Federica Santoro 0:15

Welcome to Drug Safety Matters, a podcast by Uppsala Monitoring Center, where we explore current issues in pharmacovigilance and patient safety. My name is Federica Santoro, and today we'll be diving into the world of antimicrobial resistance and behavior change communication. And this is a really special episode because it's the first podcast partnership in the history of drug safety matters. Joining me in the studio today is Eva Garmendia, who produces the AMR Studio Podcast. Eva's show looks at the multidisciplinary research on antibiotic resistance and is hosted by the Uppsala Antibiotic Center here in Sweden. But enough introductions. Let's get right into it. Hi Eva. Hi Fede.

SPEAKER_03 1:04

How are you doing?

Federica Santoro 1:05

Oh good, thanks. How are you?

SPEAKER_03 1:06

I'm very, very well. I'm very happy to be here together today, actually.

Federica Santoro 1:10

Same here. It's so exciting to be co-hosting a podcast. You and I both attended the Uppsala Health Summit last month, but you were heavily involved in the organization. How was that experience?

SPEAKER_03 1:23

It was great. I actually learned a lot being behind the scenes at the Uppsala Health Summit. This particular Uppsala Health Summit focused on antimicrobial resistance and behavioral change. The Uppsala Health Summit has a tradition of bringing together experts from different disciplines to cover global health issues and kind of to come up with recommendations for action on those issues.

Federica Santoro 1:46

Sounds good. But why is it so important to talk about behavior change in antimicrobial resistance?

SPEAKER_03 1:52

Well, antimicrobial resistance is actually a very complex issue. Resistance happens when a bacterial or a microbial infection can no longer be treated with available drugs. It is a biological problem, but ultimately it is also a human and social problem since it boils down to how we use antimicrobials. We need to understand the drivers, the motivations, and how people think in order to come up with innovative and sustainable solutions.

Federica Santoro 2:20

It's very complex, but it was really interesting to learn about this. Because of the pandemic, though, the event had to take place online this year. But one advantage of that was that a lot more people were able to attend and they tuned in from all over the world. And we found the event so inspiring that we just couldn't resist interviewing some of the key participants. Is that right?

SPEAKER_03 2:43

Yeah, that's right. And I am very excited for our listeners who will now hear from three wonderful speakers. We were able to talk to Otto Cars on the science of antimicrobial resistance, Eldar Shafir on behavioral change, and Vanessa Carter on the role of patient advocacy.

Federica Santoro 3:00

And what a lineup that is. But before we start, we should give our listeners a heads up that from now on we will stop using the expression antimicrobial resistance in full. It's a bit of a tongue twister. And we'll just refer to it with the acronym AMR. So we hope no one will get lost. And now on to our first speaker, Otto Cars. Otto is a professor of infectious diseases at Uppsala University. He's also the founder and now senior advisor to React, Action on Antibiotic Resistance, which is an international network that works across the world to stimulate engagement on AMR. Eva, you phoned Otto up. What did you talk about?

SPEAKER_03 3:46

Yes, so we talked uh about a lot of different things, but we focus on, for example, the global AMR status, the effects of COVID on AMR, and some insights on why the response to AMR has been so slow. I hope you all enjoy this. Thank you so much for being with us. Uh, could you tell us a little bit of what's the status of AMR globally nowadays, and also what effect has the pandemic had on AMR?

SPEAKER_02 4:14

Yeah, I mean for sure we we see an increasing trend all over the world of AMR. Specifically, then we talk about antibiotics and antibiotic resistance. What is currently sort of spreading uh globally as a slow pandemic is resistance to what we call gram-negative bacteria, which are common bacteria like E. coli, klepsiella, and others, that are prevalent both in the society and in hospitals, and it's becoming more and more uh difficult to treat, and more and more uh resistant. So this is clearly a very nasty global trend, a very dangerous trend we see, and it continues upwards. Having said that, and you the second question was whether the coronavirus pandemic, the COVID-19, has at all influenced the AMR. I think it's too early to say anything about that, really. What we know is that many patients with COVID-19 hospitalized get unnecessary antibiotics, and this is easy to understand because these are critically seriously ill patients, and specifically in the beginning of the pandemic, we didn't really know if there was a co-infection with bacterial pneumonia as well. Now we know better that this is not really very common. But still, just to be sure, and for safety reasons, many of these patients in hospitals are treated with antibiotics. And they this might of course lead to an increased resistance trend, which is too early to say. On the other hand, in the community, in countries like Sweden, and I I heard also seen also data from many other countries, in the community setting, antibiotic use has declined. And this might be uh for different reasons. I mean, it could be primarily because we have social distancing, other common cold viruses are not spreading, people are washing their hands and and practicing hand hygiene in a much better way. So uh that is uh another trend. So, how this will sum up at the end, I I think it's too early to say.

