Latest / Forward Together: The Mesothelioma Podcast / Episode 2: What Can Data Tell Us?
Transcript
- Simon Bolton: Hello, my name is Simon Bolton. I'm a mesothelioma UK clinical nurse specialist, and I cover the West and North Yorkshire region. I'd like to welcome you to episode two of Forward Together, the Mesothelioma podcast. And today we're going to talk about data and clinical audit and why that is important. And today I'm really delighted to be joined by Dr. Maurice Dungey. and I will hand over to Morris who can introduce himself. Maurice: Yeah, thanks, Simon. Yeah, so my name is Maurice. I'm a clinical lecturer in medical oncology in Leicester. I work within the Leicester Mesothelioma Research Program. And as a clinical lecturer, I have a sort of a split job. So I spend half my time seeing patients in the clinic. So I work as a medical oncology registrar, and the other half of my time is spent doing research. So I get to sort of see both facets of the importance of data. so seeing it in research, but also implementing it with patients. So very lucky to be able to kind of balance two things with my job. Simon Bolton: Excellent, thank you. So I'd like to kick off by asking you to tell us a little bit more about the Leicester mesothelioma research program if that's okay. Maurice: Yeah, of course. so I'm fortunate to work with Professor Dean Fennel. So Dean Fennel is the lead of the Leicester Mesothema Research Program. So this is a a group of clinicians, so doctors, nurses, and also scientists that all dedicate their research to mesothelioma. and our area really is in clinical trials. Professor Fennel, as the lead, has led a number of national clinical trials in patients with mesothelioma, which have led to some changes in clinical practice. And one of the main issues that we find for patients with mesothelioma is the sort of lack of treatment options. And we believe quite strongly that giving access to clinical trials it provides. The opportunity for patients to have access to drugs which may have benefit for them. We specifically look at targeted treatments. Targeted treatments are those which exploit the specific changes on the actual cancer itself to give maximum benefit against the cancer whilst causing the minimal damage to the normal tissue. So that results in least number of side effects for the most effectiveness. That's our aim, really. over the last sort of 10-15 years, I think there's been multiple trials that have come originating from the Meso Theory Research Programme. And the confirm trial, Vim trial, MIST was five trials, and most recently we've done the Nero trial, which was a randomized control trial. Again, these were all national studies. At the moment, we've just opened a new study called Select Meso 1. And we've recruited our first few patients to that trial at the moment. Again, that's a targeted treatment. And we're hopeful that that's going to be a real benefit to some patients involved in that trial. The other thing that we do other than just running a clinical trial offering drugs to patients that they wouldn't have access to otherwise is we look at the biology of the cancer to see why some people may respond to treatment and why some people don't. And that gives us information further down the line as to what other treatments might be beneficial. And we do that by looking at the the DNA and the the RNA and the specific details of the cancer itself to see which elements may make the cancer vulnerable and which elements are protecting the cancer. And that helps inform future trials and hopefully informs our future clinical practice. Simon Bolton: Yeah, yeah, thank you. So ultimately the work that you're doing, that's advancing our knowledge and bringing hope not just for those people who are living with mesothelioma right now, but also for future generations because of the work that you're doing and hopefully will identify work streams moving forward. Maurice: Yeah, that's exactly right. And I mean the the main thing, I mean the the patients that are participating in these trials, obviously there is the potential for benefit for them, but they're really they always tell us they're they're participating for the the benefit of future people. And that's really what you know what these clinical trials are doing. We're we're aiming to try and keep moving the bar forward with each clinical trial to keep improving our management and enhancing our management for patients. It's me the CM is that's that's the aim of our clinical trials. Simon Bolton: Good. And I think we talk about moving forward and identifying new treatments, but it's also important that occasionally we'll have clinical trials and we will get results that maybe we weren't expecting and that they might be disappointing and might not lead to a change in current practice. But it's important that we do that work and we rule out certain treatments if ultimately not going to be beneficial or any better than we already have. Maurice: One hundred percent. And when we do a clinical trial, we always have a question. is the trial is the drug gonna be of benefit or not? And we can never say one hundred percent yes, it's then it definitely gonna be benefit. Otherwise we wouldn't need