Episode 107: How do we explain risk to patients with Professor Mark Beresford

Join us as we return with the wonderful Professor Mark Beresford from United Hospitals in Bath.

We discuss how we as clinicians describe risk to our patients ans we look at some of the pitfalls of using relative risk, overcomplicated statistics with our patients.

If we cannot explain risk to patients how can they ,make informed decisions.

Mark moves into 'T-shirt Territory' by being our most frequent flyer on the podcast which earns him a coveted Simply Oncology Podcast T-Shirt.

Transcript

Discussing Risk with Mark Beresford podcast-20260605_114005-Meeting Recording

 Hello and welcome to this episode of the Simply Oncology Podcast. Mike, we have got back one of our fan favourites and our favourites, Professor Mark Beresford from Bath Hospital. The one and only Mark, welcome back. And Mark is now in t-shirt territory where he's going to get a Simply Oncology t-shirt sent out to him.
 Directly, Mike's going to sort that out because he is now going into joint lead with Alison Bertle for most episodes done. Today we are talking about risk and every aspect of medicine or every aspect of what we do, we need to do a risk assessment and evaluate, but none more so
 than in oncology where the stakes are so high, is risk such an important topic, Mark? Absolutely. And Mark, we've got you on this episode to talk to us. Mark, what is your interest in risk in oncology? Why are we speaking to you about this?

 BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   2:41
 Yeah, it's a good question, guys. So firstly, thanks for having me back. It's a pleasure to be here again.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   2:45
 And just, are you glad to be getting a T-shirt?
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   2:47
 I'm absolutely over the moon. It will be the pride of plates on the on the wardrobe, but.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   2:49
 Brilliant.
 And never come out. On the wardrobe, not in the.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   2:57
 Not on me, yeah. But then so risk, I think risk is hugely important in what we do in oncology these days, more so than ever, because we're using more and more treatments for relatively small benefits and putting patients potentially through many months, many years of longer term treatments. And it's really important that we get across to them
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   2:58
 Yeah.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   3:18
 what the benefits are, particularly if these things have a big impact on quality of life, with side effects, with other things that might come from them in terms of keeping within the hospital all the appointments, all the blood tests and everything that goes alongside. So we've got to get better at communicating that risk-benefit ratio to patients.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   3:36
 And you're absolutely right, because we've just had ASCO and there's been, you know, multiple key papers and trials reporting, and it reports benefit or no benefit, it reports side effects. And actually, our job as doctors is processing that.
 and then helping patients make a decision because how can you make a decision if you don't know what the risks and benefits are from it? Mike, you'll be glad for me to say the gains, pain, no goals, gains and pains. Didn't even get it right John, the treatment. He hates me saying that. So Mark, when we're talking about risk with patients, what are we talking about?
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   4:07
 Yeah.
 Well, so I guess there's two settings really. What I think we perhaps focus on today is in the adjuvant setting. So when people have had their operation or their radiotherapy and we're talking about whether or not we give drug treatment, chemotherapy and other things afterwards to reduce the risk of recurrence and what that really looks like. Because I think
 The challenge we have is, of course, patients are understandably in that situation driven by this fear of recurrence. So are likely to accept things if you offer them because the overwhelming thing in their mind is we don't want this cancer to come back. But I think sometimes people don't quite realise what they're signing up for or what they're going in for and how small sometimes those benefits might be.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   4:57
 I was going to jump in there that obviously part of it is getting the patient to understand what the risk is, but I know that, and you'll probably go into this, but there is quite a lot of data out there and there's some really interesting papers looking at risk and risk perception in oncology, both from a patient point of view and a clinician point of view. So I think
 And I think part of that is also patience.
 overestimate things like risks of recurrence, tend to underestimate things like risk of toxicity, and clinicians also underestimate the risk of toxicity, particularly in people. I'm thinking specifically in frailty, for example. So this piece, this education is both for
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   5:33
 Yeah, yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   5:40
 clinicians and for patients. How do we get both of those two people coming, two people coming together in that consultation to understand what we're actually dealing with? And in fairness, Mark, you treat breast and neurological cancers. The breast oncology world, adjuvant therapy is huge and you guys have been striding ahead with
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   5:41
 Yeah.
