In Pursuit of Development

Rethinking "evidence" — Eivind Engebretsen and Mona Baker

Episode Summary

Dan Banik, Mona Baker, and Eivind Engebretsen discuss what is meant by “evidence”, and why different people arrive at different decisions based on the same sources of evidence.

Episode Notes

In the past few decades, we have witnessed the rise and consolidation of “evidence-based medicine” among health professionals. This refers to a systematic approach to medicine in which doctors and other health care professionals use the best available scientific evidence from clinical research to help make decisions about the care of individual patients. But the COVID-19 pandemic has managed to transform what constitutes reliable medical evidence into a topic of public concern and debate. These debates have taken place within and beyond the medical establishment, such as in news reports and social media posts. And suddenly everyone began offering an opinion on the efficacy of measures such as quarantines, lock downs, school closures, and mandatory face masks. How then should we understand “evidence”? Does evidence mean the same thing in different contexts and constituencies? 

In their new book, Rethinking Evidence in the Time of Pandemics: Scientific Vs Narrative Rationality, and Medical Knowledge Practices, Eivind Engebretsen and Mona Baker argue that we ought to adopt a more nuanced and socially responsive approach to medical expertise that incorporates scientific and lay processes of making sense of the world and how we decide to act in it. Using the narrative framework, they offer a model of analysis that sheds greater light on why different people arrive at different decisions based on the same sources of evidence and why we must acknowledge their reasons for doing so as rooted in different types of rationality rather than dismissing them as irrational. 

Eivind Engebretsen is a Professor at the Faculty of Medicine, University of Oslo, where he is also the Executive Chairman of the Centre for Sustainable Healthcare Education.

Mona Baker is Director of the Baker Centre for Translation and Intercultural Studies at Shanghai International Studies University. She is also affiliated with the Centre for Sustainable Healthcare Education at the University of Oslo.

 

Host:

Professor Dan Banik, University of Oslo, Twitter: @danbanik  @GlobalDevPod

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Episode Transcription

Banik               Welcome to the show Mona and Eivind. 

 

Engebretsen and Baker  Thank you. 

 

Banik               It's nice to have two people in the basement for a change. We are obsessed with evidence at least academics like us, we want to demonstrate that whatever we do is based on sound evidence, it is based on facts, it is based on proper basic research, not just an assumption, not just something that we pick out of thin air. Yet this kind of a gold standard that we often use in terms of generating evidence, it could be through RCTs, it could be through surveys, it could be through qualitative work. Some of this is perhaps ignoring other parts of the evidence narrative as I see it. I want to ask you firstly to reflect on what is it that works with the evidence and what doesn't before we actually get to your main argument.

 

Engebretsen    The strengths there are obvious. One of our colleagues Trisha Greenhalgh from Oxford is one of the pioneers in evidence-based medicine and she has also become one of the most severe critics of evidence-based medicine. She says that even if she's critical to what evidence-based medicine has become she owes her life to evidence-based medicine. She is also a cancer survivor, and she wouldn't have lived if it wasn't because of evidence-based medicine. It started as a movement. 

 

Banik               This is the 1990s?

 

Engebretsen    In the early 1990’s, it was introduced before that, they had consensus meetings, clinical guidelines, clinical recommendations that doctors used in patient treatment were developed through expert statements, either by calling some of the big experts or by bringing them together in one room and deliberating around the issues. But now they started to get the procedure of how to actually build the recommendations on the most updated research findings. I think that had tremendous effect in medicine in the sense that many forms of treatment and other things that they were doing in medical practice didn't work, they spent a lot of resources on things that didn't work.

 

Banik               What were they doing? Were they going through thousands of studies, the best practices and trying to implement that in their patient care, is that what they were trying to do?

 

Engebretsen    Basically what they actually started to do was to summarise, they found ways of summarising research literature through what is referred to as systematic reviews, it's a way of summarising research findings, a systematic way of doing that. Also, a way of building recommendations based on those summaries of research finding rather than talking to someone in a more random way, that's the main revolution actually. The BMJ has actually described evidence-based medicine as one of the major revolutions in medicine in the late centuries. 

