We're thrilled to welcome Kathryn van Diemen, a data aficionado turned genetic counsellor, who shares her captivating journey and current role at TrackGene. From discovering her love for data and genetics to exploring rugby fields and engaging in playful tussles with her Cockerspaniel, Pepper, Kathryn lets us in on the world behind the white coat!
Tune in as we discuss the seismic shifts in genetic counselling education, with much more comprehensive courses now available compared to our and Kathryn's student days. You'll hear all about the significant contributions of Alison McEwan in introducing the data management aspect to UTS students, and the human elements in effecting new program implementations. Ever wondered why we tend to place the man on the left when designing family trees? We're discussing it all, referencing a paper by Jehannine Austin that challenges such conventions and patriarchy's implications in understanding gender.
Lastly, Kathryn offers insights into TrackGene's software evolution, responding to a society that's forever changing. Discover how genetic counsellors' patient-centered approach has become a key driving force for these software changes, from redefining fields to creating relationships among gender-diverse members. So, block out the noise, plug in your earbuds, and get ready for an enlightening conversation. You'll walk away with a fresh perspective on the intertwining worlds of data and genetics. So, are you ready to be inspired?
We're thrilled to welcome Kathryn van Diemen, a data aficionado turned genetic counsellor, who shares her captivating journey and current role at TrackGene. From discovering her love for data and genetics to exploring rugby fields and engaging in playful tussles with her Cockerspaniel, Pepper, Kathryn lets us in on the world behind the white coat!
Tune in as we discuss the seismic shifts in genetic counselling education, with much more comprehensive courses now available compared to our and Kathryn's student days. You'll hear all about the significant contributions of Alison McEwan in introducing the data management aspect to UTS students, and the human elements in effecting new program implementations. Ever wondered why we tend to place the man on the left when designing family trees? We're discussing it all, referencing a paper by Jehannine Austin that challenges such conventions and patriarchy's implications in understanding gender.
Lastly, Kathryn offers insights into TrackGene's software evolution, responding to a society that's forever changing. Discover how genetic counsellors' patient-centered approach has become a key driving force for these software changes, from redefining fields to creating relationships among gender-diverse members. So, block out the noise, plug in your earbuds, and get ready for an enlightening conversation. You'll walk away with a fresh perspective on the intertwining worlds of data and genetics. So, are you ready to be inspired?
Hi and welcome to the De Fine Genetics. I'm your host, matt Burgess, and on today's show I have Catherine Van Demon. Catherine and I work together at Trackgene. At Trackgene, Kathryn is the Chief Operating Officer, clinical Data Specialist and Support and Training Lead, and I hope over the next half an hour or so we can have a good chat about our software and other genetic counselling related things. Okay, hello, Kathryn, and welcome to the podcast.
Kathryn van Diemen:Thank you very much, matt. It's a pleasure to be here. How's it going? Very good. We're in Adelaide, where the rain has just started. We did have a taste of springtime, but it looks like we're still having a little bit of winter here. So yeah, but looking forward to the summer ahead.
Matt Burgess:Oh good, now the listeners can't see, but you've got a beautiful background on Zoom. Now, is that a winery in that place? It is a winery.
Kathryn van Diemen:It is a winery. It actually belongs to my cousin. So this is I'll do a little plug Anderson Hill in Lenswood. But I live in the inner north in Adelaide, but I'm very privileged to have the Barossa Valley half an hour from my home, also at the Adelaide Hills wine region is also half an hour away. So we live in a beautiful little part of Adelaide and Anderson Hill is one of my favourite places to go. As you can see from my picture for the listeners, the view over the Adelaide Hills is spectacular and lovely atmosphere, so it's one of my very favourite places to be.
Matt Burgess:Oh beautiful. I can't wait to come and visit, Like I'm sure we'll get lots of track gene work done, but there may be a few glasses slash bottles of wine that will be opened.
Kathryn van Diemen:Well, we may just have to pick a fun venue for doing our track gene work.
Matt Burgess:Excellent. Now, as I've just suggested, we work together at Track Gene and when I first started, you were very kind and friendly and we had a chat and we caught up and we sort of spoke about different things, and I remember you said that you identified as a data nerd and I loved it. I thought it was hilarious and I just was wondering if you can tell me more about that.
