Making Cancer Care Smarter

Welcome to Episode 30 of The Oncology Podcast's Experts On Point series, brought to you by The Oncology Network. Hosted by Rachael Babin.

What does it really take to make cancer care smarter? In this episode of Experts on Point, host Rachael Babin is joined by Associate Professor Jenny Liu and patient advocate Beth Ivimey to explore how precision oncology is reshaping not only cancer treatment but the way clinical trials are designed and delivered. 

It's a conversation that we hope you will find inspiring - its about combining innovation with compassion—and  its a reminder that some of the biggest advances in oncology may come not only from scientific breakthroughs, but from building systems that put patients at the centre of every decision. 

Drawing on both clinical expertise and lived experience, they discuss genomic testing, trial navigation, toxicity management, patient partnership and the challenges of ensuring the right patient reaches the right trial at the right time. 

Together, they reflect on why the future of cancer research depends as much on smarter systems and meaningful collaboration as it does on scientific innovation.

We hope you enjoy listening.

For news and podcast updates subscribe to The Oncology Newsletter,  a free weekly publication for healthcare professionals with an interest in oncology. Click here to subscribe.

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Transcript

Why Smarter Cancer Care Matters

SPEAKER_02 0:00

In this 30th episode of Experts on Point, we explore what it really takes to make cancer care smarter. Not just through better treatments, but through better decisions, smarter clinical trial design, and stronger partnerships with patients. I'm your host, Rachel Babbitt from the Oncology Network. Joining me is one of my favourite podcast guests, medical oncologist Associate Professor Jenny Lu. We're also delighted to welcome patient advocate Beth Iverme to the show. Beth shares her unique perspective as both a cancer nurse and a patient living with advanced calangiocarcinoma. Together we discuss the importance of getting the right patient to the right trial at the right time, the growing need for effective trial navigation, the challenges of managing toxicities as patients live longer with advanced disease. And why genuine patient partnership is essential to the future of cancer research. It's a conversation that I hope you will find inspiring. It's about combining innovation with compassion. And it's a reminder that some of the biggest advances in oncology may come not only from scientific breakthroughs, but from building systems that put patients at the centre of every decision. Head to oncologynetwork.com.au for the show notes. I'm Rachel Babin, and this is the Oncology Podcast. Hi Beth, hi Jenny. Welcome to the Oncology Podcast's Experts on Points series. It's nice to have you both here today. Thank you for having us, and it's wonderful to be here. Thank you. It's really great to be in this conversation. So today we're going to talk about how we make cancer care smarter. So not just better treatments, but better decisions, better trial design, better support, and better partnerships with patients. So welcome, Beth. This is your first time on our podcast. It's a pleasure to have you

Beth’s Dual Lens On Cancer

SPEAKER_02 1:54

here. So to start us off, I'm hoping you can share a little of your story.

SPEAKER_01 1:58

Okay, so I have been a career oncology nurse, and the last 20 years of my career was spent looking after lung cancer patients and misotheliumic patients. And so I was very fortunate to be around at the time when mutations were noted in the non-spalcer lung cancer group and looking after them. And that became a great challenge because of the side effects that they have. And then to be able to see patients get well and live well. And then in the weirder space they they become survivors. Although I don't have lung cancer. I have great knowledge of lung cancer. I think it's transferable into my situation having palangiocarstoma now for nearly three or it's been diagnosed for nearly three and a half years. And I've certainly outlived my prognosis many times. And I always thank Jenny for that and her dream team. So my my lens is different. I see differently. And I think my personality is sunny side up rather than looking at doom and glooms. But I'm I've learned so much from my patients and from the clinicians that I've I've actually worked with. So that's that's where I come from.

SPEAKER_02 3:13

Thank you.

Drug Herding And Patient Access

SPEAKER_02 3:14

So Jenny, I recently read uh an editorial that you published in the BMJ Oncology. That was at the end of March 2026. We'll include that in the show notes. But the paper talked about the concept of herding in oncology drug to Belaglam. So I'd like to start with that. So I'm hoping you can set the scene for us and explain what that means and why it matters for patients, not just for industry.

