Innovative Models - Tracking Cube with Professor Dianne Shanley

A conversation with Professor Diane Shanley, a clinical psychologist and an expert in implementation science. Interviewed by Dr Brad Jongeling at the 2024 Annual Conference, Gold Coast.

Professor Dianne Shanley explains the Tracking Cube, a co-designed, tool-agnostic framework that breaks down neurodevelopmental assessment into six structured tiers to improve early identification and support for children, especially in remote and Indigenous communities. Developed with community input, it enables non-specialists to conduct much of the assessment using tools like the Rapid Neurodevelopmental Assessment (RNDA), helping to triage more effectively and start support early while awaiting specialist input. The system has shown promising results in improving referral accuracy without overwhelming services and is now being trialed in other regions through an NHMRC-funded stepped-wedge RCT to evaluate its broader national potential.

Transcript

Brad 0:10
Hi, I'm Dr. Brad Jongeling and I'm at the Australasian Society of Developmental Paediatrics Conference in the Gold Coast. And we've been talking about systems reform. I've got with me here Dianne Shanley, who's a clinical psychologist and expert in implementation science. And we're going to talk a bit about a new project that she's been working on over the last three or four years in relation to the tracking tube and its use in Indigenous and Aboriginal populations and more recently within the Gold Coast System for neurodevelopmental disability kids. So welcome along, Diane.

Dianne 0:41
Hi, Thanks.

Brad 0:43
So Dianne tell us a little bit about the tracking cube and perhaps its history and what you foresee as it has been used for.

Dianne 0:51
Yeah, this all got started actually back in 2017. We got some funding from the Department of Health to really try to think differently about solving the wicked problem of foetal alcohol spectrum disorder. And as we know, there's waitlists of up to three years to try to get a diagnosis of FASD and we knew that the remote communities, they really didn't have any access to care. So with this funding we were up in north west Queensland and some of the local Kakadu community up there said, Look, we know our kids are getting left behind. And Dr. Marjad Page was the cow cartoon gang leader. One man from up there who is also a GP and he introduced us to the right elders in that community and the elders more or less guided our journey and said, Look, we can do things differently up here. We can support these sorts of assessments locally. So what we did was with through a co-design journey, we took the comprehensive assessment that the specialists do and we broke it into six parts and then we actually found out that the non-specialists and I say that word cautiously, I'll come back to that, but non-specialists can do five of the six parts, and we built the digital system to stitch those parts back together so that the kids could actually get help locally and in remote in remote areas like North-West Queensland, Aboriginal health workers who are specialists in their own right, absolute specialists, but they they're not pediatricians trained in assessing FASD, but they were able to contribute to this care journey for the children, and they did. And so the tracking hub is all about getting things out of the specialist area and into primary care so that kids can get the help that they need close to home.

Brad 2:39
So you talked a bit there about the five of the six aspects of the assessment. Do you want to just talk a bit and break that down. Tell me about what those are and what you see is being done by the GP with the special interests or the specialist GP and by the paediatrician.

Dianne 2:54
Yeah, well, it's I'll take it even broader than those two disciplines, the six parts that we broke the neurodevelopmental assessment into. They formed six sides of the cube and that's why it's called the tracking cube. And the vision was that if we could place a tracking cube on every GP's desk, they would know how to assess neurodevelopment. And those six parts should come as no surprise to any anybody who knows how to do a neurodevelopmental assessment because there's nothing new about those six parts. The first is informed consent. We make sure that families come along the journey. And in north west Queensland, Marjad Page wrote a Dreamtime story to go along and explain that health care journey. And so that is part of our informed consent process up there where families truly understand the journey that they're about to embark upon and consent to it. Tier two is taking a history, and as we know, that's part of what we do with families all of the time. We break that into their developmental history and things that aren't going to change because it's already in the past and their current wellbeing as well. So that's tier two. Tier three is a rapid neurodevelopmental assessment. Now some might call that a screener, We like to call it a rapid assessment because it's not just a parent report It's actually a structured observation of a child and it gives us a score on nine neurodevelopmental domains of typical mild, moderate, severe. And that particular tool that we use goes from 0 to 17, which is wonderful because most developmental screeners cut off at the age of six. And we know we miss a lot of kids, that we don't catch them all once they're six and up. So tier four is collaborative information. So that's parent and teacher reports, stuff coming in to kind of add more depth to our understanding of the information that's already gathered. Tier five is feedback and support that goes the whole length of everything at all times. We just made it its own tier to make sure that we didn't forget about it. But the point is we brought that forward in the care journey. So rather than comprehensively assessing a child and then figuring out your support plan, the aunties and the elders up in the community said, We need to start supporting our kids now. So we brought support forward and based on the information gathered in tiers 1 to 4, we actually have a support plan that is community driven and really focuses on low intensity, high frequency things that can be done right there while you wait for your specialist appointment. And then Tier six is the comprehensive assessment. So that's where you get psychologists and speech pathologists and Ot(s) and paediatricians to come in and comprehensively assess the areas that have been flagged as having more of a concern.

