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Naman Julka-Anderson (00:47)
Okay everyone, so this is episode 192, which is part of our Equity, Diversity and Inclusion series, where we'll be hearing from our guest Georgiana Synesi talking about her PhD on inclusivity in clinical trials. Hi Georgiana, how are you?
Georgiana (01:01)
Hi, thank you so much for having me. I'm good. ⁓ Yeah, just, I did. It's nice to do something that isn't my thesis at this point, because it's just been taken over my whole life, so.
Naman Julka-Anderson (01:04)
Great to have you here.
prepared with their own mic.
Don't worry, we will get to that as well.
Would you mind just starting and telling us a bit about who you are and your career background?
Georgiana (01:20)
Yes, so my name's Georgiana. I am in the final year, final month of my PhD, which is really exciting. I did my first degree and my masters in pharmacology, so very technical cells and stuff like that. And I've ended up doing a PhD in clinical trials and specifically in increasing access to clinical trials, making them more inclusive, which might seem like a bit of a funny jump.
but I guess I took the bits of pharmacology that I liked so the more bigger picture, let's talk to patients stuff and less of the cellular stuff which I didn't really care for.
Jo McNamara Rad Chat Host (02:03)
Can I ask, did you go straight from doing your pharmacology degree straight then into your PhD? Or did you have some time where you worked?
Georgiana (02:10)
No.
So I graduated from my first degree, my undergrad in 2020. I wanted to go travelling but as we know what happened in 2020 that derailed all my plans. So I went straight into a masters and then I worked for a year at a CRO, a contract research organisation who run clinical trials for cancer treatments. So that was my bridge. So I did that for a year and then didn't like that. So then I applied for my PhD and that's what I've been doing ever since.
Naman Julka-Anderson (02:39)
It's quite nice that you say that though because some people are always worried about saying I didn't enjoy something and I had to move and this and that but it's kind of part of life isn't it? ⁓ How did you apply for your PhD? Did you find a studentship?
Georgiana (02:48)
Yeah, for sure.
Yes, so my PhD is funded by, this is a bit of a mouthful, the Trials Methodology Research Partnership, Doctoral Training Partnership. yeah, lots of letters. So when I came across the project, was sort of, not fully fledged, but it was worked up and I think it would have, it depended on the candidate. So I think if they'd hired somebody who came from a more statistical background, it would have gone more down that route. Whereas I've taken it down a bit more of a mixed methods.
bit less statistically based route. But yeah, I didn't come out of uni thinking I really wanted to do a PhD. My supervisor listens to this and is like, what on earth? But I just was looking for something else to do. As I said, I didn't really enjoy my job and I said to myself, I would consider a PhD if it was something really specific, it was something trials related, cancer related, but that didn't involve lots of statistics, which were kind of hard to come by.
And then my friend sent me the advert for my PhD and I thought, wow, that's just perfect. That's exactly what I said I wanted to do. And it was at that time a new doctoral training partnership. So I was the first cohort of students. So yeah, I applied and I got it. And then I very swiftly left my job, had a few months off for the summer and then got started in September.
Jo McNamara Rad Chat Host (04:13)
sounds perfect. So without this sounding like a PhD viva, which I'm really adamant that it doesn't sound like, but if you had to kind of describe to an audience of patients, what is an inclusive research trial? What would it be?
Georgiana (04:31)
So I think the focus is less about trying to make sure that everybody in the whole population is in the trial and more about making sure that the people who are affected by the disease are in the trial as far as possible anyway because the issue is that a trial will get tested in a population of people but that might not reflect all of the people who take the drug or the treatment in when it's available in general practice. So then there's a bit of a gap you don't really know how.
it is going to be in all of those groups of people. So that's the crux of the issue and I think it kind of starts with research, not necessarily researchers not doing their due diligence, but there's not enough looking at the population of the people who get the disease and making sure that the trial is accessible to those people, I think, before the trial begins. So I guess it's never a case of we need to get
all of these people who will be affected into the trial, but it's more making sure that there isn't barriers for those groups of people to access the trial if they want to join one.
Jo McNamara Rad Chat Host (05:38)
I asked a PhD question about what was an inclusive research trial. As I said, it was like, yeah, this sounds so much like a viva
Georgiana (05:47)
I'm gonna have that in the next few months, need the prep.