SPEAKER_00 3:41

Sure. So thanks so much for mentioning this research. And I think it really highlights the rapidly evolving pace of how cancer drugs are being developed now, which is, I think, in two ways both incredibly um exciting, but also poses some real challenges. So herding really refers to when multiple companies are looking and developing similar drugs at similar targets for similar cancers. And I think in some ways this is rational, and one can see that when there are exciting new ways to target cancer, for example, immunotherapy or using targeted drugs like the ones Beth spoke of in lung cancer, it would therefore create an opportunity for multiple companies to develop drugs in that setting. I think in the short term, and bringing this back to Beth's story, it's incredibly helpful having multiple drugs available because it then opens up access for patients. And we really see in my day-to-day job in early phase clinical trials that patients need drugs urgently at the time when the standard of care treatment is no longer working, when they're still well enough to derive benefit from those treatments. And if we only relied on specific drugs, the timing often won't line up for those individuals. So for Beth, we were very lucky to be able to enroll her onto a trial targeting an FGFR2 fusion that was present in her cancer. And so she was able to get into the right trial at the right time and really derive some uh incredible improvement in her cancer control on that trial. So I think in the short term, it's helpful for patient access. But then there also reaches a point where, if there are way too many drugs being developed simultaneously, it can create some inefficiency or I guess redundancy in our system. In the unfortunate cases where the drugs ultimately don't show much benefit, in the example highlighted in the editorial that I wrote with Dr. Pat Toularou. So this redundancy leads to a huge economic and almost, you know, huge human crisis in terms of the patients enrolled and contributing to all this data that ultimately doesn't lead to drug approval and improvement in patient outcomes. So I really see that, you know, tension in herding and how it's affecting the pace of cancer drug development.

SPEAKER_02 6:24

Yeah, it's interesting to come back to the commentary about timing and for it to be uh less out of an abstract concept, especially when we have the great pleasure of sitting um with a patient who has that first hand experience. Is there anything you wanted to add to that, Beth?

SPEAKER_01 6:43

As Denise said, I was very fortunate. I'd already had my testing done and it was part of a trial. So we knew we knew ahead of time where to go. And although the side effects are challenging, initially I was advised not to go on the trial. And I often wondered, because I did have eight cycles of chemotherapy and immunotherapy, what the difference would have been had I just stopped at that four and then went on the trial.

Trial Navigation Across New South Wales

SPEAKER_02 7:11

So Danny, in the paper you describe patients as the limiting resource in clinical trials. So how do we make sure that we're getting the right patient to the right trial at the right time? It's a a nice ideal, but how do we actually get this done rather than just filling similar studies?

SPEAKER_00 7:30

Yeah, I think this is an increasingly important issue. And navigation, I think, is key in this setting. I guess navigation is the process by which we help patients find the right trial at the right time. We're seeing increasingly that molecular testing, and I'm sure we'll have a bit more of a discussion about the importance of molecular testing has in identifying the right therapies for our patients. But having the mutation report in front of us isn't enough. How do we then translate that finding to actually getting patients into treatment? There's been some big studies in the US that have looked at the prevalence of in advanced cancer of these mutations present. And about 60% of patients actually have actionable alterations when we test them, but less than a quarter of them actually receive match therapy. And I think this big bottleneck really comes down to the issue and challenge of navigating patients to the right treatment at the right time. In New South Wales, we are very fortunate to have a collaborative network called Nectar. And there are 12 early phase hospitals, and we communicate very regularly and talk about what trials are open and try and move patients around the state so that they do get access to the right trial. Beth was originally being treated at one of our hospitals in the network at the Chris O'Brien Life House, and she was referred across to us for the trial, and now she's over at a different hospital at Macquarie. Um, so all three hospitals within the Nectar network.

SPEAKER_02 9:11

Thank God. Beth, from your perspective, what does good trial navigation actually feel like?