Kathryn van Diemen:Yeah, it's something that I've had to deal with along the way. So I started out doing a graduate diploma in genetic counselling. So I certainly have that passion as well. But as I've worked as a data, I started out as a data entry person and then became a data manager and then since working for Track Gene for a really long time now and just realised that the data side of things was where my real skill set lay and just also where it's another one of my passions as well as genetics. So I just love seeing how the data can hang together.
Kathryn van Diemen:Getting when you hear people and our users and our client base ask questions about this is what I want to be able to get out of Track Gene. I'm like, oh, I'm sure that we can get that and put together that search and also, I guess, separate from Track Gene. In my other life I'm involved heavily in a rugby club, so that's life outside of Track Gene for me. But I even do the data side of things for the rugby club, keeping stats and doing how many games the kids have played and all of those sorts of things. So the data side of things. It rings very true to me, I think, and it may be why I never practised as a genetic counsellor, because I just love you. Know you can always get to the bottom of it with the data and it's you can explain it. Everything has a reason, which may be why the data was easier for me than people. But, yes, certainly we like the people side of things as well.
Matt Burgess:It's funny because I think when I started in genetics, like I thought that it was going to be very black and white. You know genetics as a science and you know it's black and white. There are answers. You just look things up and you know the more that I've been working in genetics, like that's just not true. Like there is gray everywhere. There's a lot Absolutely.
Kathryn van Diemen:Absolutely yeah. So it's nice to have that blend of, yeah, the genetics and the data, and I've certainly found my niche in the world, I think, and this is where I want to be for sure.
Matt Burgess:Oh good. And so at the start, like how did you get into genetic counselling? Was that something that you sort of had always thought about when you were at high school, or was it something that you got into after you know, like your undergrad, or yes.
Kathryn van Diemen:So at high school I did biology was my favourite subject and you know, when we had to do a genetics project, that was certainly fascinating to me and I loved it. So when I went to university I did a general Bachelor of Science and majored in genetics, and it was one of those things that in high school they gave you. You know, they were just trying to say which screen do you want to go down? And it literally said if you do a major in genetics, these are the things that you might be able to do, and so it also had you know, laboratory staff and different things that at least a genetic counselling on that, on that flyer. And I had never heard of genetic counselling and I'm like, oh, that sounds interesting though, and then obviously did a bunch of research and you know how do I study that, what is this? And just thought it was absolutely fascinating and perfect for what I wanted to do.
Kathryn van Diemen:So I have often wondered what would have happened if that flyer didn't say you know genetic counselling on that list which we're talking, you know, a good 25 years ago now. So it wasn't something that was that well known. So if it hadn't been on that list, I don't know where I'd be today, but yeah, very grateful that it was so. After my undergrad I went on to do the graduate diploma in genetic counseling. Oh, wow.
Matt Burgess:That sounds like you know the career advisors at school. You know they had those lists and like a lot of it. For me it was kind of irrelevant or like it was just not interesting, but it sounds like it really worked. That's really cool.
Kathryn van Diemen:It did, it did. No, we're very lucky.
Matt Burgess:And then so when you were in your genetic counseling course, like did you kind of think that you would go into clinical work? Or had your sort of love of data already sort of started back then, or no, I didn't realise the data back then.
Kathryn van Diemen:It was certainly always my plan to become a genetic counsellor and so, yeah, that was my initial job was on. My first job, I guess once I graduated, was a data entry officer in the familial cancer unit in Adelaide. So, yeah, the classic trying to get a job in the industry just to start at the bottom and get that experience. And that pretty quickly became the data manager after that and I, certainly while I was working as a data manager, applied for a few jobs in genetic counselling but, yeah, wasn't successful and I think it was one of the the boss of the familial cancer unit at the time. Their philosophy was more we could teach new staff the genetics.
Kathryn van Diemen:The genetic side was really easy to teach, but the counselling side they wanted people more from that background. So at that time, certainly in South Australia, the jobs were going to former nurses, former social workers who had that interaction with people you know that richness of the counselling background. And then you know we would teach them the genetics, whereas I came very much from the science background and was trying to learn the people side of things and so wasn't successful in getting those genetic counselling jobs but was, you know, happy doing what I was doing with the data management. That was still, you know, a very rich role for me and it was probably around that time that I did start doing the extra work.