to do the clinical trial in the first place. so therefore, you know, that's the the risk with a clinical trial, isn't it? But on the whole, most clinical trials usually do better than than standard care because we wouldn't put clinical trials forward. Or create them if we didn't think we were going to create benefit. Simon Bolton: Great, thank you. So moving on to data and audit, and I'm going to show my age now, and I'm going to talk about what used to be called Lucarda. And that stood for lung cancer data set. And that was the sort of very early. beginnings of what became the national lung cancer audit and working as a my background is working in lung cancer. I've worked in lung cancer gosh for over 20 years now and having national data and seeing how many patients were diagnosed with lung cancer in the hospital that I worked with and how many were treated and what survival looked like. I could get hold of that data for the patients in my local hospital, but I could also compare it with hospitals across the region and hospitals nationally as well. And from the national lung cancer audit, we were able to pull out data relating to patients with mesothelioma. And because of issues with funding, the report about the mesothelioma patients unfortunately disappeared for a period of time. And Mesothelioma UK were instrumental in picking up that funding and producing a national report. And that lasted for around about a decade. There were three national mesothelioma reports. was in 2020 and that looked at people who were first seen and diagnosed between the dates of the 1st of January 2016 and the 31st of December 2018 but we're now in 2026 so for some of the patients whose data was reported in that national audit we're almost a decade on. What do you think has been the benefit of having a national mesothelioma audit over that decade and what do you think has been the impact of not having that data for probably best part of eight to ten years now? Maurice: Yeah, I mean you're spot on. I think having an audit is is really valuable actually. And so to just sort of take back a notch so the the the purpose of an audit is to look at how you're achieving clinically, whether you're achieving the guidelines that you had set out. So you set some standards and then you're basically comparing yourself against those standards to see how well you're doing and you need to set those standards to start off with. So you can compare. And some of that might be how many patients are reported or discussed in an MDT, which is a meeting between different specialists. It might be how many people are having certain diagnostic tests, and those diagnostic tests might be what we think is the gold standard test, or how many patients are having the treatment that we'd expect patients to have. so if we have all of that data, we can say. How well is my center doing compared to that standard? And where can I improve? And where are we doing well? and I think that's really valuable data for every you know, for everyone. It's valuable for the patients because they know how well the centers are doing and and what you know what things are done well and what things to look out for. But it's also valuable as you're as the clinician, because you know, okay, 25% of our patients aren't being discussed in time in our meeting. So therefore, we need to make sure that's done better. So having those having those regular audits, it keeps the clinical practice as good as it can be. But also things change. So the gold standard diagnostic tests change over time. The structures of our systems, our cancer alliances, our regions. How the MDTs are done, that also changes over time. And also maybe the treatments that we give patients. So there might be more patients having systemic anti-cancer therapies like chemotherapy, immunotherapy, or there may be more patients having radiotherapy or s or surgery. And that's changed over time. So therefore, your standards or the things that you're comparing against often change over time as well. So it's really important that you have up-to-date audits and regular audits so you know where you are. so back back when you're saying we had regular audits, and it is a little bit before I was working in this in this area, but having that data is really valuable for a clinician. and it tells you as a local centre how well you're doing, but also nationally how well you're doing. Simon Bolton: Yeah. Maurice: and and you know, we haven't had that recently. And I think as a result, we don't really know, if we're being honest, in England how well we're doing. And I think it's only been recently. So Scotland have done their own thing. So Scotland have got their own key quality performance indicators and they've been benchmarking against those and looking to see how well they're doing. and during the time they've done that with their regular audits, they've seen an improvement in their survival outcomes. So how long people are surviving during that time. that may be related to the performance indicators and improving their clinical practice as a result. we haven't done that in England for, like you said, almost a decade now. and I therefore I think having regular audit, having data that's up to date