Transcript: RFTRW S09E02

Dr Zsofia Demjen and Dr Talia Isaacs

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00:00:02 Female voiceover  

You're listening to an IOE Podcast, from the UCL Institute of Education. Powered by UCL Minds.  

00:00:22 Male voiceover  

This is Research for the Real World. Conversations with researchers about the paths they've taken to to shape our everyday lives. 

00:00:43 Dr Sam Sims 

This is Research for the Real World, I'm Sam Sims. I'm a lecturer at the UCL Institute of Education, and on today's episode I'm talking to Zsofia Demjen and Talia Isaacs, who are both associate professors working in the area of applied linguistics. 

Zsofia's work is focused on mental health and healthcare, where she's interested in the language and discourse around depression, psychosis, vaccination, and cancer. She's also the programme leader for the MA in Applied Linguistics. Talia's work is focused on language assessment and health communication, and she is an editorial board member of the journal Language Testing. 

Today we're going to be discussing how we talk about some of the most important topics, including health and illness, as well as important issues around consent in healthcare and healthcare research. Zsofia and Talia, welcome to the podcast. 

00:01:38 Dr Zsofia Demjen 

Thank you so much. It's great to be here. 

00:01:40 Dr Talia Isaacs 

Thanks very much. 

00:01:42 Dr Sam Sims 

Zsofia, Boris Johnson is fond of military metaphors to describe the battle against coronavirus, and I think he's talked before about putting Britain on a war footing and more recently, about this image of the scientific cavalry coming over the hill with the vaccines to save us. 

You're an expert on the use of metaphor in language, so I mean, let's start with the basics. What is metaphor and then why do we tend to reach for it, for metaphors in cases like this situations like this? 

Yeah, those are very good questions. So metaphor is something that is absolutely ubiquitous in language. It is basically when we talk about something in terms of something 

else, where some sort of similarity between the two things can be perceived. So if we're talking about sort of the efforts that the government and the National Health Service are going to roll out vaccinations, then there are aspects of that experience. For example, that there is a lot of effort involved. It will requires organisation, it requires people working together, people taking orders and carrying them out, which has a lot of similarity with what might happen in a war situation within the military, with soldiers. And so this similarity that is perceived is sort of highlighted by talking about this national effort in terms of specific military language. 

00:03:07 Dr Sam Sims 

And why do you think, I mean you mentioned there that it's sort of, you know, all pervasive aspect of the way humans communicate Why do we reach for metaphors? What sort of purpose? What role did they play in language? 

00:03:21 Dr Zsofia Demjen 

There is a sense in which metaphors can communicate things much more vividly, and they can sort of say more than the sum of the parts so they can bring to the fore all these different connections that you would have to sort of lay out explicitly if you wanted to communicate the same sense of urgency, of collective effort required. 

And metaphor also tends to be used particularly frequently in circumstances or in describing topics that are subjective, that are sensitive, that are somehow very personal or abstract. And often we then talk about these things in more physical terms, and this helps us, some would say also to understand what's going on, but certainly also to communicate about it among each other. 

00:04:11 Dr Sam Sims 

And Szofia you've analysed the use of metaphor, including sort of battle type metaphors among cancer patients, in your research in healthcare. How did you come to be interested in this subject? And what if you learn about why people use metaphors when talking about subjects like cancer? 

00:04:30 Dr Zsofia Demjen 

So I've always been interested in language and communication in the context of health and illness. 

And after my PhD I had the opportunity, I was fortunate enough to have the opportunity to join the Metaphor and End of Life Care project which was run at Lancaster University and as the title suggests, this project sought specifically to understand how metaphor is used in end of life care contexts. As you said by clinicians, but also by patients and by the informal carers who care for them. 

And so we focused in this context on metaphor specifically, for the reasons that I outlined that the experience of the end of life, and often that tends to go hand in hand with the experience of cancer. Metaphor is particularly appropriate for use in that context, because the experience is so personal. It's so subjective it's so different for every person and involves a lot of emotion. It's very abstract. 

So metaphor really does help to communicate about these types of experiences, and we were interested to see whether there were any differences between the different groups that we were looking at. We looked at interviews, we looked at online forum contributions for all three participant groups, and we looked at metaphor in general, but actually we found a lot of war metaphors being used, and that's in the context of war metaphors being quite controversial in and around cancer. Certainly since the time of Susan Sontag, but potentially even before that. 