 Yeah, I just spun.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   6:01
 stratifying risk for a long time. So let's get into what you know about that.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   6:07
 Yeah, well, so obviously we've got all these tools, predict online and things like that, that we can look at and it'll give you these numbers of the benefits in the adjuvant setting. And I think what we fail to understand is, you know, general population's level of numeracy is quite poor. You might argue that a lot of clinicians' level of numeracy is quite poor as well.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   6:28
 Absolutely.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   6:30
 So if you ask the question, what's 1% of 1000?
 to a general population, only 1/4 of people will get that right at 0.1%. Most people can't do that fairly simple percentage. So we band these percentages around and I'm not sure they're landing correctly for many people. And particularly with this absolute versus relative.
 benefit, which is very confusing. And even a lot of clinicians won't always get their heads around this. So a good example in adjuvant breasts, we'll use some numbers. If you've got, say, an 88% chance of 10 year survival,
 without treatment and you have a course of chemotherapy which puts that up to 91%.
 So from 88 to 91% for having the chemo. So most people would see that as a 3% overall benefit, a 3% absolute benefit. You've got to treat 100 people, three will benefit from having had the chemo.
 But what often gets presented is the relative risk reduction. So in that situation, you've gone down from a chance of death or a recurrence from 12% down to 9%.
 So you've had a 25% reduction in your risk of breast cancer recurrence. And that's what the media would present. They say new drug reduces your risk of dying from breast cancer by 25%. That sounds brilliant, but actually you're only getting a 3% overall survival. So if you tell that figure to a patient, I think most patients would accept
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   7:59
 Yes.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   8:06
 on the basis of the 25, they may not accept on that 3% absolute. So it's getting that nicety across. And you can see people, even if you try and explain this to people, that they're blazing over already. And I've done this in rooms of clinicians, and you know, very few people will get that, even that fairly simple calculation.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   8:18
 Em.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   8:26
 Right.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   8:27
 I was going to say the other, the other really thing, the really difficult thing that I find to convey is what that actual end point is. So we're talking about overall survival. Sometimes it's disease-free survival, sometimes it's relapse-free survival. All of these biochemical relapse-free survival. endpoints that are really, I mean, from a trial point of view,
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   8:36
 Yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   8:50
 You just need something to measure. But I suppose what people understand dead or alive. And people understand cancer coming back or not. But I suppose the other thing is, is it dead or alive from cancer? That's in some tumour types, that's the other, you know.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   8:51
 Yeah.
 Yeah. So that's the other key thing. You've got to look at people's baseline versus incremental risk. So you mentioned earlier, Mike, that a lot of the trials, we see all this data and it's saying these percentage benefits. And you just apply that across a cohort. And of course, a lot of treatments now, even quite elderly people, will be able to tolerate. So we're talking about giving people adjuvant treatment. There might be 80
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   9:05
 Yeah.
 Mm.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   9:22
 84 years old, well, what's their chance of being alive in 10 years anyway, irrespective of the breast cancer? They'll still get the same magnitude of benefit as a younger person would, but with their baseline risk of dying of other things or other things cropping up, is that as relevant for them as it might be for a younger person? That's really difficult to tease out. And of course,
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   9:27
 Em.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   9:43
 The last thing we want to do is be ageist. We talk a lot about these days about frailty scores, but I think it's more than frailty. Somebody might be fit for the treatment, but still the benefits might not be in their interest, given that there will inevitably be side effects. They might tolerate them, but the quality of life might be less than it would be.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   9:46
 Em.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   10:02
 For the remaining few years.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   10:05
 No, Mark, I'm going to hit you with a couple of questions.
