Before Professor Bogda Koczwara joined Flinders Medical Centre (FMC) in the late ‘90s, the notion of cancer survivorship was just that – a notion.
Thanks to her trailblazing efforts since entering the survivorship space in 2008, that notion is now a very real, integrated and integral part of the patient journey at the Flinders Centre for Innovation in Cancer (FCIC), a world-leading cancer centre co-located within the precinct shared by FMC and Flinders University.
Instrumental in developing the survivorship focus at FMC and, later, at the FCIC, which is now a leader in the field, Professor Koczwara also established the oldest cancer survivorship conference in the world.
“Having a cancer diagnosis changes your life forever and creates a list of concerns, worries and needs that need to be appropriately addressed,” says Professor Koczwara, who is a senior staff specialist at FMC, Professor of Medical Oncology at Flinders University and lead in survivorship for the SA Health and Medical Research Institute’s Comprehensive Cancer Consortium.
“When the Centre was being created, there was growing recognition that cancer survivors have many unmet needs,” she says.
“More and more of our research and that of others was showing that cancer survivors are at risk of adverse outcomes including premature death, disability, unemployment and higher healthcare costs.
“The conventional system of cancer care delivery was just not focused on those issues so we developed a partnership with Professor Patricia Ganz at UCLA, the authority on cancer survivorship. She served as a guide to how we have modelled survivorship services at Flinders from its inception.”
Worlds oldest survivorship conference
Professor Koczwara says her biggest achievement at Flinders has been establishing the Cancer Survivorship Conference.
Since 2013, the biennial conference has brought together clinicians, researchers and survivors from across Australia to understand and address the issues facing cancer survivors and the priorities for survivorship care and research.
“The survivorship conference is by far the most important in my experience in cancer at Flinders because it has solidified our relationship with cancer survivors and advanced issues relating to life after cancer,” Professor Koczwara, who convenes the conference, says.
“We have progressed research into areas that previously had been under-recognised and we've developed long-lasting relationships with people affected by cancer.”
Mexican wave, from Flinders to Texas
Before the conference went national, a smaller, local affair was held in 2011. That event, Professor Koczwara recalls, featured a virtual Mexican wave from a Flinders lecture theatre to the LIVESTRONG Foundation HQ in Austin, Texas.
“A long time before Covid and online connections, we had an online connection with the cancer survivorship group at LIVESTRONG, which was established by cancer survivor Lance Armstrong.
“One time we did this amazing Mexican wave; they waved to us from Austin and we waved to them from one of the lecture theatres at Flinders – it was a lot of fun.
“And at the very first national survivorship conference in 2013, we were standing on the lawn outside the Stamford Grand in Glenelg and there was this huge group of people, some of whom are not with us today but who have left a lasting legacy; one being Ashleigh Moore.”
Ashleigh Moore led Cancer Voices SA in 2007, a volunteer organisation dedicated to making a difference to cancer outcomes and improving the patient journey through advocacy, knowledge exchange and community involvement.
In 2012, Ashleigh was awarded an Order of Australia Medal (OAM) for services to the community through Cancer Voices SA. Chris Christensen led the organisation from 2017 until her death in 2020.
Professor Koczwara says Ashleigh and Chris made a profound impact on the development of the FCIC: “They gave their life for what they believed in, and their advocacy efforts were intricately connected to the Centre.”
The future of survivorship
Having accomplished so much since the FMC survivorship program hit the ground running in 2009, Professor Koczwara says there is still plenty of work to do.
“We have the oldest cancer survivorship conference in the world and some great global partnerships, but we want to expand on those connections to remain relevant not just in Adelaide and Australia, but around the world.
“We also need to ensure the Centre itself is as responsive to patient needs as it was designed to be so that we remain responsive, interested, and holistic in the care and research we deliver.”
As the FCIC marks its 10th year in 2022, Professor Koczwara says the legacy is not about the building but the people within it – a sentiment echoed by her colleagues.
“So many talented people have come through the Centre that we've trained and supported, who are outstanding clinicians and researchers today in Adelaide and elsewhere.
“Investing in the legacy of an initiative, it’s not the building, it's the people. And there have been some amazing people that have come through the doors who have really made a difference.”