And there's been a lot of media attention on that in the same way that there is now media attention on the war metaphors around covid, and nevertheless we were finding war metaphors, among many other metaphors, that's crucial to point out they were by no means the only ones, but we were finding a lot of war metaphors in particular used by cancer patients. 

00:06:19 Dr Sam Sims 

Can you give us some examples of these, Zsofia? Presumably this is, you know people saying, as you often hear on the news that so and so's lost their battle with cancer, for example. What are some examples of the metaphors that get used by clinicians and patients in this sort of setting? 

00:06:32 Dr Zsofia Demjen 

So that would be one example in that specific example is why the metaphor is so controversial, and why it's often criticised. The war metaphor is very good at motivating, at suggesting the kind of effort and investment and energy that is required for these types of experiences, but it has the downside that if you were, if you sort of follow the framing through to the end, then if someone doesn't recover from cancer, then it suggests that they lost the battle, and that's precisely what you what you've made explicit. 

But of course, that puts a degree of individual responsibility on the person. That is not fair, because most people can't choose whether they recover from cancer or not. 

So in the in the very first post, then in the title of the thread it was made explicit that here, we're joking about cancer and if that's too bad, too sensitive for you, please don't come. And on this thread, the participants were developing all kinds of fantasy scenarios where they were each soldiers or members of an emergency extraction team. They would fight the hospital system. They would go and run rescue missions to bring people out of hospital. All of this hypothetical, of course. 

But they were each contributing. They were all their parts. Some of them would bring a tank and this tank was actually someone's wheelie bin, and someone else would say, oh, we could use cotton wool as our ammunition. So there was a lot of warm framing lots and lots of people contributing, but it was all because it was done collaboratively, it actually had the function of building a community of allowing people the opportunities to see themselves in a particular light that they thought at that point in time was beneficial for them. It was fascinating to observe, so I think one of the key messages to come out of that particular study was that it's not really about the metaphor. 

It's not a question of whether it is the war metaphor or the journey metaphor, which tends to get sort of suggested as an alternative. 

The journey metaphor can equally be used to suggest sort of disempowerment and a lack of choice that people have about which routes they take, for example. 

It's much more about who uses the particular metaphor, when, where and how. 

And what is appropriate in one context or for one person will be different from one day to the next. 

00:09:25 Dr Sam Sims 

Where did you sort of take the results of this research? Did you sort of go and talk to clinicians about this afterwards and sort of discussed the way that they use metaphor? 

00:09:33 Dr Zsofia Demjen 

Well, we did. We spoke at various sort of public engagement events. We spoke at hospices, training events. Some members of the team spoke at Cancer Research UK, so we have taken this in lots of different directions, but I suppose another key thing to have come out of the research was that there is such a variety of metaphors out there that people draw on because it helps them express what they're feeling. 

And the sort of public debate around metaphors and cancer tends to focus very much on the battle metaphor versus the journey metaphor, and actually a really, really important thing is that we need to provide people with options, as many metaphors as possible should be on the table. 

Because the feelings around this experience are just so complex and different metaphors are useful for highlighting and backgrounding different aspects. So one of the sort of more exciting things that that came out of it, which is also sort of a physical product, is something that we've called a metaphor menu, and this is exactly what it says on the tin. So it's a metaphor menu. It's a menu like you would have in a restaurant. 

And which lists different kinds of metaphors that we either came across in our different datasets, often used by cancer patients themselves, but also metaphors that people who came into contact with our work, who took part in our engagement activities actually then volunteered , then contribute it to us, so they may have had cancer in the past, or they may know someone who had cancer, and these were metaphors that they found helpful for one way or another, and we collected all of this into into a little menu before covid the use of the menu was sort of being trialed in the North of England in an oncology clinic. 

And we also introduced it at the SRC Festival of Social Sciences. 

The idea with this is that it could be something that is lying around in oncology clinics in the waiting rooms while people are waiting to see their doctors and the hope is that they might pick it up, leaf through it and it would inspire them to be able to put into words how they're feeling on that particular day on that particular occasion, because often it is really difficult to do so. We felt that if we could provide a range of options, perhaps there will be something amongst them that will resonate with that person in that moment. 

