Consumer: Sophy Athan on the value of consumers
VCCC Research & Education Leads use their skills, knowledge and networks to identify key opportunities within 10 tumour streams as well as cancer nursing and primary care, to convert important research into routine practice.
Much of the research in Australia is dependent upon receiving a grant. Consumers are playing an increasingly important role in labs to gain funding, and the Medical Research Future Fund has a stated objective to maximise opportunities for research translation by engaging with consumers.
Sophy Athan has first-hand experience of assisting a research team to secure funding which resulted in a successful grant from the Movember Prostate Cancer Research Alliance.
VCCC Chair, Cancer Community Advisory Committee
There has been a shift in terms of involving consumers. Nowadays, if you don’t include consumers, community and patient perspectives then the grant is deficient in terms of having heard that voice and taken that into account. It is crucial to take into account the lived experience, the impacts and how those experiences might affect the development of the research project and its potential translation into delivery of service.
This is not just one voice. It is important for researchers to think carefully about the research going forward and how you would engage with the consumer cohort. Research needs to have consumers involved not just in the process, but throughout the development to ensure the outcomes benefit consumers and the community.
The value of consumers and researchers together
Consumer participation can make the research richer – more accountable, more relevant and hopefully feed into better practice standards.
If the research is about an impact for a particular group, researchers need to do what it takes to engage authentically with that group to ensure subtle and more obvious impacts are not missed out.
If an interpreter or translator is needed, then you do what you have to do, because ultimately these are the people who will be impacted by the work you are undertaking.
Transparency and accountability in research
We, consumers and the general public, need to have a better understanding around research in general. Once people understand the process, standards, ethics, governance and benefits, then they are more likely to participate. Most people don’t really grasp the connection between research and the deliverables within a hospital.
Community engagement needs to be done in a way that is accessible and relevant, such as the language used, and must provide dialogue and establish processes between consumers, community and researchers.
Researchers may also have their own anxiety about working with consumers. Will they be understood? Will it cause me some issues? We need to have the dialogue and build a relationship.
Don’t assume, always check
Consumers participating in research must be adequately supported around the basics such as transport, access and never be out of pocket.
We need familiarisation, such as meeting the people involved in the research, getting to know the team, understanding the research goals, checking in informally and formally if we are to ensure to e that everyone is heard.
At times it is difficult for consumers to talk about experiences as they are deep and personal, but there is also an altruistic motivation to participate in research which encourages us to put our hand up and become involved.
The final outcome may not help me personally, but it may help someone else.