Consumer and Māori engagement in focus at CTN workshop

Sessions explored how researchers can embed consumer engagement and Māori partnership from the earliest stages of developing a research question and designing a study, and continue that engagement through trial delivery, interpretation, implementation and dissemination.

Using the PUMA trial as a case study, Paige Druce and Dr Luke Perry shared practical approaches to consumer co-design, including surveys of patients and family members and a dedicated co-design symposium. Consumer input directly influenced aspects of the trial, including the selection and prioritisation of outcomes and reducing follow-up requirements to lessen participant burden. Speakers also highlighted the importance of diverse representation and appropriate recognition and remuneration of consumer contributions.

Consumer advocate Peter Button reinforced the importance of genuine partnership rather than a ‘tick-box’ approach, highlighting the value lived experience brings to ensuring research is meaningful, practical and relevant to patients and communities.

The workshop also explored Māori partnership and equity in clinical research, particularly for studies involving New Zealand sites. Dr Matthew Moore encouraged researchers to consider Māori partnership and equity from the outset, including the composition of the research team, the relevance of the research question to Māori health, appropriate collection of ethnicity data and Māori data sovereignty. For Australian-led studies extending into New Zealand, the session also highlighted the importance of understanding New Zealand-specific ethical and research requirements rather than assuming Australian approaches will apply.

Together, the sessions reinforced the importance of investing in relationships early and sustaining meaningful partnerships throughout the research lifecycle to strengthen the relevance, equity and impact of CTN research.

Banner image (L–R): Dr Luke Perry, Peter Button and Paige Druce.