 

Banik               I want to bring Mona into the conversation. As a layman, I would think that this is actually good, because it's based on facts, it's based on evidence it's based on what works, something that I've been interested in. So, what could potentially go wrong?

 

Baker              Well, I'm not a layman, but I'm a laywoman. I didn't know much at all about evidence-based medicine until I met Eivind, but from my perspective as a layperson, all the strength of evidence-based medicine, as I learned it from Eivind, doesn't really justify the fact that it is based only on facts and that it ignores the very obvious situation that we are all familiar with, which is that people do not act on the basis of facts alone. People's behaviour defies facts, even defies the facts they acknowledge as facts, even when they agree that these are facts, they still behave in a way that does not accord with these facts. That is because human beings are complex beings and we act on the basis of the stories that we believe in, of which facts may be just one part and often they are conflicting with other facts that we also believe in. We act based on the values we attribute to any particular course of action we might take, we act on the basis of emotions a lot of the time, we know what is right but we still do something different because there's emotions involved. There is the care we show towards the people we believe are part of our community, there is our sense of self and the kind of person I think I should be, what others expect me to be, all that is not taken into account at all in evidence-based medicine.

 

Banik               That is really interesting. So, in this context, it seems to me there are different ways we could actually classify this kind of advice that is coming from evidence-based medicine. Or to put it differently, on the one hand, you could say that based on evidence medical practitioners are doing certain treatments, undertaking a treatment or surgery or whatever which is different I would imagine from the advice that they may be imparting. So, what you were saying just now, Mona, about human behaviour not adhering to this kind of evidence one example would be smoking right, which I could say that I would like to smoke or continue smoking. By the way I used to smoke, and I stopped a long time ago. Despite knowing all the dangers, I could still decide to smoke because it is how I am, it gives me a lot of pleasure. So, can you see that distinction or am I making too much out of this? That treatment is different from the advice which is intended to change human behaviour.

 

Baker              As I understand it, from what I've seen and read in the literature and since I've started working with Eivind, the take up of treatment is a big problem in medicine. It's no good having a lot of excellent treatments that people simply don't take up, and you can't force them to take them up. With smoking for instance, a very good example, it isn't just that it's addictive and that it gives you pleasure, if you remember back in the 60s and 50s, all the films we all used to watch.

 

Banik               The macho men, the Cowboys.

 

Baker              Oh yeah, I mean smoking, it was cool. I tried very hard to smoke when I was in my teens because it would have made me look like an adult, but I couldn't physically do it. But that's how people get to do things like smoking, not because it's the right thing to do, but because they see themselves as a particular kind of person that this is going to lend them authority, coolness, whatever you call it. So, treatment, very good treatment without take up and without changing the stories that people are embedded in and that affects their behaviour is of very limited use, I would say.

 

Banik               Having said that or identified some of the challenges in treatment and in changing human behaviour, that evidence-based medicine has faced or faces you introduce in your work, in your book the narrative framework, you don't introduce it, but you basically highlight the importance. I should say here you're not necessarily advocating doing away with evidence-based medicine, but it is more of supplementing that with the everyday understandings of how people tell stories. As Mona just mentioned, how everyday people go about understanding facts it's not about always being rational, being educated, being totally aware of all the alternatives and then making a choice it is more about perhaps impulse as you see it today, and that's the kind of attitude I understand the narrative framework is advocating.

 

Engebretsen    Yeah, I think so and actually the pandemic is a very good case for us because it has been also a crisis of evidence. The pandemic has also become an infodemic, as many people have said, the huge spread of disinformation. We do not deny that there has been a lot of disinformation related to COVID and we do not try to argue in our book that every story is as good as another, not at all, on the contrary, we try to say, OK, we have an infodemic here how can we best solve this problem? How can we address this problem? Well, we cannot address this problem of the infodemic by just providing more information but by finding a way for this information to make sense to people, that is through stories, and therefore we need to engage with their stories. We say in our book that we need to attend to people's stories we need to acknowledge the values and principles that underpin these stories, and we need to assess and, when necessary, contest these stories based on the values that the stories encode not based on some universal ideas or universal values.