00:11:53 Dr Sam Sims 

Yeah, so almost expanding people's vocabulary of metaphors that's available to them. As you say, express the way that they are feeling about their experience. That's remarkable. Thanks for sharing that. So just going back to covid for a minute, 

Boris Johnson's scientific cavalry have now come over the hill in quite a big way in terms of, you know, providing us with, you know, scientific findings and trial results on the efficacy of different vaccines and so on. And as I understand it, the UK is, has done a comparatively good job of setting up these big trials to test these new vaccines and recruiting lots of participants into these trials to actually, you know, provide us with those crucial data and the findings. 

And of course, this view rests on people willing to take part in these trials, and so you know that recruitment process and the important sort of aspects of consent for participating in those trials is a critical part of the way we do science. 

And Talia, I know that you and Zsofia are working together on a project kind of investigating how we go about getting informed consent from people in in trials. Could could you just set out for us briefly what it means to recruit somebody into a clinical trial and the importance of consent in that process? 

00:13:17 Dr Talia Isaacs 

Sure, yes. This was an article published in the journal Health that included also in addition to Zsofia, Jamie Murdock at the University of East Anglia, and Fiona Stephenson, who's at UCL in Primary Care and Population Health. Maybe I'll just tell you a bit about a couple of anecdotes that got me interested in this area of Health Communication, generally speaking and specifically recruitment into trials in the ethical dimension. So I lived in the French speaking province of Quebec, Canada in my 20s and early 30s, and that was before I moved to the UK and my experiences were not cancer related, but at a time in my life when I was feeling quite invincible. So in my early 20s I became ill for a full year for condition that baffled doctors and took months to diagnose. 

English is my first language, and my French was pretty good but I was really challenged to try to function in French, with my non dominant language. I found conveying and understanding, you know, descriptions of symptoms like having an enlarged spleen or elevated platelet count was difficult. And of course this difficulty is compounded due to the emotive element when trying to function in a second language. When you're a patient and are feeling so very vulnerable. A few years later when thankfully I'd recovered from that condition, I was diagnosed with an unrelated chronic condition. 

I managed it pretty well, but at the time of being diagnosed I was quite devastated and was trying to process what it meant, and so during the appointment before I knew what was happening, the physician picked up the phone and said good news, we have another one for you and he passed on my details to a person who I now understand must have been the trial manager. This was not an ethical way to recruit patients to trials. I think he was quite delighted that I had been diagnosed, because that meant that there was one more patient that could be involved in a trial which needs a large sample size in order to have enough statistical power. But of course I was quite confused and ultimately my mother convinced me not to participate in the trial as I'd only just been diagnosed. We didn't know whether I had a mild or severe case, and she suggested that I try the conventional treatments first, and so I think these experiences have really shaped my research and ideas in the area of recruitment to trials. 

00:15:46 Dr Sam Sims 

Here we've got a trial for presumably some sort of new treatment for the for the chronic condition that you had where they're going to test out some new pharmaceuticals or some new treatment regime and your experience was that they were seeing you as a data point for the trial rather than, you know, as a person who's dealing with you, know news about a new illness and all the sort of emotional impact that comes with that, right? 

00:16:14 Dr Talia Isaacs 

Yeah, exactly. You summarised that really well. 

00:16:17 Dr Sam Sims 

OK, and so so how did you go from there to you know, doing academic research about the way in which we communicate with people around trials and consent and recruitment and so on? 

00:16:30 Dr Talia Isaacs 

Well, that's interesting. I'm part of the trials methodology research partnership for the NHR and MRC. 

00:17:10 Dr Sam Sims 

OK, can you talk more about this idea of consent? Because this is really fundamental, isn't it? 

00:17:15 Dr Talia Isaacs 

Yeah, so informed consent really is an ethical imperative in all research that involves human participants and certainly the stakes for understanding what's involved in research are particularly high for cancer patients due to the invasive treatments that might be involved. For example, you could think of a mastectomy, or sometimes the very difficult side effects for example, in chemotherapy treatments so patients need to understand the conditions of participating in that research study and also the potential implications of participation. Things like the degree of risk that might be involved, the likelihood of eradicating the cancer, potentially prolonging one's life, etc. These are all things that need to be described you know, in the consent form and information sheet. Now, sometimes trials only really provide the only treatment option for cancer patients. 