SPEAKER_01 9:16

It actually makes you feel safe. It sounds like a territory you don't know, you have no idea. In a lot of people, and I can I can only think of patients because I didn't feel like that. But they're so scared, they're petrified, and it's it's so scary trying to look and know what's around if you're lay people. There's another woman I know uh in Australia, not in New South Wales, and she's the one looking for trials that suits her cancer, which is exactly the same as mine. And in her state, they're not very active in the trials at all. She's she's a young woman with two small children. But for me, I'm lucky that I'm well supported by my treating team, which has been exceptional, by my husband, by my family, and also my oncology friends. And so having recruited patients at trials and being able to talk patients to participate in trials, that's an easy thing for me. But to know that you s there's someone else that you trust implicitly that will navigate you and has your best interest at heart, that that just takes so much weight out of that worry.

SPEAKER_02 10:30

And so what difference can nurse navigators make in helping patients navigate early phase trials and uh so that you can potentially feel less overwhelmed by that fear?

SPEAKER_01 10:42

I think by supporting them, that phone contact, that uh someone that you get to know. If the nurse is worried that the patient is exceptionally worried, there are psychosocial issues, then they can refer them, they can hold them and walk the walk with them and keep them safe and keep them on track and keep them on the trial. It's crucial. It's crucial to patient care. And unfortunately, we just don't have enough or have them, and resources are so thin.

SPEAKER_00 11:12

Yes, I would love to have nurse navigators, you know, like Beth, in our unit who work with patients that are sent to us and help them get into the right trial. So we don't actually, unfortunately, as far as I'm aware in New South Wales have many nurse navigators. I understand those roles exist overseas and in some of the larger phase one units. And I've also heard that their roles are quite important to improve equity of access because in um communities uh where there is much less awareness about trials and there is a lot more socioeconomic disadvantage, the barriers to participation in trials and accessing novel therapies can sometimes be very much related to trust, communication, uh, and even logistical things like having someone pick up and drop off their young children so that they can go and attend the trial hospital for their visits and for their assessments.

SPEAKER_01 12:11

Yeah, Jen Jenny and I were communicating about this recently, and I was reminded of what it was like to patients during COVID in Sydney. And where I worked was in the Southwest. A lot of their investigative um procedures had to stop because the ICUs were being taken over, or those areas were being taken over to be an ICU. So some of the patients in the Southwest could be diverted to a private hospital in the Northwest. But they didn't have someone to take them. Their families were working, they didn't have the resources to get there, public transport was lothsome for them. And the cost of a taxi was $100. Now, for a lot of people, that's just not possible. And how how do you expect someone to be able to do that in in current times now? No, I think I think I think the expertise in the nurse navigator is something that really we have to look into and to pick up those throats and work out a way for it.

SPEAKER_00 13:14

I totally agree. I think it's such an important gap. How it is funded, I guess, is quite difficult because the core role isn't quite seen as within the scope of, you know, the industry partners that we work with. They expect us to be able to identify patients to fill spots. And yes, we have no shortage of patients, but there's nothing concrete that we can measure to say this is the appropriateness or this is the quality of the trial match, both to benefit patients, but also to benefit industry and the, I guess, the cancer research community overall.

SPEAKER_02 13:52

So do you feel sometimes that's quite an interesting position to be in, to any way you've you've got two different heads, two different parts of your jaw, but quite they work together, but they're very distinct in terms of priorities there.

SPEAKER_00 14:07

Yeah. So one thing we've recently done is uh actually do a prospective study. Uh we called it PANA Cotta, where it's practical assessment of like outpatient trial navigation across our network. And we found that combining this nectar model with rapid liquid biopsy testing, we were able to get uh almost half of patients into early phase trials in a very timely fashion, much higher than our national benchmark rates of trial enrollment and matching. Generally, that sits around five to at most 10%. And when we look at outcomes for patients on those trials, the vast majority, so at least four out of five of them, have their cancers stable, controlled, or shrinking on the trial. So it's certainly the first step in demonstrating the value. I guess the next steps is demonstrating cost effectiveness and whether a model like this can be replicated more broadly.

SPEAKER_02 15:06

Do you feel that there's a space in the conversation for technology? So you mentioned liquid biopsies and having that available and then that's speeding up processes. So do you think that this is something it feels like it's quite a human problem, but perhaps actually technology is going to play a big part in the future?