Brad 5:26
So that sounds very interesting. I suppose one of the questions I ask, and I think it was actually a question that someone in the audience had on the app and that was it has this particular screening test the tracking cube, has it been standardised? Have you compared it against other things say in the younger age group. Obviously Ages and Stages quesntionnaires is a pretty common one or if you move through how it compares and to the gold standard of say, Bayley's or Griffiths, and then obviously you're quite right, in the older age group there is very little that you can use from a screening perspective other than some standardised questionnaires like the Conners or the CBRS. Have you looked at how the evidence stacks up?

Dianne 6:03
It's a great question. So think of the tracking cube as a process, not a particular tool. So in fact we've built the tracking cube to be tool agnostic so that if you prefer, for example, the ages and stages as a screener, that can be your tier three, if you prefer, a particular tool to assess intelligence over another. That can be your measure of cognition in Tier six. So we don't focus too much on exactly which test is being used. Think of the process of how we want to incorporate all of this different information. And the tracking cube is the digital system that stitches all that information together, regardless of which tool you use, because every practitioner we honour that, that practitioners have preferences and certain tools are more valid in certain regions than other tools. And we don't want to say you have to use a particular tool, especially because there's many tools that aren't valid in certain regions. Now we actually have an NHMRC study that is looking at comparing tiers three and four to tier six. So we have to do this with some structure in the sense. So we did choose the rapid neurodevelopmental assessment for our screener in Tier three and we chose the BASC as the parent and teacher report form in Tier four. Now we chose those tools for a reason. The R&D we chose because it does go from 0 to 17, things like the ages and stages. They're great, but they cut off at the age of six. And in the area that we were working, most of the kids were actually above the age of six. So the RNDA does address 0 to 17 year olds. It also gives us, rather than presence or absence, it gives us four grades of severity, typical, mild, moderate, severe. That's very helpful. The other thing the RDA is it's actually a structured observation of a child rather than a parent report. We want those parent reports, we absolutely want them, but they're Tier four. So the RDA was chosen as our structured observation of a child that worked as the rapid assessment and the BASC we chose. And again, Conners, CBCL, any psychosocial measure could be used. We chose the BASC because it also added domain of executive function and adaptive behaviour as a subscale. So between the BASC and the RNDA, we covered all ten brain domains that are implicated in FASD and subsequently all Neuro developmental disorders for that matter.

Brad 8:21
So I'm not familiar with the RNDA. It's not something that I've come across. I think you describe it as a 30 minute rapid assessment, is that correct? So just give me an idea about some of the, observations and assessments or tools that might be required in that because of course, the question we're all going to ask is, does it aid in efficiency of assessment and process or does it, as you've remarked earlier, bring about earlier intervention and support at that community level while they're waiting?

Dianne 8:50
Both excellent questions. So that NHMRC we were talking about is actually looking at how it compares. We're looking at the sensitivity and specificity of that tool compared to all sorts of comprehensive neurodevelopmental assessment tools. What we've found so far, very limited. We're working on making sure our samples are broad. So I don't want to let the cat out of the bag yet, but we are collecting samples to have a look at comparing how the R&D looks relative to other screening tools. And it's looking good, but we're working on publishing that data right now. And and I don't want to I don't want to jump the gun on that one just yet. But we absolutely are working on validating that within Australia. But the RNDA has been validated more internationally in other contexts. So we're confident that it's doing the job we want it to do. What it really does a great job of is identifying where there's a concern and identifying where there's a strength so that you can either build the child up where there's a concern or focus on that child's strengths to build that up as well. Because again, we also have a very strengths based approach.