 So I try to avoid relative risk because I don't find it that useful. And as you say, you've got one shot at bringing a patient with you. So I tend to use absolute risk. Are we in agreement that we don't like relative risk? And if you say, well, nuance it, because every oncologist always nuances every answer,
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   10:12
 Yeah.
 Yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   10:30
 Is there a situation where you would use it?
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   10:33
 I don't think there is, no, and I agree with you. I think relative risk usually overstates the benefits. Yeah, yeah, yeah. But that's what we were battling against on the media and on the online community will often use relative risk. So that's our challenge, yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   10:36
 So we're parking it in the bin when we're talking to patients. Okay.
 Em.
 Because bigger numbers are more sensational. And then if you've got absolute risk, then you can at least say to somebody the numbers needed to treat to benefit somebody, which I think that's a kind of useful concept. So you're 3%, you would say we'd have to treat 33 people.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   10:51
 Yeah, exactly, yeah.
 Yeah.
 Yeah.
 Yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   11:07
 for one person to benefit and I think people can visualise that.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   11:11
 Yeah, I think you're right. I think that's a solid number to get people's head around. And I think people do better with those natural frequency formats than with percentages. So one in 33, I think, means more to people generally than 3%. And also, just on that note, I think sometimes this applies more when we talk about side effects of
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   11:20
 Em.
 Yeah.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   11:33
 of drugs. We might say one in five people will get this side effect, one in 10 will get this, one in 20 will get that. It's probably better to use a common denominator.


BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   11:44
 So to say 20 out of 100 will get this side effect, 10 out of 100 will get this side effect, 5 out of 100 will get this side effect to keep the denominator. So you kind of match up that kind of the chance of these things happening with a consistent level.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   11:59
 And the other question, you're talking about that sort of one in five, one in four.
 It matters how we frame that question as well, isn't it? So we pretend, I mean, there is always, you know, that there's this big move towards, you know, non-didactic medicine where we're sort of sharing decision making with the patient, but true, truly, completely sort of non-biased delivery of information doesn't really happen in medicine. We are coloured by our own experiences, by our
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   12:26
 Yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   12:29
 what we actually think the patient should and shouldn't have. And that comes out in how we convey information. So you can easily say you've got a one in five chance of having a side effect or you've got a four out of five chance of having no side effects. So how do you think that impacts our discussions and how do you do it in
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   12:44
 Yeah.
 Yeah, no, I think it's a really good point. So you've got this idea of loss framing versus gain framing, your chance of dying or your chance of surviving. And it means, and you can influence things by that. I mean, the best example of that, of course, is with smoking. You know, you buy a packet of cigarettes and you've got this horrible fungating mouth tumour on the front.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   12:48
 Practice.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   13:08
 That's clearly a loss framing approach. They're saying if you smoke, this is going to happen to you. There's a school of thought that's saying you might be better having a gain framing approach to influence preventative behaviours. And instead of having the fungating mouth tumour, have somebody running on the hills in the mountains or doing yoga or something and saying, if you don't smoke, this could be you.


BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   13:28
 That might be more influential in terms of affecting people's behaviour. But yeah, I think it's difficult and I think it's an individualised thing. Some people will respond more to 1 approach rather than the other.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   13:30
 Em.
 Now, one thing we talk about with risk, and you know what, I totally agree with Mike's point. I feel a bit ill saying that, but I think if I was a patient, and you know, sorry to all the clinicians who get this, but you should just say, what would you do if it was your relative? Because this whole, that's
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   13:59
 Yeah, yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   14:02
 The question I hate being asked, but it's the best question any patient should ask, because take away all the, here's all the stats, here's all of the this. You see me, you know, you can process these risks because you see it every day. What would you do? We use phrases like low risk or medium risk.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   14:06
 Yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   14:22
 or high risk, you've got a high risk of this cancer coming back. But this person over here has got a low risk. But we have no, no framework for what constitutes high, low or medium in terms of percentages or numbers. How do we approach that?
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   14:25
 Yeah.
