Hello, everyone, and welcome to this My Loan of Patients here at webinar. Thank you so much for taking the time out of your evening to join the webinar, and we really appreciate it. So my name is Kate Morgan, and I am Head of Policy and Access at NPE, and I'll be responsible for moderating the webinar today on reimbursement, HDA and patient involvement. These are topics which can seem very complicated, I think, to patient advocates, but are really important for us to understand and engage in as they have a material impact on the standard of care in specific countries across Europe and on patient outcomes. Just before I introduce the speaker, I'll run through the agenda briefly in the administrative details for the webinar. So just to let you know, the webinar is currently being recorded and will be posted on the NPE website after the session has finished. The webinar will last for approximately around one hour, and it will consist of a 40 to 45 minute presentation from our speaker, Neil Bertelsen, followed by a 20 minute Q&A session. During the Q&A, please feel free to ask any questions that spring to mind during the presentation. To let you know, there are two ways you can ask questions. Firstly, select the raise hand button to signal that you have a question. This will alert me that you have a question and I'll unmute your microphone so you can ask it directly. Secondly, if you would prefer me to read out your question, please just type it into the chat box, which appears in the panel on your screen. So that's the admin part over, and I'll repeat how to ask questions after the presentation. I'd now like to introduce our speaker, Neil Bertelsen. Neil is former chair and current steering committee member of the Patient and Consumers Interest Group within HDAI International, a collaborative network of HDA bodies and related stakeholders. He has a wide range of experience working with HDA bodies, patient advocates, an industry on patient involvement, and has a lot of experience as a patient advocate himself. So without further ado from my side, I'll just hand over to Neil to begin his presentation, and I'd like to say thank you for joining us today. Thank you so much, Kate, and I hope you can all hear me well. So as Kate said, I'm Neil Bertelsen, and I'll just kick off straight away with a few declarations of interest. I do some voluntary work with patient groups, with HDA bodies, and I'm also, as well as the HDAI, I'm also involved with patient-focused medicines development, which is another organisation looking at similar areas. But I do paid work as well, which includes working with patient groups, working with the industry, working with HDA bodies, and also working on some IMI European projects, again, in the same area. But I'll take off straight away, set in the context. So why am I here? Why am I doing this webinar? Well, as Kate said, I've been involved with the patient and citizens' involvement in HDA interest groups, very long name for a particular group, but we've been going for about 12, 13 years now, and we're a collection of patient groups and patients, academic researchers, people who actually work within health technology assessment bodies, and people from the industry. And we look for gaps. We look and see how there's patient involvement happening in HDA. We work internationally to share good practices, and we bring these disciplines together to see if we can find better ways of involving patients and patient groups in health technology assessments. So the way I'm going to structure the talk today is we'll have a few slides, just really going back to basics around HDA, and that's really for anybody who's on this call who is a bit unsure about what HTA is and why we have it. But then I'll deep dive into patient involvement, and we'll have a think about why do we have patients and patient groups involved in HTA processes, and once we've covered that off, I'll talk about some ways that that involvement happens. And at the very end of the presentation, we'll think about some different approaches from the advocacy groups towards HTAs, and particularly what can you do if there is no HTA body in your country, or perhaps you don't have patient involvement processes within your HTA. So I'll kick off, first of all, with the basics. So why do we have HTA at all? Where did this come from? Well, it came from this thing that we hear about all the time, which is that there's not enough money to go around. So with the best will in the world, healthcare systems would like to provide the best possible care for all the patients within their healthcare system, but there just isn't enough money to go around. And so then you get this question, which is how can the system decide who gets what? Which treatments, which processes, which kinds of healthcare are available to different people? Now, the old way of doing this was very much based on connections and those who shout loudest. So you could get decisions being made around healthcare just because there was a lot of noise around a particular disease area, a particular condition. Or you could say we will make that choice by reviewing the evidence and we'll make a judgment based on the evidence that exists today. And it's this last option, option B, that is HTA. So when we think about HTA, I think we have to accept that HTA, first of all, stands for Health Technology Assessment. And the word technology is a bit of a silly word to use, but it is used because what they mean by a technology is a medicine or a medical device. So it's something that is used, a kind of technology that they've used to improve healthcare and the assessment happens to see whether that has value. But on the left-hand side of this slide, it's just an acknowledgement that health technology assessment differs from country to country. Each country does it in a slightly different way than the other. But in essence, they're trying to do the same thing. They're trying to say, what evidence do we have? What exists to show us how this new technology compares to what we have already, what's already available? And by doing that assessment, they're trying to ask themselves, should we use this technology? Should we use this medicine in our healthcare system? Should we pay for it? And if we are going to pay for it, how should we best use it? When should it be used and in what kinds of patients? Which patients will most benefit from it? And then if we think a bit further about what that means, is that HTA is used really to help make policy decisions, health policy decisions around the provision of healthcare. It determines how healthcare systems can spend their budget. As I say, it's based on evidence rather than lobbying. And they have a process that they can repeat over and over again for different medicines in different disease areas. And so having this repeatable process is part of the system, is part of the whole role of HTA, is that you can do these assessments over and over again with different medicines in different diseases. But obviously, if the evidence doesn't convince the HTA body that a new medicine has value, then that usually means there's no access to that medicine in that particular country. So it does become a real gatekeeper for our access to medicines. I just want to cover up just a few terms that you might hear. And I don't want to cover this in a great deal of detail, but just to acknowledge that there's different ways that health technology assessment is conducted. So some countries say we're going to use a term that they call clinical effectiveness. And what they're saying is we want to see how this new medicine performs clinically compared to what we have already. So what are the clinical benefits of this new medicine that are better or that are new compared to what we have already? There are other healthcare systems that use something they may call cost-effectiveness. And in cost-effectiveness, what they do is they calculate what are the supposed health benefits of this new medicine? How do we measure those outcomes from the new medicine? And let's look at the cost of the new medicine and is the cost of the new medicine reflective of the better outcomes that this new medicine is promising? So that's cost-effectiveness. As well as that, sometimes on top of that, you have a very simple question which they call budget impact. And budget impact is as simple as can we afford it. We have so much money this year to spend on healthcare. If we were to stop paying for this new medicine, will it break our budget? I just want to give you those terms because when you're reading about HTA, you often come across this terminology. So I just wanted to explain the difference between those systems. So let's move on to why. Why do we need patients involved in HTA? What's the process there? We looked at that within HTAI, the group that I've been involved with. And there was an international piece of research that asked lots of different stakeholders in different countries why patients should be involved in HTA. And it came down to these five areas. Relevance, because patients have knowledge that's unique, that the doctors don't have, that the health economists don't have, and that the HTA body doesn't have. It's fair. Patients should have the same rights to contribute as other stakeholders such as doctors within the process. It helps balance equity. So understanding how you trade off paying for treatments for one disease against another. If you can speak to patients and understand how patients experience their condition, it helps understand what are those trade-offs that the healthcare system needs to make. It's about legitimacy of a decision. So HTAs make decisions or make recommendations that lead to decisions. And obviously, if patients are going to be affected by those decisions, then it's legitimate that patients should be involved. And the final one is around capacity building. And this was recognition that if health technology assessment bodies don't involve patients, they will never learn how to involve patients. And similarly, if patient groups don't get involved in HTA, then they'll never learn how to get involved with HTA. So this final reason was an understanding that actually the involvement process of having patients involved in HTA systems helps to bring capacity, helps to build capacity to have more patient involvement. And I just want to focus on that very first one, because I think this is the key. This is the key to patient involvement in HTA, is that patients and patient organisations, they have unique knowledge about how a particular condition, in this case myeloma, affects everyday life. And they can make that specific and really pull out the kinds of impact that myeloma has on people's lives, on people's ability to work, on