Kathryn van Diemen:So what was Kintrack at the time? And now you know, we've evolved into Tractgene but, yeah, started doing some extra work with them and I got to travel and I was training people in using the program and so, yeah, that's probably where the data side started coming in, where, you know, I was doing a job that I loved in the data management. I was also getting to kind of travel the world and teach people how to do this and, yeah, things kind of evolved from there.
Matt Burgess:Wow, it is interesting because we sort of I think roughly the same age and sort of did genetic counselling, sort of the same era, and back then it just was so hard to get a job Like I remember thinking I would take any job anywhere just to get my job 100%. Like it was something like Australia was producing, like I don't know, 30 or 40 genetic counsellors a year and it definitely were not 30 or 40 new genetic counselling jobs a year.
Kathryn van Diemen:There was one or two, I think. Yeah, I do remember those, certainly do remember those times, but that's been. One of the wonderful things is to see the evolution of the industry as well. And now in there, we started having training, genetic counselling positions, and by the time they started popping up, I was well entrenched in what I was doing. So, yeah, didn't want to come back, but it's been, yeah, fantastic to see that. Yeah, though, there are those training positions. So, you know, for someone following my path, coming from that science background and things, now is, I'm hoping that it's much easier and there's, yeah, certainly a whole lot more opportunities, which is fantastic.
Matt Burgess:Yeah, I mean, maybe it's not as relevant now because I think that you know the tide has changed, like there are definitely more jobs out there for genetic counsellors. It's kind of like we don't have enough genetic counsellors for the workforce. But you know, one of the worries I think in doing genetic counselling at university is that you know it's such a niche field and it's so kind of specific. But do you think or like how, because you're not working as a genetic counsellor now, how did your course that you did your you know, your graduate diploma of genetic counselling lead you into or like, equip you with the skills that you needed for your current role?
Kathryn van Diemen:I think, yeah, it certainly. I mean I've got to where I am, so I guess it's certainly given me some of those skills. I like to think that a lot of what I do in my Trak gene role is the change management side of things and setting people up to change their day to day practices and things. So certainly the counselling and those skills that I earned I don't think they're going to waste by any means. It's one of the things my mum has often said that she goes oh, catherine, you wasted your graduate diploma.
Matt Burgess:You've never worked.
Kathryn van Diemen:I know I've never worked as a genetic counsellor, but then I'm like no, no, mum, I use those skills every day, so I guess there's certainly a counselling element to the role that I do now. So, yeah, my graduate diploma did set me up for that. I'm not sure that, for me, my course set me up for obviously I never was able to get a job as a genetic counsellor, but that's again been great to see. The evolution of the courses that are available now is, I think, that they are much better than the standard that they were when we were doing it, or certainly from my perspective, and yeah it's. I think the students are coming out these days a whole lot better equipped to go straight into genetic counselling roles, which is fantastic, and the work that Alison McEwan and various others have been doing is fantastic.
Matt Burgess:So, yeah, it's been great to see that, yes, I had Alison as a guest on a previous episode, so fantastic.
Kathryn van Diemen:Yes, absolutely. We've been lucky to actually work with Alison from a track gene perspective as well, where we give the our UTS students a little intro into the data side of things as well, just as one of the things they do during O-Wake just to prep them. This is one of the things that you need to be aware of. Yeah, in genetic counselling is the data management and that side of things for genetic counsellors. So, yeah, that's been really great to be involved in that way.
Matt Burgess:I think you're right. Like you know, like I, like you did a one year or it was a full time graduate diploma and now the course has sort of evolved to a two years masters and the students that are coming out are very well trained and you know like they're way better than what we were.
Matt Burgess:It's kind of funny, because you know genetics has evolved at the same time, though, and it's like we can't fit everything into the course, like you can't come out knowing, and I mean I guess maybe that's like everything, like you can't sort of know everything, but hopefully it kind of sets you up so then you can sort of take that knowledge forward. But you mentioned change management, and you know it's kind of like this buzzword or this term that I've heard people talk about, like I think I know what it means, but like from your point of view, like what do you mean by it? Or like what did you mean when you said it? Like can you tell me a bit about that?