 Yeah, I think you're right. I think that's best avoided. I think because it does mean completely different things to different people. You know, often we'll talk about high risk of recurrence and breast cancer is a good example, but you're still more likely for it not to recur than you are for it to recur. So it's a very negative way of saying it. People go away.
 And that encourages that kind of fear of recurrence as a problem. So best to try and avoid that. I think it's inevitable that we will use those terms sometimes, but we need to try and quantify them or define them or keep them controlled.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   15:11
 Because ultimately what you want to try and build for the patient is a is
 is a guide to what might happen. And what I've always struggled with, and people I've heard other clinicians say, is that...
 Patients aren't statistics. The patient in front of you is not a statistic. That patient wasn't in that clinical trial that gave you those statistics. Their cancer has never existed in the history of humanity because it is all genetically completely individual. So how do you
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   15:30
 Yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   15:49
 How much store should we, this is a challenging question, how much store should we actually be putting in? I mean, I know that's how we do it. That's how we've always done it. And that's probably the only thing we can do. But how much store should we really be putting in to all of these numbers when you're faced with an individual in front of you? Do we put too much on these numbers?
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   15:52
 Yeah.
 Yeah.
 Yeah, no.
 I think we do, and as you know, more and more work going on in trying to sort of, you know, use targeted treatments and find biomarkers of the tumour and look at the biology and genomic profiling and all those things. But at the end of the day, it's an individual, isn't it? Exactly as you say. Yeah, yeah. And I think we can only go with the evidence we have.
 but you have to make the point that it is just evidence. I think in oncology, real world evidence is going to become more important because I think the phase three traditional clinical randomised trials that we've always relied on very heavily have become just too specialised now, aren't they? They're very niche groups and they're very specific situations.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   16:43
 Em.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   16:46
 and we're probably going to have to go a bit more into real world what's happening in our cohorts of patients in the UK and do better real world studies to get those kind of better data from.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   16:57
 No, I'm oh, got an interrupting. So we said that we're going to try and avoid phrases like low risk, medium, high risk. And I almost don't want to ask this question because I'm sure when I ask it, every example you give will be something I do.
 But what are the mistakes that we as clinicians, when we're talking to patients, make? What would you say are the big mistakes that we make?
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   17:26
 So I think it's using stats and not really explaining them or exploring, getting back feedback from the patient as to what those statistics are. We talked about those little tricks you might use with the frequency formats rather than the percentages.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   17:38
 Okay.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   17:42
 I think one of the big things is honesty, to say to patients, look, we really don't know in your situation what the benefits are. We know that people, when they get an honest opinion, have a better
 perception of their care and the pathways that go with it. It's really important to involve patients in the decision making. And I think your point, John, before about encouraging that question, what would you do if you were in my situation is a really good one. I think that patients value that. Yeah, it used to be quite a scary question, didn't it, because I felt like the onus was back on you. But
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   18:16.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   18:18
 Actually, we're there to advise the patients what we think is best. We don't force things on people, but we want to give honest advice, and I think that's a good way of doing it.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   18:18
 Em.
 Em.
 Well, the title is consultant, you are consulting. So that implies giving advice. But I do also then wonder, so there was that recent, I think it was ASCO from looking at a company.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   18:27
 Yeah.
 Yeah.
 Yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   18:43
 Yes, well, that's one of my questions coming up. Go for it. Well, so yeah, there's. If that's put, if the decision has been reflected back on you, but then the patient regrets that decision, who's... So we're saying, so we're going to pull into kidney cancer at the minute. So keynote 564, giving adjuvant pembrolizumab.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   18:55
 Yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   19:03
 which is kind of transform that section of care.
 We're seeing more and more studies looking at surveying people after they've had their treatment. And this was presented recently at ASCO that roughly one in eight, people reporting regret at their decision to have the treatment. Now, of course, they may have developed the side effects or they may have
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   19:19
 Yeah, nice, yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   19:29
 you know, misunderstood the risk at the start, but that is a significant chunk of dissatisfaction.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   19:36
 Yeah, it is. And that's even after they've finished the treatment, isn't it? That that maintains. Yeah. Whereas you might think, well, once the treatment's over and done with it, we move on, but clearly you don't. And that is not at all reflected in those figures that we see presented at ASCO on the recurrence-free survival slides, is it? So yeah, I think that's a big thing. And that's a
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   19:37
 That.
