg McJannett for their excellent leadership supported by a small and hardworking management team. The fact that half of the CAP have been volunteering with ANZUP since 2012 is a testament to their commitment to the organisation. We look forward to the year ahead under the guidance of our new leader Sam Oakes.