is really important. Simon Bolton: Okay, thank you. So that brings me on to get data out. I know you've been involved in some work looking at that data. Could you tell us what get data out is? wherever possible what the data shows and what the limitations of this information, what that looks like in comparison to what you've just been talking about, a full, dedicated national audit. Maurice: Yeah, so so get data out is it's a program that's provided by the National Disease Registration Service. This is a a part of NHS England, as it was, and essentially they manage data that's available for patients. So anyone that has cancer is registered on the national database. and then there are also a number of other databases that are available. So for example, there is a systemic anti-cancer therapy database, which is a it's like a chemotherapy and immunotherapy database. There's a hospital admissions and episodes database. And what they do is they pull the data together so that they're linked so you're able to get an idea of how people have done. So get data out is a program that pulls all of that data together and makes it a bit more accessible. so that people are able to access it and look at areas to see whether you know how well regions have done but also to look nationally how well we're doing in terms of things like incidence which is the number of new diagnoses, survival rates, and proportion of people that are having treatment. I got involved in this because someone within the National Disease Registration Service is very influential in getting mesothelioma as reported as part of it, because it they were only reporting sort of some of the most common cancers. Mesothioma as we Simon Bolton: care. Maurice: know is is is quite rare if we talk about it compared to other cancers. But but it's an important it's an important disease. So they were very kind as to include mesothelioma as one as the one of the groups that was included in the get data out. And so that data was available. I was approached by Liz Darlison that is at the OMA UK as a would I be able to help with this as a a project to kind of get the data and make something that might be useful as a patient facing document. So what can we find out from that data that, you know, patients might find interesting. I took a big big dive into it found a lot there was a lot there. So and we it's sort of snowboarded for a much big bigger project. But at What we sort of looked at is how the number of people that have diagnosed with mesothelioma has changed over time. I can't go into specific details because the data that it's under a submission at the moment with an academic journal, but I can tell you generally what the pictures show. And that's as we sort of know asbestos was banned in the UK in 1999, we expected to see a decrease in the number of patients being. Diagnosed with mesothelioma towards sort of the middle of the last decade. That was approximately when the peak in our incidence rate in England was, and there has been a decrease in the number of patients being diagnosed with mesothelioma since. It's not been a dramatic drop. It's not been a you know a steep decline, but it has been a decrease. we've also saw that there was regional variability, so we know that. different areas of the country had different industrial links and and unsurprisingly therefore areas such as the northeast have a greater incidence number of people being diagnosed with mesothhioma compared to so for example the southwest. and we also we also note that variability i i in the how patients are treated as well. And that's quite important because we see that patients in different cancer alliances, these are regions essentially in in England, had a different proportion of those patients had surgery, a different proportion of those patients had radiotherapy, depending on where you were in the country. And that's quite interesting because you kind of expect that wherever you go in the country, you should sort of have a similar proportion of treatments. received by patients. the positive news that that the hopeful news that I can sort of sort of say that I could see from the data is that the proportion of people that were living for one year and the proportion of people that were living for two years has improved over the last 10 years. Simon Bolton: Yeah. Maurice: so that's that's that you know that's in itself is is hopeful. And this sort of data, because of the nature of it, it's registry data, it's retrospective. We're looking back in time. It probably doesn't really account for the most recent treatments that have come into practice. Patients that have diagnosed with mesothium and now often receive immunotherapy. That wasn't the case before 2020. So therefore things are probably likely to continue to to improve a little. There are some problems with the data. it's very different to the audit data. When you're doing audit data, you can take a single patient, you can look at everything that's happened to that patient and then you collect it and then you group all of those data together. This is registry data and therefore you can't really look at an individual patient level. So let's say Simon Bolton: I see, yeah. Maurice: if we have