 Yes.
 Em.
 Em.
 Right.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   19:57
 an issue, exactly as Mike says, when we've led people down one way or the other, then is that regret then reflected on us? Yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   20:02
 We ask a million questions during clinical trials, none of which we as trialists ever actually pull out and look at. But I don't know how often people are asked a year after treatment, do you regret having had the treatment? That would be an interesting metric to go on to the ASCO talk and the ESMO talk.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   20:23
 No.
 Yes.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   20:28
 Gee.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   20:28
 Yeah, and there is, I suppose, another...
 influence. So when these new treatments come through, there'll be headlines about them, people will come across them through online or through groups. And there's a little bit of a feeling about right of access to treatments, which might determine decision making. So a new drug comes through that might be quite expensive, people might feel
 you know, I should be able to access this on the NHS, I should be able to have this thing. It's obviously a good thing. And that, along with the fear of recurrence, can kind of give a more positive spin on getting access to the drug.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   20:55.
 I have another question for you, Mark. It relates to how we convey information to patients about risk. You mentioned a couple of the predict calculators, breast predict and prostate predict. I use the prostate predict side of things. And on there, there is a variety, the statistics are displayed in a variety of formats. There's numbers, there's pictograms, there's what's your
 Graphs, yeah, what's your, and then, and then alongside that, then you've got the side effects, how?
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   21:32
 Yeah.
 Yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   21:40
 useful do you think that is for patients? Do you think the patients actually get a lot of benefit from that or is it just is it just more paperwork they just chuck in the bin?
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   21:48
 Yeah, I think it can be useful, but you've got to use it carefully. So firstly, on the way you present the data, the numbers versus the graphs versus the charts, my feeling is that people with a bar chart can appreciate that better than they might be able to do on a line graph or a number. You can see the block of green, which is good, and the small block of
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   21:52.
 Em.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   22:09
 blue or red, which is the benefits. So I think people can, so visual aids are good for that. As far as showing people the predict figures, I think perhaps not so helpful in decision making of our recommendation, but once you've made that decision,
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   22:11
 Mm-hmm.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   22:28
 or what you feel your recommendation is, they can be useful to get that information across. So if you see a patient and say, look, I really don't think adjuvant chemotherapy is going to benefit you, the risks will probably outweigh the small benefit there would be. And people say, oh, I don't know, I want to make sure I've done everything. You can then show them that bar chart and say, well, look, here we are. We've got this tiny little yellow line that you can hardly see, which is your benefit of chemo. And
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   22:33
 Seven.
 Em.
 Yeah.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   22:53
 That can be helpful to kind of consolidate what we've said.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   22:53
 Em.
 What I find patients, you know, get most distressed about whenever I show them the predict, you know, the survival predictions is, and this is because I'm using it in prostate cancer, is that they're shocked at how many people have died of natural causes.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   23:15
 Yeah, yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   23:16
 at 5 to 10 years time. So I might be chatting to a 73 year old man who thinks, you know, I'm feeling good. And I produced this piece of paper and a picture that says, well, there's like a 60% chance you'll be dead in 10 years of other causes. And you can see that like the kind of eyes crumble a bit. You're like, I'm really sorry, but you're the national average for survival in the UK is 81.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   23:29
 Yeah.
 Yeah.
 Yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   23:38
 And you will pass that, and that's a whole other challenge you're having to kind of bring in.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   23:43
 Yeah, it is, isn't it? But I think it's shocking to see that, isn't it? But I think it is important to get their Gleason 6 prostate cancer in perspective, isn't it? And yeah, yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   23:48
 Yeah.
 Yeah, yeah.