essential tasks. So patients and patient groups are really good at understanding how to quantify and how to describe the impact of a condition in a way that HTA bodies find really valuable. Obviously patients understand the real pathway that they go through in getting diagnosed, getting healthcare, and what some of those challenges are. And they have experience of different treatments. They've been through various, often various stages of treatments, different kinds of treatments, and they can share their experience, good and bad, of those different treatments. And finally, but it's very important, only patients can tell you what they expect, what they're hoping for, what things need to be made much, much better in terms of symptoms or quality of life that they're really looking for for new generations of potential treatments. That relevance is important. But I would argue that it's not just about doing the right thing, HTA bodies actually need patient involvement. So it's not just a nice thing to do, they need to do it. And why do they need to do it? Well, when HTA bodies first get formed, usually, in fact, in every case, they say, we can do this on our own. We're experts in this. So we go to the pharmaceutical company and we get the evidence from them. And we know lots of doctors and we know people who are experts in health economics. And so we can all sit down together, we can look at the evidence together and we can make a decision. And they try to do this. And it falls down, it goes wrong because there are certain questions that these people cannot answer. So questions like, are there specific needs of patients that this committee doesn't know about that we need to know about to help us make this decision? Often, in the evidence presented by a pharmaceutical company, they'll have lots of different outcomes and benefits they're saying that this new treatment brings. But which of those are most important to patients? Which of those really matter? Sometimes, these new treatments companies will say, this could change clinical practice. It could change the way that you deliver care for this particular disease. And patients need to be consulted to know how that change in clinical practice will really affect them. Often, one of the critical questions HTA bodies are asking themselves is, is there a subgroup of patients, a particular kind of patient that is most in need, that would most benefit from this new technology? And it's not always about clinical measures. It can be, for example, people who live in rural communities may particularly benefit from a new kind of treatment than others, for example. And so, really, they want to find out from the patient perspective what is likely to be the impact, both positive and negative, of a new treatment. And so, they start involving the patients, and in some cases, caregivers, to give their point of view, to give their perspective. And when I speak to HTA bodies that do this, they say it improves the quality of the decisions they make. That actually that input from patients and sometimes from caregivers as well helps them make better decisions. And I'll go through an example of that later in the presentation. OK, so if that's why we're involving patients in HTA, how does it happen? Well, it happens really differently from place to place. And I have to say, in a lot of countries, it doesn't happen at all. And you might be living in one of those countries. But first of all, before I go into the exact how, I just want to just explain what we, in HTAI, what we mean by patient involvement. So there's two ways of looking at this, and we think that both are important. The first, which is the top row, is patient participation in the process. So that's being, you know, attending meetings, being invited to the committee meetings, being part of a consultation process. So the actual taking part is a really important and crucial part of patient involvement. But alongside that, there is what we call patient-based evidence. So that's evidence that exists out there in the literature about patient experiences, patient preferences. Maybe other studies have been asked, using, for example, patient registries, that gives more information about patient's experience and quality of life. So you have these two things working in tandem. You have the involvement itself, and you have evidence that underpins that. And I think the role for patient organisations is obviously in taking part. So it's in that first row. But where it crosses over is increasingly, we see HTA bodies using what we call patient-group submission templates. And those submission templates are a sort of standard form that is given to patient organisations to say, can you answer these questions for us? Can you tell us more about the disease and its impact and provide that in a written form to us? And we will consider that as part of the evidence package that we consider when we're making our decision. In terms of how that engagement process, how that involvement process works, as I've said before, in some countries it doesn't happen at all. There is no opportunity for patient involvement. And there's a lot of work that happens behind the scenes in trying to get more countries to have patient involvement processes. But often where it really starts is on this left-hand side with informal discussions. So maybe a HTA body doesn't have a patient involvement process, an official one. But they're looking at a particular treatment and they think, actually, we have too many questions about this. We need to speak to some patient groups and get some clarity. And so they may have informal occasional meetings to discuss a particular disease area or informal meetings to discuss their HTA processes to see whether patients can be involved. The second step is open consultations. This is often the first step that HTA bodies make before they go to full patient involvement. It's usually done via a website and they will say, you know, we're looking at this particular drug for this particular disease area. If anybody wants to comment, you can use this website and comment. And that's usually open to everybody. So it's open to patients and patient groups. It's open to nurses and doctors. And it's open to the general public. So that generates an awful lot of responses. And what tends to happen over time is that the HTA body realises that there's too many responses from too many different kinds of organisations and stakeholders. So they start to build formal processes and say, oh, we do want to hear from patient groups, especially about this. So they build a process in to take that feedback from patient groups. And I should just say that most of the HTA bodies do mean patient groups. There are a few situations where they want to speak directly to patients. But actually, for assessing a new medicine, it is mostly patient groups that they go to. They want that patient group perspective. And then the final box here is being represented at a committee meeting. And I realise I'm going to have to speak a bit faster. I'm going too slow. So this is how it can look in a more sophisticated HTA body. You have all of these different steps. I won't necessarily go through every one of these. But I think the important one is gathering evidence for more stakeholders. This second arrow from the left, that's really where patient groups are invited to provide detailed information about how patients experience their disease and what kinds of things that the committee should think about. The next box along is the committee meeting where they discuss all the evidence. Some of these agencies invite patient group representatives who can bring patients with them to answer any questions that the committee has or to give a presentation to the committee. I should just say that when a decision is made, most HTA agencies do not allow patients to be part of that voting on a decision. They often say citizens can represent the general public and be part of that vote, but the patients can't. And they're trying to separate conflicts of interest here. They're trying to say the health technology assessment process is there to protect the funds of the whole healthcare system. And so they want citizens to be part of that decision-making process for other patients because it's in the interest of the citizens to protect that healthcare system. I just want to look at these questions. So these questions that you can see on the screen now are from Scotland, but I don't want you to think about them as Scottish questions because actually you see these questions used in many, many HTA bodies around the world. How does this condition affect day-to-day life of people living with it? HTA bodies want to know that. How well do the medicines currently work that you have today? Has the patient organisation been able to find anybody who's tried the new medicine, perhaps in a drug trial, for example, who can give us some insight what that was like? Would this medicine be expected to improve the quality of life of patients and their experience of care and be specific? If it's going to lead to an improvement, exactly what is it going to improve? What do you expect that improvement to be? What kinds of impacts would treating a patient with a new medicine have on the family and carers? And a really important one, which is really vital this is covered off, is one of the disadvantages of the new medicine. So if a HTA body hears from patient groups, this is fantastic, it's perfect, it's everything we wish for, there's no downsides to this, they get really suspicious. Because there's no medicine that doesn't have some kind of downside to it. What HTAs are not looking for for patient groups, and they complain about this a lot, is patient groups sometimes look in the scientific literature, look at the published clinical trial results for this new medicine and they repeat all that information in their submission to HTA. But HTA get that information anyway from other sources. So it's really important when you're involved in a HTA process, that you're bringing really clearly the patient perspective. And you don't muddy that with data or evidence that the HTA body are getting from other places. I'm often asked about this third point, which is about emotion. It's not that you can't be emotional, it's okay to say to a HTA body, this disease is devastating, this disease is ruining people's lives. That is absolutely fine, but you need to go a step deeper and be really specific in how it is so devastating. Exactly what is it about this disease or the treatments that make it so devastating? Be as specific as you possibly can. And I'll do an example of that now. So this is from England, but again, I don't want you to think about this just as being from England, because I want to focus on the kinds of information that a HTA body finds useful. So this was a treatment, costly treatment for a disease called ulcerative colitis. And what happens in this disease is that at some point in time, the symptoms get so bad that you have to have surgery, you have part of your bowel or colon removed, and then you have a stoma bag or a claustomy bag.  