 

Banik               Now that we've identified certain challenges to that evidence-based medicine approach, what would be the main added value of the narrative framework? Is it that it strengthens the evidence even more, or is it more about influencing people, using language and rhetoric that appeals to people and thereby you can get them to change behaviour without it necessarily upsetting the evidence.

 

Baker              There are two ways in which we use narrative in the book, the first assumption is that all knowledge is configured narratively, which means that in order to understand why people are behaving in particular ways you have to acknowledge that people are instinctively narrative beings and that a lot of their behaviour is informed by or most of their behaviour is informed by the narratives that they believe in and give value to, so that even when you present them with facts, these facts get embedded within particular stories that evidence-based medicine does not attend to because it only sees the facts in isolation. So, in order to understand how to change things, you have to acknowledge that not to dismiss people as irrational because they don't go by scientific rationality. But you have to acknowledge and understand this kind of rationality, narrative rationality, treat it with respect attend to it in order to begin to see how you might work with people. That's one claim, the other claim is that narrative not as a mode of being in this sense, but as a mode of rhetoric if you like a genre, a way of packaging information because you can package information in the form of an argument, you can package it in the form of an editorial and form of a story. But we are also claiming that the narrative format is likely to be the most effective in reaching out to people because you don't need any particular educational expertise in order to engage with the narrative and narrative also allows for identification, so it opens up opportunities for you to identify with.

 

Banik               And thereby deliberate.

 

Baker              And therefore buy into it if you like much more than just buying into a set of statistics or facts that for most people they don't understand anyway.

 

Engebretsen    I think those are important points and I think that the first thing you said, I would like to stress that we want to get away from the dichotomy that you have scientific rationality on the one hand and then you have irrational behaviour on the other that's the basic dichotomy that we want to challenge through our book.

 

Banik               Because there is no one fact?

 

Engebretsen    No, there are different kinds of rationalities even scientific rationalities, not one rationality several different rationalities. COVID has shown that very clearly, for instance a conflict between two different scientific rationalities that clashed during COVID was the difference between evidence-based medicine on the one hand, and public health logic on the other hand. Evidence-based medicine, which focuses on, you mentioned the hierarchy of evidence that RCTs from randomised controlled trials is the gold standard of. Then you have case studies, anecdotes, qualitative research on the bottom of the pyramid and the best way of creating evidence is through experiments or in experimental settings. While in the public health paradigm, they acknowledge different forms of evidence also basic science, also qualitative research and they say that the best way of testing something is in a pragmatic context in a real-world context, and these two different notions over the evidence were actually clashing in the debate about face masks. While the evidence-based medicine people thought that face masks do not work, the public health people said that yes, it works because they had a different conception of it.

 

Banik               I think some of this is related to maybe the rational approach having or projecting the idea of very clear-cut boundaries that there are certain alternatives and that's it. Whereas what you're saying is opening up for a bigger set of initiatives that may or may not work, but should in any case form a part of the advice, is that a correct answer?

 

Engebretsen    Yeah, at least we should acknowledge these different rationales, and take them seriously and attend to the different stories, taking them seriously as potentially rational, not as something other than the gold standard.

 

Banik               Before we talk about COVID, because there's so much talk about COVID in any case. What I wanted to ask you was if some of this also applies to previous outbreaks? It could be Ebola even now we're talking about Ebola in certain parts of the world, but SARS, do you have any evidence of what happened or what went wrong in these big crises before COVID hit were there any historical examples of how this played out during say SARS? 

 

Baker              I think it would only be anecdotal evidence if we have any recollection of how we or other people we know behaved. But I would quite like to study that. In fact we had a project that we haven't received funding for yet of looking at a number of these pandemics and looking historically at what was done and how evidence-based medicine worked with them. But at the moment we haven't done the research. 

 

Engebretsen    Just to answer that, because I think it's a very interesting question and I think the hypothesis that I have without really having studied this systematically, is that huge outbreaks like these epidemics or pandemics like Ebola like COVID, like also HIV, have challenged the notions of evidence and produced new ways of thinking about evidence. I know that's the case for HIV because that is where this new pragmatic way of testing treatments really became important and was also the kind of result of grassroot initiatives from patient organisations. So, new ways of producing evidence emerged during that crisis, as we see now during COVID new ways of thinking about evidence emerge and old ways of thinking about them were challenged.