Kathryn van Diemen:Yeah, for my role. What we do is, you know, when new sites take on trap gene, my job is to obviously come in see what they're using in, initially for data management, and then, you know, take them from using a system and that usually they're very comfortable with, they've been using for a while, and then change that and get them to start start using track gene. And that's really hard, it's changes hard and I often have to remind myself. You know, when you know Microsoft Word do an update and you know they change a few things and you don't click in the same place for doing what you've been doing for the last 10 years. It's really hard and it's really annoying and it's frustrating. And so I have that experience as an end user of other programs.
Kathryn van Diemen:When things change, and you know you have to remind yourself of that that even I go in and I'm presenting them with what I think is obviously a wonderful program because that's my job, but it's still it's very different for them and it's hard.
Kathryn van Diemen:And so you know you're coaching people through that change and just encouraging them to see things in a different light. And what if we try it this way and all of that side. So yeah, it is, you know, managing people through what can be a massive change when you know they might have a big history of doing things a particular way and you're asking them to change that. It can be, yeah, it can be really tricky, but yeah, that's also the rewarding side of things is, you know when you leave, when we used to do training on site that's obviously changed a little bit in the last few years but you know when you used to leave a site and everyone's going, oh yeah, this is great, and you know you've got them to that point where they can, you know, see the bigger picture on what we've tried to achieve for them. So you know we do love that side as well.
Matt Burgess:Well, I'm a bit embarrassed to say this, but I didn't really think about the human side. I mean, how you just explained, it makes perfect sense and you know, I think that we all have, you know, get stuck in convention and you know it may not even be the best way to do something, but we just do it because that's how it's always been done and change can be hard. But, um, I guess that's really cool to actually acknowledge that it can be difficult to make those changes and to sort of help people through. I mean, you know Tractine is such a great product, but yeah, that's interesting that I guess it doesn't really matter if it is a good product. Like, people can still find that change hard.
Kathryn van Diemen:Definitely Okay.
Matt Burgess:You know, recently living in the United States, the jobs that I've had have been in industry and I've worked for large genetic testing companies and one of the things that really shocked me was how antiquated their IT kind of computer stuff is. Like I know one company, superficially, their test reports I think look great, like you know, the font is good, I think it's well set out, you know, the colors are good, like I think that they've had you know the graphic designers design it. But little did I know like behind the scenes they are using like access databases from the 90s and it kind of is just pulling all of this data together. Yeah, I just was really surprised that you know, because in genetics like we have such good computer power for things like actually doing the genetic test, like doing a whole exome sequence in a whole genome sequence in like the computer power involved with that side of things is amazing. But then on the other side, like the computer power to manage our data, it's like decades old, like it's been really funny.
Kathryn van Diemen:Yeah, it certainly can be the case. Yeah, when we do go into new sites and we look at what they've been using historically, and, yeah, sometimes it is quite shocking and you know there are still people trying to manage things on Excel spreadsheets and things. So, yeah, this there's just been that lack of investment in, yeah, in the software side of things. It's just like, oh well, people will make do. But you know, that's one of the things that we've tried to achieve with TrackGene is, you know, just to reduce people's time that they actually spend on data entry and those sorts of things. So, yeah, it's something that we look at. But yeah, it is really interesting to see what's out there already. And yeah, sadly, I'm not surprised to hear of your experience of, you know, some of the older systems that people are still using and still they have to make it work because there's been no budget allocated to improve that.
Matt Burgess:So yeah, yeah, yeah yeah, I don't know, Maybe it happens in other industries as well, but it was kind of interesting to see it from the other side. Now a big part of the software is actually being able to draw a family tree. How have family trees changed over the time? Like have you seen? I mean because, obviously, like, the ability to draw a family tree hasn't changed, but like have the way that we have been doing it, has that changed? Like, have you seen? Like an evolution?