Naman Julka-Anderson (05:51)
If you ask
that question to other senior academics you've worked with, what's the answer you think you would get?
Georgiana (05:57)
That's a good question. I think because I work in a clinical trial unit and we, you know, we design our own trials and things like that. I think the answer might be a bit more data focused, like just making sure that we get the data out of the trial that is needed to answer the research question. And I think the focus on that is why maybe inclusivity in the past has fallen by the wayside. Because recruiting to trials, recruiting anybody to trials is difficult and there's barriers to that.
as it is, but then when you're recruiting underserved groups, underrepresented groups, you know, that might be multiplied. So yeah, I think the focus would be more on just, we need to recruit to reach our numbers because we've got targets to reach and that sort of thing. And we've got a sample size that needs to be achieved. So the results actually make sense. So yeah, there may not be, I suppose, the privilege of thinking about who's in our trials and making sure that
it's representative of the population. So I appreciate it is not easy from that perspective, from the researcher perspective.
Jo McNamara Rad Chat Host (07:04)
So the million dollar question is, what are some of the barriers for, you know, inclusive clinical trials?
Georgiana (07:13)
So I've done some research through my PhD and I've investigated with patients and also with healthcare professionals, so anybody that's involved in recruiting to trials, consultants, research nurses, that sort of group. And something that kept coming up with the hospital staff was that they didn't have the resources. So say for example, if their clinic is double booked, triple booked, and they have a patient coming in who doesn't speak English as a first language.
they might think, do I really have the time to go through the motions and get an interpreter or like it really explained to this patient or would they just let that patient sort of go? And then what was also brought up is for translations and stuff, the cost of having that all done and the study site incurring that cost. And then from the patients, I think a lot of the literature, a lot of stuff I've read was...
sort of patients having mistrust and things like that, but I didn't really find that with my study participants. It was more that they weren't being given the opportunity. And then in cases I had as well, it was that the study burden was too much and they didn't have somebody to take them to the clinic X times a week, which would be obviously more of a burden than just going in for your treatment, or they had childcare responsibilities and they didn't have anybody to look after their child.
while they recovered from surgery and things like that. So that was sort some of the things that I found.
Naman Julka-Anderson (08:38)
Did it surprise you then around the mistrust? Because obviously whenever you look up trying to get global majority people or marginalised groups into clinical trials it always talks about mistrust.
Georgiana (08:49)
I think maybe that, from what I've read anyway, that comes into it a lot more with people from ethnic minority backgrounds. And my research is in bladder cancers and head and neck cancers. And in that group, the vast, vast, like more than 90 % of the people who are getting those cancers are from white ethnic backgrounds. The sort of under-representation I was seeing was more socioeconomically deprived patients, especially I did the study in the North of England.
So I wonder if that's why that wasn't really what I saw. I was getting a lot of patients just not knowing anything about research at all and then, you know, not asking their doctors maybe if there was a trial for them because they'd never considered that. I had one patient say to me, I've never thought about a trial or research or what that might be until I got ill. That's the first time anybody ever said anything to me. So yeah, I think a lot of it is about that awareness before people get ill.
and that's maybe what's lacking.
Jo McNamara Rad Chat Host (09:44)
Do also think sometimes it's around the design? Like I've designed research before and you know, you kind of do a nod to, okay, these are the participants I want. This is kind of the consent form. You do a participant form, but do you really think about what are the barriers that are going to stop people wanting to be involved in this? And like you say, from a socio-economic background, anyone who's doing something for a research trial is going to potentially have more,
clinical appointments, or they might have longer appointments. And if someone is working and they're on a zero base contract, you know that that's going to have such a significant impact. So do you think it's the design of trials that we really need to think about and think actually, how can we ensure that we pay our patients for the time that they are giving to these clinical trials?
Georgiana (10:35)
Yeah, I think that's a big thing. I think if you're not considering the types of patients who you might not get into the trial at the point that you were designing it, then you might nod to it later on when you realise, oh these patients aren't coming into our trial, but by that time it's too late. A lot of our trials, so I don't think I actually said, I work at the Institute of Cancer Research in the Clinical Trials and Statistics Unit, and we're an academic trials unit, and a lot of our trials are non-commercially funded. We don't have a big commercial sponsor.