 

Banik               I sympathise with your approach, I'm not critical of it. What I'm trying to understand or better understand is, as scientists, we are used to these analytical categories, the boxes you place them into, neat boxes, it helps clean our thoughts, it structures the way. It's just like when I clean my house, it is not so much about the vacuuming that is the problem it is putting things in place that is the structure we have and so we feel like we know the world. I should also say that I remember I had a mentor once who said we have to differentiate between being analytical and impressionistic and analytical was always about being well structured, etc, impressionistic is whatever comes to your mind you don't really have the backing to say something, but you're saying it nonetheless. So, the question I have and I'm trying to understand is, let's say we have this structure on the one hand the rationality approach, and then the evidence which may of course be extremely diverse, heterogeneous coming from all sorts of corners, different types of stories being told by different people there may be a minority telling a story versus a majority. How do we then grapple with that diversity of the narratives?

 

Baker              What you're talking about is goes back to the Victorian age, that was the age where everything had to be categorised and put in pigeonholes and given a title then shelved away and then the world was ordered. But we know that the world is not ordered now, it is complexity theory and other types of theory that acknowledge not shy away from the messiness of life that are very much in vogue, not in evidence-based medicine, but in other areas of the humanities in particular. Even in medicine I know that Eivind is introducing, and Trish was here talking about complexity theory, so you have these two options it’s not either or, I think you can have both and where it matters you can't put everything in a pigeonhole you can't tidy up your house to the point where you can't acknowledge that this is also a place to live. 

 

Banik               My question was more meant not as, I understand it's not an either or, but how do we navigate the complexity of the narratives? 

 

Engebretsen    Actually that is one of the things that our book is about, introducing a way of assessing narratives, an approach for assessing narratives which is grounded in the narratives themselves and not in some kind of universal standards. Based on Walter Fisher's theory Narratives Paradigm we are using the concept fidelity and probability, so probability is about the coherence of the story, does it hang together? Is it coherent? The other dimension is about how does this story make sense and why does it make sense to that particular audience? So those are questions, those are critical questions very, very simple questions that everyone can automatically use more or less in order to assess stories, so we also say that we should assess stories. 

 

Baker              But it is a descriptive framework it tells you how people instinctively, without even realising it, how they make sense of stories and how they come to decide that this story is believable, but this story isn't. At the same time, it's not really about telling them this is how to assess stories at the same time the problem is that stories are constantly changing their dynamic they don't sit still while people assess them, and we also don't sit still we're constantly renegotiating our position in relation to the stories that are developing around us, and COVID-19 was an excellent example. Every day you heard a different story, a different take on face masks on vaccines and people were constantly changing their position because they're listening to other sources of stories. Stories are complex they criss-cross each other they don't sit still, it's something we do instinctively we're constantly negotiating our position in relation to these stories, which is good because it also means that people are not necessarily absolutely set to this story. So, you can change the views you can change what they think about vaccines, but in order to do that, you have to engage with where they are now.

 

Banik               Here of course I want to add another element there's somebody then putting these stories together and creating some sort of evidence so the agency or the individual or the institution that is looking at these stories, it could be the news media, it could be anybody who is in charge of something, something or some institution at that point of time, seeing what is out there and creating a synopsis of the narrative at that point of time, which again then changes the next day or the next month, so then the role of that person or persons digesting that information from the narratives is crucial, I would imagine. 

 

Bake                Absolutely and so is access to those narratives, that's also very important, you can produce wonderful narratives, but if they don't reach people, they will continue to read the Daily Mail and the sources where the narratives that are in circulation end up with the kind of behaviour we've seen during COVID.

 

Banik               We see, as academics, we tend to be dismissive of certain things we don't want to even read the Daily Mirror or the Daily Mail, we want to read serious stuff. That is also a challenge if I am trying to filter and I am really interested in the narrative framework as one of the agents trying to filter this information, I need to change a bit of my behaviour too, because I have to search in different places that I wasn't searching before it's a new world for me and I have to be more open I can't be as conservative as I am.

