Professor Dianne Shanley has always had a lifelong passion for helping people and improving care. “Even when I was a student, I was researching how to improve mental health systems and how we can improve access to care for children,” she explains. That drive to get health services out to children who need it most was what inspired her research into what has become a groundbreaking, no-barriers new healthcare model.
The Yapatjarrathati Project, a name gifted by Kalkadoon Elders meaning ‘to get well’, involves research conducted by Dianne and a team of Griffith experts, conducted in collaboration with six organisations including Gidgee Healing—an Aboriginal Community Controlled Health Organisation. The team co-created a new model of holistic, culturally responsive healthcare that celebrates Aboriginal and Torres Strait Islander people strengths. The new approach includes a six-tier assessment, known as the Tracking Cube. This model integrates with everyday health checks and clinical decision-making tools, helping to triage children to support pathways.
And although it was initially created to address and properly triage children with Fetal Alcohol Spectrum Disorder (FASD), the project has the scope to revolutionise the way we treat all sorts of childhood disorders.
“My work has always been about how we can help all children with neurodevelopmental impairments get the help they need,” Dianne explains. “So even though we started trying to solve the problem with one neurodevelopmental disorder—FASD—the solution we’ve found could actually help support all neurodevelopmental disorders.”
Dianne continues: “Currently a specialist assessment to diagnose a neurodevelopmental disorder can involve a wait time of one to three years. Our health system is clogged.
“We realized we needed to think differently, because children in remote areas have an even harder time of getting the care they need because of the lack of specialists in those regions,” she says.
“So we took the comprehensive assessment that specialists do for diagnosis and broke it into six parts—and we found out that non-specialists could do five of those six parts.
“We knew that if we could get this out of the specialist system and into the primary care system, kids could get the help they needed closer to home.”
By breaking down that triage process into six manageable steps, Dianne and her fellow researchers worked out how people such as Aboriginal health workers, nurses, teachers, child safety officers and youth workers could also valuably contribute to the journey, removing the bottleneck at the specialist end of the equation. “People can contribute information to each tier, and then we built the digital infrastructure to stitch those tiers back together. Now, we are working on embedding the process into practice management software in a primary care setting,” she explains.
Addressing five of the six tiers in a primary care setting in some cases removed the need for a specialist referral altogether.
“Our system helps the child’s primary care team to collect all of that information, and then hands it to a GP, who can augment their clinical decisions based on the data from our decision support tool. This helps them to decide which children need to see the pediatrician and which children could continue to be managed in primary care with the right support,” Dianne says.
“By working with the Kalkadoon and surrounding communities, and co-designing this program with them, we realised they already knew how they wanted their children supported and we worked with them to implement it and prove it works. They showed us the way and we’ve helped them to apply it more broadly,” she says.
So far, the project has been rolled out in the communities surrounding Mt Isa and more than 700 children have been triaged using the Tracking Cube. “When the tracking cube was used, kids were four times more likely to be identified as having a neurodevelopmental disorder and six times more likely to be supported close to home. Moreover, the quality of the referrals to specialists improved.”
Based on that pilot data, Dianne says she and her team have been very fortunate to be successful in receiving an NHMRC partnership that’s just recently been announced to roll the project out at eight new sites across the country.
“The next stage of our research is looking at how we stagger the implementation across those sites so that we can learn from each site,” she says.
Additionally, the team was accepted into the Lumina X healthtech accelerator program to explore how to make the program sustainable when funding finishes. “We’re really fortunate to have been invited to participate in this,” she says, “because what often happens is that we get grant funding, and we develop a great thing and then the funds run out or the grant ends. If you are lucky, whatever you’ve developed continues to be implemented, but in the absence of ongoing funding, it cannot be maintained and improved, so it just dies when it becomes out of date.
“We want our system to continue to evolve in response to community needs and health system challenges. So, we are now thinking of how we can set up a business model—that’s what the Lumina X program is all about. We want to have the resources to enhance the product for new communities and allow us to give back to the original co-designing community,” she says.
“Ultimately we hope to improve access to care for all children so that no child is left behind, and we want that to happen across the country.”
For additional information and project updates see yourtrack.org.