Transcript
WEBVTT
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Medical registries are transforming health care, silently working behind the scenes to track outcomes, refine surgical technique and influence policy.
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In orthopaedics, registries like the Australian Orthopaedic Association National Joint Replacement Registry, have revolutionised the way we understand joint replacement surgeries, improving patient care by identifying trends, successes and areas for improvement.
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But how exactly do these registries work?
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What impact have they had on orthopaedic practice, particularly in shoulder and joint arthroplasty?
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And with the rise of AI and predictive analytics, what does the future hold for these powerful databases?
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Today we're diving deep into the world of registries, exploring their origins, challenges and future developments.
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Whether you're a medical student, general practitioner, or surgeon, this episode will shed light on a critical yet often overlooked aspect of modern medicine.
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Good day and welcome to Aussie MedEd.
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The Aussie style Medical podcast a pragmatic and relaxed medical podcast designed for medical students and general practitioners where we explore relevant and practical medical topics with expert specialists.
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Hosted by myself, Gavin Nimon, an orthopaedic surgeon, this podcast provides insightful discussions to enhance your clinical knowledge without unnecessary jargon.
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I'd like to start the podcast by acknowledging the Kaurna people as the traditional custodians of the land on which this podcast is produced.
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I'd like to pay my respects to the elders, both past, present, and emerging, and recognizing their ongoing connection to land, waters, and culture.
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this podcast is for educational purposes only and does not constitute medical advice.
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Always refer to clinical guidelines and consult a qualified healthcare professional before making medical decisions Joining me is Professor Richard Page, a renowned orthopaedic shoulder and upper limb surgeon based in Geelong, Victoria.
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He's the Foundation Chair of Orthopaedics at Deakin University, Director of Orthopaedic Research at Barwon Health, and has played a significant role in the AOA National Joint Replacement Registry.
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With over 150 publications, leadership roles in multiple orthopaedic research organizations and extensive contributions to arthroplasty registries, Richard is the perfect guide to help us navigate this fascinating topic Well, it gives me great pleasure to introduce Professor Richard Page.
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Richard's a professor in orthopaedics at Deakin University.
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He's the president of the Shoulder and Elbow Society.
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And his accolades would need another podcast just to read out.
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But most importantly, I would describe him as one of the most pleasant and humble surgeons I know.
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Richard, it's great to have you on board on Aussie Med Ed and talk about this really important topic.
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Thanks, Gavin.
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It's a pleasure to be here and very generous introduction.
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Appreciate it.
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No worries.
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I would say that you do have a bit of interest in this, in that you are actually the past deputy director to the Australian Orthopedic Association National Joint Replacement Registry, and also on the committee for the Victorian Orthopedic Trauma Outcome Registry.
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So you've got a bit of experience in registries and talking about the importance of them.
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Perhaps we could start off by asking, what's the primary purpose of a registry?
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For
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yeah, good question.
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I guess that's the fundamental question is the why, because there's a lot of.
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Time, effort, energy involved in running registries, and there's obviously cost as well.
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But the principle point of having them and why we have developed them and thrown our weight into them in Australia is for quality improvement.
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So at the end of the day, to collect large national population data sets that can improve patient outcomes, that's what it's all about.
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Giving people , that need the information, the right information to make the right decisions, to do the right thing by patients.
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And that covers a whole range of registries.
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Obviously our area of interest is orthopedics, in particular joint replacements, but there's a range of registries both in Australia and globally that have been shown to be, very effective and in fact very cost effective.
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Perhaps you could actually go through the type of registries that you are aware of,?
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Prof Richard Page: Yeah.
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Okay.
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Let's, maybe if I start with the ones that I'm involved in and I can talk,'cause obviously that's an outline of what I know best, but , I'm certainly aware of others as you've suggested.
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So the big one for us as orthopedic surgeons nationally in Australia and jewel in the crown as it's often referred to as the National Joint Replacement Registry.
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And that's been running for over 25 years now and has had a major impact on both our practice as, surgeons and , our measured outcomes in terms of revision rates.
