Consumer Engagement in Research
On Tuesday, 26 August 2025, the Bloomhill staff and clients had the privilege of attending the Translational Research Institute Health Research – Consumer EXPO. This event highlighted the critical role that consumers play in not only the implementation of clinical research but also the concept and planning stages of research. This reflects findings by Gard et al. (2024) stating that consumer engagement in medical research should be early, ongoing and meaningful in order to improve patient-centred research design and outcomes. A key highlight of this importance was showcased when our very own Merran Williams shared her experience in engagement and interaction with the researcher Olga Kondrashova in her access to life saving PARP inhibitors, which have contributed significantly to her survivorship journey.
Co-design is a very important concept in consumer engagement. The concept of co-design in research involves the consumers from the inception of the research design. This involves both starting early and a long time before grants are submitted. Co-design is also about the clarity what is actually being designed. Furthermore, co-design is also about resourcing research properly and paying consumers when necessary. Finally, co-design is also about the process of communication, which involves including consumers in meetings and feedback loops. Thus, co-design is a mindset and not method. Co-design is a way of engaging consumers, carers, families and health workers in a collaborative effort that can improve service (Agency for Clinical Innovation, 2019). Thus, consumer engagement is about breaching the gap between consumer needs, research focus and practical solutions.
A practical example of consumer engagement was highlighted. A consumer who had ovarian cancer was interviewed and stated how research into dendritic cell immunotherapy had helped her. Furthermore, this enabled further research into the use of checkpoint inhibitors that could possibly be used for ovarian cancer. Thus, it is important for consumer to work with researchers to determine benefit. Furthermore, by participating in research, consumers can feel involved and gives them a sense of satisfaction and fulfillment in being involved in research that can move research from the conceptual state to clinical implementation.
Thus, from this day at the Translational Research Institute, it was clear that consumer involvement plays a key role in ground breaking research that can benefit all. In fact, there is now an expectation for health service partners to work collaboratively with people who have lived experience (Agency for Clinical Innovation, 2019). Consumer engagement can also play a role in life-prolonging treatments that can only be discovered through clinical trials and consumer participation. Bloomhill is very fortunate to have their own lived-experience group, who give input into the improvement of Bloomhill service provision. Furthermore, Bloomhill is also very excited to be able to be in communication and in collaboration with initiatives that can move cancer care to a higher level of efficacy and patient-centredness. Let’s be collaborative and more cancer care forward!
References
Agency for Clinical Innovation. (2019). GUIDE: Patient experience and consumer engagement: A guide to build co-design capability. NSW Government. https://aci.health.nsw.gov.au/__data/assets/pdf_file/0013/502240/ACI-Guide-build-codesign-capability.pdf
Gard, G., Oakley, J., Serena, K., Harold, M., Gray, K., Anderson, H., Byrne, J., Cockwill, J., Cormack, G., Down, G., Kiossoglou, G., and Gibbs, P. (2024). Stronger together; evaluating consumers and researchers working in partnership. Research Involvement and Engagement, 11(40), 1—8. https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-025-00716-0
Please contact our Nurses on 07 5445 5794 or [email protected] if you have any questions.
All information provided by Bloomhill is mainly based on research from the Qld Cancer Council and best practice guidelines. Our model of care utilizes the Clinical Oncology Society of Australia (COSA) domains of wellness along with available clinical evidence. Always consult your care team regarding matters that affect your health. This is a guide intended for information only.
