The pandemic has driven home the critical role health and medical research plays in our health and wellbeing. It is essential to involve consumers in health research as partners, not just as participants.
A high priority
Government institutions such as the National Health and Medical Research Council (NHMRC) and the Medical Research Future Fund (MRFF) are increasingly recognising the importance of consumer input into health-related research.
We’re pleased to see ‘consumer-driven research’ is the first-listed priority in the new draft Australian Medical Research and Innovation Priorities (AMBRAB):
“Consumer-Driven Research – Research that is driven by meaningful consumer involvement and partnerships, to incorporate priorities, needs, values and experiences to deliver fit-for-purpose outcomes that can be adopted by consumers, carers, healthcare professionals and other end-users.”
It is acknowledged that consumer involvement in research leads to better, translatable outcomes that improve healthcare (1). It’s vital that consumer input occurs from beginning to end of the research process. This includes identifying research opportunities, prioritising research activity, designing research, interpreting results, communicating findings and ensuring that research is translated into better public health outcomes.
More needs to be done
As consumer input is increasingly valued, recognised and mandated, both researchers and consumers require support to embed this into research practices. HIC sees it as critical to enable consumers and researchers to collaborate effectively. We are doing this through:
- developing protocols for researchers and consumers
- establishing a pool of ‘research-ready’ consumers able to engage effectively in health and medical research.
- Providing training and capacity building
Support is available
Evidence shows researchers benefit from training courses to best engage with consumers (2,3,4). For many years HIC has provided training to researchers on how to work effectively with consumers from setting shared research agendas to how to engage with consumers along the research cycle.
We also provide training and support to consumers to build their capacity in areas including:
- Being an effective advocate for research
- Working in partnership with researchers to set up research agendas and engage in the research cycle.
- How to review research grants and appraise research protocols.
Robert, a clinical researcher, who undertook training with us said
“It is particularly useful to hear about the experiences and ideas around consumer engagement from other researchers. I am now planning to extend my research and speak to carers of patients with cerebral palsy about their experiences of sleepless nights. I hope this will complement my research on carer’s fatigue.“
Leading the way
We are really proud to announce that Health Issues Centre has recently become Australia’s first consumer-led research organisation to achieve MRFF Eligible Organisation status. Over half of MRFF grants last year were for patient-led projects – we look forward to partnering with the sector on future MRFF grants to further improve consumer outcomes in healthcare.
HIC remains committed to advocating to ensure consumer perspectives are embedded in Victoria’s and Australia’s Health and Medical Research eco-system and looks forward to continuing to work with our partners to support consumers in research into 2022 and beyond.
If you are interested in arranging training and development in the area of consumers in research, please reach out to us at firstname.lastname@example.org.
(1) Shelef, D. Q., Rand, C., et al. (2016). Using stakeholder engagement to develop a patient-centered pediatric asthma intervention. Journal of Allergy and Clinical Immunology 138(6): 1512-1517
(2) Brunton G, Thomas J, O’Mara-Eves A, et al. (2017). Narratives of community engagement: a systematic review-derived conceptual framework for public health interventions. BMC Public Health;17(1):944
(3) Miller CL, Mott K, Cousins M, et al. (2017). Integrating consumer engagement in health and medical research – an Australian framework. Health Research and Policy Systems;15(1):9.
(4) Anderst A, Conroy K, Fairbrother G, et al. (2020). Engaging consumers in health research: a narrative review. Australian Health Review;44(5):806-813.