Collaborating with communities

I never planned to move into research. I already had an established paediatric career at the Royal Children’s Hospital. But in 2008, I took a six-month break from my clinical role in Melbourne and spent six months at the Menzies School of Health Research in Darwin.

Being in the Northern Territory gave me the opportunity to see first-hand the inequities that exist for First Nations children in Australia. There was a real need for people with my expertise in developmental paediatrics. I had quite an epiphany that I couldn't just return to my life in Melbourne. I decided to resign from my position at the Children's Hospital. What started as a sabbatical turned into a four-year stay and a PhD, which I completed in Melbourne.

I saw a pretty confronting gap in how we monitor young children’s development in remote settings. Non-Indigenous families all over Australia have access to so many different screening tools, designed to pick up developmental difficulties in children, because early intervention can improve long-term outcomes. But at that time in the Northern Territory, there were no culturally appropriate tools being used with Aboriginal and Torres Strait Islander families. Most parents and caregivers have an experience of going to their child health nurse, and being asked structured questions about childhood development. It just wasn't happening for Aboriginal and Torres Strait Islander families.

That led me to the development of the Ages and Stages Questionnaire for First Nations children (ASQ-TRAK). I collaborated with two remote Aboriginal communities, early childhood development and child health experts, and cultural and linguistic experts to determine how we could adapt the mainstream ASQ. We modified the English to be simpler and easier to translate into Aboriginal languages, illustrated every question with a culturally relevant image and made the activities more relevant to remote communities. For example, a question about drawing might include an image of a child drawing in the sand.

We’ve done the research, and now we’re putting it into practice. We’ve validated the ASQ-TRAK for use across Australia.It’s being rolled out in a number of jurisdictions as the tool of choice for Aboriginal and Torres Strait Islander families. Through the University of Melbourne, as a non-profit model, we’re offering the training that goes with the ASQ-TRAK to support staff and organisations to use it faithfully.

I’m now working on developing the ASQ-STEPS, a tool to measure developmental progress. After participating in an early childhood program or receiving support, we will be able to use the ASQ-STEPS to measure how that child has responded and if there’s been a difference over time. It’s going to help us measure which programs are making the most difference, so we can focus on the programs that will have the most effective outcomes.

Our partners have been instrumental through this whole process. I can't stress enough how important collaborating with the Aboriginal communities has been – communities who have identified this as a priority. We’re working in partnership with several services in the Northern Territory and South Australia, including the Central Australian Aboriginal Congress, the largest Aboriginal Community Controlled Health Service in the NT. The development of the ASQ-STEPS has also been supported through funding by the Medical Research Future Fund and the Northern Territory Department of Education.

It’s been an absolute privilege to work with so many different stakeholders, particularly Aboriginal and Torres Strait Islander communities. It's an honour to have a place at this table, and to provide some leadership to drive the project. It can be a challenge to have so many people involved — in terms of what we have the capacity to handle — but it’s fundamental to the success of this very applied research.

We need to have the end users co-designing the research with us, otherwise it’s not going to be relevant, and it's less likely to be implemented. A huge part of what I do on an everyday basis is engaging with stakeholders from conception right through to implementation.

There’s an understandable tension between large research institutions and Aboriginal communities, which have historically been exploited or been subjects of unethical research. There is still a legacy of those practices. We have to continually recognise and address the ethical implications of our research and ensure that we don’t repeat the trauma of the past.

That means we need to respect the communities we work with and to be in authentic and meaningful partnership and collaboration with them. Sometimes that means we aren’t working at a pace that the University would traditionally expect. We also need to understand that this research can’t be commercialised in the way that other medical discoveries can.

But I think there are some really innovative leaders at the University who recognise having a social impact is the biggest priority. They are being very supportive of this work. There is no commercial return for the University, but they know it’s having a huge social impact. There’s no doubt this work has been recognised as innovative for that reason.

I'm committed to improving developmental outcomes for Aboriginal and Torres Strait Islander children. But it’s not just about children. We’re addressing inequities in long-term health and wellbeing outcomes for First Nations people. But in addition to that, I want to grow the Aboriginal and Torres Strait Islander workforce in research so that we can contribute to Aboriginal and Torres Strait Islander self-determination.

In the long term, I’d like to hand this program over to be led by a First Nations person. It’s what is needed. I've been able to recruit an Aboriginal research assistant, and the Department of Paediatrics has created a PhD scholarship for an Indigenous PhD student to work on the project. I would like to see the team grow so that there are more First Nations researchers and staff, eventually leading this work.

As told to Kate Stanton

Banner art by Emma Long

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