Brad 9:52
So you talked a bit about it giving mild, moderate, severe. What was the other on sorry, typical, typical, typical mild moderate and severe. So of course, when we think about neurodevelopmental issues, we're not often thinking about severity. We're actually also thinking within that complexity space as to, well, what's the underlying cause here is there an anxiety driven response to this child's behaviour. Is it because they are on the autism spectrum or is it because of executive function challenges? And then there might be a level of impairment within that process. So I'm very interested how it captures neurotypical, mild, moderate and severe when you've got all of these aspects of a child's presentation that you're trying to get your handle around and measure. So how does it work in that space?

Dianne 10:35
It's it's structured and there's a manual. So for what we do is we train people to a standard and any non specialist can deliver, say non specialist again. But I'm going to just be cautious in how I say that. But I mean anyone, whether it's a community member, a teacher, a youth worker, a child safety officer, a nurse, a paediatrician, and in fact the pediatricians quite have enjoyed using it so far because it is just a structured observation. So it does guide you on that journey. The manual does give you a cut off in criteria for typical mild, moderate and severe. And yeah, so when you come and learn the RNDA, we trained you in in how to score it. But the truth is most people are surprised at how quick and dirty it is. It's straightforward and it's it's relatively easy to learn.

Brad 11:21
So it's a half hour assessment. So it involves some tools as well as part of the assessment or is it, some structured observation Just give me a description of the tool.

Dianne 11:31
Yeah. So, for example, gross motor in a six year old, you're going to watch the child walk up some steps and you're going to make sure they walk up one foot on each step without holding onto a handrail. So it's observing a child doing a task. And that task relates to the neurodevelopmental domain that you're looking at.

Brad 11:47
Okay. So it's very it is very similar to ask you that or elements of the Griffiths and but in a way that that probably narrows it and much faster. Okay. So I think one of the things that you noted is it started in that community, but you're now looking at it more broadly in centres like Gold Coast. So talk about how you've been able to transition from how it was designed initially to a sort of broader focus, looking at kids on waitlists.

Dianne 12:12
Yeah, So that's the tracking cube process. When we use the tracking cube in northwest Queensland, we had around 700 children go through the tracking cube process and we found that kids were four times more likely to be identified as having a neurodevelopmental concern. Now that created a lot of concern that we were going to flood the health care system, but we didn't. What happened was that the appropriateness of referrals went up and the number of referrals to pediatricians and allied health actually stayed the same. And so when Doug Shelton, who has been part of this from the very beginning, he actually said, look, if if this is working so well up there, we've got a bunch of kids on a waitlist in a specialist service down here on the Gold Coast, just even in paediatric outpatients. Excuse me, then we should be able to do tiers 1 to 4 on these kids who are sitting on the waitlist and see if we can re triage them or triage them differently or better It was an empirical question, so we were curious what we would do. So we took the 200 kids on the waitlist and we ran them through tiers 1 to 4. And I think right now we're up to about 84. Child 84. So the plan is to get all the way to the 200 and then to look at the difference.

Brad 13:25
And what have you seen so far in terms of how useful that is?

Dianne 13:30
Yeah, we've noticed that. Now I don't have the stats right in front of me. I don't have them memorised. But but we absolutely have seen that the triage has improved. So I think about one quarter of the kids are shifting categories and they're being moved off the waitlist referred on to other services. We're noticing that the triage process is actually helping to gather more information about the child so that the families don't have to repeat their story again, because we're getting the information in from the schools, we're getting the information in from private reports that it's part of the triage process is collecting all of that information.

Brad 14:09
And who takes that information? Who's trained or not trained. It may not require training for that element to obtain that.

Dianne 14:17
S this is where the training for the tracking cube comes in. But the tracking cube structures, the developmental history in a in a very structured way, you do your rapid onset that's to your to you do your rapid assessment in tier three and you have the questionnaires that are being collated as part of Tier four. And then the digital system takes that information and autopipes it through to a report. And that report is what's handed over to the paediatrician on their first appointment to have a look at and decide. Now at the Gold Coast Hospital, they're actually using that report to help triage the families more effectively.