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So that's probably the big one.
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There are a number of other registries you alluded to, the Trauma Outcome Registry, which is a sentinel registry looking at orthopedic trauma outcomes in Victoria.
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And there's been some smaller regional ones.
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We've got a regional joint replacement registry in Geelong, which has also been running for over 25 years now.
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It collects similar but some different data.
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So these are all complimentary.
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They're not competing.
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They sit well together 'cause they have slightly different flavors or look in some instances different attributes.
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And then we've got an even smaller but soft tissue registry that looks at the outcomes of in my and your Gavin area of interest around the shoulder and upper limb.
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Looks at particular things like rotator cuff problems, shoulder instability, other painful shoulder conditions like frozen shoulder.
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No one registry can do everything.
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And different registries have a slightly different favor.
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So that's probably the, orthopedic ones that are well known to me and us.
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But then there's the really other important ones.
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Things are like other device registries in the country that have picked up problematic things like breast implants cancer registries.
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Both soft tissue, musculoskeletal, and they're really important, particularly when you're looking at rare and uncommon events where no one surgeon or no one center may have enough data to be able to provide sensible interpretation of outcomes.
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So these are the sort of things that we see.
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And then there's respiratory ones, there's renal disease ones, there's urology ones, there's general surgical ones.
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So they have grown hugely.
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And this mirrors really what's happening globally so Australia's not the only country that's doing it.
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It's all around the world.
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Yeah, look, it is.
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And obviously you need to have good infrastructure for them to work.
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You need to have some support for data collection, ideally, government, local or national government support, because there is a cost in running these.
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It has actually, it's a, bit of a classic line now is it's, it's not can we afford to run a registry?
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But if you look at our national joint replacement registry and the significant savings over 20 years, the question is, can you afford not to?
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cause it's in the order of about$1.2 billion that have been saved from the Australian health budget by reducing outlier surgery or reducing revision surgery.
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So it's got benefits for both the surgeon, the patient, and the government who are funding the implants.
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Are they the main benefits at all?
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Prof Richard Page: Obviously there, The patient benefit's huge.
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And then there's, the social benefit.
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But there are.
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Shall we say academic and collaboration benefits?
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And, this is good for growing both expertise also, but for building, relationships, sharing information across different domains.
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If you look at our national registry, that's led to a range of collaborations with the Nordic countries, which are, Sweden for example, had some of the earliest registries and they've got a very well structured registry ethos America, other European countries, great Britain the National Registry in New Zealand, New Zealand , we're early adopters of a national joint registry.
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So there's interpersonal collaboration, there's academic collaboration.
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And what that does is, and you've gotta remember that registries are not steady.
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They evolve and change over time.
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That sharing of information refines the processes, improves the analysis, gives us better understanding of both the strengths but also the weaknesses of registries, where the gaps might be.
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So has improved how registries operate and also made them more efficient?
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And so they actually help contribute to improving patient outcome overall as well.
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Yeah, they do.
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And again, if you stick to the joint replacement registries then, and particularly our national registry, both through the action of collecting data, it's, a well known phenomena that once you start measuring something, particularly in medicine, you automatically start improving its outcomes 'cause people become more aware of what they're doing and they start using that information.
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To measure and test and refine their practice.
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So that's the part of the process of how it happens by the promoting the findings.
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And it, so that's, it's not just clearly, it's not just a collective data, that's not the end point.
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It's what you do with it.
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This what we think of as this audit cycle.
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You collect data, you measure, you then have to report and feedback, fi findings or changes and then try and improve.
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And it by that circle of providing information, firstly to surgeons where, we have a better understanding of what's going well and perhaps what's not going well or having such a good outcome.
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And at the end of the day, it's about reducing either unnecessary or revision surgery for patients and re reducing patient morbidity, improving the quality of care.
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How do you think they influence the practice?
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Apart from the the surgeons being aware of their actual outcomes what other ways can help influence practice?
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Yeah.