Testing Tech Exists But Funding Lags

SPEAKER_00 15:26

Absolutely. And before we move into novel technologies, uh, the reality we unfortunately face in Australia is that unfortunately, even routine molecular testing isn't widely funded for patients with advanced cancer. So uh for Beth's cancer, for example, right now only specific mutations are funded once a specific drug is approved. So that process is quite inefficient. And also liquid biopsy isn't funded even in lung cancer, where there's a lot of evidence now that doing liquid biopsy after EGFR therapy, you know, is beneficial to identify what the resistance mechanism is. So I guess we have a long way, first of all, to go to get currently available technologies accessible for our patients. And then the next step is looking at the novel technologies and novel biomarkers.

SPEAKER_02 16:25

Yes. And it still continues into this theme of the timing and the frustrations around timing. Technology is there, and you know that there is a way of getting the information that you need, but the system just hasn't caught up yet. Um so I think it'll be interesting to see how the rollout of testing uh plays out over the coming years. But yeah, that's a nice segue into talking into testing in more detail.

Making Genomic Testing Routine Early

SPEAKER_02 16:53

So, Beth, in the paper that you wrote with Jenny, which we'll include in the show notes a link to it, you wrote a paper sharing your personal perspective on patient-centered clinical trials. And you said, I will do anything within my ability to encourage people to have genomic testing. So, from your point of view, it would be nice if you could talk around why timely comprehensive testing is such a critical part of your journey.

SPEAKER_01 17:19

It really comes back to to patients that I've looked after along the way. And patients that were reasonably well when they were first diagnosed, and then they die they die before we can complete their their work up, they die believing that their chemistherapy didn't work. They didn't get the right treatment. I l you look back now over people that have that have touched you and and everyone does, if by being involved and spending my time, and I'm I'm really happy to do it to talk to patients, talk to patient groups be involved in any way that I can encourage patients to uh listen and to ask. Jenny and the Nectar team do a fantastic job in uh medical oncology circles, but when you see all the the booklets in every single cancer centre and it's all about disease and kingotherapy, and now we see more immunotherapy, there you pa there is no patient information about genomic testing. It's not there. And that is one thing that I would love to see changed. So yes, I would do anything. It comes from seeing uh heartbreaking situations that you now know would have been treated very differently. And time, we have we have to get onto this straight away. And to make them part of the conversation, like right in the very beginning, we need to do these tests. So that all of that information is there for the patient, that it becomes as common as that first blood test. And it's something that people you kind of have to be a bit guarded because not everyone will have a mutation, and we learnt that in lung cancer that only 30% did. And you can't talk it up too much, but it is a really important way to go forward. And then the harm that's done to people by having multiple cycles of chemotherapy or immunotherapy and it it isn't the right treatment, and their bone marrow is flattened and there's other lifelong side effects that can happen. So to be part of a system that uh prevents all of that from happening that's a great that's uh a really interesting perspective.

SPEAKER_02 19:30

Uh you have uh a unique position that you have that health literacy because of your professional background, but it's a really stark reminder that not everybody even knows the difference that testing can make. And indeed, as you said, the the percentages of people that that can be affected, we need a broader conversation around that this health literacy approach. But it's complicated, it's very complicated.

SPEAKER_01 19:58

It's clinicians like Jenny that can break it down so that lay people can understand and they understand the importance and to be made to feel warm and welcome and you are safe and I will look after you. Rather than the doom and gloom, and you've got to do this. It's a very different environment.

SPEAKER_00 20:19

And I guess this also comes down to communication.

Communicating Uncertainty With Care

SPEAKER_00 20:23

Um, and communication I think is evolved a lot as cancer care has evolved. I remember when I was doing medical school, a lot of the difficult conversations we were taught to have were really around things like breaking bad news. But I think perhaps the harder conversations now involve how do we communicate uncertainty and the balance between hope and realism. Hope there being a therapy that might help patients, but or even finding something on molecular testing. And then real the realism of having an advanced cancer or a condition, this is what outcome might look like, and the whole art of hoping for the best, but planning for the worst as well.

SPEAKER_02 21:09

Yeah, your profession and the conversations that you're having have evolved a long way from like quite uh black and white, breaking bad news, as Breath was saying. It's a lot of responsibility, Jenny.