And what I found when I was doing my study as well was that in those trials there wasn't necessarily money, as you say, to reimburse patients for parking or for their lunch at the hospital. So that itself might be a barrier. But then also, I think you need to think about things like where are you opening your sites? Are you opening them in those places that have a bit more diversity? And that's the of due diligence that I think should be done when you're designing the trial, when you know, OK, this disease affects.
this population disproportionately or they have worse outcomes. Thinking about how to be intentional about the design of your study at that point.
Naman Julka-Anderson (11:34)
It's a bit hard to know what you don't know though, right?
Like obviously some studies will get loads of money funding-wise from like NIHR or something and they want PPI, they want everything. You can tick all the boxes but there's always going to be something you've missed. And I suppose that's the thing with some of the really big clinical trials that have now got like 10 years of data but they've actually missed quite a lot of the population beforehand but it's almost too late because that trial has shown it's safe, it's changed practice, you've got to keep going with it. I don't know how you balance that then.
further down the line.
Jo McNamara Rad Chat Host (12:08)
don't you think it's frustrating? Because, like, for some of these big trials, that it's heavily publicised that they're not inclusive. Why then is that not then taken into consideration for people when they are designing their trials? You think it's been heavily documented? I don't know, sorry, I jumped in there Georgiana. Something I get really frustrated about because you can imagine, can't you? It's almost like being told
Georgiana (12:08)
Yeah.
Naman Julka-Anderson (12:10)
Of course it's frustrating.
Georgiana (12:28)
No, it's okay.
Jo McNamara Rad Chat Host (12:34)
something factual and you dismissing it straight away and going well I'm gonna find it out myself it it it must just be frustrating
Georgiana (12:45)
Yeah, and that was definitely a problem. So I started my PhD three years ago in 2022, and over the last three years there has been so much progress made. So I would write introductory stuff for, you know, bits of work, and in my introduction would always be there is a massive lack of quantitative data on who actually participates in trials. And that has got a bit better. But still, there's no sort of standardisation, there's no sort of obligation to collect that data.
A, collect that data and B, actually publish it and monitor it with a view to see if your trial is inclusive rather than just to address the research question. You you might look at age in relation to the impact on overall survival because that makes sense for your study, but you might not look at it to see if your trials are actually inclusive. Yeah, and that's just something that, as I said, is getting better and there has been a move towards some...
legislation but guidance so like the trials journal is stipulating now or they're starting from January that you need to report on the demographics of your trial participants and how that relates to the incident population and what you expected versus what you actually got and why you think all that is which i think is a great move and i think other journals should do it as well.
Naman Julka-Anderson (13:59)
I completely agree. I've just finished a literature review and I've gone back from the 1990s. I could only include I think four or five clinical trials to do with skin reactions and specifically around people of colour. And I think I went through 10,000 different articles, but every time in the methodology it says, yeah, we captured demographics. You look at the table and it's like age and I don't know, breast size for like a breast trial or something and that's it.
It's like that's not all the demographics, because if you think of all the, I don't know, like multivariate analysis and stuff we could be doing now and all of that past data, we just can't. Because every trial is slightly different, all the literature reviews, observational studies, yeah, it's really difficult. I think I struggled with that, just thinking, there must be more than we actually think there is, but I think I struggled to scrape stuff through my inclusion just to have more to write about. But it's probably something you've kind of come across, as you said, with your chapters.
Georgiana (14:53)
Yeah, you would think and even in, I had to look at our trial data, even in those trials that collected things like ethnicity, there was a lot of missing data and I found that as well. didn't audit at the hospital I ran my study at and ethnicity was just so poorly collected. And when I asked people about why they thought that might be, they said that it had come from the recruiting GP or the recruiting hospital.
and if the ethnicity data wasn't there then they just didn't ask for it. But I thought you'd ask about other things that maybe you don't find like sensitive. You know they're asking about, I can see in the hospital notes, they're asking about social history, who do you live with, you know, what kind of house do you live in, all that sort of thing. But they just wouldn't ask about ethnicity which I found strange.