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First of all, as we get information or huge amounts of information, in fact about both types of surgeries that, that and how they're performing for different diagnoses around, arthritic conditions and in our domain around shoulder conditions.
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So what's working well, what the risks are, who the at risk patients might be.
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Obviously of great interest is whether we can modify any of those factors.
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Whether it's either the technical side of surgery or more particularly in patient selection, whether certain things do better in certain patient cohorts than others.
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And really importantly is what we call early signal detection.
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So early detection of when there might be a problem with a particular operation or a particular implant.
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So without this early monitoring and this early me measurement and then early assessment of the data, it could take five or 10 years , before you realize that a particular component or a particular type of operation is not doing so well.
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So this is a way of having some early feedback about and signals about something that, that might require close monitoring
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And I presume it's also helped by the fact that your pooling all the numbers together
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absolutely it's a sheer weight of numbers.
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You or I can only do so much in a, a week, a month and a year, and we may not be doing enough to actually uncover an area of our own practice or an area of a particular prosthesis, a particular implant that's actually not going so well.
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It's got complications, particularly for newer implants.
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And just by measuring that, we are also able to determine which implants, and grade them according to how well they've performed and what their risk of revision is over time, whether that be one to two years, five to 10 years.
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Now we're getting into 10, 15, and 15 and 20 year data sets for the, shall we say, the more classic style implants that have been around that long.
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Clearly not all implants that we're using have been around that long.
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And that's one of the, shall we say weaknesses, that there is things that come and go, but that early detection of or early information about how they're going, gives us either the confidence to keep going or makes us have a closer look.
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And sometimes we just have to earmark and say, we need to have a close look at this next year when we've got more numbers.
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As you said, as the numbers game,
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So obviously you've mentioned the importance of having numbers.
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For what challenges are there in maintaining a registry and actually setting up a registry?
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I mean, it's not for faint hearted to start up.
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You have to have funding.
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You have to be able to pay for the staff.
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'cause it is even with current digital data collection, there's still staff members, statisticians, data managers who need to make sure the data's accurate we still input some of our data, in fact, a lot of our data manually.
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Because it works.
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'cause one of the challenges is particularly in a country like Australia, we're like six different countries and two different territories.
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Each jurisdiction has its own IT infrastructure uses different software.
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So getting those to talk to each other is very difficult.
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Having said that, in Australia,'cause we're an island essentially particularly in orthopedics, it's very, difficult for a patient to have their first operation here and to have a subsequent operation elsewhere.
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Now, I wouldn't say it never happens, but it rarely happens.
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So if people are having knee follow up surgery, they generally have it at home or in Australia and because of the way the funding system works, it makes it much easier and more attractive for them.
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Therefore, we know what the denominator is.
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So if somebody has a revision operation, we are able to detect that.
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But going to the challenges, that requires a mechanism to tap in and detect that's happened.
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'cause , that clearly could happen across states and that's a bit like sometimes happening in a different neighboring country.
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But you have to have mechanisms therefore to data check and to do data linkage to check if, this patient that we've identified has had this operation and hello, they've.
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Gone to another state, two or three years later, they've had it operated on again.
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So you've gotta have a mechanism to be able to link the data sets and check that , on a regular basis.
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The other strengths we have are that you can do data linkages with different data sets like the pharmaceutical prescribing.
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So you can look at what their disease patterns are.
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I wouldn't say these things are straightforward, they're quite complicated, but they can be done about what other operations they've had or what other medical treatment they have.
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Through the MBS schedule, it's done in a way, in the background de-identified, so the privacy is preserved, but you're able to link certain patient identifiers.
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So you know a bit more about those patients.
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The weakness or the limitation is that you can't say things about outcomes or patient profiles or treatments that you're not measuring, so there what we call the confounders and you have confounders, which are known otherwise.
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Things we know about patients, like we collect data about their age, their BMI, for example, their general health status, which is their ASA.
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So that gives us some indication of how well or not they're, but we can't, for example necessarily know if they've had certain, surgery or other treatment on that joint or that particular body part before the registry started.