let's say a hundred patients and 40 of them receive chemotherapy, What you don't know is the reason why they didn't or did receive chemotherapy or immunotherapy. We don't know how fit those people were. We don't know what else was going on with them. Whereas with an on an audit you can create a sort of a bigger picture. so what that's one of the limitations. The other is that this is NHS England, so it obviously it ignores the other parts of the UK, it's specific for for England only. and like I said, it's retrospective. We're looking back in time, and it's not quite as up to date as maybe an audit would be if we were to do one now. Simon Bolton: Yeah, thank you. It sounds really interesting and encouraging to hear that particularly around survival seems to be improving and although you mention it's maybe too early because the data is retrospective to make a correlation between that improved survival and treatments like perhaps immunotherapy, but it does show that maybe some of the other treatments that we've used and not just treatments, but the general support that we give. Thankfully now Mesothelioma UK have clinical nurse specialists working in most areas in the country. So that level of support and guidance is there. And then also the managing symptoms I think is perhaps contributing to that increase in survival. The way in which we manage pleural effusions, the drains that we have access to for instance now are probably very different to where we were 10, 15 years ago where there was perhaps a greater source of infection risks. So it's all very encouraging. And I think you and the team who... put mesothelioma on the agenda and make sure that we are able to get that data going back to what I was saying earlier in the early days of the national lung cancer audit, we were getting data about lung cancer patients and mesothelioma and then mesothelioma unfortunately fell by the wayside because probably down to funding and although the data was there, it just wasn't being captured and reported. So it's important that there are people who identify how important it is that we have this data rather than just collect it Nothing happened to it. I also understand that the full Get Data Out findings will be presented later in the year at Mesothelioma UK's annual National Patient and Carer Day, which is taking place in Leicester again this year on the 1st of October. October. Maurice: Yes, exactly. I'll I will be there as well. Yeah. Simon Bolton: I'll be there so I'll be looking forward to hearing more about that data. Now that brings us on to an exciting opportunity with regards to data collection and that's a project called BRISMA which is a British snapshot mesothelioma audit. It's a project which is funded by Mesothelioma UK and it's also co-funded by the June Hancock Mesothelioma Research Fund. if you could tell us a little bit more about Brisma please. Maurice: Yeah, so as we've discussed before, not having an audit for quite a long time means that we don't necessarily know exactly where we are right now. so the idea of BRISMA is it's a snapshot audit. It's to look to see exactly what's our state of our mesothioma care at the moment i in the UK. the last audit was a decade ago. So we want to try and get something done now to see where we are. The time it takes to do a big national full audit, and the cost of that is obviously quite large. and there are plans to get more sort of national Museum audits in place, but this one is a shortened version. So the aim is is that we will look at a four month window of time. I think it's last spring so four months and last spring we've basically given ourselves one year of follow up for those patients. So we're asking every area of the UK clinical staff to first of all have an expression of interest to let us know that we're in in interested in in taking part. Then we've created a database. we'll ask them to find any patients who were diagnosed during that window of time over a year ago. And then they can fill in all the date details of what's happened to those patients during that year's follow up time. So we're yeah, so we're looking at patients from over a year ago. So we're gonna have a year's follow-up data for these patients. it's a retrospective snapshot. there's a set of standards that we're looking at, and it's similar to the things that I mentioned before. Number of patients that have been referred to an MDT, how long it took to be referred to discussing the MDT, how long it took for them to see a specialist, what diagnostic tests did they have, what special tests were were taken. on the actual cancer itself to look at biomarkers of the cancer. did they see a specialist mesothelioma nurse? did they have radiotherapy if they're in severe pain? we'll also see which treatments they had, how many cycles of treatment they had, and the reasons for for the treatments. And this will give us a exactly what what I said before, give us a picture of what's happening in the UK. It'll tell us about variability. It'll tell us about whether there's difference in different areas. Are patients in the East Midlands being treated differently to patients in the West Midlands. And hopefully it'll give us some reasons why. And then we'll