For applied research to have an impact it is imperative to know what the end-users want. Therefore, we first need to identify the end-users and then engage with them to give them a role in conducting the research. This includes up front asking questions such as: Who is the end-user? What outcomes are they seeking? How can they be involved in the research? What are the potential sources of funding? And how will we know if the research has made a difference?
A study with the NHMRC Cognitive Decline Partnership Centre was founded by Professor Anneke Fitzgerald upon the aim to improve the lives of Australian’s living with dementia and their carers, through the development and implementation of research and research findings.
“To achieve implementation of the research findings, we worked very closely with consumers and carers by “placing them in the driver’s seat” co-leading every stage of the research.”
One project aimed to understand how consumers, Australian’s living with dementia and their carers, experienced their personal journey whilst navigating the healthcare system. Responses were mapped out using Essomenic© a patient journey modeling software. A visual story telling approach was used to create a snapshot of the current state of play as experienced by the consumer. A very high level of engagement was essential to ensure consumers felt comfortable sharing their journey, which for many was an emotional experience. The consumers and their carers, mapped various pathways through the healthcare system that was unique to them.
Consumer-led research has direct impact on participants (L-R) Gordon and Jenine Elsmore, John Quinn and Glenys Petrie. (Photo supplied and used with permission)
“The consumers made numerous suggestions for improvement to create what we called an “ideal state” journey,” Professor Fitzgerald said.
“We found that no single journey was the same and systems were confusing and difficult to navigate. Responses underpinned the need for further research especially system wide improvements in care and service delivery.”
“For our consumer researchers, they were fully engaged and one person living with dementia stated at a conference presentation that this was the first time that he had felt respected and heard. In addition, the results were disseminated very quickly and widely though consumer networks and this has led to calls for further research.”
In addition, the implementation of key themes and findings that arose from this research helped shape the justification of a nation-wide program developing dementia guidelines.
Most importantly, the research flagged the value of including end-users and accepting consumer voices allowing them to co-lead the research. This form of engagement, by including consumers in the research team, was highly successful, credible and impactful.
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