Consumer advocates urge investigators to engage with consumer advocates through the life of their projects for meaningful and authentic inclusion.
IMPACCT Consumer Advisory Group
On 19 November, the IMPACCT Consumer Advisory Group (CAG) gathered in-person for their biannual meeting. It was great to welcome fifteen enthusiastic consumer advocates to Sydney with CAG members travelling from other states and regions, as well as those who joined us online.
The CAG was established to ensure that consumer advocates are actively involved in shaping our research, supporting curricula development and providing general guidance on our strategic direction.
Led by CAG Coordinator, Dr Vanessa Yenson, the biannual meeting had a full agenda with updates from the Cancer Symptom Trials (CST) team. This included presentations from the PaCCSC/CST National Manager, Dr Rayan Saleh Moussa, and PaCCSC/CST Project Officer, Meg Stewart, about CST’s strategic direction as well as a review of the consumer engagement framework and plans for the upcoming PaCCSC & CST Research Forum 2025.
The meeting was full of lively discussions about consumer advocate perspectives on their contribution to research projects. Collectively, they reiterated the need for investigators to engage with consumer advocates early, often, and consistently through the life of their projects (and beyond). This included the call for better lay summaries for meaningful, authentic inclusion, which would translate into better consumer engagement and project success.
As always, CAG members brought detailed and thoughtful insights into how the research sector could better engage under-served, marginalised and vulnerable populations. Their passion to ensure optimal care and outcomes for future patients, carers and communities through research rang loud and clear to all present.
Perhaps the most inspiring part of the meeting was when we heard from CAG member, Peter Spolc, who has taken the plunge to be a “Higher Degree Research Patient Warrior.” In November, Peter commenced his PhD with IMPACCT, under the supervision of Associate Professor Tim Luckett, to investigate the role and impact of consumer advocates in research.
I woke up one morning and thought, why am I waiting for the research I want to see? Why not do it myself?
Peter Spolc, CAG member and PhD candidate
We wish Peter all the very best in his research and the IMPACCT CAG will support him in his endeavours. The enthusiasm and passion of this group is summed up in Peter’s own words, "We want research that leads to practical improvements in the lives of my peers and me."
We are keen to expand and diversify the CAG membership. If you are a patient or caregiver with lived experience of aged care, chronic care, palliative care, or cancer supportive care, and you are interested in becoming an IMPACCT consumer advocate, we would love to hear from you.
Please contact Vanessa Yenson via email to impacct@uts.edu.au or submit your expression of interest via an online form: uts.edu.au/research/impacct/about-us/consumer-engagement/consumer-advisory-group.