And this new treatment came out, it was expensive. And what the data, what the evidence showed about this treatment was that it worked, but it worked before time. After a time, a few years depends on patients, how they responded, but the symptoms would come back and the patients would still eventually need to have this surgery. And so from a health service perspective, this is a clear no because you are, you're still going to have to pay for the surgery in the end. In the end of the day, the patient's quality of life ends up exactly where it would have done, with the surgery, with the bag. The only difference of having a new treatment is that you delay that surgery by some years, but you have this massive cost of paying for the drug. So in principle, when you look at this objectively, the new treatment doesn't add anything. Patients end up in the same place. It's just cost a lot more money to get there. But the patient groups, and there were patient groups in attendance at this meeting, and so they were able to take part in the discussion. And what they were clearly able to show is that there was a particular value for patients to delay that surgery. And in particular, what they were able to do, and if I go to the next slide, is they were able to answer those questions that I showed you earlier with specifics. So they were able to clearly say how the disease debilitated people. So exactly what happens to people who are not treated properly or can't get rid of their symptoms? How does it affect their day-to-day life? What was really important here was the comparator was surgery. It wasn't another treatment. It wasn't another medicine. It was surgery. And what this group were able to show is that surgery has immense problems for people. People often get really bad with ulcerative colitis in their late teens, early 20s, going into their early 30s. This is exactly when people are studying, going to university or starting a career or starting a family. The surgery also makes women infertile. And so the patient group were able to clearly specifically point to different patient populations that would be really harmed by surgery. And particularly this concept... Well, it was not a concept. This reality that women, young women could be made infertile for the rest of their life by this surgery was a real point that hadn't been considered in the discussion so far. So by being specific, they were able to show that there was a need to delay surgery. And that delay in itself had a value, an immense value on people's future life experiences. Let's just cover off some advocacy approaches. And this is really top line. And we can talk about this more in the Q&A. But obviously, you may or may not have HTA in your country. You may or may not have patient involvement processes. So I think what is the opportunity? Well, if you're in a country that has HTA and has a patient involvement process, then it's being visible to that HTA. So most HTA bodies will have a list of patient groups that they have a database of and they contact whenever there is a particular treatment that they're reviewing in their disease area. So the first thing is make sure that they know about you. Make sure that you're on that list. And the second thing is be prepared. If you can see that a new treatment's coming down the line, you know, it's in the news amongst the myelomid community, then you're going to know that sometime soon it's going to come to your HTA body. So be prepared to develop the evidence that really shows what currently is the gaps in patient need for people with myeloma specifically in your country. But if you don't have this opportunity, what if you can't be involved in a HTA process? Well, it all starts with making the arguments as to why the HTA process needs to have patient involvement. And we do that at HTAI at an international level. We put HTA bodies that have no patient involvement process. We put them in touch with others that have won or have started one recently and we encourage them to learn from each other. But I think from a patient group perspective, it's making those political collections with, you know, the Ministry of Health, et cetera, to show and make them hear over and over again that patients need to be involved in these kinds of healthcare decisions. Also, if there's any consultations happening, might not even be about HTA, it might be a national consultation about the healthcare system and healthcare delivery. Be part of those consultations. So put your name forward and start... So people start seeing your name and your organisation as a partner in these kinds of consultations. Even if there's no patient involvement process, approach the HTA body and let them know you're there. Let them know you're there. And if ever they're assessing a myeloma treatment, that they can always call on you. They can always pick up at the phone or set up a meeting. So be really mindful that sometimes you have to push yourself out and keep reminding the HTA bodies that you're a potential resource for them. Now, the media, this is something I feel quite difficult about, to be honest. When we... Before we had patient involvement in HTA, the way that patient groups dealt with decisions made by HTA bodies was use the media. So a drug would be turned down and the patient groups would go on the media and talk about why this was unfair and how this was impacting people's lives. But then what happened quite quickly is that for every disease, every time this happened, different patient groups would be coming out with the same story. And so it started to lose its value as a strategy. And what also happened at that time was... Because these decisions are very difficult decisions to make. A HTA body doesn't say no because they're evil. They say no because the evidence provided by the company didn't convince them that there was value. That's really why they say no. And so what started to happen was it created a divide between the people who make the decisions and the patient groups. The patient groups sort of shouting really loudly from the media while the HTA bodies were trying to do their best and work out how to make better decisions. So when you use the media, you can do it. I'm not saying it's wrong to do it, but think about using them in a way that really exposes the fact that patients are not involved in this decision-making process. So it's not just that it's unfair that a treatment hasn't been approved for reimbursement. I mean, that is unfair, but it's also unfair that this decision was made without any representation from patients or patient groups to make this decision. And I think that more nuanced approach would be my recommendation. In either situation, whether you have patient involvement or not, think about the evidence. So this sort of evidence ladder we have on this slide, this is what I've observed over many years as HTA bodies have started to include patients and patient groups. The involvement starts, and initially what patient groups did was bring stories, was bring sort of verbal stories and perspectives and quotes, really focusing on that emotional component of a disease. And what they learned through this process was, actually, that's not getting us far enough. What we need is evidence. We really need evidence to take this to the next level and to show that we're not just bringing stories to HTA bodies, but we're actually substantiating the main points of those stories with our evidence. And then the evidence becomes more robust over time. And then they develop capabilities to actually generate, you know, quite complex evidence that sometimes is evidence that the HTA bodies and the industry cannot generate, as they don't have the same resources and capabilities in terms of access to patients. I would argue that this ladder also applies if you don't have a HTA body or you have a HTA body that doesn't include patients. Because when you're doing, for example, you're meeting with a policymaker around HTA patient involvement, actually having evidence to back up your policy asks is just as important as it is for HTA. Or if you're developing a media article to show why patients are being left behind because of decisions made by HTA, then having the evidence to back that up makes your story so much stronger. So I would argue that you need evidence either way. And it's, if I want to sort of make it simpler, you go from we want this to we want this. And it's specifically important because we have evidence to show X, Y and Z. Rule two, being really specific about what it is you want. So our evidence highlights that it's this need and that need and the other need that is really causing problems for patients with this disease. And that's why we're asking for A, B and C. So being as specific as you can with your asks and the reasons why you're asking for what you're asking for is for me the key to this. And it works with policymakers and it works with HTA. I won't go through this in detail, but there's lots of ways of generating this evidence. Interviews, surveys, focus groups, some patient groups, you know, quite big, well-financed patient groups actually create their own patient experience registries so they can capture this information over time. You know, and how this is provided to decision makers. Obviously, I've talked about patient submissions to HTA, so that's one way, expert testimony. And that could be at a committee meeting, but that can also be at these one-off meetings, these ad hoc meetings that HTA bodies sometimes organise. Yes, it's okay to have patient stories, but include the evidence in there. Back up what your patient stories are telling you with some evidence. And you can use that with policymakers to highlight the need for change and you can use that with the media to create a pressure for change. And I'm still doing okay for time, nearly finished, you'd be glad to know. So this is just more details about if there's no patient involvement or no HTA. So again, think about those political connections. Think about how you make the argument for more patient involvement or some patient involvement in your reimbursement or HTA decision-making process. Think about getting case studies of how it works in other countries so that you're not just asking for something with a blank sheet of paper, but you can say, for example, in this similar country, they have a patient involvement process and this