By Sally Crossing AM, Chair of Cancer Voices, and Elisabeth Kochman, Deputy Chair of Cancer Voices.
Cancer Voices values consumer representatives being included in cancer conferences. The benefits go two ways – for both consumers, and for clinicians and health professionals.
From our view point, they are a great opportunity to hear about latest developments in the treatment and care of cancer, to meet the specialist movers and shakers of the cancer world, and to have the opportunity to alert attendees that we exist and why we do. Cancer Voices always joins the poster throng with one or two posters on our own most interesting achievements toward improving outcomes for people affected by cancer.
We understand that the professional Colleges and groups, who assist a few of us to attend, find the “added value” worthwhile as well. After all, we consumers are the ultimate users and beneficiaries of the clinical and research work that they do, so engagement with us surely makes good sense. An as an added bonus, some good friendships and long-term collaborations have eventuated from our getting together once a year.
This year, in recognition of those organisations which do welcome consumer input, Cancer Voices Australia has established the “seal of approval” logo, Consumers Included. Conference and event organisers who meet the criteria which demonstrate they are truly keen on consumer engagement can then display the distinctive Consumers Included logo on their conference material, websites, etc. The idea has been warmly welcomed – since April, twelve have done so, and there is now interest beyond cancer.
A tale of two big conferences
RANZCR Review by Sally Crossing AM
The Royal Australian and New Zealand College of Radiologists (RANZCR) this year showed major interest in consumer input. Sally Crossing was invited to address two plenary sessions of the radiation oncology stream. The conference theme was Modern imaging and radiation therapy: appropriate, collaborative and targeted. Sally opened with Hearing the Consumer Voice session (on 13th October 2016) and closed with Consumer Engagement: the Ultimate Collaboration (on 16th October 2016). She also participated in a Faculty Forum. RANZCR is highly supportive of those consumers working on its various committees; Sally is a member of the Faculty of Radiation Oncology Council and has experienced this first hand. RANZCR made good use of its access to the Consumers Included “tick” in its conference material.
The ASM was a smorgasbord of presentations, by international and national speakers in both radiology and radiation oncology streams, and filled the four days to overflowing. For the consumer, it was a matter of picking and choosing amongst topics about which we had a little knowledge, then plunging into those where we had none at all. This, though occasionally overwhelming, is the magic of these Annual Scientific Meetings. Opportunities to talk and learn about issues affecting consumers, radiologists and radiation oncologists came up during much needed breaks. Sally felt that a broad brush with this kind of science added greatly to her ability to operate as a constructive consumer representative on consumer issues coming under this specialty.
COSA by Elisabeth Kochman
The 2016 Clinical Oncology Society of Australia’s (COSA’s) 43rd Annual Scientific Meeting (ASM) was a joint conference with the Australia and New Zealand Breast Cancer Trials Group’s (ANZBCTG’s) 38th ASM and was held at the Gold Coast. The last breast cancer themed conference was held in 2010. Elisabeth Kochman ably represented Cancer Voices.
The packed three day program was very impressive and diverse, comprising breakfast sessions, plenaries and concurrent sessions presented by international and national experts. We heard of the latest global advances (and challenges) in breast cancer treatment and research. With topics aplenty, my biggest problem was choosing which sessions to attend!
One quarter of all cancer survivors worldwide are breast cancer survivors and it was acknowledged that for many, cancer is now recognised as a chronic disease. It was therefore pleasing to have sessions focusing on issues such as health and wellbeing, survivorship, the role of physical activity, weight management, nutrition, pain, Lymphoedema, genetic testing, employment and finance to highlight just a few. Many of these are issues which have been identified by and advocated for, by consumers over a long period of time.
Male breast cancer was also on the agenda. It is rare, with an estimated 150 men diagnosed in Australia this year. Challenges, treatments and psychological issues were discussed. Two male breast cancer patients were part of that discussion and shared their experiences.
Congratulations to Leonie Young (Chair ANZBCTG Consumer Advisory Committee) for lobbying hard for the inclusion of a breakfast session where researchers and consumers came together and engaged in a productive manner. Titled “How engaging with consumers can add value to your research”, the relevance and benefit of this engagement was acknowledged. I was delighted when one of our dear departed (Sally Hodgkinson) was mentioned regarding her valuable contribution of several years ago!
The opportunity to attend conferences such as COSA is invaluable. To learn and network with fellow attendees strengthens ones capacity to be an effective agent for change.[hr]
Sally Crossing AM is Chair Cancer Voices NSW and Convenor, Cancer Voices Australia. Sally has been involved in the Australian cancer consumer movement since 1997, and has had breast cancer since 1995. This year she received an Honorary Doctorate from the University of Sydney for “extraordinary leadership and contributions to supporting those with cancer from diagnosis, through treatment, care support and survivorship, in both advocacy and research”.
Elisabeth Kochman is the Deputy Chair of Cancer Voices. You can learn more about Cancer Voices here.