On Friday 26 November, our Consumer Advisory Panel (CAP) met virtually, joining from all corners of Australia and New Zealand to welcome four new Panel members.
Established in 2008, the CAP comprises of GI cancer survivors, patients and carers. All CAP members volunteer their time and play a critical role in providing a consumer perspective and advice to the AGITG on general research directions and priorities as well as identifying unmet needs in the community.
CAP Chair, Jan Mumford, along with existing CAP members and GI Cancer Institute staff welcomed new members – Bruce Cheek, Madison Shakespeare, Mary Kearney and Shari Reid.
Our four new CAP members bring a breadth of personal experience with GI cancer and will offer an invaluable contribution to this already strong and well-established advisory panel. See below for more on the experiences of our new CAP members.
Bruce resides in regionally in Lake Macquarie, NSW. In 2013, he was diagnosed with Stage 3 colon cancer and after recovering, his Oncologist, Professor Stephen Ackland spoke to him about getting involved in consumer advocacy. For several years now, Bruce has been involved in consumer groups for Hunter Medical Research Institute, Cancer Australia, Cancer Voices NSW and Hunter Cancer Research Alliance.
“It was when I realised that the AGITG aim is to improve cancer management through a focus on implementation that I became really excited. Covering the full life cycle, including needs identification, discovery research, real world trials management and eventually better outcomes for all is not easy; but when done well I believe it is extremely effective. The possibility of being able to contribute to highly skilled multidisciplinary teams, working together in a strategic way to improve outcomes for those effected by GI cancer was too good to miss.”
When the love of Madison’s life was diagnosed with cholangiocarcinoma, she saw the opportunity to join the AGITG CAP as a way to fulfil her passion for finding solutions for early detection, diverse treatment options, quality and end of life choices to ensure that all are able to realise self-determination. As an Aboriginal Australian, she is also a large advocate for addressing the needs of Aboriginal and Torres Strait Islander Australians, working in research that is focused on addressing disparities caused by social determinants of Indigenous health.
“My hopes for the AGITG going into the future are to develop strategies to ensure equitable inclusion for patients and carers that facilitate the involvement of patients in rural and remote areas and support avenues through which their family can be part of patient involvement in research. Also, to develop a cultural framework to ensure that all First Nation People stakeholders are culturally protected and safe. This includes patients, carers and research staff and healthcare professionals. More specifically, ensuring that governance protocol of a tissue bank includes a culturally sound framework for First Nation Peoples that relies on culturally appropriate processes and procedures across all levels of operation.”
Currently in remission, Mary is a Pancreatic Cancer survivor after being diagnosed in 2020. Located in Ashburton, New Zealand, Mary will be bringing her experience of the New Zealand medical system and is pivotal in increasing our representation across Australasia. Mary also considers herself a success story and wants to be able to help the research in any way I can.
“As you can imagine, parts of 2021 have not been ideal as I finished my chemotherapy at the beginning of the year so recovery has been my main goal. I am now 12 months post-surgery for pancreatic cancer and six months post-chemo, so I wanted to give back somehow and thought this would be an ideal way. My hopes for the organisation are that more is done in the areas of research that can offer hope to patients in all areas of GI cancers, by the introduction of new treatments.”
Seeing the call out for new CAP members on social media, Shari wanted to use her experiences to help other cancer patients. Shari is a Gastro-Intestinal Stromal Tumour (GIST) survivor, after she was diagnosed with the rare cancer in 2019. As an Australian representative for the GIST support group, The Life Raft Group, Shari knows how important advocacy and improvements in treatments are for GI cancer patients.
“I had been involved in action and advocacy in getting Qinlock onto the PBeS and felt I could be of service in other ways beneficial to the GI Cancer Institute. My hopes for the organisation are to continue to be actively and effectively of service to all who are affected by GI cancer, and to see the day when a cure for all is found. We all hoped and planned for 2021 to be a better, less disruptive year than 2020. However, for me, I feel blessed to prevail as a cancer survivor and I’ll take any momentous year with gratitude and joy.”