is how it works. So you actually come there with ideas and solutions and examples. If you're not invited, introduce yourself anyway. So as I've said before, try to set up a meeting with the reimbursement authority or the HTA body and just introduce yourself. If they don't want a meeting, just develop a CV, talking about your group and the connections you have and the kinds of evidence you've generated locally so that they see you as a credible and valuable resource that they could turn to you in future. And as I've said before, use the media appropriately. Yeah. I'm really going to finish up now with just a quick point of some useful resources. So the group that I'm involved with, HTAI, has a lot of information for patients and patient groups. And I'm assuming you'll get these slides afterwards. So I'll check that with Kate, but you can have these slides afterwards. And so that's the links here are all the latest links. I've checked them today. So that link will take you to the HTAI patient and citizens involvement group and it will take you to resources that are designed for patients and patient groups. This is a really good resource. So this was developed by Pee Coda, which is the name of an agency in Canada. But again, don't just think of this as a Canadian resource. This has some really good general advice about how to submit information to HTA bodies. This could apply anywhere that you have a patient involvement process in HTA, really, really good, really well laid out. And they give examples of the kinds of sentences they look for when they get information from patients. So throughout the book, it'll say, OK, this is your point. Think about seeing it like this. Think about using your evidence this way. So really clear guidance. NICE also has lots of guidance. Again, it's based on the English system, but a lot of their guidance applies more generally. So I pulled up this one, which is their hints and tips when preparing to be a patient expert. And it particularly has some guidance on what to do if you're invited to a meeting, what kinds of things to concentrate on. You know, how do you bring the facts to life as a patient expert for the committee? This is an old resource, I think it's 2010, but don't let that put you off. The reason I've included it here, first of all, is seeing multiple languages beyond English, it's Spanish, Mandarin, Italian, Polish and Greek. It's quite a meaty document that goes through what is HTA and what is the patient contribution to HTA. So a really good background read if you're wanting to find out more information. And then the final one here is the ethical guide. We developed this at HTA AI, but obviously if you're thinking of doing things like surveys or interviews with patients to develop the evidence you need, there are some ethical considerations you need to keep in mind. And we wanted to make sure there was a simple bit of guidance that you could refer to. It talks to all of the main stumbling blocks that you might not think about around the ethical challenges of gathering information directly from patients. And I'm going to stop talking now, you'll be pleased to know. And we'll hand back over to Kate for the questions and answers. But thank you. Thank you so much, Neil. That was a really comprehensive and interesting presentation. And I can confirm that we will be circulating the slides after the webinar. And the webinar will also be available on our website. Just before I open the floor for questions, just so you're clear on how you ask a question, firstly, you can select the raise hand button, which is literally a button on your screen that has a hand on it. And that will alert me that you have a question and I will unmute your microphone. And secondly, if you would prefer me to read out your question, please just type it into the chat box and that will come directly through to me. So does anyone have the first question to ask, Neil? Oh, Fonzo, I can see you have a question. Thank you, Kate. Can you hear me well? Yes, we can. OK, thank you. And thank you, Neil, for this very, very good presentation. I think it's been pretty clear. So my question, I hope it's not out of a scope, but it has to to see a little bit with the initiative that the European Commission together with UNET started like a couple of years ago, if I'm correct, of having an HTA in joint actions or joint decisions. So I mean, I know that the patient involvement in this process has been quite low to my understanding. So I have a question from you and I'm probably with your expertise to be able to answer. So as I understand the UNET, what they are trying to do in the European Commission is to have a kind of joint decisions manner to produce a kind of common HTA reports at the European level that can serve as a basis for the different member states to make their decisions. So my question is to which extent do you think these actions are really going to have an impact on the access scheme to new treatment for patients taking into account that each member state can later make their own decisions on their own, given that they have different HTA models and so on. So do you think this is something that is going to change the status quo of the HTA and improve the access schemes or is just something like a good initiative that probably will end up in nothing? OK, so that's a really good question. It's something that we worry about, to be honest with you. So to be clear, the proposal, the HTA harmonization proposal is looking to split the decision making into two parts and to say at the moment what happens is in your country, if you have HTA, the HTA body will look at all the clinical data they will decide where the value is and then they will make some assessment on whether they're going to pay for it, whether it's affordable, whether it's cost-effective. What the European Commission would like to do is to have that first part, the clinical analysis of the evidence to happen jointly across the EU states. And that would produce a report which is around the clinical effectiveness of the new treatment. So very similar to the kinds of ways it works in France and Germany where they look at clinical effectiveness. But then the second half of the assessment, which is deciding the economics of whatever the treatment is, that will still happen locally so that you'll still have a HTA body in your country and it will be that HTA body that decides still whether we're going to pay for this or not. So the idea behind the proposal is that it stops duplication around assessing the evidence, but you still have local decision making.  It's not corona. What we worry about is that we see the need for patient involvement at both those levels. So we think that patients should be involved in the clinical assessment because patients have particular perspectives about what's important and relevant to consider in that clinical effectiveness assessment. And obviously we think patients should be involved at the local level because it's at the local healthcare system that patients have got knowledge about how they experience healthcare for that disease in the local setting. And we worry that patient involvement gets watered down, especially at that first level, because at the moment we have some countries that have very strong patient involvement processes throughout and we have other countries that have less or no patient involvement. So we worry that when you try to pull all this together into a harmonized system, that you'll end up having less patient involvement than we have today. And so that's something obviously that we discuss and we work with HGA bodies and patient groups work with the commission to try and make sure they understand the importance of patient involvement. Did that answer your question? Yeah, thanks. It was pretty clear. It's only the ones who want to apply this, but I have probably a silly question. So you mentioned that in the first part, which is the more fishable one at the European level, it's about assessing the clinical effectiveness of a new treatment or whatever. But isn't this what it's been done in the drug approver process before with the European Medicines Agency, like basically assessing the clinical efficacy and safety? So isn't it a little bit like overlapping? There's always been overlap between these kinds of assessments, but they're fundamentally trying to do something different. So the EMA is looking particularly at the benefit-risk profile. So they're not comparing with what standard of care is in Germany or in Poland or wherever. What they're doing is saying, in this clinical trial, do we have a reasonable view that the benefits that this new treatment is bringing outweigh the side effects and the potential harms that this new treatment can do? So they look at that in isolation. When you come to the HTA context, even if this is across the European level, you're trying to make much more of a comparison between what is this new treatment telling us that they have and what do we see in the real world from the treatments we already have? So it's a different perspective they bring to this. But there are moves. If you look at the EMA's 2025 strategy that they published a few months ago, there's a big element of EMA trying to align their assessments with what HTA are trying to do. So who knows? But I think you might see these worlds joining together at some point over the next five years or so. Okay, thank you. We're very clear. Thanks for the look. Thank you. Perfect. I can see that Nicole has a question now. So I'll just unmute your microphone. There we go. Thank you very much, Kate. And this has been a really exceptional presentation. Thank you so much, Neil. I wanted to ask if in any way pharmaceutical industry partners capture information on patient experience or quality of life or patient preferences, how that information might be able to be used in HTA either being submitted by the company or is it possible that that sort of data could be also leveraged by patient organizations? Really, really timely question this one. So thanks, Nicole. So this is starting to happen. And I say starting to happen because we have the very first few examples of patient preference studies being brought to HTAs. It's quite a new set of evidence for them to look at. And I think there's a lot of learning that needs to happen on all sides about what is the value of patient preference that is? What does a good patient preference study look like? What's the bad patient preference that it looked like? What methodologies become validated? And what methodologies are pushed to one side because they have challenges with them? And we don't know the answers to all of those questions yet. But it's an area that's gaining so much interest at the moment. Mainly driven