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08 Dec 2021

Consumer Advocacy: An Untapped Resource

  • VCCC Alliance

The third annual consumer engagement forum on Friday 3 December, hosted by the VCCC Alliance Cancer Consumer Advisory Committee (CCAC) brought consumers and researchers together to learn about the potential for consumer advocacy, hear how consumers are having a greater say in research funding and how effective partnerships can shift the paradigm in both cancer research and education. 

It was a major step forward in consumer-led initiatives, initiating a proactive discussion with funding agencies about involvement with grant applications. 

To ensure a strategic focus and dispel any confusion, keynote speaker Professor Sanchia Aranda gave an outline of consumer advocacy saying that health advocacy incorporates activities related to ensuring access to care, navigating the system, mobilising resources, addressing health inequities, influencing health policy and creating system change.

For some, the forum was their first opportunity to consider the potential of consumer partnerships in grant funding and education initiatives. Drawing on the views of close to 100 attendees, a series of live polls elicited themes and opportunities in real-time. Sixty-one percent described consumer advocacy as co-design or consumer-led initiatives demonstrating an awareness of consumers as strategic allies.  

When asked, ‘when are consumers involved in the grant process', 36 per cent said they were involved in reviewing proposals once written, whereas only 11 percent were involved in initial priority setting.  

Why is consumer participation critical?

Organised consumer advocacy in research is not new in Australia but a continuing challenge is the lack of consumer involvement in defining research questions.  

‘Whoever gets to define what counts as a scientific problem also gets a powerful role in shaping the picture of the world that results from scientific research,’ said Professor Aranda. In a health system where science competes for funding, this could also be interpreted as… 

 ‘whoever gets to define what is important to fund or develop within
 a service will shape the future of cancer treatment and care.’

Both the Cancer Australia National Framework and the VCCC Alliance Consumer Engagement Model recommend identifying the activities around the work consumers might engage in - Informing, Consulting, Involving, Partnership and Consumer-led. 

‘We are good at the first three, said Professor Aranda. ‘But we are still weak at Partnership and Consumer-led.’ 

When asked in a live poll to identify the main challenge they encountered with developing consumer-researcher partnerships, 43 per cent selected limited resourcing as the leading challenge. A further 27 per cent cited ‘differing priorities’ as barriers to consumer-researcher partnerships.  

What do the funding agencies have to say?

Dr Dayna Swiatek from the Victorian Cancer Agency, Dr Ameera Yousiph from Cancer Australia, and Dr Bow Tauro, Medical Research Future Fund and Major Initiatives, Research, Innovation and Commercialisation at the University of Melbourne signposted some ways forward for greater consumer involvement in scientific funding. 

They endorsed the view that the consumer voice is highly valued but greater opportunities exist. ‘Better integration of consumer involvement and collaboration across the research pipeline will play a key role in the successful translation of research outcomes in clinical practice,’ said Dr Tauro. He also pointed out that most successful MRFF grants have some form of consumer element but most do not include a budget to support their consumer engagement.  

Dr Swiatek agreed, saying that the Victorian Cancer Agency was a five-year experiment in the making and that every year has given greater scope for improvement. She explained the VCA two-step process where the Scientific Evaluation Panel assesses applications for scientific merit and only the applications that meet the eligibility criteria proceed to the Consumer Evaluation Panel who then assess for impact and quality of consumer engagement. Scientific and consumer experts are remunerated at the same rate.  

Professor Aranda said that organisations need to make a solid commitment to empowering consumer advocacy if we are to move beyond tokenism and there are some fundamental challenges to overcome.

‘It requires organisational commitment, a clear plan, investment in
dollar-terms and human capacity, along with agreed metrics to assess progress.’
 

Education and training required for consumers and researchers alike

Professor Fred Hollande, University of Melbourne Deputy Head and Academic Program Coordinator with Natalie Diepenhorst, Consumer Representative showcased an educational program connecting honours students with patients. Forum attendees were able to hear from the students themselves who talked about the impact of speaking with consumers for the first time and the value they placed on this relationship for a future career in research. 

Michelle O’Sullivan, VCCC Alliance Consumer Representative talked about her experience that began over six years ago when, during radiation treatment, she was asked if she would share her experience with students. Since then, she has regularly engaged with first-year students to explain the impacts of radiotherapy, nuclear medicine, and medical imaging for someone undergoing treatment. 

 ‘It is great preparation for clinical placement’, said Michelle. ‘It reminds students
that patients are people and there’s more to it than the technology.

Walking the talk – 2022 Consumer Workshops for Researchers

The VCCC Alliance will be presenting a short, online workshop series in Feb/March 2022 to specifically assist researchers to develop an understanding and skills on the how and why of incorporating consumer and community involvement into their research practice.  

Two x 2-hour sessions will be presented by Anne McKenzie AM. Anne is a senior consumer representative on health and research committees and was appointed to the Order of Australia for 20 years of service in health consumer advocacy. In 2021, Anne received the NHMRC Biennial Award for Consumer Engagement Award.

Read more about workshops and register.

The Consumer Engagement Forum 2021 is available for viewing on the Open Learning page on our website

The Consumer Advocacy: An Untapped Resource forum was hosted by the VCCC Alliance CCAC: Sophy Athan, Carolyn Rowan, Jo Cockwill, Keith Donohoe, Michelle O’Sullivan, Natalie Diepenhorst, Sheila Patel, Wendy Benson and Paul Baden and Leslie Leckie who are CCAC Associates.

Image: Photograph from a pre-COVID consumer engagement forum.