The second annual consumer engagement forum on Wednesday 9 December, hosted by the VCCC Cancer Consumer Advisory Committee (CCAC) brought together consumers and researchers in equal numbers, as well as those who support these working relationships. With over 80 per cent of the participants having existing experience, the forum set out to explore ways to enhance consumer integration into research practice.
VCCC Executive Director, Professor Grant McArthur opened the virtual meeting alongside Sophy Athan, Chair, VCCC Cancer Consumer Advisory Committee and Dr Joanne Britto, VCCC Consumer Engagement Manager.
He acknowledged that consumers have long been a part of the VCCC way of working but more recently had initiated a wave of change that is evident across the sector. This is reflected by thirty per cent of all consumer activity undertaken by the VCCC being consumer-led. This ensures alliance-wide understanding of cancer and consumers is consistent with contemporary practice and aligns with our goal to put patients at the centre of our work.
Joanne Britto highlighted the value of the VCCC Consumer Engagement Toolkit which was launched exactly a year ago and has since prompted over 8,000 page views and close to 1,200 template and document downloads. Remuneration for consumer participation at the VCCC was introduced this year, and the new VCCC-Melbourne Academic Centre for Health (MACH) Community of Practice strives for a sustainable approach to improve effective engagement across the sector.
“It is gratifying to note that of all visitors to the toolkit, more than half are clearly spending time with the content, and learn from the information we have shared.” Dr Joanne Britto
Dr Tracy Putoczki, laboratory head in the Personalised Oncology Division at the Walter and Eliza Hall Institute of Medical Research shared some of the ways that consumers engage with her research. She said, “Granting periods are relatively short whereas research – and what matters most to patients and carers is all about the long game. It is true to say, particularly in years like the year we have all just shared, that consumers keep us going.”
Kathy Minas who is a retired professional and consumer representative on Tracy’s team added, “The real benefit of consumers is that we don’t always have a science background. It is the diversity of skills and a belief in how ideas should be presented that enable us to add value.”
Dr Gabrielle Haeusler, Royal Children’s Hospital, Murdoch Children’s Research Institute and Peter Mac is a peadiatric infectious diseases physician with a special interest in children with cancer. Gabrielle spoke alongside Cindy Bakos whose life changed in an instant in 2017 with the words ‘your daughter has leukaemia’.
Despite the limitations of communicating via a Zoom virtual platform, the respect and care between the two women was striking, sending a strong message to participants on the value of relationships. “Cindy is more than just a Mum,” said Gabrielle. “She brings her lived experience to the research space which is invaluable. Our research team has a diversity of skills and attributes, with a parent alongside an implementation scientist and a health economist.”
Interactive small group discussions to ‘workshop’ stages of the research cycle raised some common themes. For consumers and researchers, there’s value in integrating different perspectives at all stages from identifying research design to grant proposals to steering group management, implementation and evaluation and ultimately analysis and dissemination.
In particular, consumers commented on the importance of engaging early in a research project and for researchers to engage with consumers early in their careers. Key themes for both groups were:
Learnings from the forum will be available in the VCCC Consumer Engagement Toolkit early in 2021 and shared via VCCC newsletters - subscribe here.
The forum was an initiative of the VCCC Cancer Consumer Advisory Committee: Sophy Athan, Andrea Selleck, Carolyn Rowan, Jo Cockwill, Keith Donohoe, Les Leckie, Michelle O’Sullivan, Paul Baden, Sheila Patel, Wendy Benson, Natalie Diepenhorst.