be able to build on that further. we'll be able to create recommendations from it. And and each centre will be able to see how they're doing. Each center will be able to see how they're doing compared to nationally. and we'll create a report and we'll create patient facing documents and lots of things from it. But really the aim is so we know what what are we doing well and what can we improve. and I think that's really the the important thing because It's not been done for a while and things have changed. immunotherapy is completely changed how we how we treat patients. Now there's been trials related to surgery and therefore our surgical management is slightly different to how it was, say, just over a decade ago. And Simon Bolton: Yeah. Maurice: some of our diagnostic tests are different. We use some different diagnostic tests in Leicester than I I'm sure compared to other parts of the country, but also definitely different to how we did ten years ago. So it would be interesting to know what is everyone doing and What can we do better? And should we all be doing exactly the same thing? And if so, we need to make sure we're all doing the best thing. Simon Bolton: Yeah, yeah, brilliant. I think inevitably this succeeds if we get... lots and lots of data so we are reliant on individual hospitals submitting their local data about their mutatheloma patients. I know as mutatheloma nurse specialists we've all been heavily briefed on how we encourage our local hospital and the NHS hospitals within our region to get involved. But I do wonder if there will be some hospitals who are not as quick to get involved or simply don't get involved at all. And I wondered what your thoughts are on whether there's an opportunity for patients to get involved in encouraging their local hospitals to get involved with this project. Maurice: I mean certainly, I think you're completely right. the audit basically it it lives and dies based on how good the data is. And what if a center doesn't provide us with any data, is that because the center feels they already do everything perfectly or is it because they're not doing anything well? In reality, what we want is as much data from every centre as we can in the UK because that tells us what's going on as a clinician, I would say I would always be happy to be told about something or informed about something and encouraged that you know it would be useful for every centre in the UK to be involved in this. And I think you know as a patient, if you or a carer or someone that's involved at all in in mesothhioma, then if you encourage your local centre to participate, we're not envisaging this to be a huge piece of work for each centre. but collectively this will provide really useful data for the whole country. Simon Bolton: Lovely, thank you. So before we close, this is only our second episode of Forward Together, but one of the regular items that we'll be featuring is asking our guests to leave us with some words of wisdom. Now, I'd argue that you've given us lots of words of wisdom over the last 25 minutes or so, but in keeping with the theme, what advice or encouragement? would you share to help the mesothelioma community move forward together? Maurice: well keeping it on topic, people say sort of we're living in a data age at the moment and data in itself can be quite scary. things like AI is it can be a bit of a terrifying concept. but from a clinical perspective and from a cancer care perspective, actually, this is a time where things are moving very quickly. so Being able to create an audit like this, it's all run on the internet, we're able to set it up quickly, we'll get the data quickly, and we'll be able to make the recommendations quickly. This will happen at at a speed that has not happened before for this type of audit, I can guarantee that. In the same way, within the clinical trial setting, we're able to sequence the DNA of the cancers. We're able to get information about every single cell that is involved. the information is astronomical, and as a result, the more data we have, the quicker things move. And I think the next sort of decade or so of cancer care, everything is just going to continue to improve. And I think it's exciting in from an improvement point of view. And I think it's encouraging and hopeful. The more data we have, the more likelihood we're going to be able to offer better drugs, better care. And also from a from this audit perspective that we've been talking about, we'll be able to identify where things can be improved and hopefully make recommendations. And I think the more data we have, the better the improvements that we can have. And I think that's sort of in every part of our care. So I think it's it's encouraging, it's scary, but it's exciting and hopeful. And I think that's my sort of My my snippet of advice. Simon Bolton: That's great. Thank you so much for joining us today. So in closing, I'd like to say a huge thank you to the team at Mesothelioma UK who produced this podcast and of course our special guest, Dr. Maurice Dungey. I hope you've all found this episode really helpful. At Mesothelioma UK, we're here for all of the Mesothelioma community to move forward together. Thank you and goodbye.