Naman Julka-Anderson (15:36)
Yeah, I still
don't get it. I don't see why people are sensitive about asking someone's background. I think for the sake of knowing that you're personalising care and personalising medicine and whatever, signposting to right resources, but then I suppose it might be the cascade effect of, if I ask I've got to find out and actually I don't know the answer.
Jo McNamara Rad Chat Host (16:02)
So in terms of you giving advice to researchers out there based on the work of your PhD, what would you like them to consider when they're trying to develop an inclusive research trial?
Georgiana (16:17)
think it would be a really good step in the right direction if people just had a look into even just the incident populations. Also, I don't know if people are aware that this is available sort of so publicly, but I used NHS Digital published treatment data broken down by lots of different demographics and I found that really helpful in identifying who sort of was treated for the cancers. So I think stuff like that does exist out there but isn't necessarily very well.
broadcasted and people don't know about it so yeah I think just meaningfully trying to find out about your population and then also in terms of people who are recruiting to trials just to maybe try and consider your own perception of people and maybe it's difficult because you need to think even people who think that they're not you know I'm not saying people are racist or like biased or anything like that it's the unconscious bias
that really is a problem and I think people really need to, for want of a better phrase, just check themselves and think, okay, am I looking at a patient who maybe isn't very good at attending appointments or lives far away and thinking you just wouldn't be great for a trial so I'm not even going to speak to you about it? And just maybe trying and flipping that and thinking, okay, maybe I'll try and talk to this patient about a trial if they're not interested, that's another thing, but to sort of gatekeep that opportunity is a big part of the problem.
Naman Julka-Anderson (17:34)
Kind of linking to that, what's your experience been working with PPI groups? So obviously setting the study up and then doing your research etc but because you often get like hospital PPI groups are very like professional patients.
Georgiana (17:49)
I found that difficult, especially within the scope of a PhD when I don't have that much time and thinking, okay, I really need to get the study on the ground and I really need some PPI now. So a lot of what I did was just finding people quickly and conveniently. So I use like the NIHR people in research page, which is great. And I did get some diversity in terms of lots of different types of cancers and ages and backgrounds and that sort of thing and accessibility requirements. But
the issue was that all of these people, as you say, were well-versed in research. They all had access to a computer and all of this sort of thing, which the patients that I ended up working with, that wasn't necessarily always the case. And, you know, I went through so many iterations of my patient information material with the PPI advocates that I worked with. And it was so different from when I first wrote it and we added an infographic and we did all of this stuff. And then I still...
got to actually doing the research and I would have been trying to recruit patients and I'd phone them and speak to them and they'd be like, oh, I didn't read the patient information sheet, it was too long, can you just talk me through it quickly? And I was like, okay, obviously you've been given a big stack of paper and we can never get to a point where that doesn't exist for a trial that's needed, but yeah, with the best will in the world and even though it changed so much, it still wasn't appropriate.
Jo McNamara Rad Chat Host (19:12)
It's really interesting you say that because none of them will be nodding because we went to the International Anal Cancer Conference and they had researchers there. And whilst they were presenting, they were saying that one of the barriers was just how much information you have to give patients. But to the extent that, you know, you've got 17 pages and it's bad enough now, if you go onto an app and it says read terms and conditions, everyone goes scroll, scroll, scroll.
Georgiana (19:41)
You
Jo McNamara Rad Chat Host (19:42)
Yeah, click
on that. Whereas obviously for a research trial, it's paper based and you're sitting there and you're potentially, you know, having a cup of coffee thinking, I've got to read 17 pages. And especially for someone who doesn't read, it's really overwhelming and challenging. So you can definitely understand why people go, yeah, that's not for me, from the off, let alone before they kind of get into the crux of it.
Do think we need to design that information in a more inclusive way?
Georgiana (20:13)
I think so. think so. So for example, for the one I had, obviously you've got to include all of the like GDPR information, the confidentiality and all of that stuff that you can't really write in an accessible way. And that was about half of it, but that's a legal requirement to have in it, right? So I wonder if I know there's like easy read versions and stuff and people are doing videos and stuff like that, but there's always that concern that you're never going to be able to reach everyone. You know, people don't have devices, people, things like that. So I think it's...
trying to provide the information in different ways as far as possible, but also appreciating that pretty much no matter what you do, you still aren't gonna be able to reach everyone. So what is important again is the role of the recruiter and how is the person who's first mentioning the trial to the patient speaking to them, are they giving them the opportunity to ask questions? And from interviews and stuff with patients.
lot of them said the reason why I decided to do the trial was because the person who recruited me, I liked the way they spoke to me and they answered all my questions and I never read the patient information sheet but they called me afterwards and checked on me and then I wanted to do the trial. So I think that is really influential particularly for those patients who don't find patient information leaflets that accessible.