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So there's stuff that's happened in the background the unknown confounders that we can't adjust for.
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But on the whole, what we know in Australia with the Australian industry, we know with a high level of accuracy'cause our data the integrity is high.
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In other words, their data accuracy is high and the pickup rate is, essentially 99 plus percent.
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There's very little data we miss out.
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So we've got great confidence in the things that we can see.
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Interpret from our data set.
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And that gives us a huge strength.
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There's only a few other countries in the world that are able to do that with a high level of accuracy
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and this is all done on the background of de-identified data.
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So for the person listening.
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As a lay person, there's no way that we know who that person is or where they live or anything.
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We just know the sort of scores they've been given.
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We can make some assumptions about their health and their , body mass index and things like that.
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And privacy protection, paramount importance.
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And it's to have the, so shall we say, the confidence in that data being accurate, but at the same time, no one individual can be identified.
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, no one surgeon could be identified.
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And this is got an overarching protection as a quality and national quality.
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Assurance activity, which has got approval under the federal or parliament.
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In fact, it's enacted by Parliament and under the jurisdiction of the Federal Minister for Health.
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Those features are protected.
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And so, somebody could come in and say, I want that data, but they can't have it.
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Perhaps you can go through the history of the Australian Orthopedic National Joint Replacement Registry and the people that are involved in
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yeah.
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Look, it's, it the great thing about the registry, the great strength, it was set up by surgeons, by the Australian Orthopedic Association and some very, shall I say the forefathers, but they're mostly still around, but with who had great insight and a great vision to what could happen.
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And this was whilst observing what had already been started in other countries, as I said, particularly Sweden, was that really the first one, the first registry really got known, the Swedish Hip Registry got known in this space.
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So obviously there was a period of looking at how they did it and then trying to work out how that would work in our system.
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Clearly no two cultures and health systems are quite the same, so you have to be able to adapt it for that.
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But there was a group of people who got together and, started setting this up and one of the early people involved with David Davidson.
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And then it was led for a long time by Stephen Graves.
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And there were, other well-known surgeons, highly respected surgeon involved in it.
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Richard De Steiger was the next person in, and he'd been involved for a very long time from Melbourne.
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Won't list everybody, but there, there's an range of people and there's been a both a maturity in the registry.
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It's certainly bigger now.
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We've got about something in the order of 2.2 or it'll be soon getting up to 2.5 million joints, , in the registry.
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So it's a huge data set and there's a lot of data management involved.
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I clearly, the management of that has got more complex.
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So the, that's the sort of history of how it's started and it, when it started, it was very basic.
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It really was just measuring what was done, what was used, what the diagnosis was, and then almost as if figuring out the outcome later.
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But they were able to do that by matching surgical activity across each of the individual states.
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If you go to our area of practice, Gavin, there were a couple of us, a few of us, I was one of the pesky young surgeons who knew Steven.
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And at two or three meetings I kept on saying to him, we've gotta add, because it was, first of all, it was hip and knee.
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Gotta add shoulders to this, shoulders are a big joint, there's gonna be important, we should be.
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It's yeah, yeah, it's not very common.
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I dunno, there would be enough data, et cetera, et cetera.
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So it was a bit of resistance.
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And also there we required some additional funding.
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So what some of us were doing was taking the data collection sheets for knee replacements.
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And I was just crossing that out and writing shoulder and putting all the shoulder data on it, which they didn't know what to do.
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'cause the database wasn't set up for that.
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But to the team's credit, they didn't throw them out.
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They just kept them all in a pile and there was a few of your colleagues in South Australia were doing the same.
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And we'd talk at meetings and sort the word spread.
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It was just like.
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Look just keep doing it.
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They'll have to, they'll get it, they'll get that.
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We're interested in this as shoulder surgeons.
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And anyway, it grew.
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Long story short, that was, I started doing that in about 2004.
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In fact, the first joint entry was 14th of April, 2004.
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But that grew and eventually it was like, you know what?