 Do you think, we're going to bring in the AI question? The AI bomb's been dropped. Oh, there it is. There it is. Do you think that AI could be better at tailoring risk to an individual? Could it bring out more sort of patient factors, frailty metrics that you might not normally
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   23:57
 No.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   24:16
 sort of formally take into account in risk discussions, you feel it, you've got the gestalt of, yes, well, there's all of these things, but do you think that in the future there is a computer model that could bring all this together and then give you a tailored personalised risk benefit? Or is that?
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   24:22
 Yeah.
 Yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   24:37
 Unrealistic and potentially dangerous.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   24:40
 Yeah. Well, look, I mean, I guess the short answer is in the future, yes. I mean, these things are inevitably going to come. At the moment, I think all the things we've been talking about are the pitfalls that AI would have at the moment. So if you put in your Google search and Google AI or whatever you're using, you know, should I have adjuvant chemotherapy for my
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   24:40
 Haha.
 Yeah.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   24:58
 T1N0 breast cancer, whatever it is, it will come out with the data and it will be very, you know, but it doesn't have any of those nuances. It doesn't look at your baseline risk, it doesn't look at your life, it doesn't look at your quality of life, it doesn't look at, you know, so all those things that we've talked about, it's not picking up on those. And that's, I think, still where the art of oncology is, isn't it? It's all very well having an algorithm to say what people should have.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   25:20
 Em.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   25:23
 But it's communication of those benefits versus the risks is where we hopefully come in.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   25:27
 But if, as the kind of NHS England would like to see, you've got companies like Palantir building this federated data platform, which kind of runs through your care and your GP notes and all of your GP appointments feed into it. So you've got a picture of
 a genuine performance status and frailty score built up through your 60 years of previous life and with predictive tools that maybe insurance companies use you to expect your life expectancy, then it might become like the more data that goes into it.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   25:52
 Yeah.
 Yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   26:06
 It might actually become more nuanced than our... What was the word you used? Gestalt. Gestalt. What does that mean? The feeling. Your instinct. Yeah. Your gut. The gut feeling. Yeah, yeah. I thought that was it.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   26:15
 Yeah.
 I like that, I like to, I like to hope that we've still got some role to play, and then maybe that's a little bit that we can chip in, yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   26:20
 Yeah, yeah.
 Yeah.
 No, Em.
 Context is king. We've talked about the adjuvant setting. KCC Cure, Kidney Cancer Cure, have done great patient-based surveys on patient goals. And their goals are different in the metastatic setting, where we know people will unfortunately
 highly likely to die of their disease unless they die of something else, versus the adjuvant setting. Because in the adjuvant setting, there's still the hope that the operation has been enough. And in their survey, yes, recurrence and survival were important, but also avoiding long-term life-changing toxicities were important because they've got the hope of that.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   26:55
 Yeah.
 Yeah.
 Yeah.
 Yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   27:12
 In the metastatic setting, the context of the goals were different, where control of disease was paramount alongside quality of life. So we've talked a lot about the adjuvant setting. What about the metastatic setting?
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   27:19
 Yeah.
 Yes, I think again this is getting more difficult. I think we've got a new...
 new phenomenon that's happening in metastatic disease now, where people have been on many lines of treatment with metastatic disease, often quite advanced metastatic disease, but doing well for a number of years. And you know, you get periods within that time where it progresses and you change the treatment and they do well for another number of months. And I think you've seen it the same in clinic, where sometimes you're saying to people who've had six lines of treatment, look,
 you know, this liver metastasis is really progressing now, you know, the tumour’s not working. I don't think we've got any more options to give that would be helpful. And that comes as a, seemingly to some patients, a huge shock at that stage. And you think, oh, that's odd because we've been building up to this point for years, but you get used to the fact that there's always another option and there's another thing to do.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   28:05.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   28:12
 I think it's very hard for people to accept. So you end up saying, well, you know, there is another line of chemotherapy. You haven't responded to the previous five, but we could try a little bit of an oral bean or something. You know, is that going to work? Of course, you know, almost certainly no. And that's another more difficult decision because I think
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   28:21
 Em.