Naman Julka-Anderson (21:26)
I think there's also to consider the extra complexity of they might be starting a course of treatment and they've already got all of those emotions, know, physical, psychosocial, mental, everything, all the side effects and then you're giving them another... I don't think my... one of my PISs was like 10 pages long. Half of it was stuff that I hadn't written, it was all the legal stuff and bits that the PPI group had asked me to put in but no one read it, went straight to the end, signed it and that was it, so...
but then you've got all of that information you want to give them and obviously you want to do it right if it's your first study, don't want to do anything illegal but yeah, it just seems it's quite quick I think unless there's a drug or an actual clinical intervention then people seem to read it obviously more
Georgiana (22:08)
Yeah, I felt a bit frustrated as a researcher, having put all of that time into developing my information and going through so many iterations with the research ethics committee and then I'm just getting patients saying, didn't read it, could you just explain it to me? But it was definitely a lesson for me and you know, I was using it to talk patients through anyway, so I guess it was helpful, maybe more so for me, which obviously wasn't the idea but...
you know, that's what ended up happening.
Jo McNamara Rad Chat Host (22:44)
How does someone from the clinical research team actually then kind of filter that out to people who are then recruiting the patients? Because obviously I would imagine they're quite specific members of staff and how does, how does information of trials get to them?
Georgiana (23:04)
So from what I was hearing from patients, it was a bit varied. So sometimes I'd sit in, all of, as part of my study, I did ethnographic observations, which is basically sitting in a room and writing down everything that's happening to really get a picture of what's going on ⁓ in the treatment consultations. And I was seeing a consultant introducing a trial to a patient. So they'd say, we've got this trial and maybe roughly explain if there's randomization or what treatment they might have.
And then if the patient seemed interested, they would then send them off to a research nurse. But then I also spoke to patients who said they had their appointment with the consultant and then they went outside and then a research nurse came and grabbed them and said, hello, do want to come talk to me? So I don't think there was maybe a set process. And also because I looked at two different cancer types, it was very different. So on the bladder side, the research team was really small and the consultant was pretty much doing all the recruiting and then the research nurses were doing all of the sort of admin-y stuff.
Whereas on the head and neck side, they had massive research team. So it was more the research nurses and the consultant would maybe just give a nod to it and then send them off.
Jo McNamara Rad Chat Host (24:08)
So how do the consultants find out about the research? Because I would imagine there's hundreds of thousands of research trials going on all around the country. How do they kind of pick up on, ⁓ that research could be for my patients and I'll recruit to it.
Georgiana (24:25)
I think they would, from speaking to them, they would look out for trials going on that they thought sound interesting and that they thought, say for example there was like a vaccine trial coming in on the bladder side which the consultant I was working with thought would be good because they'd seen positive results with vaccines in other cancer types. And then there's this monthly meeting where consultants will bring, sort of pitch the trial to lots of different people and then...
they would come to a decision as to whether they were going to open the trial. But those meetings were described to me as very sort of not very accessible and often people wouldn't really want to be there and they weren't being run very often and people would kind of go in with a mindset to say no. And that meeting itself was actually described to me as a barrier by one of the consultants because there was just so much logistical.
So many logistical issues going on with just trying to get a trial to set up.
Naman Julka-Anderson (25:20)
You kind of brushed over the ethnographic stuff. Can you tell us a bit more about that? And how did you find it?
Georgiana (25:24)
Yeah.