Toxicity Management Keeps Trials Working

SPEAKER_00 21:21

I guess going back to the patient partnership is we've learned so much from patients like Beth in her journey of some of the challenges, the side effects that came about through her enrollment and participation on the trial. The fact that immunotherapy that she had received amplified the side effects from the targeted therapy, and then having to pull together a toxicity dream team essentially to help us get through that difficult period so that uh Beth could continue to derive benefit and stay on the drug for as long as it would work. So that's been a huge level. Learning process for us and something that has really then subsequently benefited a huge number of other patients.

SPEAKER_01 22:07

Where I feel that I've kind of uh fallen short It's with education and I I had actually tried. But there just wasn't enough interest for funding, probably. But to uh draw attention to side effects from the targeted therapies and for people to be aware, to be alert. It's it's not just a walk in the park, but you do need someone to help you along the way. And and it's not just one. Jenny calls them the dream team, and that it is so true. And it's multiple professionals, but there needs to be a core person driving all of that. And we'll get there. Excellent.

ADCs Bring Promise And Risks

SPEAKER_02 22:47

So, Jenny, I just want to um pivot back to the idea of herding and talk about antibody drug conjugates, uh, ADC. So we know that this is quite an exciting area, and lots of people are talking about new therapies all the time. Uh, but in your paper you also talked about risks. So, risks of repeating this same herding pattern. And so why is it happening?

SPEAKER_00 23:15

Yeah, that's a really good point. And antibody drug conjugates are these newer class of chemotherapy drugs, which bind to a protein that's present ideally on the cancer cell surface and not on normal tissues. And a lot of these drugs have shown very promising benefits in different cancers. Uh, the most commonly used one at the moment is HER2-directed trastusumab directin. And I think because of the success of drugs like that, there's now subsequently a lot of trials, I think almost 500 trials exploring different ADCs in different cancer types targeting different proteins. So I think we are seeing a bit of hurting in that space as well. What really worries me, though, is the real challenge that we don't quite understand truly how ADCs work and how we select patients for the right ADC at the right time. So the whole paradigm of biomarker match therapy that we've spent half an hour talking about really is at a critical point where because we don't truly understand how these drugs work, even a lot of the trials are designed not to intelligently select patients. And so many of them will pick a cancer type that's common, for example, bowel or lung cancer that has a high expression of that target. And they'll just simply enroll everybody in. And I guess we all hope that there's enough patients that will derive benefit for the drug to then move through trials and hopefully get approved. Um, but I think a lot along the way, we are missing a lot of information about truly how these drugs work, about developing biomarkers. And so that's something I'm really passionate about. If we bring it back to Beth's story, she'll be able to tell you a little bit when the targeted therapy stopped working. The natural next type of treatment was an ADC. Um, and I wasn't happy to just enroll Beth into the next ADC trial with the next spot. And so we went to the effort of pre-testing her tumour for essentially five different types of ADCs. We don't have a liquid biopsy or a simple gene test that can look at all the different ADC targets all at once. And so over many months, Beth got to know many different hospitals and signed a lot of paperwork, and it was quite a stressful time for everyone trying to identify what the right ADC trial was for her. But yes, Beth, do you want to speak to about that experience?

SPEAKER_01 26:01

I have so much faith in the system. It's knowledge. And you I knew the right one would come along, and I always felt very fortunate, but it is time consuming. And I don't know how anyone does this on their own. Like and as Du said, there uh was five five cancer centres, and and it's people know in Sydney, they're not all close together, they're a long way away. We'd make a joke, we'd make like front out of, oh well, we have lunch today. And that's exactly what we did. We made it going. But I think you can only do that if you're not mega stressed. And it was interesting going to different centers, but it I always feel for the person that's on their own, you know, and like who looks out for Joe Blow? I don't know how. But I think if there was a navigator again to sort of help you get along and get along the way, I think it would make it a lot easier. There would be less stress and less anxiety. And you have someone who was scribing what's going on. My husband always records everything and I'll I'll get something a bit wrong, or I can get something very wrong, and if it'll remind me that Yeah, I think it's interesting.

SPEAKER_02 27:10

Quite often on the podcast, people will talk about the mum test. If it was your mum, what would you do? And I think in situations like you describe, sometimes I like to think of the single mum test. It's like, how would someone working, looking after children, family responsibilities on their own, how how would they how would they manage that process? Would it even be possible?