Kathryn van Diemen:Probably not so much until very recently, but certainly over the last, you know, 15 years or so the way that we've done it from from a software perspective and what's happening in the background. We've tried to make that side of things better. But in terms of what you actually see once you produce a pedigree, that side of things probably hasn't changed all that much over the last 15 years. The way that the pedigree needs to hang together has been fairly similar. That obviously changed quite recently with the new Bennett paper coming out last year. So yeah, we are in a period of big change now but certainly prior to that things had been pretty stable on that front.
Matt Burgess:Yeah, yeah, I know sort of talking about convention and getting stuck in our ways, like I think I learnt to draw a family tree way back when and I've been doing it the same way for two decades now and it's funny.
Matt Burgess:It's like I like to think I'm like this cool sort of laid back guy that yeah, yeah, go with the flow, but like one of my rules that I like to, it's like oh, I like to have rules, I like to follow them, and when I'm drawing a family tree, like one of my rules is that I just put the man on the left and you know, you put the man on the left, you put the wife, his wife on the right, and that's just how I've drawn them.
Matt Burgess:But I guess my other rule that kind of overrides that is, if it's neater to put it the other way, like if there are like kind of step children or other relationships, I will swap it around then, but only then. And like there's nothing, because I know that there was, because I will talk to you about the recent Bennett paper. But there's another paper and I haven't, I think I've only read the abstract, but it was interesting because I think Janine Austin was a co-author and they're actually talking about, I think, maybe the patriarchy or like putting the man on the left and what that means, and it's like, oh God, like I don't. From my point of view, it's not political, like I think it's just, that was my rule.
Kathryn van Diemen:Just the way that we were taught. Yeah, I think now I want to go back to the old genetic counseling books and check it, because I'm sure that we were taught that way about it. It's not just something that was a particular thing for you, I'm sure it was. That was the convention, was yeah, man on the left and all that's fascinating that there's yeah, now there's a bit of history behind that.
Matt Burgess:So yeah, I mean, yeah, there is an article, and I was like, oh, I need to put that on my reading list. And it's like, oh God, I'm with all of the other things in our life. I haven't quite got to that yet, but yeah, so, getting back to, or let's discuss the recent Bennett paper, and I'll put a link to this in the show notes. But you know, I think in the more recent time, the conversation around you know, transgendered people has increased in our sort of, you know, just in general life. Transgender is around us and people talk about it and you know it is in the news and it's in the media.
Matt Burgess:And I mean it's kind of hard because I don't want to get super political, but you know, I feel like as we get older, or as I get older and time goes on, you know there is kind of this kind of woke up component, but it's like something that I haven't really like. It's like, oh, I don't want to think about it, I don't want to get into it. But when you draw a family tree, it's something that you need to kind of understand and, without thinking too much about it or thinking superficially, I kind of thought when I was drawing a family tree I was drawing sex and it wasn't until I actually really thought about it. It's like no, we don't write sex on the pedigree, it's gender, like yeah, and for that it was like a bit of an insightful thing. Like how has track gene sort of coped with being able to show transgendered people on a pedigree? Like was there software changes that need to happen or what was that process like?
Kathryn van Diemen:Yeah, there certainly have been software changes that had to happen with that. That's been a big part of our development over probably over the last 12 months actually, and we're just about to release the version that will include that. So what we had in TrackGene, which was the same as probably most, not just pedigree drawing systems but other general medical and patient management systems throughout the world, and there was a single field, and it was interesting because we have the ability to relabel our fields and so different sites would actually call it sex and different sites would call it gender. So it was interesting that even when we still had the one field, that different people would potentially interpret that in different ways, which just highlighted the need that we did have for change. And so with our new software we've separately separated out those fields so that now we do have a field for gender and a field for sex at sign at birth, so we give it the full title, just to ease any ambiguity around that, excuse me. And again with separate fields, also then for gender identity, which can be different again, and then also allowing for pronouns. And so with TrackGene, because the gender or the sex is so ingrained with the pedigree symbol, it wasn't as simple as just being able to add extra values to that list and away we go, it just. Yeah, it wasn't that simple, and so that's why we would receive that the question over the last few years from our existing users, from our potential new users, when we're doing demonstrations and things, they go why haven't you put extra fields in gender? Or why haven't you put extra values in the gender field? And like, well, we can't, because we don't know how that works with the symbols, like it's just so ingrained in the background. So it's been great to be able to change that now so that we have got those inclusive values in the gender list and how that sits with sex assigned at birth. And, yeah, we've been able to bring that all together with the new pedigree drawing.