SPEAKER_03 6:12

I understand it's early, but for sure some sort of effect we will see that it it will have in one way or another. It was 20 years ago in 2001 that the WHO recognized AMR as a global health challenge and formulated a strategy to address it. But it actually took a while to get a big policy response to this. Like, for example, the World Health Assembly Global Action Plan came in 2015, the establishment of the UN Interagency Coordination Group happened in 2016, or the newly appointed Global Leaders Group of AMR in 2019. Why is the global response to AMR so slow? And what have these policy efforts achieved thus far?

SPEAKER_02 6:54

Yeah, to start with the end of your question, the fact that the issue finally reached 2015, as I said, the global we had a global action plan, and then moving on with uh a lot of more stronger policy action has been really important to raise the profile of the issue. And it has delivered a lot, not the least national action plans in many countries, more than 100 countries in the world, including in the south, of course, uh, has uh such plans. The problem is that they have not been implemented yet in many countries because of a lot of barriers. First of all, political will and understanding, capacity is not there, financing is not there. But we have come far, at least some way. But going back to what you said about uh the starting point really was in 2001 already. It is um difficult to understand really how this issue has been so invisible. And that is also why React was founded uh in in 2005. We discussed with WHO why the momentum was so slow, and we came to the conclusion that we should try to create a new force, a new global network that could drive this issue together with uh WHO, but uh primarily including many others in the world. So, my answer to this really critically important question is why has it been so slow? Well, first of all, I think the problem is that it's still a very technical concept. AMR is not really well understood in wider circles in the community and in the policy arena. So we need to sort of find ways to change and improve the narrative so that people understand what is at stake. It has not the disease phase as it should have, although we know that AMR or antibiotic resistance is undermining every health system, really, because uh antibiotics are critical components of every health system. But the other sort of answer to this question is that I think, at least previously, and unfortunately, maybe even today, that the whole world has been falling into some kind of trap, uh self-deception, that uh the pharmaceutical industry will always deliver new antibiotics. So that's why we can continue to use and overuse these drugs because there was another uh medicine coming along, and now we know that this uh sort of business model is not working, there the industry has sort of failed to deliver new antibiotics, and this is why the crisis is increasing, also. So we need to sort of really start all over again, try to describe the the issue and what consequences of the issue in in a different way.

SPEAKER_03 9:33

Where does that misuse and abuse of antibiotics stem from? And what is stopping people from actually using antibiotics properly?

SPEAKER_02 9:41

Oh, yeah, this is a really big question as well. Uh, I mean, if we go back to this starting point during the Second World War when antibiotics became available, it was something really, really big, a major change, uh, something uh that has not been happening before. We could save lives of children with pneumonia, we could treat severe bacterial infections uh which kill many many people. So it was a real sort of change in all health systems in the world, primarily, of course, in in the Western world. So it became very popular, and when new uh antibiotics were developed one by one, we could treat more infections, and the perception was that this was uh very effective, of course, uh, medicine, but also very safe medicine. It could be used all over, and also when the market forces were coming along driving this, it became overused for many infections, and people had the perception that it was uh effective towards viruses, influenza, common cold, diarrhea, and so forth. So that's in its core, it is knowledge. It's about knowledge about what kind of infections can be treated with antibiotics. Secondly, are there any side effects that I could should be concerned of? And I think those two elements is still there and need to be addressed. The knowledge is not there. In many countries, still people believe that viruses can be treated with antibiotics. In many countries, people don't understand that antibiotics is having a severe effect on your own normal bacterial flora, which will be developed into a more resistant flora and which could affect you later in life if you have an infection that will then be difficult to treat. So, I mean, in this core, it's about knowledge, and if that knowledge is sort of coming through in a better way, and of course you need to be contextualized according to the culture and the context, it could also lead to a less demand from patients, which would really help if patients uh are knowledgeable and and understands that this is not only an issue for the global good and for next generations, but also something that affects yourself and you have to be cautious on taking an unnecessary antibiotic course. So it's a big issue, it's about really uh major behavior change on all levels of society.