Sure. So what I did was lots of observations. So the idea was that I would go and sit in a treatment consultation and just take note of everything that was going on. So you go, you sit, you take note of like your environment, who's in the room, what people are wearing. It's not like anything I've done before. And then you want to sort of try and capture not just the words, but
the tone, the body language, you know, is a patient asking questions and they sound unsure, are they sort of withdrawn? You know, does the consultant seem like they don't have time and they're impatient and they want to get the consultation moving? Have they brought anyone in with them? What's their support system like? So it can really tell you quite a lot. So I did observations of six different clinics, I think. So,
As I said, it was in the north of England and I live in London, so I would go to the trust for sort of two weeks at a time over about a six month period. So I went, I think, four times. And you literally just sit in clinics and you scribble, scribble, scribble. My arm was absolutely killing by the end. And then you transcribe it. So you've got a digital sort of copy of the notes and then you go through and pick out themes. So one might be, for example, if... ⁓
a patient is being offered a trial and the doctor is wondering about whether they're actually eligible for the trial and then they say, actually you're not eligible, sorry, and then that patient doesn't get offered a trial. That would go down as a barrier about the eligibility criteria. That was just an example off the top of my head, so don't know if I've just rambled about ethnography.
Naman Julka-Anderson (27:00)
No, not
at all. I think not many people would have heard of it. Do you then feed back your ethnographic observations to the team?
Georgiana (27:08)
I will do, yeah, once I've written the sort of final report. What I did before I started, people kept saying I wasn't that really biased though because people know you're watching them and I was worried about that but I went to the hospital and hung around with the clinicians I was going to be shadowing for about a week beforehand. So I do think they got used to me and you know they would say things in between patients and stuff and they obviously knew they were being observed, they'd consented to it.
But yeah, sometimes they'd say things like, is that on the record? So I think they didn't, you know, they weren't worried about me being there. And the patients as well, I was concerned, but not a single patient told me that they didn't want me in the room. I don't think they cared. You know, what's, there's often a lot of, especially with head and neck, there's often a lot of people in the room, people doing scans and the consultant and nurses, or there might be a medical student. So I'm just one more person in the corner who isn't actually asking them any questions or anything like that. So.
⁓ I didn't find that they minded.
Jo McNamara Rad Chat Host (28:06)
It can be quite exhausting, can't it? Because I always find that whenever I do it, it's a kind of thing, it's just taking some notes, but it really takes a lot to be actively listening for that length of time. And also not necessarily just listening, you're also obviously observing and taking on the emotion of the room as well.
Georgiana (28:26)
Yeah, it's tough. It really, because you can't just zone out. You you zone out, you've just missed maybe a chunk of conversation and maybe something important's happened. And then I'd often say leave the clinic and then be walking down the road and sort of get my phone out and make a voice note of something that I'd thought about as a result of listening to those consultations. So a lot of it was, you know, picking apart my voice notes and writing those in my little little notepad and making sure that they were observations as well. So it kind of doesn't switch off when you leave the clinic.
it's all those, it's all that thought that you're having in between as well, which is important.
Naman Julka-Anderson (29:06)
Did your perception of treatment pathways change at all?
Georgiana (29:11)
I don't think I had a very clear idea of what went on before, so it helped me to understand it better. So that was a benefit for me, I suppose. It's given me some better context to the patients that are treated for the cancers that I look at. So I did find that very helpful.
Naman Julka-Anderson (29:29)
I would love for more researchy people to come into clinics, sit there for a week and see it day in day out so they understand the nuances. Because I think then they might consider earlier down the line with the methodology some things might be tweaked.
Georgiana (29:43)
It's tough because as a researcher it's very easy to sit and be like, well this is the problem, why aren't you addressing it? And you know there were some quotes, say from my interviews from clinicians, so I had somebody say that they favoured patients who they thought would come to appointments and stuff for recruiting to trials or they wouldn't bother with patients that didn't because they had to worry about, as a PI, had to worry about the integrity of the trial.
and making sure that patients didn't drop out and things like that. And I think it's very easy to look at that as somebody who isn't involved and be judgmental about that. But now I can appreciate it. Seeing that clinic, seeing all the patients that were coming in and out, it's constantly overrunning the clinicians. One of them said to me that they hadn't had lunch in their clinic for over a year. So it really gave me context to understanding that sort of perspective and to not be judgmental because it's often
a systemic issue and it's not really in their control and they're just human as well.
Jo McNamara Rad Chat Host (30:48)
Was there anything that really surprised you the most from the whole pathway that you observed in your research?