by the FDA in the US who are really focusing on this idea of patient experience data. So they're encouraging companies at the moment, but it won't be long before they're mandating that companies bring this kind of evidence as part of their regulatory submission. And that means that this kind of evidence will be out there. We'll all be able to use it. So patient groups will be able to use it and HTA bodies will be able to use it and the industry will be able to use it. I think there's still a lot of questions about how it's used in decision-making processes. And there's always, if I'm honest with you, there's always a bit of a suspicion from the HTA bodies around these new technologies, around these new evidence bases. They need to understand them in a lot more detail to be able to rely on them for decision-making purposes. And that takes time. There is the project, the Innovative Medicines Initiative project, I and I prefer, which on a European level has started to look at those different methodologies and see how they can be used for decision-making in these early days. But we're all going to start seeing much more of this data floating around, much more noise around patient preference studies. I think the thing from a patient group perspective that I worry about is I would not like to see this kind of evidence being used instead of patient involvement. If you can think back to that slide I showed that said you have involvement in the process and then you have patient-based evidence. And for me, preference studies are patient-based evidence. And I worry that as decision-makers and the industry and others start to get hold of patient preference studies, they stop engaging with patient groups. So I think there's a clear story that we all have to tell which is that patient preference studies is an evolving field. We need to learn much more about it. But patient involvement needs to happen alongside that. And patients need to be involved in the design and the implementation of preference studies as well. They shouldn't be done in isolation. I'm not sure that answered your question, Nicole, did it? No, I think that's a brilliant response. Thank you very much. That makes perfect sense to me. So we have a few more minutes left for the webinar. So I'll just go to Hans, who has a question now. Hans? Yes, I have one question, maybe a bit in line with the former one. Thank you for your excellent presentation, by the way. I was wondering, because I was confronted with it once, that I spoke with a member of the HAA in my country about the involvement of patient representatives. And he was not very enthusiastic because he argued that patient advocates are biased in the sense that they always advocate in favor of the treatment. So what's your experience with the value of patient representatives? Should they also be involved in the decision-making or just give specific patient input to help the decision-making? What's your idea about that? Yeah, it's a thorny question. This is a difficult question. So we hear this a lot from HTA agencies that they don't want to do patient involvement because they think that patients are too close to the industry and they're suspicious that the patient groups repeat the lines from the industry. And of course, patients want access to new treatments. So of course they're going to campaign for access to new treatment. What I've seen over the years is patient groups are much more independent than that. So patient groups are able to... Sometimes the biggest critics, if you like, of the kind of evidence that the industry is putting forward. And I've seen meetings where it's been the patient groups that have really dug into that evidence and said, why are you not doing this? Why are you not doing that? So that's the first thing. Now, the whole voting right... I have two minds about this, if I'm honest with you. I think that HTA as a construct was there to protect the whole healthcare system. And so I really understand why most HTA bodies have voting rights for citizens but have input from patient groups. But I also understand from a patient group perspective that you want a voting right. You want to have a say in this decision. From a governance perspective, it creates a massive conflict of interest because obviously there is an interest in having a new treatment available for patients. I think it's possible to square that circle. There are lots of different techniques, such as citizen juries, other methods that can be used where you can take a variety of views in to help you make a decision. And I know some HTA bodies are looking at that. And maybe where we'll go to in the future is less of a voting approach to this and more of a multiple input to help make the final decision. And so there's lots of different methods being looked at at how you can do that. I don't think I answered your question, but I think that's deliberate because I don't think there is a solvable answer to that conundrum. Yes, I think that's more or less the answer you could give. It's a difficult one, but we sometimes get comforted with this. But thank you for answering. No problem. OK, we'll just go for one last question with Mirjana and before closing the webinar. So I'll just unmute your mic, Mirjana. Hello, Kate. Hello, everyone. Thank you for this webinar. I would like to ask a question about patients' organisations in countries like Macedonia, where HTA is not available at all. So how do you think that lobbying from patient organisations should be to the healthcare institutions where we have a very low budget for access to drugs? I mean, we are trying as a patient organisation to be in media constantly sending letters and all that we can do from our side, but still we are living in a low GDP country with very low budget for purchasing the drugs. How do you think we can handle this situation? So I think there's two sides to answering this question. So I think on one side you have what can you do to encourage patient involvement in the decisions that are made? You can't waive a magic wand and suddenly there's more money in the country than there is. So that's not in your power. But what is in your power is to work probably across disease areas. So not just thinking about this from a myeloma perspective, but across disease areas on having a system where at least how that small pot of money is allocated, that decision-making process involves patients and patient groups. So that's one element. The other thing is it's not just putting pressure on the system and the politicians. It's also thinking about what can the industry do? So there are some companies who are now starting to really think about do they have different prices in different countries depending on the GDP of that country. And there's been some experiments at that, especially in vaccines, looking at how you can do that. There's challenges with that. But it's not just pointing the fingers at the government and saying we want more access to treatments. It's about saying how can we improve the system so that at least we have a voice? It might not always be a yes, but at least we have a voice in how those decisions are made. And it's also thinking about what can other stakeholders in the healthcare system, including the industry, do to help access to medicines in countries such as yours in Macedonia? But that's just my point of view. I mean, I don't have the perfect answer for this one, I'm afraid. Neil, could I ask a follow-up question to that? What do you think organisations like Miloma Patients Europe can be doing to support national patient organisations such as Mirjana's group in Macedonia to get more access to the political environment and to help them get involved in decision-making on new medicines? Yes, I think there's several things really. One is across your network, there will be different parts of your network creating evidence around the unmet needs, the challengers' experience of care, and it's making that as generalised and usable across the countries as possible, or creating that in a way that can be interrogated by different countries who are wanting to find supportive evidence for their asks. I think in terms of the process for reimbursement, whether you've got a HTA process or not, I think it's going across your network and finding examples of where that change has happened. So a good example for you is a HTA example, but until actually just a few years ago, France didn't have a patient involvement process at all. But by networking, France got in touch with other countries that did have this process and they started doing it. And we've seen that happen in small countries as well, so don't just think about this in terms of big countries. In South East Asia, we have lots of examples where small countries are actually starting to come up with quite innovative patient involvement processes. They're not expensive, they're not as complicated as what we have here in Europe, but there are certain examples that we can put people in touch with. So it's finding those examples, whether it happens at HTA or whether it happens with the Ministry of Health as part of a reimbursement committee. But I think the first step is always to have the confidence to approach the policy makers directly, to just start building that relationship. So maybe there's something, some experiences, some case studies, some things that you can pull together as MP Europe to really get that learning, those top tips, maybe a buddying system. So the people who are new to this or are not that confident working in policy can be buddied with somebody in a different country who's got more experience in this. But you maybe do that already, I don't know. That was really helpful, that's it. We do do that through our access programme, to an extent, but it's good to get some additional feedback on how we target that programme to support our members in countries that need our help. And I've just realised that we're nearly 10 minutes over time. So I think what I'll do is I'll close the webinar now. So I'd like to thank you again, Neil, for joining today and for your really helpful presentation. I think all of us found it really useful and very comprehensive. The webinar will be posted, as I mentioned previously, on our website. We've recorded it, so you'll be able to re-watch it and disseminate it through your networks. And if you have any follow-up questions, we're happy to help answer them. So please just email us at info at mpeurope.org. And the last thing is to just thank everyone for joining. I know it's a bit of a difficult time and we really appreciate your support and your participation. So thank you very much, everybody. Thank you for inviting me. It's been a pleasure. Wonderful. Thank you very much. Have a good evening, everybody.