SPEAKER_03 12:04

Yes, uh definitely I agree with you that the complexity of antibiotics affecting both the now and the here and the patient, but also future generations, it's a complex thing to put into communications and to let people know in order for them to to make the best decisions. Uh, how can we make doctors to include uh more global thinking from a public health perspective?

SPEAKER_02 12:29

I think there is a critical sort of connection between the prescriber and the patient here that we know need to change and where they need to we need to keep trust, but where sometimes the uh prescriber overestimates the demand from the patient. The patient might not really want an antibiotic, it they want advice, they want to know what is causing their fever, and they are often, at least from the experience in where I've been working in Sweden, happy with uh the doctor saying that we do you don't need an antibiotic. But this is difficult because if you specifically if you're working in a context where there is a weak health system and where, for example, a mother has been carrying the feverish child for several hours to a health center, you can't just say please come back tomorrow. This is perhaps a viral virus infection. So you really need to understand this from the co from the context. But in all health systems, we have a very weak point, and that is the lack of specific rapid diagnostic tests. We know for the COVID-19 we diagnostic tests were developed quickly and has secured a proper and quick diagnosis for those that need to have treatment. We don't have this for antibiotics still, and this is would be a major game changer if that could be developed, because then uh everyone could be secure, doctors could say this is the right diagnosis, this is the bacterial infections, and we need to treat it with this antibiotic. So that's one major bottleneck. And the other uh sort of phenomenon that we need to realize exists is that in some countries doctors are having financial incentives for overselling and over-prescribing. So the business model for antibiotics needs to change, uh, removing those perverse uh financial incentives. So it's a really, really complex issue. But I think that it's important that the doctors and prescribers take the responsibility to try to see both perspectives, keeping the patient in front of them and making a judgment for what is really needed, uh, but also taking responsibility for the global picture and the global public good.

SPEAKER_03 14:40

Yeah, ensuring that the right structures are in place so the patients can get the treatment that they really need, be it antibiotics or not antibiotics. I understand. Coming back to talking about the pandemic and uh COVID-19, we know that it has had a great impact on public's understanding of infection disease spread and prevention and the value of vaccines. All of these, which are also essential parts of preventing AMR. How can we make the most of this momentum to prompt action in the AMR sphere?

SPEAKER_02 15:08

Yeah, it's a good question. I think many of us in the so-called AMR communities are thinking along those lines today. Because I think there is a momentum, there isn't a window of opportunity to really change the narrative and describe the crisis that we see under the surface, the slow pandemic that is been going on for years and even decades that is undermining health systems. So, exactly where this will go, I think is still an open question. We have been fighting, some of us, for a much stronger governance mechanism for antibiotic resistance, maybe even a treaty, climate change-like agreement, so that we can sort of both secure a sustainable supply of new antibiotics, but also have agreement on targets how to use this uh global asset. Now, when when COVID-19 has come and changed everything, we need to reflect whether it's uh it's another option would be to uh place AMR into the context of pandemic preparedness. We know that there are many sort of avenues now moving in that direction. We need to secure that the world is better prepared for the next pandemic. But I think we now need to at least provoke the discussion, not only focusing on the next virus pandemic will eventually happen anyway, but also addressing this slow, slower threat. What absolutely is a positive sign here, as you said, is that the general public today, everyone, knows much more about infections, knows much more about health care, knows much more about the risk that that weak health systems is causing uh not only to the country population but also globally, and uh why resilient and strong health systems is really something that we all need to fight for. So I think in in that context, and also the the knowledge about prevention, how important that is, and so forth.

SPEAKER_03 17:02

Yeah, I hope that uh we can find a way to frame antibiotic resistance in a way that is more familiar to everybody out there listening. And now with the pandemic having as an example, maybe we can we can move the conversation uh forward. I thank you so much for your time and for talking to us. And I hope the best wish you the best. Thank you so much.

SPEAKER_02 17:23

Thank you for inviting me. Thank you.

Federica Santoro 17:25

Now, as we heard from Otto, there's a lot to be done to achieve behavior change in the AMR sphere. So we have physicians on one hand who need to understand how antimicrobials will affect people overall, and then there's patients who need to understand what the personal risks are when taking antimicrobials. To understand how to reach out to people with messages that can change their behavior, we spoke to an expert in behavioral science, Elder Shafir.

SPEAKER_03 17:56

Yes, I am truly happy that you were able to talk to Eldar, who's a professor on behavioral science and public policy at Princeton University in the United States. He's been focusing on behavioral economics with a particular interest in the application of that research into policy. What did you guys talk about?