SPEAKER_01 27:33

I don't know. I don't know. People always say, is there something that I can do? Like a diagnosis or I think there are times when seeds could be planted. Could there be a pool of drivers that could take people from A to B? Is that something to look at, something that can be put together as a voluntary basis? I'd like to put my husband to work for something after I've passed away. I don't know that he's got that in mind, but I think that'd be a good thing to do.

SPEAKER_00 28:00

Like to to carry on, like to to keep to keep that ball rolling. And I guess the other strategy is actually advancing the technology so that we actually develop the protein or ADC equivalent of the mutation testing we have at the moment that's

ProCAN Protein Testing And Future AI

SPEAKER_00 28:17

available. So I'm quite lucky to be working closely with researchers at the uh Children's Medical Research Institute, ProCAN, that are developing this technology and we'll be piloting this across the nectar network soon. And I I know there are a lot of uh in global international colleagues that are passionate in this topic as well. And I think it's only through that partnership and collaboration that we can potentially bring new technologies into the clinic faster so that in the single biopsy, we can test for all the protein targets, all the mutations, everything at once, have all that information available at hand. And I think eventually there'll be some fancy AI algorithm as well and help us navigate people to the right trial at the right time. And then you won't need to be traveling all around the city um doing this sequentially.

SPEAKER_02 29:11

Yeah, and I guess that's one of the beautiful things um about conversations like this and the work that you two have done together, is um the patient partnership, is that we on the one hand, we have this incredible technology and this science and all these new things that are being developed. But then on the other hand, it's really seems like a very simple problem that could be easy to solve, which is yeah, how to get people from A to B and to make sure that they don't have to go to five different places. We're in interesting times.

Living Longer With Advanced Cancer

SPEAKER_02 29:44

Just to delve into toxicities a bit more and about advanced cancer survivorship. So Beth as patients are living longer with advanced disease, do you think the systems are adapting well enough to support this kind of survivorship?

SPEAKER_01 30:03

I think people try. And uh you know, I look at the breast cancer groups and and what they've done, and they've paved the way in so many areas, but there's been money, motivation, and numbers. I think uh very strongly about obviously about lung cancer and say the art groups, the EGFR groups. But maybe that's a place to start that we put our heads together as uh different groups of people that have got uh diseases where we have outlived prognosis and we've been very fortunate to live in times when treatment uh is looking uh differently and we have had the benefit of genomic testing and drugs. And have some kind of think tank to go forward and s see where the gaps are. And I think that for it to be patient and clinician driven. I think that's something that we need to do and maybe something I'm happy as a consumer to say address for somewhere like the Cancer Institute, something like that, because I think that's where it will need to come from.

SPEAKER_00 31:06

It's sometimes connecting patients actually can be quite helpful. There's a surprising number now of cancer support groups, and the support groups aren't just defined by the type of cancer people have, but also mutations that they have, because then they can share their experiences with side effect management and if I know you've been part of some of these, so that community might be helpful.

SPEAKER_02 31:30

Yeah, I think so. And Jenny, we've spoken before on podcast about um, I love your phrase about building the your dream team, your toxicity management dream team.

Why Dose Holds Waste Data

SPEAKER_02 31:41

So, what does that team look like now that you are managing newer therapies?

SPEAKER_00 31:47

Yes, it's certainly uh increased in the number and complexity over time. We unfortunately don't have at the moment a formal structure where everybody meets in the one room at the one time. Maybe that's something we can build towards, but it's certainly very helpful having a network of very engaged colleagues that understand the intricacies of the drugs that we develop and also sometimes a time-critical nature by which we need to act and make the treatments better tolerated. What happens in the drug development space when a patient enters a trial, every single day that they're getting the treatment counts towards whether or not that patient's data can be used to understand the benefit in terms of the side effect effect on the cancer and other features such as the levels of drug in the bloodstream. And in general, if a patient is off treatment because of side effects for more than 20% of the time in the first month or so, their data all automatically is discounted and it's essentially thrown away. And so if that happens, because we're not proactive enough with any side effects, then the trial needs to find additional participants. While the individual patient can stay on the study if they're continuing to benefit, it does create that inefficiency in the system. So uh that's one real motivation to try and manage these side effects better. The other thing we see a lot is that in the time patients are off drug, obviously nothing is holding the cancer back from growing. So then the cancer starts growing quickly, and then when the next scan's done, inevitably there'll be signs that the cancer's grown or there's progression. And then many of the times the studies will then say, okay, then the patient's not derived benefit, we need to stop trial. Uh so we've pushed quite hard against this issue. And like for example, in Beth's journey, we managed to get the company to agree that even though there were new spots on the scan, they arose because of the side effects. But if we could chase down and treat those little spots with radiation, then subsequently and finding the right dose and the right management of side effects, um, the drugs continue to work. So I think that speaks to really the incredible value that having those um specialists at our um beckon core is really important. Agree.

