Introduction: Engagement of consumers, the public, or patients into health and medical research has become increasingly recognised as an important part of cancer research (1). In 2012, the Translational Cancer Research Network, based at UNSW Sydney in the Southeast of Sydney, comprising of over 350 researchers and clinician members, recognised the need to develop a consumer engagement (CE) program that would meet the needs of its members.
Aims: This study aimed to evaluate the effectiveness of the network’s CE strategy from the perspectives of consumers and researchers. Additionally it sought to understand the factors that contributed to effective CE in a large research network.
Methods: 78 researchers and 14 consumers were invited to complete a survey to capture their definitions of successful consumer engagement, experiences of what worked well, and their overall experience with the network’s CE strategy. Participants were also given the option to consent to a follow-up interview. The interviews were transcribed, and the survey results were coded separately and reviewed independently. The themes were identified by the research team and aligned to the key elements of the Australian Framework for Consumer Involvement in Cancer Control (Cancer Australia and Cancer Voices Australia).
Results: Forty-four researchers (56%) and 12 consumers (86%) participated in the study. Successful experiences of consumer engagement were identified as having:
Participants responded that the CE program helped nurture successful consumer engagement by having a structured and streamlined consumer engagement process, educational sessions and peer learning, having a designated consumer engagement coordinator, an active consumer-researcher matching process and having the research network’s leadership actively involved with consumers.
Some felt their experience was not as successful. This was defined by a lack of communication and mismatched expectations.
Discussion: This study demonstrated that a systematic approach to CE was key. Leadership and organisational commitment was essential, including sufficient ‘back office’ support. Capacity building for both consumers and researchers was also considered a determining factor as well as providing opportunities to upskill consumers and researchers.
Conclusion: It is recognised that involving consumers in cancer research adds value by providing lived experiences that help shape the direction of research. Results from this study can assist other research networks in developing successful consumer engagement programs.