Georgiana (30:59)
I guess that it can actually be quite slow. I don't know. I know that maybe isn't that shocking from the NHS, but especially with trying to recruit to trials, for a lot of them, there'll be a very specific time in which you can have a treatment for you to be eligible for the trial. And in some cases I was seeing patients who maybe had been eligible, but then there was some delay with say a biopsy or a sample being tested. And then in that window,
they become ineligible because they haven't been able to have the treatment that they needed. And then I was getting clinicians say to me, know, if a patient's really poorly and they know they have to go through all of that, they would be less likely to try and put them on the trial because they feel protective of the patient and they don't want them to, they don't want their disease to progress while waiting for that. So it's just very complex and it's really not as easy as saying, you know, we need to just put patients on trials because there's a lot of factors at play and...
I don't think that clinicians inherently look at patients and, well, not really, think, I don't want to put you on a trial.
Naman Julka-Anderson (32:11)
So you're coming to the end of your PhD before we ask you what's next. If you could go back in time would you do a PhD again?
Georgiana (32:19)
I would, even though as I said I wasn't necessarily gagging to do one in the first place, I think it's a real privilege that I've been able to spend three years thinking and researching things that interest me and getting paid to do that. Like that's really cool and you know no one's ever gonna pay me to just do things that I'm interested in ever again really so I don't regret it at all and I hope that something useful comes out of it.
Jo McNamara Rad Chat Host (32:57)
For any patients listening, if they're thinking, no one's ever approached me about a clinical trial, can I be involved in the clinical trial? What advice would you give them?
Georgiana (33:07)
I would really love it if patients felt empowered to ask their caregivers, their doctors if there was anything for them, because then that kind of removes the, well not removes necessarily, but it mitigates a bit the gatekeeping aspect. You know, ⁓ as I said, a clinician's thinking, I don't really want to ask you, but a patient said, hello, is there anything for me? They might feel more inclined to take the time to do that or to send them to the research nurse and make sure they can do that. But yeah, as we've discussed, that barrier to awareness, I think is...
is stopping that.
Naman Julka-Anderson (33:45)
So thinking about proton beam therapy related trials, is there a barrier if there aren't as many centres across the UK?
Georgiana (33:53)
You would think so. So as far as I know, there's only one in Manchester and one in London. And we ran a clinical trial looking at proton beam therapy. that was one of our, I think there was four trials of all of our trials, which offered some sort of patient reimbursement. And that trial was one of them because obviously patients were having to travel far and be put up in a hotel. So I think I did actually have a look at the sort of socioeconomic.
statuses via, I don't know you're familiar with the indices of multiple deprivation and you can plug people's postcodes in and it will basically assign you a number based on how deprived the area that you live in is. And I'd had a look at that and there was no difference between the relative deprivation of people in that trial versus in all the other head and neck trials. So I think they there did quite a good job of making sure that that wasn't a barrier.
⁓ But, you know, that might not be the case for every child. They might not have the funds to do that. So I could understand that that might be a barrier.
Jo McNamara Rad Chat Host (34:59)
So I think we could probably talk research trials all night. But we are coming to the end of the podcast episode and we always end all of our podcast episodes with the same kind of question is, you know, what tips and advice would you give for the listeners out there?
Georgiana (35:15)
So I guess I touched on tips for patients and healthcare professionals already, but for students, and definitely what I found is that you're not going to be able to do everything that you want to do within the scope of your PhD. You're not going to be able to solve everybody's problems. And I think that held me back quite a lot because I was just trying to think, you know, can I address this and this and this, but at some point you need to just get on and do your research. I think I've kind of taken the perspective now that, you know, if the research I've done has helped.
one healthcare professional or one patient or just people think differently about the way they recruit or change their perspective on clinical trials, then that will make me happy and that will be a positive outcome of my PhD. So don't get disheartened is my tip.
Naman Julka-Anderson (35:59)
That's a really nice way to end. think research can always feel daunting, especially if you don't know where to start. But yeah, that's really nice. So thanks very much for coming on. It's been great to have you.
Georgiana (36:09)
Thanks so much for having me.
Naman Julka-Anderson (36:11)
Thank you everyone for listening to Rad Chat with me, Naman Julka-Anderson and Jo McNamara. Our next guest to feature will be Dani Billington as part of our Living Within Beyond Cancer series talking about menopause and cancer. Thank you for listening and take care.