Hi everybody and welcome to today's Barn's Takeout. My name's Amy Gillette and I'm a collections researcher. Today I'm delighted to be talking with you about this painting. It's entitled Two Mysterious Cabins, painted in about 1934 by the Italian artist, Giorgio De Circo. And just to get this out of the way, you may be looking at the painting and saying to yourself, I see three cabins and I happen to have a copy of the original catalog card right here in front of me and its original title when it came to the barns in 1937 was Mysterious Bathers. So you know to answer that question and now with that said, let's head on into the barns and look at where it is in the foundation, look a bit at the artist and then think some more about the painting. So here it is upstairs in a little corner room in room number 22, right here on the west wall. And this is really one of my favorite rooms. I think it does a great job of bringing together African West African sculpture that Barnes had seriously collected mostly in the middle of the 1920s. A lot of metal work, especially in the middle of the 1930s as he especially as he was working with the philosopher his friend John Dewey on a book called Art is Experience that really is all about how you're supposed to engage with works of art at the barns foundation and what was really a democratic way. And then many paintings that are really quite late for the foundation late 1940s for this figure of Saint Martin by Afro, a sculpture by his brother Marko down here, late work by Paul Clay over here and then dramatically let's zoom in just a little bit because when I look at this particular wall at the barns I see a couple of themes that to me emerge and that the two mysterious cabins participates in. So on one level kind of in these on the lower level we've got sort of iterations of solitary figures, the Saint Martin women at table by Benar, by Matisse. We have a New Mexican figure of Saint Michael the Archangel down here. We've got the standing figurines and the masks by West African sculptors in the vitrine and then above these paintings that engage with architectural themes like Paul Clay's Village Among Rocks, The Mysterious Cabins, A Scene of Acrocorinth also in Grease by Alexei Grichenko up here and then architectural ironwork immediately above the cabins that in its triangular shape seems to echo the pediments of the cabins that we see down here. So we might be bringing these themes into our reading into our reading of the painting but let's just take a peek first at Giorgio de Chirico. So here he is only a couple of years after he painted The Mysterious Cabins, painted it in 1934, displayed it in Roman 35 and then in 1936 to 38 he was actually living in America in New York and visited the Barnes Foundation and here looks I think faintly amused to be surrounded by all this Americana. And then in the ensuing years two self-portraits that he painted of himself kind of the left over here we've got him looking like a Roman senator, nude except for his drapery. Here he's kind of playing with the Roman artistic idea of verism or truth to life where in the case of the senator you see say the face is not idealized but betraying that the man the man's age that he's old enough and wise enough to be ruling wisely and justly. You know likewise here goes no young heroic man over here either and then on the right hand side we have him looking like a Baroque portrait done by Velazquez of the Spanish king. So he's treating history almost as like a series of costumes that he can take on and off with a smile on his face but really showing us his truly deep and discursive engagement with history and art history that he does I believe bring to the mysterious cabins and mysterious bathing scene. I'm just going to put on my my noisemaker over here and as for the mysterious cabins Dikirico was a mysterious artist but these is funny and wonderfully strange as they look have an unusually straightforward explanation to them actually and I brought to you here a retrospective quote given by George Dikirico in the year 1973. He's saying the idea for the mysterious baths came to me once when I happened to be in a house where the wooden parquet floor had been polished with wax. I watched a gentleman walking in front of me whose legs reflected in the floor. I had the impression that he could sink into that floor like in a swimming pool and that he could move and even swim in it. Then I imagined strange swimming pools with men immersed in a kind of water park. He used to sit still and moved and at times stopped moving to converse with other men who stood outside of the swimming pool. So there we go. We've got the water park, the brown zigzaggy water. We have men immersed in it. It does look like this guy over here is kind of gripping the ledge right there. Is it about to try and converse with this kind of heroic colossal suited figure of a man gazing out into the distance against these hazy mountains that might have been the mountains of Greece against this wonderful what Barn said was a renwar sky in which these these flags are kind of standing like still and in suspense. So then to kind of get to other aspects of the mysterious baths, a lot of this was rooted in Georgia to Kyrgyz childhood in Volos, Greece. Volos was a much mythologized city by the way. It was the city where the Argonauts, the myth of the Argonauts of Jason and the Golden Fleece took place. It was also very near Mount Palaeon, the home of of a famous centaur. It was near the site of the myth of Leda and the swan and so we've got childhood memories kind of brought together with mythology. I should stay straight away. On the left hand side we've got this vintage postcard that you can see is of Volos. It's printed here in in Greek and also then in Latin letters. Georgia to Kyrgyz's dad, Averista to Kyrgyz, was in charge of the firm Thessaly Railways and actually connected Volos to Mount Palaeon, the centaur's home, as well as to Athens and connected the city of Volos itself to the seashore and the railway firm had at the newly accessible seashore this series of cabins built, changing cabins where you could go into an individual one, take your clothes off, and then from inside the cabin enter the water by means of these ladders and as a little boy de Kyrgo was just fascinated by their transformative aspect where you could have a person kind of looking modern and vulnerable and man very much stamped with your time wearing whatever fashion was fashionable then and then you'd emerge on these ladders into this literally naked kind of primordial humanity and not only that but de Kyrgo was kind of horrified at the ladders how you could see down just a few feet until they disappeared into the oceanic abyss maybe some of you recognize that kind of similar horror of deep water and then there were also swans kind of nearby that had come from the Anaveras River and so we're bringing together the sites, memories, de Kyrgo's impressions, he was also his interest was super peaked by the way in which these cabins seemed to resemble masks and almost like the West African masks that you can see them set up next to at the barns where they by masking seem to disclose something metaphysical or mysterious about humanity where when you go into them as when you put on a mask there's something transformational you may be kind of unveil instead some sort of higher or deeper truth about humanity or human experience and for that it seems to be going into the mythology mythologization of man and the sort of conversations between mythical and modern man which are themes that de Kyrgo seems to be drawing out in these mysterious baths and it was indeed quite a long series it started one year earlier in 1934 with a series of 10 lithographs that de Kyrgo had made to accompany poems called mythology by his friend Jean Couteau and as a matter of fact if we don't see it here but in other lithographs you see like leaping centaurs like those that live in on Mount Julian next to the mysterious water but also going deeper connecting this kind of Greek mythology with dinosaur history and let's look back at this image over here of um the swan note how the plesiosaur from de Kyrgo's favorite childhood book the world before the flood getting deeper into that oceanic history and oceanic abyss that he was kind of talking about when he talked about his fear and horror of um of the ladder going down into the water and um and so he kept repeating these theories um these theories these series to try and I think get at um more of a fleshing out of the conversations between myth um between peep history and the experience of modern man we see um this is kind of splendid an image of 1936 it's called mysterious baths Manhattan where he believed that these um skyscrapers of Manhattan really took on the same mysterious aspects um their kind of ability to both fail and unveil as we saw with the cabins that he amalgamates too with his architectural motifs from other paintings like the um the curtain sanctuaries of temples that we can see over here and over here that we can also see out other paintings at the barns foundation like the rival or the red tower that he painted in the teens and these resolved um oh oh so before we get to that actually one more thing that I'd like to think about so as he's working through these series I wanted to touch briefly on this idea of repetition but before we get to the finale so here's um here's a quote that I thought was incredibly useful um by Emily Braun in a 1996 um book or exhibition catalog called the Kiriko in America she wrote in the famous critic Clement Greenberg's terms the avant garde moves while alexandrianism or what was believed to be this kind of decadent period of um of Greek or Hellenistic art stood still but the kiriko rejected the modernist strive to supersede in favor of kind of a pre-post-modernist deepening that arrests time and a continuous back and forth of associations citations and repetitions if you want to remember him being a roman senator or being a spanish baroque king inspired by Friedrich Nietzsche's notion of the eternal return the kiriko conceived of his art as an endless recycling of motifs themes and styles he also adopted Nietzsche's perception of modernity as the age of comparison wherein all styles civilizations morals and habits can be seen side by side and are available to the common man and aristocrat alike and so I think first of all this um this leveling of the fine of the high with the sort of quotidian every day the popular is so perfect both for the kiriko and for the barns foundation this is exactly what barns at the time was really trying to flesh out and bring to our experience with John Dewey um but with this idea of repetition and the repetition of motifs I think that here's a wonderful way to look at it finally where this is um this is an installation done in Milan in 1973 this was actually the equation of the quote about the water parquet that I read that we looked at a little bit earlier together and we see this like triumphal resolution of these series of paintings in the mysterious baths fountain where we have um real water it's immersive it's a real um swimming pool and people have used it as such with the cabin um with the swimmers where we've got the actual water and the um sculpted three-dimensional water um I love this guy doing freestyle over here and then we see um the so-called metaphysical source of the water over here with its painted zigzags kind of coursing down into the stream and I think what kiriko really was getting at at this is um the water was basically a site of that idea quoted from the Greek philosopher Heraclitus that everything flows that everything is cyclical but kind of as the motif of the mysterious baths paints again a little bit differently in every iteration that adds just a bit um to the kind of mythology of man um the kind of metaphysical meanings that you make for yourselves out of your experiences and your memories and in the same way I think that you get the same experience at the barns foundation every time um you bring yourself to paintings like the two mysterious cabins here we'll look at it again um it's just a teeny bit different for you and so plenty to think about with these wonderful mysterious images plenty of mystery to discover and um I should note by the way that I'll be teaching a course on de Kiriko in April that anyone's welcome to sign up for and um and so that is it for today's takeout thank you so much for watching I'm Tom Collins new bower family executive director of the barns foundation I hope you enjoyed barns takeout subscribe and make sure your post notifications are on to get daily servings of art thanks for watching and for your support of the barns foundation


It's now Walmart versus Amazon. Now this is it. Walmart has figured out what to do. Walmart knows that Amazon's Achilles' Heel is fresh food. It's absolutely the Achilles' Heel. Walmart can offer it. It's very hard for Amazon to ship fresh food. Now maybe Amazon does some same-day delivery, but that's very expensive. I don't know whether that would even do the margins for crime. They might not care initially, but in the end, I think Walmart's got a formula. And no one else can compete with Walmart because no one else is in a position where they have a CEO, Doug McMillan, who's backed by a family, and he's done a remarkable job. He raised wages that just then, therefore, kept people much longer. He used to have a lot of turnover there. They've got a strategy, and this isn't even jet.com. And I am thrilled to see that because what it says is a young man comes in and takes a situation that had been a wasting asset and he's turning it around. It's still early, but he's doing it.