 

Engebretsen                That's true. One aspect that also comes to my mind now which is interesting with this whole infodemic that we have experienced during COVID is that the debate about evidence which has until now been and as we say in our book, been a quite narrow thing that specialists have been discussing has now become something that concerns everyone. 

 

Banik               Yes, everybody suddenly became an expert. 

 

Engebretsen    Yes, exactly. But at the same time, and that was my point, we have seen a new emergence of experts also the medical experts which actually the evidence-based medicine movement had tried to get rid of have re-emerged in almost every country. You see you have seen them here on television in Norway, we have new medical experts on television and reassuring people, communicating the recommendations and so on. It's a kind of a paradox and we had a summer school in Circle U the university alliance that the University of Oslo is part of this summer about evidence and democracy in times of crisis. There it was very interesting because we had students from many different countries also outside Europe and everyone told the same story about this re-emergence or experts, medical experts on television.

 

Banik               Some of these were actually if I remember correctly and it seems ages ago that the pandemic started, some of these were classified or labelled as being fringe people. One good case is this whole aerosol spreading that's something that you discussed in the book too. There were people on Norwegian TV, there were people, these infectious specialists who were not seen to be mainstream, who were getting a lot of attention because they were scaremongering. At least that's what the mainstream medical faculty felt until we have all the pieces together, let's not jump to conclusions and there were some of these people who were and again, I'm not using my phrase, on the fringes who were getting this attention because the media wanted something sensational. 

 

Baker              Yeah, that is very interesting. Also at the same time, I think that it is important for scientists, even the hardcore scientists who live in labs and produce experiments I think it's very important that they realise and we argue that in the book, that they themselves are also producing narratives, because that is part of the problem that people who work by evidence-based medicine and see themselves as real kind of serious scientists believe that they only trade in facts, they don't tell stories. 

 

Banik               They're also storytellers.

 

Baker              They're also storytellers, but they're not aware of the stories that they are part of.

 

Engebretsen    That's also part of the story that you tell there Dan is that the COVID pandemic showed us so many different stories, scientific stories, different experts telling different stories and face masks is only one example.

 

Banik               Eivind, one of the things that I notice in the book and you have some figures or some pictures of WHO recommendations, we're not just talking about experts, we're talking about the definitive health institution backtracking on its initial advice. Since you have both mentioned face masks, I remember how in Asia, people were really shaking their heads at how stupid the Europeans and Americans were because the Asians, East Asians in particular in China, etc they were so accustomed to this, it was no big deal, they did not think for all kinds of reasons why wearing a mask was not infringing on their rights. I'm sure you can say a lot about democracy or the lack of it, but they couldn't from a public health perspective understand this resistance. So let's begin with the initial reaction to the pandemic in Norway and in the UK, the lockdowns, the quarantines. In Norway if I remember correctly, I actually landed that day from Africa, the 12th of March 2020 I remember that distinctly, and there were no controls at the Oslo Airport and all of these rules were announced and my oldest son, who was a soccer player he was very frustrated that he was suddenly in quarantine because of me, because I had travelled abroad. The rules kept changing and again I would have thought that there would be one set of golden rules that we were going to implement, but just within a span of a few hours in Norway, the rules changed. So, from being very angry and disappointed with me coming home and therefore him, my son missing out on soccer practise, two hours later he was allowed to go to soccer practise because they changed. Especially from say the UK Mona where you live, how would you explain this evidence that was generated and then the counter narratives that were also generated in the initial years of the pandemic?