Federica Santoro 18:14

Well, we spoke about the influence of context on people's behavior, how to frame messages for maximum impact, and also, interestingly, how bad we human beings are at multitasking. It may seem obvious, but to be able to influence human behavior, we have to understand it. What are the top concepts in behavioral psychology that we should grasp if we want to change how people use antibiotics?

SPEAKER_00 18:45

Well, of course, human behavior is a complex set of issues. We we can only select a few major issues, but I think the number one concept to keep in mind is that of control. It has to do with the fact that we construct our decision, our representation of the situation in real time as we go. Now, of course, there are going to be cases, whether it's AMR or ice cream or anything else, where some small percentage of people know exactly what they want. You know, they love chocolate, they hate pistachio, and it doesn't matter what happens. All the rest of us are constructing preferences as we go. We're trying to figure out what we want, what we don't want, what we like, and that has an enormous impact on decision making. Basically, because people are trying to are in the business of constructing a preference as they proceed to make a decision, small cues, small pieces of information, contextual nuance, how things look, how they sound, how they're represented are gonna have an impact on the decisions that we make.

Federica Santoro 19:39

Let's expand a little on this concept of the context, because research on human behavior has shown that changing that context around people can work much better than just lecturing them on the ideal behavior to follow, so that so-called architectural interventions can work a lot better than so-called informational interventions. Why is that?

SPEAKER_00 20:05

So, yeah, that's exactly right. So we run around having a very busy life. Some are very impressed with the size of our brain, but at the end of the day, it's limited. It's severely limited, especially when it comes to things like paying attention. Where to the extent that I'm paying attention to you now, there's very little few other things I can do at the same time. This whole idea of multitasking is mostly in other words of saying, you know, not paying attention. So, you know, people are very limited, and I go through my life being busy, and the findings are very clear. If you give me big lectures about eating more healthy, I might change my intention. Now I intend to eat more healthy, I take you seriously, I believe you, but then I go through life, and if getting a healthy meal is difficult and what's in front of me smelling good and easily accessible is not healthy, that's what I'll eat. So it's very clear that giving people lectures about dieting does relatively little compared to simply giving them smaller plates. So a lot of a lot of evidence where if I make small changes in the contextual elements in your life, I can have a much bigger impact than giving you big lectures. Now, of course, I need you to have the intention. If you don't want to eat healthy, there's nothing I can do. So education matters. It's important to change people's preferences or to convince them to create certain attitudes in them. But once you do that, whether it's a patient or a doctor or anybody else, once the intention is there, you have to make it easy to implement.

Federica Santoro 21:23

Do you have any idea what those kind of interventions could look like specifically in the context of AMR? So how would we be able to change people's behavior around antibiotics by changing the context around them?

SPEAKER_00 21:35

Yeah, so you know, AMR, of course, is again, it's a it's a big issue. There are different players who are relevant here. But uh in general, let's take the average doctor who administers antibiotics for a moment. So this is somebody who's formed an intention, she wants to do the right thing, and now how do we help? So, for example, one of the interesting things about AMR, as others have pointed out, it's a form of a social dilemma. I mean, I want everybody to do less, but I'm doing what I think is Right thing to do or the best thing for me. And in addition, of course, I don't know how others are doing. So one thing that we know pretty clearly is that what's known as social proof, if I give you better information about how the world around you is acting, that's gonna help you do the same thing or similar thing or a better thing. If you send the doctor information about the amount of antibiotics, for example, uh prescribed by colleagues, and you can of course do this colleagues in the same hospital, same town, same country, depends, you can choose different norms. If the doctor finds that she's using significantly less more than the average, that's real pressure of sorts, information, messaging. Look, you really should be able to use less. Now, of course, you can frame it, you know, we can talk about the framing more, but of course, every decision can be described in different ways. There's many ways that I can describe something you do as better or worse compared to some set. So here you can be relatively manipulative. I can compare you to other doctors in your hospital or in your ward or in the town in ways that make you look better or worse. There's a lot of manipulation that can be done there. And obviously, a panel of doctors should decide what's the ethical and the right thing to do. But in general, what we know is that if you, a well-intentioned doctor who wants to do the right thing, get the message that the context around you administers less medications in you, all the evidence suggests there will be strong information and pressure to do better, to administer less.

Federica Santoro 23:22

And you mentioned framing messages. It's so important to craft a message properly so that it induces the desired behavior change. But what's your best advice for AMR specialists looking to change people's behavior?