Magandang Arau, mga kababayan. Welcome to the Science Innovation Series. I'm Giselle Concepcion, a scientist and professor at the Marine Science Institute. I do research on marine drug discovery. With me is my co-host, Professor Benji Valiejo of the Institute of Environmental Science and Meteorology and he works in the field of biogeography and ecology and he is the science, technology and society program coordinator of UP Diliman College of Science. I'd like to introduce our special guest today who is our expert on the big one. This is none other than Dr. René Renato Solidoum who is the Undersecretary of the DOSD for DRRCC or Disaster Risk Reduction and Climate Change. He is also the OIC of FIVOX. All of us aware of the role of FIVOX in preparing us for disaster preparedness, particularly relating to earthquakes and tsunamis. So Dr. René, can you tell us what you think is the big one? The big one is an earthquake that was turned by the media as the earthquake that can cause the most devastation in Metro Manila. This is the big one that is going to happen in Manila and it can cause many buildings to collapse and many injuries are going to be caused. Other than that, since Metro Manila is the seat of power in terms of governance and business and the surrounding provinces of Bulacan, Rizalcavita and Laguna are the biggest economic contribution in our country. The effects are not only physically, but indirectly in business and governance in the whole of the Philippines. So the big one is the impact of an active thought. We call it the valley thought system that goes from Bulacan to Laguna to the valley of Rizal, Metro Manila, and Cavite, to Laguna, from Bulacan. And because of this, if this happens, we should be ready because a lot of things can happen. First, the strong impact that can be caused if the energy of the earthquake that comes from a segment of the valley thought, the West Valley thought, is magnitude 7.2. This can be caused by Metro Manila, Bulacan, Western Rizal, Northern Cavite, and Laguna of shaking intensity or earthquake of intensity 8. This is the earthquake that has been felt since the 1990s in Baguio and Cabanatuan, where people cannot stand. And it is possible that low or high buildings can be broken or can't collapse. And that's where the deaths and deaths of people started. Other than that, of course, because of the operations of the government here in Metro Manila, there are a lot of services that can be stopped, if we are not careful. As many as possible will die. Based on our estimate, in Metro Manila, there are about 31,000 to 34,000 estimates. But if we include the Karating province, there are about 48,000 of our estimates. So what is the basis of your estimate? We have a lot of sources. First, we need to study what will happen in the future. That's why we will enter the stage of disaster imagination. If we prepare the disaster in the Philippines, we will really be able to talk about the faults that are active around Metro Manila. It is possible for Metro Manila to be destroyed. And we will be able to study this if the number of deaths and deaths are high. So to know the cause of the disaster, we need to get the length of the fault so that we can estimate the magnitude that it can cause. And if we know the magnitude, 7.2 of our estimate, we can simulate this. It is the basis of disaster and the most severe disaster is the intensity. When it comes to the effect, of course, there is an engineering aspect to it. How severe are the buildings that you saw earlier today? And the effect of the small, medium to high-rise buildings? And if we don't have any information, how many people are inside the house? And if the window comes at night, how many people will die? So that is the basis of our estimates. And we still have a lot of consequences, right? So the disaster imagination is very important. We need to know the possible events. Not just the inside, but especially the effects on us. How can we affect the individual, the family, the employees, the government, and the service? Benji was telling me that the big one was relative to the other 7.2, the other 8, the other 5. That was the big one. So the perspective of the individual is very important. So the disaster imagination is like an internal simulation. But it's not enough. Maybe the family, the community, the LGU, the province, the region, and the national, all of them imagine a disaster. And the demographics, the infrastructure, and the economies that can affect the earthquake or tsunami that hit us. So one of our latest disasters in Yolanda, you talked about the one in the Metro Manila area, West Valley Fault, right? What happened there in Yolanda? That's the disaster imagination that we can use for other potential disasters. So when it comes to the land, if it's also the Metro Manila area, West Valley Fault, Luzon, and Metro Manila are the most affected. If we want to talk about the place where we will go, where the land will come from, and how high is the island that comes to us. If that happens, how high is the sky, how high are the term-sorts, how high are the islands that can go. So that's the problem. But the impact, there are a lot of things to know. Demographics, population, building stock, how many people are there, a lot of people. Is the storm surge in Yolanda the same as the tsunami? The same effect as the tsunami. But the storm surge is because of the heavy rain that hit the land. The heavy rain that hit the land is because of the heavy rain that hit the land. The water is getting thicker to make it rain. So that's the earthquake that hit the land. That triggered the tsunami. So it seems like the disaster preparedness in the coastal region, rural areas, and urban areas. There are a lot of geographical elements and risks that can be damaged. There are a lot of things that are not exactly the same, although the storm is the same, but the scale or magnitude of the storm can also be different. You mentioned the disaster imagination. Because it is taught in our high schools, in general science, that we are only learning a little, not just a little, I don't know how many. In science, unlike here in NCR, because there is a student who mentioned it in his report in my class, who had a big learning experience in Manila in 1863. There are also drawings and pictures of the ruins in Intramuros. Can this be the earthquake that happened in 1863 related to the fall of the fault lines in Manila? If we learn about the fall in one place, we will look at the written records. One more thing we can look at is the ruins. Usually in the ruins, there are signage where the infrastructure and the ruins of Lindol baguio sunog were constructed. The earthquake in 1863 came from the Mecaragatan. That's why the tsunami happened. Other than the tsunami, the major damage was the ruins of the ruins. If you go to Manila Cathedral, there are many places where the old structures of the Lindol Cathedral were destroyed. But all the Lindol that was already mentioned in Manila Cathedral came from other places that are not the same in Manila. And in 1968, there was a building called Ruby Tower that collapsed and 268 died. But the damage of Lindol was more than 200 km away. If we can see the Lindol that came from other places that were already destroyed in Manila, how much more could the Lindol be the same in Manila? That's what we need to imagine. Other people thought that we were already in a state of emergency, but the building was only a small population. Before we talk about the West Valley Fault here in Metro Manila, can you say something about the earthquake in Bohol? And we know that some of the churches there. The earthquake in Bohol came from a fort that we postulated that could have an earthquake. In 2007, we said that if the earthquake was less than the number of major sources mentioned in the fort, one fort was destroyed. But the two fortes that were in the middle of it, the one that was in the north, were not yet destroyed. The churches in Bohol were destroyed because they were destroyed for the past several hundreds of years. Because there was no strong Lindol that was still in Bohol or unwritten record. But when the Lindol was destroyed in October 15, 2013, the magnitude 7.2 earthquake, similar to the magnitude that was projected in Manila, was destroyed by the West Valley Fault. But they were not reinforced? No, they were not reinforced. The people in Bohol were still in memory. In 1990, the magnitude 6.8 was still in the north. But in the north, the epicenter was still in the north. They were still in the north. So, sometimes, our experience in preparedness was destroyed. But it was not just an experience, it was a science. Because our imagination was based on an experience that was lacking. Because the large Lindol were destroyed for hundreds of years. But the good thing that we saw here, before Formal Science, was that historians and those who documented the events that happened hundreds of years ago helped us. Now, in some of the interviews that you have given, there are those who say that the earthquake of 1568 is 357 years old. 358 years old and there is a prediction that in another 400 years, there will be major earthquakes. Is that based on scientific studies? Based on science, you know, the killer earthquakes of the past, of course, not like the volcanic eruptions that caused damage to houses and people who could be excavated. The ruins of earthquakes, you can see, in the first period, there were not many houses built here in the Philippines. So, the geologists were excavating an active fault and we were studying the layers of