 

Baker              Well, I think like in as in many places, the UK was particularly bad and part of the problem was the constant change of narrative which then erodes trust because people think if this is really the story, it ought to be much more stable than that. They get the impression that these politicians and these scientists don't know what they're talking about anyway, that was part of the problem. The other problem is that unlike the Asian countries you were talking about, Europe in general and the UK and the Anglo American Culture in particular, is extremely individualistic, having invested heavily for decades in making people think that they are unique individuals and that nothing should interfere with what they do in life, that they can do everything in life and suddenly you were being told, think of others, not just yourself, you can't behave in a way that affects others, your freedom has to be restricted to the point of even not being able to go out for a walk for months because of the potential hurt to other people. That didn't come easy because of these individualistic stories that people have been immersed in for so long and the idea that nothing should restrict your freedom, that was your right, your birth right. So both constant change of the narrative and then this sudden rupture in the big, big narrative by which they've been living all their lives and thought of as very positive that I'm an individual and I do what I want and I'm independent and so on suddenly that evaporates and you become a number and part of a community where you have to think of others more than you think of yourself and so on that was very difficult. 

 

Banik               What about face masks, since that is something that you've raised, isn't it persuasive advice to say, look, the evidence says throughout history you should wear the face mask, maybe more to protect others from you than yourself. I don't know what was the deal with the face masks? What was the controversy?

 

Engebretsen    I think once again it was a reflection of the crisis of evidence that I talked about because those who were against face masks, they said that we don't have any evidence because we don't have any RCT's saying clearly that face masks protect you from transmission or others from transmission we don't know that because we don't have enough RCTs. But others, like Trish Greenhouse, with one of the main proponents in the UK for wearing face masks she said that we have a lot of evidence, we have anecdotes we have case studies, we have basic science justifying that we should wear one. Then the proponents of evidence-based medicine, they talked about the precautionary principle which is a valuable way of thinking when it comes to medication and treatment like you said you should be absolutely sure before you intervene because before you start the treatment or use that treatment on humans. But is that a relevant argument when it comes to face masks? It's a piece of clothing. 

 

Banik I was just thinking of all those TV series that we watched over the years; you know that a surgeon wears a face mask, washes his or her hands before going into the operation theatre for me, that is evidence enough. 

 

Baker              You see, I don't think anybody brought that up actually, but that would have been a convincing story because people live by example as well and anecdotes like this they find them more convincing often than the facts. 

 

Banik               Well, in this case I would say it's not an anecdote, it's a fact. 

 

Baker              Yes, but it's not something that came out of an experiment in the lab I mean, you can't say we studied it.

 

Banik               No, but it is an established practice.

 

Baker              That's another source of evidence you see which is not part of evidence-based medicine.

 

Engebretsen    That's exactly our point that isn't taken into account that kind of evidence that you're talking about now.

 

Banik               But I would imagine that established practice of washing hands and wearing a mask before you go and operate on a patient is based on evidence, otherwise they wouldn't be doing it.

 

Engebretsen    At least it's based on long experience. 

 

Baker              It's common sense.

 

Engebretsen    Yeah, common sense.

Banik               But I think some of the problem was as you have both alluded to, it has to do with the loss of freedom. One aspect has to do with, well, I'm fine, why should I bother about this personal aspect, and the other one is but things were different before, don't constrain my daily life. But going back to the UK Mona some of the issues if I recall, were also related to the guidelines not being universally followed, so people were flouting the rules and when it is the Prime Minister or when they're national heroes, as you both write about in the book, Captain Tom then it is different. So, one thing is to establish the evidence or the narratives and then to devise rules and then the next step is of course to follow those rules and to maintain the legitimacy of those rules and thereby create more trust. In this process if somebody flouts the rules, then we are really back to square one.

 

Baker              It really highlights the importance of trust, it's such an important issue. We explain this within the book as part of one of the ways in which people assess narratives and that is through what we call characterological coherence. The way you decide whether to believe in or not and whether it has value, part of that is who is telling the narrative and can you trust them. Then when it's the Prime Minister or even more, much more seriously, Neil Ferguson, who was at the very forefront of the rules or recommending the rules, he's a scientist, the rules that have to do with controlling the spread of the disease, when he starts behaving in the opposite way of what he's recommending then people suddenly say, well can we trust his recommendation because he himself is not applying it? That's part of the way in which people assess the value. In this case I don't think, if I remember correctly, people weren't necessarily contesting the recommendation itself, but they were extremely angry at the fact that somebody who knows why that recommendation is important and who actually put the recommendation out is flouting it for his own convenience as it were. 

