Introduction by Croakey: The power and value of embedding consumer engagement in health and medical conferences was showcased in February’s Australian Lung Cancer Conference.
Consumers welcomed the opportunity to be involved, and physicians appreciated hearing from patients living with lung cancer, as public health consultant Rebecca Zosel writes below.
Rebecca Zosel writes:
The need to work with and not for affected communities and the critical role of consultation, engagement and co-design is not new.
Community empowerment – the process by which people gain control over the factors and decisions that shape their lives – is central to the field of health promotion and features in the global health promotion workforce competencies of the International Union of Health Promotion and Education (IUHPE).
Some organisations such as Consumers Health Forum of Australia and VicHealth are practised and skilled at elevating the voices of those with lived experience. However, others have been slower to recognise its significance and to adapt their ways of working.
A renewed focus on consumer engagement is evident in Australia, as shown by the recent $8.5 million investment by the Albanese Government to support those with a lived experience of mental health to shape the policies and programs that affect them. See 30 January 2023 media release and related Croakey and Medical Republic articles.
This case study outlines how Lung Foundation Australia embedded the lived experience of people living with lung cancer and their families and carers throughout a scientific conference.
The Australian Lung Cancer Conference (ALCC) is a biennial scientific conference hosted by Lung Foundation Australia. The ninth ALCC was held from 15-17 February on the Gold Coast, Queensland, as previously reported at Croakey.
The case study is structured around the stages of the International Association for Public Participation’s (IAP2) Public Participation Spectrum, which form the basis of Lung Foundation Australia’s Consumer Engagement Strategy.
A dedicated Consumer Program tailored for a consumer audience took place in the week following the scientific conference. This four-part series, held exclusively for patients and carers, was designed to complement and summarise the scientific program from the week prior.
The four-hour Consumer Program was delivered over two days and included presentations from a selection of speakers from the scientific program, consumer designed and led presentations including lived experience panels and interactive Q&A segments.
The consumer program was provided virtually and free of charge to optimise access. Recordings of the sessions are available (session one, two, three and four). A total of 65 people registered for the program.
Two consumers (one carer and one person who lives with lung cancer) joined the Scientific Committee and contributed to program development from the lived experience perspective.
A Consumer Advocacy Subcommittee of the ALCC2023 Scientific Committee was chaired by Lorraine Tyler, who is living with lung cancer.
Experienced and trained consumer advocates were invited attend the conference, including those who had completed the LFA Your Voice training program as well as advocates affiliated with organisations outside of LFA.
As part of the process, consumers completed an Expression of Interest (EOI) form to indicate their preferred level of involvement, such as contributing to workshops and chairing sessions.
Nineteen consumers representing five Australian states and territories attended, including people living with lung cancer and their families and carers. This included (as shown in the feature image): Alison, Bolton, Amanda Muxworthy, Anita McGrath, Anne Fidler, Carly Magnisalis, Danielle Curnoe, Debra Buckskin, Graham Hall, Jodie Turner, Lorraine Tyler, Marilyn Finn, Michel Itel, Michelle Thorpe, Natasha Paul, Peter Spolc, Poh-Cheun Escoffier, Sara Nayda, Susan McCullough OAM, and Terri Byrne.
The consumer voice and experience was integrated throughout the scientific conference including conference sessions and themes. This included:
- Design of the scientific conference program around the lung cancer patient journey
- Two consumer representatives invited to join the ALCC2023 Scientific Committee to provide the lived experience perspective in program planning
- Consumer Advocacy Subcommittee of the ALCC2023 Scientific Committee established and Chaired by a consumer to plan the consumer advocacy workshop
- Consumer advocacy pre-conference workshop
- Inclusion of space in the consumer advocacy workshop to remember and pay respects to consumer advocates who have passed
- Collaborative experiences between consumers, Lung Cancer Nurses and Early Career Researchers during pre-conference workshops
- Consumer video introductions for sessions and use in promotion. This concept was consumer-led and the videos produced by consumers on a voluntary basis.
- Live introductions to sessions throughout the program and specifically the palliative care and survivorship stream
- Consumer representation on conference panels and as session chairs
- Consumer contributions to abstract reviews
- Consumer networking opportunities woven throughout the program.