SPEAKER_00 23:38

Yeah, so here uh unfortunately I have to adopt all the modesty that's required of a fledgling and young science. We don't exactly know. The only way to do it right is to pilot test. Now, I recognize that most of your listeners who are busy doctors don't have time or or energy or the setting to do pilot testing. It's not so hard, by the way, to hire an outside group. I mean, any average marketer knows how to pilot test, but the right way to do it is to basically take a few frames that look to you plausible, and we can talk more about what those might look like, and see what works best in the population where you are. In some cases, if uh in the US, if Oprah Winfrey, she's a very famous actress and uh author, if she gives a message, people are moved by it. They're moved by it much more, for example, than if a suspicious politician gives the message. Now, you know, what happens in a hospital setting? Is it the head of the hospital? Is it the you know Minister of Health? Is it a famous actress? Is it a football player or who should give the message is a perfectly fair question that is fair to us because it makes a difference. Um, you know, sometimes people like people like them to give the message. Sometimes it's good if it's the an authority figure. That's the kind of thing that you can pilot test. Then comes the message itself. Again, with some reason to think that loss frames have more of an impact than a gain frame. If you don't do something you stand to lose, that gets people's attention more than if you don't do something you miss a gain. So these are nuances that you can play with. Uh again, the social norm, people tend to do this sort of thing. Most people like you do X. That has an impact on people. You know, if I say to you, please do something, the message is, you know, maybe I want you to do it, but nobody else is doing it. Why should you? So those are the kinds of things. This whole set, of course, of these. I mean, who is the messenger? What's the frame of the message? Is it friendly? Is it threatening? Is it the majority? Is it just a special few? Again, I'm not being very helpful here because the only honest answer is we have to check which parts of these work best. Unfortunately, because when you look at policymaking, whether it's hospitals or governments, a lot of these organizations are not set up, are not built to do pilot testing, which is kind of what we hope is part of the behavioral revolution to say, look, this stuff matters more than you realized. You ought to have some way, if not in-house, then to hire an outside company to help you figure these things out.

Federica Santoro 25:54

Yes, test and refine and go back and test again. Let's talk about guess what, the COVID-19 pandemic for a second. One of the biggest frustrations, I guess, in the AMR sphere is that it seems a lot of work has been done on paper, setting up programs and committees and plans, but very little action has come out of that. And yet, what we see after a year of pandemic is that the world can move incredibly fast. We manage to change the behavior of millions of people around the world in a very short time. Is there something we can learn from those strategies that could help us manage AMR?

SPEAKER_00 26:41

Yeah, well, so of course, this is a multifaceted question. You already framed it very clearly one way as opposed to the other. So you you framed all the successes we've had, but it's also the case that I think about 10% of Europeans have been vaccinated so far, which is hardly a success a year later. The science has been a fantastic success, but the promulgation and the access to it so far has been more complicated. And you know, also as you were speaking, there is massive spring vacation parties happening in Miami, completely uncontrolled, uh, despite the police attempts to slow them down. So again, it's a classic case where we have a little bit of both, a lot of good behavior, a lot of not so good behavior. And it's a complicated situation, of course. Um, the things that have helped, clearly, number one is fear. Fear is a major motivator, and people are just those who take the science and the data seriously are afraid to do stupid things and get sick. The other one, I think, is you know, some form of altruism or at least, you know, social cooperation. There is the feeling that the right thing to do for my family, for my friends, for my city, for my country, for humanity is to do certain things and not others. And all of those, even if you have them in mind, some kind of a very selfish, you know, businessman, these are still motivators that drive human behavior. So people want to do the right thing on average. And here again, what's so interesting is that clear, explicit messages work so much better than confusing messages. Sometimes, you know, the scientifically responsible, educated, correct message is kind of fuzzy. We're not sure, we think it might be, etc. etc. Like the answers I just gave you. Well, we need the pilot test, we're not sure, we have to be modest, etc. And what really works on people is very condescending, very childish, simple things. Don't do X, you should do Y. And that's attention in policymaking. How do we frame the message? So when you tell people there is some suggestive evidence that masks might work, that's enough of a license if I don't feel like it not to put it on. Of course, if you tell me, you know, masks make all the difference in life and death, you can be sure I'll put a mask on. So these are kind of costs and benefits that people have to choose between as they give messaging and other treatments and other policies, how much to allow for uncertainty and fuzzy knowledge as opposed to trying to seem decisive. Because again, the average person doesn't have time for this. They're busy, you know, taking care of their kids and have a mean boss and want to watch a little television. They don't have time for all this, so you have to tell them what to do. And this sort of paternalistic tone, of course, is problematic, and so we have to choose kind of the right, the right frame. I think if you look at COVID, it's a clear case where clear messages and some certainty on the part of politicians and the scientific community have had a much better effect than sort of very honest and truthful but confusing messages that left people not quite sure what to do. And then, you know, once once the messages are unclear, even people who really want to do well, there's a lot of space to interpret it in ways that make my life easier. And so you get into these very complicated nuances where very well-intentioned citizens don't do exactly what you want because the messaging is not terribly clear and helpful for people who are otherwise overwhelmed and don't have time to spend too much time thinking about all the nuance.