 Yeah.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   28:31
 patients will sometimes say, I just want to try something else. I just want to try the next thing. I'll give it a go. What have I got to lose? So that balance of kind of optimising quality of life over absolute survival shifted a little bit, I think. And it's because people have done so well on maybe their first one or two lines of treatment.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   28:48
 And it's that you'd use the phrase, what have I got to lose? Obviously, in the metastatic setting where there are tumours you're treating, you have a life-threatening, definite life-threatening diagnosis. It's not maybe, it's almost certainly.
 Definitely from a clinician point of view, I suspect we are more, much more likely to accept risk of toxicity side effects. Because of that context, as you said, John, do you think that's the same for patients? Do you think that that...
 they are suddenly much more, much less risk averse from a side effect point of view because of where we are compared to the adjuvant story.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   29:29
 Yeah.
 Yeah, I think generally there is a mix and there'll be some patients who say, look, I don't want to be messed about with, I just want to get on with it. I know this isn't going to cure the cancer, but I think they're few and far between now. It used to be more common, but now I think people will accept moving on to the next line and the next line and the next line. Yeah, even if it's going to cause definite toxicity.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   29:35
 Em.
 Yeah.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   30:09
 Yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   30:09
 completely stable with this kidney cancer. We're now six years out. We don't know what's going to happen in the future, but you know, we're in this long-term control. I don't like dropping the C-bomb, but the melanoma people would, a long-term control. That's a completely different aspect because
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   30:21
 Yeah.
 Yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   30:29
 When they're in that setting, there still is that hope of cure and still is that hope of a natural life. And then you're trying to have to modify around it. So you're not quite in the adjuvant setting, but you're still in a dangerous metastatic setting.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   30:32
 Yeah.
 Yeah.
 Yeah, and that whole issue of potentially stopping some of those long term treatments, we have it maybe with her two therapies in breast cancer, sort of 10 years on and you can't really see anything on a scan, do you ever stop or do you just keep going and keep going? And that's another whole difficult conversation, which of course is completely evidence free. So that's a very individualized.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   31:01
 Em.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   31:03
 conversation, but I would imagine your experience would be the same as mine, and most people say, well, actually, I'm tolerating, okay, I'll keep going forever.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   31:11
 Yeah, there's a fear of, yeah, what if? And you can't give any risk numbers to that because the data is, they are so exceptional, you're never going to get proper data. So that's when you have to rely on your ghoulish blobs.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   31:13
 Yeah.
 No.
 Yes.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   31:29
 Gestalt. Gestalt. Close. And not. Not the same as Gestalt, which is a town in Switzerland. All right. OK. See, we learn. We learn. Now Mark, that's been amazing. On that note, on that bombshell.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   31:46
 On that note.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   31:51
 Could you give us 3 takeaway points of your headlines for what we do about risk discussions in oncology?
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   32:01
 Sure. So I think the first thing is risk is important, and that is really what we contribute to the table at the moment as ONCOLOGYSECRETARIES. That's, you know, where we can help patients the most is by communicating this effectively and compassionately. The second point is numeracy. Be really careful with percentages.
 Watch your absolute versus relative risks, try and use.
 frequency formats, easy numbers to understand, visual aids if you can, if you have them, sometimes helpful. And the third thing is...
 you know, try and give, try and be honest and say, you know, I think it's okay to say that in your situation, I think this is what I would do. Both options are there, but I really feel for me that that's where I would sit.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   32:43
 Gee.
 Be brave.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   32:54
 Yeah.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   32:55
 Mark, that was superb. A t-shirt winging its way to the Dyson Centre in Bath. And well, wear it with pride and enjoy it.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   32:59
 Woohoo!
 I will, I will. Thanks, guys. You take care.
ROWE, Michael (ROYAL CORNWALL HOSPITALS NHS TRUST)   33:10
 Mark, thank you so much.
BERESFORD, Mark (ROYAL UNITED HOSPITALS BATH NHS FOUNDATION TRUST)   33:11
 Cheers.