SPEAKER_02 34:24

And Bet, do you feel that toxicity management focuses more on what clinicians need to measure, particularly in this in the trial context? Um, or is there a focus on what is it actually affecting you in your day-to-day life? Is did those two sides marry up? Did you experience something that was unusual?

SPEAKER_01 34:47

Yeah. I knew it's say say like early toxicity days. Yeah, it was it was hard because I had new diagnoses of other things that had occurred as a consequence of previous treatment and was very confused about these new symptoms that I had, and that wasn't an area that I knew anything about. It was hard. I I was really sick. But I was really well looked after and I wouldn't have survived without that dream team. You ha you have to have an excellent clinician that has a fantastic referral base in your own dream team. And even like that funny side was where um there are foot toxicities with hand and foot. And the registrar that I was speaking to, he said to me, uh he told me about shoes. I said, shoes? Like, what do you mean? And it's not, you know, you're gonna have to get ortho, you know, orthopedic shoes. I said, You're talking to the wrong person that that is not nas and like he he knew in his head what was gonna happen. And that there were times when it was really hard to walk the hand foot thing was not funny. And he said, Would you think about getting some sneakers? And I'll I'll get the glitter and I'll put the glitter on for you. And I'll never ever forget that. I mean, there's so much to get to remember and celebrate and acknowledge how fantastic my journey has been. It's been it hasn't been a piece of cake, but there are many memories like that. And they're wonderful to share.

SPEAKER_00 36:24

I love that story.

SPEAKER_02 36:25

Yeah, I love that story too. And it's uh personalization is important, maintaining your you know, style or your hair into it.

SPEAKER_01 36:33

Yeah. I'm not a mildemacos, but you know, I I do like my shoes.

SPEAKER_02 36:38

And Jenny, did you have anything that you wanted to add here before we just move into the patient partnership with a bit more focus?

SPEAKER_00 36:47

I think well, certainly there's so much we can learn from being open and with, you know, observing what happens with our patients, what they experience, and what does their experience teach us about how well or not well the drugs are working? So, in that very setting, the registrar um, Beth, you speak of is currently leading a global analysis on the same drug that you were on, looking at the impact of immunotherapy on toxicity and whether or not we can then predict and better manage patients who have had pri-immunotherapy subsequently getting targeted therapy. So I think, you know, having that open mindset of realizing this is actually a trend that we're observing by the bedside. Can we go back then into the lab and understand this at a molecular level and then use that information then so that we can better sequence and better treat subsequent patients that get the same drugs?

SPEAKER_02 37:50

And that is a very nice segue into talking about the role of patient partnerships.

Patient Partnership From Trial Design

SPEAKER_02 37:56

And Beth, I'd just like to ask you, from your point of view, what this sort of genuine patient partnership looks like, not necessarily during your treatment and care decisions, but in research design and clinical trial development from the beginning.

SPEAKER_01 38:11

I think patient voice should be there right from the beginning. And I would think that's not always possible. But I don't think that it's impossible. And the science and technology are so important, but they can't overtake the human.