Federica Santoro 29:54

It's tricky, isn't it? I mean, you really unveil the complexity of it all.

SPEAKER_00 29:58

Yeah, it's where we are. We're a complex animal. But again, I mean, having said all that, it's clear that, you know, if you look at some of the things that have been done, some access into human psychology and how people frame the situation, how they think about it, has had a beneficial impact.

Federica Santoro 30:14

Absolutely. And I hope our listeners will find this inspiring. Um, to wrap up, Eldar, one of your main research interests is the effect of poverty on decision making. So I was wondering what implications do your studies have for policymakers who are trying to manage AMR in low and middle-income countries?

SPEAKER_00 30:32

Yeah, so we did a lot of work on poverty, but what's interesting here is for me, the work we did applies to most of us in this case, not just poverty per se. So the message we come up with in our work on people in low-income situations is that when you're facing poverty, a lot of your mental capacity, a lot of your cognitive life is dedicated to juggling these challenges of poverty. Poverty is a difficult situation. You have to constantly worry about how you're gonna get money for Friday, how you're gonna take care of rent on Monday, how you're gonna buy the food, and it's a constant challenge. And what we show is that when you're constantly juggling these challenges, there's just less mind left for other things. So you pay less attention to other things, you forget more, you're thinking less clearly, it has an impact. And according to all the work we know from you know from our cognitive lives, to the extent that our minds are busy juggling and stressing about many other things, there's just less mind left for the things we want to attend to that are less immediate, that are less urgent.

Federica Santoro 31:29

Thank you. So that's another thing that policymakers in the field should definitely keep in mind. Um, we would keep talking to you for much longer, but I think this is all we will have time for, unfortunately. But is there anything you would like to add?

SPEAKER_00 31:44

The issues we're looking at are very, very important. I think this collaboration between the health community, the behavioral science community, you know, political agents, policymakers, all of that together will make us uh get to a better place, I hope.

SPEAKER_03 31:59

Thank you for joining us.

SPEAKER_00 32:00

Thank you.

SPEAKER_03 32:01

As we hear from Eldar, who delivers the message matters. So hearing it from people that experience AMR could be one of the best ways to impact behavior. That's why we reached out to Vanessa Carter, a patient advocate for antimicrobial resistance based in South Africa, an e-patient scholar at Stanford University Medicine X. Fede, you just spoke to Vanessa. What was her experience with AMR?

Federica Santoro 32:27

Well, Vanessa's story is a powerful and inspiring one at the same time. She happened to be in a severe car accident and spent 10 years in medical care after that trying to reconstruct damage to her face. And unfortunately, in that process, she contracted a resistant infection. Thankfully, she recovered from that, but at the same time, that experience motivated her to leave a career in advertising and become a patient advocate. I spoke to her about the role of patients and social media in communicating AMR, and she had a lot of inspiring things to say. Decades of communication research have shown that one of the most effective ways to raise awareness and influence behavior on healthcare issues is to tell human stories. And for several years now, you've been telling your own story of your own battle with AMR. Do you feel this has changed people's understanding of the problem and the perception of the risk of AMR?

SPEAKER_01 33:38

Yeah, you know, I think that my advocacy is a work in progress. You know, I started in 2013. One of the biggest impacts that it has had is to bring a human face, one human face, to the issue of AMR. You know, the other thing I normally do is um I end my story telling with how I resolved it through my personal account of dealing with a multi-drug resistant infection on my face. Not all the stories will end in the same way, or some are very tragic, but I've I've also tried not to steer it, you know, with my own personal account too much in that direction because uh the message I'm trying to give is that AMR is not a hopeless issue. That if we work together it can be resolved. And um I think that I've also through my advocacy been able to open a lot of eyes around the fact that patients are part of the solution, that they need to be included in antimicrobial stewardship. You know, it's not just the doctors or the healthcare professionals, but we play a large role. And so there's a very big dynamic to it. And um so hopefully I believe that I've started to do that. It's a very big topic. It's not something that I can say that I've made a huge impact already, but it is my life's work to work on that.

