Debra has worked across all levels of government and in the not-for-profit sector. Her background is in preventive and population health.
Debra told us, "Capturing and including the voices of people and communities with lived experience has been fundamental to all aspects of my work, regardless of what I have been doing and where I have been working."
"I've always had a heart for community," she admits. "I have always worked with, in and for the health and wellbeing of communities."
Championing lived experience in research at the national level
Debra advocates for consumer and community involvement in research as a member of the National Health and Medical Research Council (NHMRC) and Medical Research Future Fund (MRFF) Consumer Advisory Group.
"The Consumer Advisory Group brings together people from different states, roles, areas of expertise and networks to guide and inform decision-making at the NHMRC and the MRFF regarding consumers and community," she explains.
"These individuals' expertise lies in their lived experience as a person and/or carer of a disease or condition, and this informs research prioritisation, ideation, design, implementation and translation."
"Together, we ensure that the relevance, needs and outcomes of consumers and community are considered when decisions and plans are made about current or future funding programs, priorities and guidelines."
For Debra, consumer involvement in medical research funding decisions is essential. "With the involvement of lived experience voices, we can be confident that research and its outcomes are relevant, realistic and will make a difference to individuals and communities."
"The addition of this lived experience pillar of expertise, when combined with the two pillars of expertise from a clinical and research perspective, ensures that all parts of the research story and cycle are complete, informed and will have significant impact."
"The MRFF has led the way in recognising and then making 'visible' consumer and community involvement as an expected and essential part of a national research funder's guidelines and principles."
Connecting researchers and communities
Debra's passion for inclusive, best practice research shines through her work. She heads the Consumer and Community Involvement Program-a platform of the Western Australian Health Translation Network. The program helps bring researchers, consumers and community members together to make decisions about health research priorities, policy and practice.
Researchers can access services, resources, and training programs that help them to engage with consumers and community members throughout every stage of their research.
Consumers and community members can stay informed about, and apply for, opportunities to be involved in research. They can also undertake free training on research processes, terminology and how to successfully contribute to a research team.
"My role allows the voices of those living and caring for people with disease conditions to inform and be involved," says Debra. "I enjoy bringing people together to connect and share, knowing that everyone benefits when we value expertise and have the opportunity to listen and collaborate in partnership."
The power of lived experience
Debra recognises that her lifelong experience with chronic disease has brought an additional lens to her work. "I know firsthand how the expertise of someone living and breathing a condition can add another perspective to best practice research processes, ideation and translation."
"We are all here to make a difference, and getting involved to inform research and be recognised as a valued research team member due to lived experience is an amazing experience."
"It's a great feeling knowing that there are benefits beyond yourself to living with a condition, and it gives perspective to the day-to-day challenges that individuals and their carers have."
A message to people with lived experience
Debra says many consumers and carers do not realise they can help shape research-not just take part in it.
"When given the opportunity to speak with consumers and community, I love sharing that 'they are the experts on their own lives' and that expertise is vital in working with and alongside researchers to inform what should be researched and how best to do this."
"You don't have to be an academic, or someone with lots of letters before or after your name! Just being available to share your experiences brings a richness to research priorities, ideas and translation that most researchers cannot access-as they do not live with what they are researching. There is a lot of support and training available to guide and encourage everyone."
For Debra, the reward is clear.
"It's brilliant to use your lived experience to make a difference and know that, as a result, your involvement might mean the next diagnosis for someone is better than what it was prior to the research you've been involved with."
