Aim
Engaging consumers as advisors ensures research is relevant, impactful, and aligned with the needs of people affected by the outcomes1. In 2019, Peter Mac Research had little consumer involvement with its 700 staff spanning laboratory; health services and implementation; clinical; and clinical trials research. The aim of this project was to embed a culture of consumer involvement in all research domains across multiple levels, from project to education and governance.
Methods
A research consumer engagement pilot was implemented, guided by diverse stakeholders including consumers and senior leaders as champions of cultural change. A permanent program resulted, facilitating implementation and expansion of consumer engagement across research. This involved building and maintaining a diverse, capable, and engaged consumer network; co-designing education materials for consumers and researchers; implementing processes for appropriate pairing of consumers and researchers for effective working relationships; engaging consumers in leadership roles; and evaluation.
Results
Peter Mac’s Research Consumer Engagement Program enables meaningful collaborations between consumers and researchers. The Consumer Register expanded by 24% in the 2023/2024 fiscal year, reaching 285 members. Since 2021, researchers have made 221 requests for consumer input, with nearly 90 in 2023 alone. Consumers advise on research at the project level, strategic leadership, education and in determining internal funding.
Preliminary findings from a 2024 evaluation indicate program success. Although the survey is still open, over 85% of researchers (n=43) report significant or some positive impact, especially on funding success and improved communication. Over 75% (n=36) of consumers felt effective in their collaborations and their input valued. More comprehensive evaluation results will be shared at the conference.
Conclusion
This work demonstrates that rapid, transformational change in consumer involvement in research is achievable, embedding consumers across all research domains from project to leadership levels. Key success factors include resourcing, consumer leadership, and senior leader endorsement.