 

Banik               So all of this then results in the massive generation of alternative narratives, as I understand it. That leads to when you're questioning the rules, when there is distrust in the system, you are then thinking, there must be something else maybe I should go into an echo chamber where I meet a lot of people, anti vaxxers or whoever that believe in this and then we just strengthen each other, bolster each other's arguments. Is that what happened is it the lack of trust? The lack of following the rules by those who devised the rules that led to maybe a huge generation of alternative explanations.

 

Engebretsen    I think so. At least it's part of it and part of it is also what you mentioned earlier when you were saying that you coming home from abroad on the 12th of March, you had expected a set of rules to be applied so to speak and to stay. Then it started to change, and everything changed. At one point, no one understood the rules anymore, not even the Prime Minister in Norway either, there were all the time stories of people breaking the rules because they didn't know the rules because it was impossible to navigate.

 

Banik               Well, one very good example is our Prime Minister being told by the Health Minister in a press conference there has to be the one metre distance, the physical distance and then after the press conference, our Prime Minister instinctively reached out with their hand just when we've just said don't shake hands. It's a human error, we don't think about it because we are used to these social interactions this is how we greet and thank people and then suddenly we're forced to change it. But in terms of say physical distancing in terms of face mask, in terms of quarantines what happened in the end to that initial evidence that was out there? Do you think over the years of the pandemic the rules have changed based on the narratives? Has, the change happened because of new forms of evidence? My question really is, how did all of these alternative narratives that were not anchored in evidence, how were they responsible for changing what we or how we understand what to do during a future pandemic?

 

Baker              I actually don't quite know what happened recently, because all the rules have been lifted everywhere but at the same time you are told that there are still large numbers of people in hospitals with COVID and so you don't quite know what is going on, and nobody's talking much about it. It's not a clear decision that says, OK we know people are still ill with COVID, but we're going to do away with the rules, that’s not being said. But obviously it's influenced by a lot of the stories that have been circulating about the harm to school children for instance who are missing lots of time from education. The fact that people realised or argued that it's not sustainable to continue to have no social life whatsoever to be isolated from people, that the mental health consequences are more serious. So basically, it's a lot of stories that are competing with each other and they have to at some point be resolved in one way or another by people who are in a position to resolve them at the level of the nation. But personally, instinctively we still resolve them in ways that we thought individually made sense to us at the time. So, Neil Ferguson, for instance, he had no doubt about the evidence he's the one who really talked the government into lockdowns and so on. But at some point, he must have decided that his relationship with his lover and his personal life and the value of that relation exceeded these recommendations. So, we each resolve them in different ways, either surreptitiously or publicly, in our own lives at some point, and then publicly, obviously it's the institutions that control what goes on in society that decide at some point this evidence is still there, the virus is still there, but there are all these other stories, all these other considerations that we have to balance.

 

Engebretsen    I think there's another part of this story and that is uncertainty. I think that it should also be noted that I think the Norwegian health authorities have done relatively well in terms of creating confidence in the population. One of the reasons for this, is because they have been relatively open about uncertainties, the health authorities appearing on television they have said that, well, this is what we know now this is what we think, but this is also kind of a big experiment we are thrown into this, and we need to make decisions. I think they could have been even clearer about that because this is a huge crisis also for evidence-based medicine in the sense that evidence-based medicine is a slow process it happened in translational chain we call it, first you do experiment in the lab and then you do it on humans and so on and then you have many different experiments before you can make any recommendations. Here we didn't have that evidence, we didn't have the right number of RCTs about face masks, but still they needed to act they needed to do something. I think the key to trust in situations like this is to be transparent about uncertainties rather than trying to give the impression that this is the right, this is the official or this is the gold standard. 

