New UQ Centre putting lived experience at the heart of research
Advancing inclusive research practices is the focus of a new UQ Research Centre.
The newly established Centre for Living Experience Research (LEX) seeks to bring together researchers, people with lived and living experience, communities and organisations to shape how research is designed, done and used.
The Centre, sitting within UQ’s Faculty of Health, Medicine and Behavioural Sciences, brings together multidisciplinary teams alongside an expansive community of practice.
Centre Director Associate Professor Sarah Wallace from UQ’s School of Health and Rehabilitation Sciences says inclusive methods can lead to research that works for people.
“When research leaves people out, it produces evidence that does not work for them,” Dr Wallace said.
“You see it down the track as treatments people cannot access, services they will not use, and findings that never reach practice.”
A particular focus for the Centre is to improve access, inclusion and participation for people who have traditionally been underrepresented in research and decision-making. “Our work is about the 'how' of research,” Dr Wallace said.
“We want to find better ways to involve people from the outset, especially those who are harder to reach and harder to hear.
"If we can get that right, then we hope that everything downstream gets better, from the questions we ask to the care people receive.”
Ms Gwenda Darling is a dementia and aged care advocate and member of the Living Experience Advisory Group for the MRFF-funded Conversations About Care project.
She says there is a tangible gap between representation in research and outcomes.
“Rarely do you get researchers come back to you with the outcomes of the research you participated in,” Ms Darling said.
“It’s rare for them to say ‘we are doing this, we are building a centre, we are talking to GPs and getting them to change the way they practice – we are actually doing something because of the feedback you provided’.
Ms Darling explains there is also a gap with whose experiences are being represented in research, which can result in a lack of trust in the process.
"I’m becoming more and more disenchanted with research because they are only choosing people who are interested in a particular subject,” she said.
“Whereas, if you are actively involving people with lived and living experience, you aren’t skewing the results, you are getting a true picture of what is happening in the world.
“The reason it’s so important to have a Centre for Living Experience to be involved is to give people an opportunity to share their experiences to help others.
“But it’s also about providing them consistency and transparency throughout the process to build trust.
“If you have an opportunity to participate in research and to create change for the benefit of others, I think that’s really important.”
Dr Wallace hopes reprioritising lived and living experiences as part of research will improve outcomes for all involved.
“If we want this to be more than good intentions, we have to study how we involve people as rigorously as we would study any other method.
“That is the work I want LEX to be known for.”