SPEAKER_00 38:26

In a lot of the trials that are run through, I guess, researchers and through the cooperative groups and often through grants, we are very much encouraged to work with consumers and patient partners like Beth to develop these studies. What I like to see though is an increasing move towards these partnerships, even from industry-led trials, that they consult patients as experts so that the studies are designed in a way that is patient-centered and that we're not placing unnecessary burden on patient participants if it doesn't help advance the science or ensure that the drugs are developed in a safe way. So I think this is really something we should be doing more. Probably the easiest and lowest hanging fruit is actually asking patients how they feel. So patient-reported outcomes and surveys should be valued as much as the toxicity rates that we sort of record from a scientific point of view. And that information should be used as well in deciding what's the optimal dose and how should these drugs be delivered to really advance uh cancer research.

SPEAKER_02 39:38

Is there anything that you've noticed over your career, Jenny, that you have learned about that you think, oh, we've maybe underestimated that and then you've changed, you've adapted?

SPEAKER_00 39:50

Yes, I think in really the five years I've been doing drug development, I've increasingly realized that it's really not just about science and innovation and the biomarkers, but also really about the system and how we actually execute that science in a patient-centered way, how we navigate people, how we communicate. So it's all the soft and art aspect of what we do, not just the science. And I think bringing those two things together in early phase trials can be both challenging but also rewarding.

SPEAKER_02 40:25

Balancing the exciting science side with the very crucial, vital human side of delivering these changes.

A Navigator For Every Patient

SPEAKER_02 40:34

So, Beth, if you could change one thing tomorrow, whether it'd be trials, survivorship, communication, what would you change? I would change models of care. And tab navigator for every patient. That's what I'd change. So that every person has a person. Absolutely. And you, Jenny.

SPEAKER_00 40:54

I think maybe that's our next project, Beth, because I was going to say the same thing. That it just seems like a no-brainer that if we can improve both patient experience but also the efficiency by which we're doing research and uh cancer trials, that's a missing link. If it wasn't for networks like Nectar, uh, I think it would be really difficult that patients sometimes would be simultaneously referred to multiple trials units, and then no one has visibility of where this patient should best be placed. So I think having that coordination, having a navigator move people to the right place at the right time is quite key.

SPEAKER_01 41:33

And what's giving you hope? What do you think we're doing well? I think genomic testing, we're doing that really well. We are we're getting better and better. I was reading an article this morning that Jenny had put up, and it was reducing the time that patients were having uh saber. And in my case, when I thought it was over an hour each time. And they've got they've got that down to half an hour. Like there were so many things that are are so much better. And that is so that's so patient-centric, isn't it? Like to reduce that time to half. And the clinical trials to have nectar, like that is just brilliant. That didn't exist. And there used to be these funny little sort of uh stickers in every consulting room about have you thought about entering clinical trials? And I I don't know how many people that really uh encourage to uh ask about a clinical trial. So demystifying uh a lot about the trials, I think that's something else that's going anyway.

SPEAKER_02 42:38

Yeah, it's good to hear. Antony, what what's making you hopeful at the moment?

SPEAKER_00 42:43

I think there's really a lot of opportunity and looking at where Australia is placed, I think we're very fortunate to be in a country where there is a lot of innovation and also a lot of appetite for early phase trials. So this gives our patients a lot of access to new therapies. Because of our geography, also, Australia has really been punching above our weight in innovation of how trials are delivered and telling trials and decentralized trials, led by across a lot of the regional networks, is I think have a has an opportunity so that we can deliver therapies to patients in their home, even do telehealth, and then really reduce things like time toxicity and improve equity of access. So I'd like to see none, you know, improving in the near future.

SPEAKER_02 43:34

Fantastic. Well, thank you, both. I feel like we could carry on chatting for hours. It's interesting to have both of you here and to share both of your perspectives and how enlightening it is that the conversation comes back to these practicalities time and time again. So I am sure we will keep having conversations like this. Oh, thank you both. It's really valuable. Thank you, Rachel. It's a pleasure. Thanks, Rachel.

What’s Next And How To Follow

SPEAKER_02 43:59

Thanks for listening to this episode of Experts on Point, brought to you by the Oncology Network. If you enjoyed this episode, keep an ear out for our upcoming podcast series on transforming ICCA, where Associate Professor Jenny Lu discusses her research, the importance of building a toxicity dream team, and shares practical insights with international expert Professor John Bridgewater. To be notified when the series is released, join the Oncology Network for free at oncologynetwork.com.e. Thanks for listening.