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There's something in this.
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'cause there wasn't really much idea of how much shoulder replacements were done.
00:19:27.089 --> 00:19:31.883
But in that first year that there was approval that we included it, it wasn't all the states either.
00:19:31.883 --> 00:19:41.833
We couldn't include all states at the same time, because you have to get, approval from both the hospitals, the government and ethics committees to do it in every individual hospital.
00:19:41.833 --> 00:19:43.873
So you can imagine that's very time consuming.
00:19:44.373 --> 00:19:52.782
So very quickly it became apparent that we were doing, a measurable amount of shoulder replacement surgery, nowhere near as much as hip and knee, but that grew.
00:19:52.843 --> 00:19:56.903
And in the first incomplete year was about a thousand.
00:19:56.962 --> 00:20:00.083
And then soon it was, clearly close to 2000.
00:20:00.682 --> 00:20:04.792
Last year we did nearly 12,000 shoulder replacements nationally.
00:20:05.363 --> 00:20:24.143
So, it has been the fastest growing joint replacement, not just in Australia but globally, which probably says two things, that it was under serviced and this happened to knee replacements if you go back a couple of decades, there was a large unmet need, and also I think in the general practice setting.
00:20:24.143 --> 00:20:27.532
So going to, GP colleagues who tune into this Gavin.
00:20:28.173 --> 00:20:31.093
There was this kind of perception that, shoulders, they're no good.
00:20:31.593 --> 00:20:32.313
They don't work.
00:20:32.813 --> 00:20:37.343
If you go back 20 years before that was the same ethos around knee replacements.
00:20:37.343 --> 00:20:48.353
Now, yes, there are some that are not brilliant, but it certainly with shoulders perform in terms of revision rates and improvement in patient function and pain relief.
00:20:48.833 --> 00:20:49.792
Very close to hips.
00:20:49.792 --> 00:20:56.573
The satisfaction level for patients, if you look at the shoulder registry data, is not, is very close to hips.
00:20:56.573 --> 00:21:07.012
So I think from an efficacy point of view and a patient satisfaction point of view, it rates very highly and our GP colleagues are really starting to see that now.
00:21:07.042 --> 00:21:09.448
'cause I see patients there's a lot more shoulders being done.
00:21:09.647 --> 00:21:12.137
So anyway, that's a bit of the history and a bit of the, now we're up to.
00:21:12.468 --> 00:21:14.752
And how has the data evolved over those years too?
00:21:14.758 --> 00:21:14.913
You
00:21:14.913 --> 00:21:26.218
It is an interesting question when I first started as a young surgeon, I, had this idea that you have this, like for most research or studies you do, you have this really well defined set of data that you're gonna collect.
00:21:26.367 --> 00:21:29.968
And it's quite rigid and you can't change it because you don't want to muck it up.
00:21:29.968 --> 00:21:32.718
And you, needs to be able to compare what you're doing to later.
00:21:32.867 --> 00:21:33.827
So it's gotta be the same.
00:21:34.367 --> 00:21:36.317
Certainly when we started, that's what it was like.
00:21:36.347 --> 00:21:41.597
But registries are like a slowly evolving organism in that it has changed a lot over time.
00:21:41.897 --> 00:21:51.018
'cause you realize like some of the implants, for example, that we were using are no longer available, have been shown not to do so well or have been improved on.
00:21:51.018 --> 00:21:51.798
So they're different.
00:21:51.798 --> 00:21:52.278
They changed.
00:21:52.637 --> 00:21:55.698
So clearly that's data that you're not gonna collect anymore.
00:21:55.698 --> 00:22:08.290
'cause it's not happening, it's not being done Similarly you realize that there are additional data points, additional features around the, either the operation or the patient that have changed.
00:22:08.621 --> 00:22:12.671
And a good example is the advent or the introduction of some new technology.
00:22:13.330 --> 00:22:15.240
And, you don't want to miss that.
00:22:15.270 --> 00:22:17.941
You, we want to be able to evaluate and measure that.