Kathryn van Diemen:But then, yeah, it's the changes that also came with that, which is, you know, how do you then? So, yes, we can represent those different genders, which is fantastic, but then being able to create relationships to those people. So what we've always had is, just, when you add a spouse, it's always automatically the opposite sex, and that's been something that you do really easily and it's like, well, that's not always the case. So now, yeah, having the ability to yes, if someone wants a spouse, you can, yeah, pick any gender for that person, for the spouse. So, and also trying to balance what was one click to add a spouse because you didn't have to think about it, but then obviously it's extra clicks if we have to then select which gender for that spouse. So we do try and balance the ease of doing the data entry and building that pedigree with that, then having the flexibility to represent the real relationships that are out there, that aren't just, yeah, man on the left and woman on the right.
Kathryn van Diemen:So, yeah, it's been interesting.
Matt Burgess:I think that it's fascinating because you know, as a genetic counselor, we draw family trees and I think the main aim I think this is probably correct in saying is to just see what's going on in the family from a genetics point of view. However, looking at a family tree, it tells so much more than that and even though we kind of say we're not as interested in familial relations, being able to accurately represent what's going on in the family in an inclusive way is really powerful. And you know, like for a lot of conditions it doesn't really matter what your sex is, but then for some conditions that it is really really really important. And it's like you know we're not just asking for fun or because we're being nosy, but like it's good to get accurate information and then it's good to be able to record that. So I like that Trackdream kind of has that functionality.
Kathryn van Diemen:Yeah, it's been.
Kathryn van Diemen:It's, but the genetic counselors is basically, you know, who's driven this process.
Kathryn van Diemen:So it's been interesting that it's not been something you know when you know we we apply for, you know new tenders and things, it's certainly not a requirement that's set out by any IT departments or you know anything like that that we've seen so far.
Kathryn van Diemen:So it's very much been the genetic counselors that have driven this process, because they want to be able to represent the people that they're seeing, and so, you know, they want to be able to put a pedigree in front of their client to say, you know, this is what's going on in your family, and so if they can't represent that accurately or if they're, you know, having to hand, draw you know different things onto the pedigree, you know that's just not sufficient for them. And so, yeah, it's very much been. You know the the want to do that for their clients, which has has driven this, which I think is a, you know, fantastic thing for the genetic counselors that you know. That is what's driving this care of, of care of their patient and their client, and why I love working with this community. So, yeah, it's been great.
Matt Burgess:We are patient centred. It is good. Yes, now our time together is nearly over, unfortunately. I've had a really fun time chatting with you, but one last question. I know that you recently moved house. How's your doggy going in his new environment?
Kathryn van Diemen:She's loving it. So sorry, my girl dog, I think, yes, pepper is absolutely loving it. So we've gone from a little townhouse with almost no backyard to now being, yeah, in a house which has a very big backyard, and so pepper is my little cocker spaniel, who's now two, and so, yeah, with my new house it was a long building process over two and a half years. So my dog is now two and we got her to move into the new house and so, sadly for her, she's had to live in the townhouse environment for much longer than we expected, but she's certainly blossomed in her new big backyard and, yeah, absolutely loving it. So, yeah, she's done very well.
Matt Burgess:Good little pepper. I'm sure there's lots of good smells out there for her.
Kathryn van Diemen:Yeah, definitely.
Matt Burgess:And my banjo is a quarter cocker spaniel, so I wonder if they'll get to meet sometime soon.
Kathryn van Diemen:That would be amazing. Pepper is wonderful with other dogs, so yeah, automatic best friends.
Matt Burgess:Lovely Well. Thank you so much and I'll I think I'll let you go.
Kathryn van Diemen:No, that's wonderful. Thanks, hates Matt.
Matt Burgess:Okay, I'll talk to you soon, thanks, bye. Thank you Bye. So thank you everybody for listening. That was the Mr Fine genetics and I'd like to say a big thank you to Catherine for being my lovely guest on today's episode. I'd also like to say thank you to Trackgene for sponsoring the Mr Fine genetics and I hope that you listen into other episodes in the future.