Brad 14:52
Sounds really exciting. There are obviously available currently quite a few commercial products that do, you know, online questionnaires or systems that you can use to design a questionnaire yourself that goes to families so they can fill in that to an element of that too? How would this differ from what you could set up yourself? Can you talk to that?

Dianne 15:14
Yeah. And again, if you want to set it up yourself, I would absolutely encourage you to do so. And I guess that is the question. Do we need to reinvent the wheel and set everything up ourselves? The point of the tracking cube was that we did co-design it with the community and so the local health practitioner said, This is the information we want to gather. The specialist looked at that information and said, This is the information we want to receive. And through the process of the five years of co-design, we actually weaved all that together to try to just summarise it in a very structured and predictable way.

Brad 15:48
And I would agree it sounds exciting. That you've done that co-design and it sounds like you've thought about that process and in addition, it sounds like you're not just sending out a link to the families, you're actually helping guide them through that process of that information collection. Would that be correct as part of it?

Dianne 16:03
Yes. It does require somebody to to collect the history. So again, up in in primary care in Mount Isa, we had Aboriginal health workers collecting the family history with the families. They were the people who knew the families best. They did a wonderful job in fact, as a clinical psychologist, I thought I did a pretty good job of collecting histories on families and these Aboriginal health workers would put me to shame because they know the families and the families trusted them and they were able to ask questions in a culturally appropriate manner. And and so they got the best information out of those families to help them on their care journey, much more than I could have as a psychologist just coming in to work with the family.

Brad 16:42
So it sounds like the process both helps inform the community and the family to start work straightaway. But it also provides a wealth of information for when that assessment comes around. Has it resulted in less time for an assessment, or does that complexity of assessment still require the time? Because you're looking at this information and the time you're with the child, What's what's your thought about that?

Dianne 17:03
I think that's a great empirical question. I think we're trying to to to answer that empirical question. I think what it does is it triages families effectively so that the right children get through to the comprehensive assessment. I think what was happening in some areas is that the moment you get a child who has a neurodevelopmental concern, people who aren't used to seeing neurodevelopmental concerns or GP's or in remote communities, they sometimes they're just thinking, Oh, I don't have the time to deal with the complexity of this case. And they certainly don't get the billable hours for Medicare to deal with that complex case. So I think what the tracking cube does is it allows other people to contribute to that care journey so that other people can help collect that information. And the information can be piped through the system and presented in a very structured and predictable way, allowing the people who do want to look at the information, it's information is all there for them. So I think it does speed up the triage process. It does speed up and make sure that the right children get through to the comprehensive assessment. And one of the outcomes, as I mentioned before, I think, is that the appropriateness of cases going to pediatricians improved. So it meant rather than all kids getting sent to pediatricians where we have GP's, you know, looking at a child thinking, oh, they've got neurodevelopmental concern, I'll send that up to the paediatrician. That sometimes happens. But in fact GP's, when they use the tracking cube, said Oh, we can actually handle that here locally and they didn't send every child up to the paediatrician, they only sent the children who most needed it up to the paediatrician.

Brad 18:37
So that's great and I think it obviously gives them that structure to be confident that they're making the right decision and put some structure around that, that approach. So where do you see the tool going now? You obviously you mentioned the NHMRC funding, you've talked about it being rolled in Gold Coast. Do you see it as being a tool that could be used in other jurisdictions? And is there a cost to that, to that access?

Dianne 19:01
Yeah, we have an NHMRC project that is just kicking off right now, actually, that is going to take the tracking cube and look at how we can roll it out in seven new communities across the country. And and that is the question what of this needs to stay the same and what if this needs to be localised Marjad. will say, you know, what is the skeleton structure here? What's the muscles on the skeleton. So the skeleton structure being, you know, the six tiers, can they stay the same? And then how do we localize this so that different communities can actually adopt this in a way that works for them? But the structure is still there, so provide some structured flexibilities to other primary care practices. So we're going to be doing that over the next five years. We'll be rolling it out across these communities and doing a stepped wedge, randomised controlled trial to explore exactly that question.

Brad 19:51
That sounds fascinating. So thank you very much, Dianne. It's been really great to chat to you and to hear about the project and I'll look forward to seeing a little more of it over the next couple of years and perhaps we could even roll out a trial in our own service which would be pretty exciting. Sounds great. Thanks a lot.