Professor Fraser Brims, Consultant Respiratory Physician, Sir Charles Gardiner Hospital, Perth and ALCC Conference Co-Convenor, said:
No other conference I’ve been to has had such strong representation from consumers.
It is universally so powerful to see and hear patients living with lung cancer and carers and loved ones who live with the effects too.
It provides great focus and I find it humbling to hear their stories. For myself and my colleagues, it is the reason to carry on.”
The conference included a survivorship session in which consumers were able to share their raw and real stories about living with/beyond lung cancer from a lived experience perspective.
An advocacy workshop led by consumers provided an opportunity for the 19 consumers attending the conference to honour advocates and loved ones, celebrate successes, network and connect, and develop skills and knowledge around sharing their stories, working with Lung Foundation Australia and advocating for reform.
In the advocacy workshop, consumers reviewed the Lung Cancer Blueprint (2022) and brainstormed solutions for accelerating lung cancer reform in Australia.
Lessons and reflections
In addition to support from Bellberry for five consumers to attend the conference, Lung Foundation Australia invested an additional $25,000 from the conference budget to support consumer engagement. Consumers attending ALCC had all their expenses covered.
LFA staff organised and booked all consumer travel and accommodation, and a Lung Foundation Australia staff member was available at the conference to support consumers. Consumers attending ALCC had access to LFA’s Employee Assistance Program, a staff expense claim form, and a tram pass for the week. It is worth noting that not all conferences or organisations would have the resources to do this.
Some challenges were encountered when embedding lived experience into the conference.
For instance, 26 consumers planned to attend the scientific conference; however, illness and treatments prevented all from attending.
Furthermore, the number of consumer attendees needed to be limited based on the advice from LFA’s expert reference groups on not encouraging large, in-person gatherings for consumer groups where a suitable alternative is plausible, and due to the presence of pharmaceutical sponsors at the conference and the related Medicines Australia Code of Conduct regarding interactions with the general public.
Key improvements for future conferences identified by LFA staff include engaging more consumers on the Conference Scientific Committee to share the workload and ensure diverse input, and introducing a dedicated consumer lounge.
Lorraine Tyler, Lung cancer consumer advocate and Chair of the Consumer Advocacy Subcommittee, reflected:
“Consumer involvement in this conference was welcomed and embraced by all concerned from planning right through to delivery. Right from the start I was welcomed onto the Scientific Committee and always felt my input was listened to and respected. I felt free to make suggestions and found everything I suggested was included.
“I was particularly pleased with the video project. Many consumers had their voices, and elements of their stories heard, in a relatively safe way. We were privileged, through this medium, to hear storytelling from two First Nations women who have cared for and still care for their family members. We gave a voice to a community overrepresented in lung cancer statistics but underrepresented in lung cancer advocacy. This video was shared with the entire conference audience and I hope this is just the beginning of the lung cancer community listening to our Indigenous brothers and sisters.
“Consumers were integral to the conference as our voices brought another dimension to the scientific content. The opportunity to spend time face-to-face with and share experiences with other lung cancer advocates in our own workshop was precious.
“Next time we need more consumers on the committee to achieve greater perspectives and as the workload was extremely high (I have event management experience so I was prepared). The nature of our health situation means that there might be a need for consumers to take a break during preparations so we should build in contingency for that up-front.
“It was a privilege to have been part of a conference so focused on achieving better outcomes for lung cancer patients and our families.”
About the author
Rebecca Zosel is a public health consultant living on Bunurong Land. Over the years Rebecca has been commissioned by Lung Foundation to deliver multiple projects including Lead Author of the National Strategic Action Plan for Lung Conditions, National Blueprint for Lung Cancer Action and National Silicosis Prevention Strategy. Lung Foundation paid for Rebecca’s conference registration. This article was not commissioned.
Rebecca acknowledges and thanks Brigitta Rose, LFA Project Manager Education and Training, and Fiona Hannam, LFA Policy and Project Officer, for sharing their insights on consumer engagement which have been incorporated in this article.
See Croakey’s archive of articles on consumer health matters.