Federica Santoro 34:58

I like the point you made about telling stories that end well, but also telling stories that do not end well. And I guess people need to know both to understand that it is a complex and can be a tragic issue, but also that there are solutions available. So I guess my next question would be: how do we empower more patients to use their voice and tell their stories like you did to drive behavioral change in the AMR context?

SPEAKER_01 35:31

So I think the key word in your question is the word empower, because that's made up of numerous things, including their understanding of what it is they're actually advocating for, and that their voice does matter. It's a very scientific topic. So I think it's important when creating programs for them to participate, that it's a very inclusive. I mean, I've attended a lot of conferences where things go over my head, it's very complicated. Um, and then I've I've attended conferences where it's more inclusive. And I'll sort of name one for you as an example, and that is at Stanford University Medicine Expert, which is a patient inclusive conference that you know breaks things down and levels things out to get it rid of the hierarchies so that patients feel welcome to share their perspectives or they feel welcome to share their stories or so. That would be the first bit of advice I would give in terms of empowering patients is to level out the field in whatever programs you are running, whatever conferences you are providing is to make them feel more accepted for their experiences that they bring to the table. And then I I think second would be skills development in research participation, especially on an academic level. So I've co-authored a couple of pieces and I have found it on a personal level very difficult and intimidating to do so because we're not always trained in research terms and that sort of thing. So to empower patients, I would say look at those types of barriers that make it difficult and intimidating again for them to participate. Again with presenting, not everybody is good on stage. And I'm one of those people that I I don't like being on stage. It's very traumatic for patients. So if you're going to empower them, take it from a holistic perspective. You know, not everybody likes the glamour that goes behind the stage presentation. So again, in programs, think about this when you when you start approaching different patients, especially from a very lay perspective. Um and of course they're not as well respectful of privacy, they might wish to remain anonymous. So when encouraging patient participation and involvement, remember that you should give them that option of whether they actually want to be recognized for their story or not. And then my fourth tip would be to give them some social media training. If the expectation is to empower them on social media, I had a background of 20 years in marketing and that gave me an advantage. Not every patient has that. I also owned a business for about 20 years, which gave me the advantage of knowing the business aspects and the networking aspects which I've applied to my advocacy. Not every patient will have that. So if you develop programs, try and include that skill building, that skills development, that offering so that so that they are able to participate in whatever it is, empowered to participate to share their stories.

Federica Santoro 38:33

I'm glad you brought up the social media point. That's something I'd like to discuss with you a little more. We'll get to that in a second. But first, tell me a little bit about patient organizations in the AMR sphere. Because in many sectors of healthcare, patient organizations can be really powerful drivers for change. But I haven't heard of many patient organizations in AMR, and maybe I just don't know about them. Are there some? And how do you think such organizations can impact global response to AMR?

SPEAKER_01 39:08

So if we only take antibiotics as one particular antimicrobial medication, they are the cornerstone of modern medicine. So when we talk about different global health patient organizations, it affects them, but I think it could come down to again the technical aspect of it. How do they break it down to the community that follows them? And also is it their core message that they're trying to disseminate? And I think third, what about barriers like funding? You know, we've seen it with, for example, COVID-19, where charities, NPOs were getting involved, civil society organizations were getting involved, but that was potentially because there was more funding made available for them to do so. Civil society organizations are resources, they have limited resources so they need the support. And the AMR groups that have access to those sort of resources to enable them to take apart. And it's so important that they do because AMR is such a diverse topic. And you know, when you start focusing in on particular patient groups, for example, cancer patients who have uh compromised immune systems and are susceptible to drug-resistant infections, how can we build our communications working with those organizations to target those patients on a ground level? And again, here's another example rare disease patients. For example, those that have perhaps ressistic fibrosis who rely heavily on antibiotics. What sort of communication is going out to those patients? And um, you know, and how can those organizations reach them? Well, first of all, they have trust, um, they've built up a lot of trust with these patients and they've built up the networks or the connections through the work that they've been doing, not only recently, as we have in AMR, but for many, many years. So it's important that we try to figure out how to work with these organizations and to reach patients who rely on these antibiotics a lot sooner and a lot more effectively. They're also very much more in tune with what it is that patients need. Because if the patients can't speak for themselves, and you know, I'll put myself in that situation. I've been in RCU, I've been in high care, I've been on ventilators before. We often we cannot speak for ourselves. And so those sort of organizations can become a voice for us.