So it's very important that patients know what they're signing up for. Certainly for all research, but as I've said, particularly in the case of trials. 

But the language in the informed consent documents is highly complex, so for trials you've got terms that are specific to, in the case of randomised control trials, which are viewed as the gold standard in health intervention research have got the randomisation element and then certain aspects that are specific to design features of trials. So it can be difficult to explain for example, simple terms like arm of a trial or placebo or control group. When we put that to patient representatives, one patient representative thought a control group meant that you know it was somebody being very controlling of you. So these are terms and concepts that are quite opaque to patients. In addition to this, there is also the legal aspect of informed consent, right that these documents serve sort of a regulatory compliance function and are intended to sort of protect against lawsuits. 

And then of course there is the medical language that is used, so specific medical terminology really can compound the linguistic complexity in terms of the information that needs to be conveyed in documents that are intended to help patients make informed decisions about whether or not they want to participate in a trial. And of course, these challenges are compounded for patients for whom English is not a dominant language and when the trial materials are not offered in their preferred language. So this led to our study where we wanted to examine the nature of language demands in informed consent documents, so when patient information sheets and then the consent form that help patients make that decision about whether or not to participate in the trial and what is involved. And part of the impetus for this study was that a lot of research, clinical trials, and trials methodology only have looked at surface measures of the language that's used. For example, the total number of words or measure of word count and a measure of readability and those measures only take into account word and sentence level and their only word in sentential. So we wanted to get at the semantic meaning and to understand the complexity of the broader discourse. So in order to do that, we used a computational tool called CoMetrics to analyse different dimensions of textual ease or language complexity, and we analyse this for the patient information sheets separately from the consent forms because of the different functions at these documents have, so patient information sheet is to really tell the patient what's going on and describe to help them make an informed decision and then the consent form is to help them affirm that they want to participate in the trial. So we compared these documents to graded readers for science textbooks. So looking at the language we needed to have an established benchmark and so we looked at graded science textbooks and the American Medical Association recommends that written health materials not exceed 6th grade reading level and the National Institutes of Health or the NIH recommends and this is both bodies in the United States, recommends maintaining a 7th to 8th grade level, so this is roughly in line with what the reading level that would be expected for the average American. So we were interested in comparing the language complexity of these graded readers at sort of 6th to 8th grade level in the first instance to see whether they were roughly on par... 

Yeah, something like that. So basically we tried to compare 6 to 8 but these were sort of US based graded readers that we used. But yeah, the idea is exactly that. So we wanted these graded readers to be on par with. I mean we wanted to see whether the language use was on par for the graded reader. 

And language complexity that is recommended in informed consent documents, and for comparative purposes we also looked at grade 11 plus so we had to go to these graded readers because they were benchmark and science was not perfect, but it was the closest benchmark that we had. We could have chosen a literary genre, but we went with science for this, so that's that, was useful. And then we looked at the nature of the language that was used on, you know several different dimensions. So, for example, we looked at narrativity. 

So how much does the text communicate? A story, an event or procedure in conversational style? So in a style that resembles actual speech? 

00:23:10 Dr Sam Sims 

Talia, would you take narrativity to be a positive aspect? Is this something that we should be aiming for to try and sort of clearly communicate in clinical settings? 

00:23:20 Dr Talia Isaacs 

These are measures that are thought to contribute to the difficulty of the text, so a text that would. In these I think the appropriateness of the measures is an important question, and it's one that we didn't really look at for the information sheet in the consent form. But what I can tell you is that these measures have been applied to, for example, graded readers in for high school students, for example, and so you would want... 

00:23:55 Dr Sam Sims 

What did you find Talia about, you know the complexity of these messages? How did they compare to these age sort of benchmarks? Textbooks from the US that you were comparing them to? 

00:24:19 Dr Talia Isaacs 

The difficulty level far exceeded what we would expect for, you know the general public to be able to understand, and there were different text complexity profiles for both of those genres. So for the patient information sheets there seemed to be high level of narrativity, which at first glance suggested greater text ease. 