 

Banik               I think both of you raised some really important points because the story you're telling me is one of trade-offs that we make every day that, as I understand it, as a layperson, I'm not a medical expert. Ideally when I came back on the 12th, I was actually pretty happy, I knew that we have ample space in this house the kids were on one floor, my wife was in the attic, I was in the basement we had enough space to spread ourselves I did not feel the need to go out I felt that OK, that was my way of controlling it because the evidence then was to stay indoors or just in your house or controlled environment. So, I felt pretty convinced that that is one way of protecting but as you were saying earlier, Mona, you realise after a while the kids want a social life, they actually miss playing with their friends and that even you want to see somebody other than your wife, you miss your friends, etc. So, I think even today, I suppose what has happened is that we know that if we really wanted zero COVID, which is one of the big challenges that China is facing at the moment that we have to just curtail all these rights and I think the biggest change that has happened, at least as I see it, is that we've learned to live with things, it is compromising. This is perhaps what Sweden tried to do and was much criticised initially, they sacrificed their elderly, that was the criticism. I don't know what evidence says whether Sweden was a success or not, but I think as you were saying, it appears to me a story of trade-offs that we make. What is important and this goes back to the smoking example, I know that I could get cancer, but it gives me more pleasure and I so choose to continue. 

 

Baker              It's not that you don't know the facts, it's just that some facts don't count as much.

 

Engebretsen    I think that what you're saying there is key and then actually also the kind of main message from our book that we're talking a lot about values. The Great Barrington Declaration in the UK for instance was very much discussed and was used as an example of kind of similar to the Swedish model that was about reaching herd immunity rather than controlling the pandemic. 

 

Baker              Sacrificing the elderly and the vulnerable.

 

Engebretsen    Yes, but if you look at the Great Barrington Declaration and what it actually says, it says a lot about other risks with lockdowns such as mental health and chronic diseases and so on. Whether these risks are bigger than the benefits of flattening the curve is ultimately a moral question, not a scientific one like you say, it is fundamentally about values. 

 

Banik               I think what your book really does well is to highlight that this is not restricted, the problem that we've been discussing is not really restricted to medicine. Mona, since you have Egyptian roots and have to of course, mention that COP 27, the Climate Change Conference is going to take place in Egypt in a few days from now. I am very interested in seeing and I will now pay greater attention to some of the stories that have been coming out of African countries, from different stakeholders before the climate change negotiations that sometimes very often differ from the science or the IPCC reports that have a very strict understanding of what needs to be done. I think it'll be pretty interesting in the weeks and the months ahead to see how knowledge on climate change, of course this has been going on for many years, but I'm particularly interested now what's going to happen. How knowledge about climate change, the scientific knowledge, the modelling often I believe disregards the lived experiences and the narratives of people down there. Sometimes we are thinking in Norway about how people in some other country should be changing their behaviour based on our understanding of reality. I think this is a big, big challenge for the whole climate community, that while storytelling based on what they think is the evidence sometimes I would say very often the neglects the perspectives of people who are facing the brunt of climate change, who are aware of it, but none the less prioritised differently from people in the global north. 

 

Baker              I think climate change would make an excellent case for applying this model, and if it wasn't for the fact that it's not a medical topic, strictly speaking, although it does criss-cross with medicine I would suggest that we make it our topic, we are actually starting to work on a new book and we're just at the stage of saying we're not going to do COVID again because it's been done so what kind of case study for the new argument do we do we take? So maybe climate change, it definitely lends itself very much to thinking in narrative terms. 

Banik               If you were to look into the future and another pandemic that could come, do you think we will tell these evidence-based stories differently? Do you think we've learned? What is the big lesson we've learned from this pandemic that you think will stand us in good stead in the future?

 

Engebretsen   I'm not sure actually how much we have learned. I hope that we have learned, and I hope that we have learned the importance of trust. Someone said at your conference yesterday that there is nothing soft about trust, even if some reports have described that as soft factors. 

 

Banik               Yes, governance trust is not necessarily soft.

 

Engebretsen    Not soft at all. I think that not only trust but also cultural aspects and so on.  

 

Baker              Values.  

 

Engebretsen    Values, that has been the core to how the pandemic has developed. So, I really hope that we have learned from that and that we will make preparedness work to be about more than only so-called hard factors like more RCTs, but also about trust, values, culture and so on. 

 

Banik               It was such a pleasure to have you both in my basement today. Thank you very much for a lovely conversation. 

 

Engebretsen and Baker Thank you.