Federica Santoro 41:43

Definitely. Actually, one of the last episodes I ran on on our podcast was on rare disease patients, and a lot of the conversation I had with my guests there was about patient organizations and how they often just bring together people who alone would not have much power or much motivation to uh fight for a certain cause. Yeah. Okay, back to social media. It's clear from your professional activities that one of the things you are passionate about is social media. So, in your opinion, how can social media help change behaviors when it comes to AMR?

SPEAKER_01 42:19

Yeah, social media and you know, we're living in an information age, and unfortunately that information is not always good. And so when we when we relate it to behavior change, there's again very many dynamics to that because information alone isn't enough to change behavior. When we are faced with an abundance of remiss or disinformation, it could change our behavior in a very negative way. So, you know, your your question is how can it help change behaviors? Well, if it had to change behaviors in a positive way, I think that one of the first steps that we would need to do is try to analyze exactly how information is being uh made accessible to patients. And social media uh is a powerful way to do that if it's done correctly. So certain things, for example, like what social media can do is is to help us listen to what patients want. And in in doing so, whether they're negative or positive comments on social media, on open platforms like Twitter, for example, we can build more meaningful campaigns to meet their needs. One of the things we did I was an e-patient scholar at Stanford University. And what that research does is it focuses on the pros of using the internet and using social media to empower educate. And so when one moves beyond social media, an e patient, empowered, educated, electronic, emancipated, you know, when we start moving into newer versions of the web, so beyond social media into mobile applications and uh wearable devices and so on, a patient participation online to try and you know. Drive behavior change from that was extremely important when the internet was launched in the nineteen nineties. The first thing that most of the researchers were doing was they don't want to read the other conjunct because of negative type of patients. They shouldn't be working in with the positive type of researching on the internet that were dangerous. But part of the patient is what you are evaluating. And so I covered it's been a good example of the type of damage that bad information can do or but it's also been an example of the the way that good information can be used. So in conclusion, social media is both bad and good for behavior change, but we need to start utilizing it in a more structured way to make that more of a positive change.

Federica Santoro 44:56

That's really inspiring, and I think we can all agree that uh that degree of critical thinking is something we all need in this age of misinformation and disinformation. Is there anything else you'd like to add?

SPEAKER_01 45:08

No, I think that's it. I think that for anybody listening to the podcast at the moment, remember patients are part of the solution, and we should do whatever we can to involve them. And yeah, so thank you very much for the opportunity to be here with you. What a wonderful conference it was, and um I look forward to learning more about the work from Upzala going forward.

Federica Santoro 45:28

Thank you very much for joining us.

SPEAKER_03 45:30

It was truly great to hear from these three people whose expertise complements each other really well, I think.

Federica Santoro 45:37

I agree. And it's clear from what we've heard that AMR is such a complex issue, but at the same time it's motivating to hear that there's stuff we can do about it, and learning from different disciplines is the way forward, don't you think?

SPEAKER_03 45:54

Yes, I totally agree with you. It was also so much fun to work with you on this episode, and I really hope our listeners found this as interesting and inspiring as we did.

Federica Santoro 46:03

I hope so too, and I definitely hope we can do this again sometime soon. Yeah, it will be great. Take care. Bye. That's all for now, but we'll be back soon with more conversations on medicine safety. If you'd like to know more about antimicrobial resistance, behavior change communication, or the Uppsala Health Summit, check out the episode show notes for useful links. Eva's podcast, the AMR Studio, features lots of interesting interviews with experts in antimicrobial resistance. So make sure to tune in. And of course, if you like our podcast, subscribe to it in your favorite player so you won't miss an episode. And while you're there, we'd love it if you could leave us a review so other listeners can find us. Apart from these in-depth conversations with experts, we host a series called Uppsala Reports Long Reads, a selection of audio stories from UMC's pharmacovigilance magazine. So do check those out too. If you have any comments or suggestions for the show, you're welcome to reach out to us on social media. Uppsala Monitoring Center is on Facebook, LinkedIn, or Twitter. So come talk to us there. For Drug Safety Matters, I'm Federica Santoro. I'd like to thank Eva Garmendia for a productive collaboration, Otto Cars, Elder Shafir, and Vanessa Carter for making time to talk to us, Matthew Barwick for post-production support, and of course you for listening. Till next time.