And it seems that there are quite a few narrative elements. For example, Doctor, Patient, Nurse, participant, those name the actors in the story. Then you've got the setting, hospital, office, and you know that can set the scene for the action. So this would positively contribute to the narrativity compared to, for example, discussing scientific concepts or processes involving inanimate objects in science texts that are far removed from everyday conversation. But there's a caveat here. 

Which is that the narrativity algorithm, so the automatic narrativity measure that's used can't prioritise which concepts are most crucial for these informed consent documents and which ones are less important, and so this, you know, for example, the automated measures don't take into account words that have multiple meanings. So for example a word like study, you know, maybe you would think of a den or some area where you're doing work you know, rather than participating in a research study... 

Yeah, that's a great example. And then of course the word trial is also one that the algorithm wouldn't pick up right? Because it would probably think of a legal trial, so the secondary meanings certainly are not what is intended, and so we think that those probably inflated the narrativity score making it seem simpler than it actually is. What we did next was we compared the patient information sheets and consent forms to a general corpus of written British English and we wanted to see which words were overrepresented or used more frequently in these genres and the information sheet and consent form compared to in general British English. And we found that there was an overuse of you, so the second person pronoun there you, you would have an overuse of you... 

And in contrast, the consent forms had sort of these statements of affirmation. I understand that so there's, you know, statements were really there isn't much ambiguity. You're affirming that you consent to these conditions, and it's using the first person I, whereas for the information sheets it's you know the you pronoun that's used maybe could be quite confusing to patients whether you is used or I is used.. 

00:27:49 Dr Sam Sims 

So Zsofia, what do you think the implications of this study are for, you know, people designing trials, recruiting people into these important medical trials. How can we do it better given all the constraints around needing to sort of tick the legal boxes and make sure we include the right information? 

00:28:06 Dr Zsofia Demjen 

I think that there is a lot more research that needs to be done in order to be able to sort of give a bullet point list of recommendations and we were pushed to try and provide these recommendations in the study, but but we tried to steer clear of that simply because as as Talia described, it was a small data set. It was specific to one type of trial for cancer. 

So there's a lot more work that needs to be done, but it needs to be done really at the at the semantic, the meaning level and the discourse level, not just looking at this sort of automatic measures that could be applied, because as Talia described they were all problematic and you kind of need a lot of a lot of understanding of what's actually being counted, and is that valid for the particular document that that we're looking at. But it is really a fertile ground for further research and not just in the UK. 

Because problems with gaining valid consent are not just restricted to the UK, they're particularly salient in highly international societies which exists around the world. But how exactly recruitment to trials works in relation to language criteria and and how these issues are best addressed around the world? 

So one of the things that we will be doing later this year, Talia and I, is actually capitalising on a sort of budding international collaboration that we've got going, namely, our partnership in the International Consortium for Communication in Healthcare or IC4CH, and we'll be discussing this work with our international audiences in a webinar. We'll talk a little bit about our findings, but we will also be really keen to hear about the nature of this issue in other geographical locations and to understand exactly what and how we might be able to translate across contexts and across settings. We are really looking forward to to doing that and there are a couple of other projects, sort of in the works that will be taking some of these issues further. 

00:30:03 Dr Sam Sims 

That's great, sounds like really important research. I mean, we can't do these trials without participants and we can't have participants without, you know, truly informed consent. So this is super important stuff. 

Zsofia, Talia. It's been super thought provoking talking to you today. Thanks for coming on the podcast. 

00:30:22 Dr Zsofia Demjen 

Thank you so much for having us. It's been a pleasure. 

00:30:25 Dr Talia Isaacs 

Yes, thanks very much. 

00:30:28 Dr Sam Sims 

So you guys can find out more about Zsofia's and Talia's research by following @ZsofiaDemjen on Twitter, and likewise Talia @TaliaIsaacs. 

Or you can follow at the UCL Applied Linguistics Research Centre @UCLAppliedLing. If you have any questions or topics you'd like us to address in future interviews, follow the links in the show notes and you can record your question there using voice or text. And if you enjoyed the podcast today, there are eight seasons of conversations with IOE researchers, all of which are available from wherever you get your podcasts. And as an added bonus, you can find the Research for the Real World playlist featuring tracks contributed by previous guests and producers. 

Again, follow the links in the show notes to Spotify. I'm Sam Sims and this has been Research for the Real World. 

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