sediment that cut off the fault. And if there are leaves or part of a plant that can be dated to carbon-14, what is the fault? We can say that after that sediment, the earthquake happened and before the other layer that was not affected. So, we studied the west side of the valley fault system. There are two of them, the long west valley fault, 100 kilometers. The other one is 10 kilometers east valley fault. The preparation of the wind, the preparation is the bigger one. So, we studied that and we saw in 1400 years, Feevox and the United States Geological Survey, that it has been excavating four times, generating major earthquakes. So, if you divide 1400 years by four events, exactly 350 years is the arithmetic average of the movement of the fault. But, the faulting is a natural process, it is not exactly the same. So, the range that was studied, the fault was the west valley fault that it was excavating every 400 up to 600 years. Now, if we prepare this, we will use the lower limit of 400. That's the basis. And if we look at the 1658, it's not the magnitude 7, it's smaller. But if we use the big earthquake, it will not happen for a long time. So, what can we conclude comparing this? Will the big one happen in our lifetime? Or perhaps you have 400 to 600 year-ranges in the next generations. What is the major source of deaths during earthquakes? The fact that concrete will be destroyed because of their houses or buildings where they are working. And if that's the case, how is our building code well-reinforced by our buildings, the high-rise, medium-rise or low-rise, to secure the lives of our... The cost of death in the earthquake, and also our studies, because we studied Lindo and Perkto in Metro Manila, in a comprehensive study on Metro Manila Earthquake Impact Reduction Study with FIVOX MMDA and Japan International Cooperation Agency. The first death is total collapse of the building. The second death is the addition of the falling part of the building or equipment that will be automatically damaged while it's being sold. That's why you're still alive. And then, of course, one is the fall. During an after-the-earthquake, you can die there. But essentially, it should be earthquake and fire-resistant, the houses we live in. So, when it comes to the quality of our houses, our national building code and the so-called national structural code, that's good. The issue is the implementation of the building. And the implementation is a lot that can happen. That's not only for the local government officials, especially those who have control over it. They also have the same house that's being built. That's why we need to change the thinking of the government that doesn't rely on the government officials, our own community, our own house. That's what we rely on. That's a personal survival. Personal survival? It's not necessary. And I just want to explain that because our building code is good, and if we follow this, even if we can expect intensity 8, which is shaking in the development of the valley fault, this is the big one, it may not be destroyed during the earthquake. But because of the many non-engineered buildings in residential buildings, this is the one that's being done. It's being done. For example, people without supervision of engineer or architect, or even if you follow my building code, you'll see houses and houses in the valley. What we noticed was in contrast to the ordinary thinking of common people, that the high building is more delicate than the low one. In fact, it's more difficult for low building and mid-rise buildings because of very high rise. The residential building up to nine stories, 13% heavily damaged or collapsed. The public buildings, 8 to 10%. The mid-rise buildings from 10 to 30 stories, 11%. But the very high-rise buildings, more than 30 stories, only 2%. That's the difference, right? The major factor is the quality of construction and the second is the earthquake science. It's so nice to know that in general, we're not going to get casualties from collapse of buildings. But it's so important, say, for the government, national government, including the DOST and the public information and communications of the government to educate our population, especially those left behind in houses that are not regulated on construction. So what does DOST or DI Titi Bukod do to help our women? What can we do to reduce casualties and destruction? First of all, we need to make sure that people are aware of the effects on them, the disaster imagination. We made a survey tool that can do everything on its own that if their house is a one-to-two story, a concrete hard box, we can already know if it's built in Lindlion or not. How safe is my house questionnaire so that they can imagine the effects on their houses? You didn't tell me that. How safe is my house? I'm going to ask. You can see that. You can see that. The people who bought a house or condo, I have children, they're asking if the building is empty. Is the house a guarantee of safety? Because the concrete is empty and there's also a hollow block. Okay. Everything is empty. That's where we started. We need to tweak our educational system because we're professionals if we're not engineers. We don't know the minimum standards of a small house. Do you know that the minimum should be 6 inches wide and the scale should be 10 millimeters? That's the ribar. But we don't know that. Why? It's not taught. We developed that. He's talking about the ribar. We gave each one of us a chance to evaluate. Second, we need to explain that if the floor is close to a fort, the ground is fast. And the fast ground can cause the building to collapse. That's why these are mid-rise to low-rise buildings because they have a church in the morning. It's easy to break if they didn't build their houses. Second, we need to avoid breaking directly on top of active faults. We saw Benji, the up-that-you-put-up. That's the fault finder. Okay, Benji. That's the fault finder. That's the fault finder. It's really helpful for all of us. So people can imagine how close or distant they are to the fault. When it comes to building their houses, the real estate transaction will be transparent. So that they're safe in the location because it's good to have a safe location, safe construction, and the right response. So we can see that the government is doing a lot of things when it comes to the big one. So René, that's the immediate response. First, we don't need to kill people because of the construction. And then location-wise? Location-wise. And then, what's the government doing? It's like the next response, which is to cope with the difficulties that these victims go through. So we need to imagine further because you're just an individual. What happens to Manila? Metro Manila. What's the government doing? Yes. Okay.  What happened to Manila? You should have an imagination. So what can we see? For example, hundreds of buildings have been damaged and potential victims. Potential victims, 48,000 can be killed. And when it comes to injuries, a lot of them will be hit, 100,000. It hurts. So we're going to match the capability of the hospital outside of Metro Manila to help. And the search and rescue is predefined on who are the forces, local government from different regions outside of Metro Manila and Region 3 and Region 4A. Do we have enough hospitals? Do we have enough volunteers? Yes. So it means that we need to have the people in the community who will treat the injuries so that those who don't go to the hospital will go to the hospital. Volunteers are very important. Yes. We need to organize medical doctors and nurses and other medical personnel. We need to organize the engineer architect, organize the search and rescue groups not only in the impact zone, but also outside. And of course, we also need to organize other countries. Even the civil military operation of military units in different countries in the Pacific and the search and rescue groups under the auspices of UN, Office for Coordination of Humanitarian Affairs, we have drills. Not only the draft government hold, but also how to rescue, how to talk to different groups in different countries, what are the signage they are going to do so that they won't be able to double the entry into the houses. So we have a lot of drills that we are doing. But one very important drill is to drill the people in their houses. That's right. We learned a lot there. A lot has happened, but not only in terms of relief, relief operations. Good lesson learned on that. But there are reports that some of the residents didn't want to leave their homes. They locked themselves in. And the others, clearly, the culture and religion has a huge impact on the survival of people. So, there is a science in the scientific approach. So this is really one area, Benji, I think, where historians, culture experts, social scientists, as well as the natural scientists and engineers have to work together with civil society to save lives and to well prevent these kinds of disasters. I really want to ask you about the tsunami. Because the damage caused by water, is it the same? Is it the same in the fall of the concrete? So how does one prepare for a tsunami that is really the result of an earthquake in the oceans? I recall in Phuket, what happened there, the survivors came to the top of the hill to the highest point of the mountain and they remembered this from their legends, again from their oral history that happened hundreds of years ago and the survivors came to the top of the hill or the top of the mountain. So, do we have that kind of initiative in the West Sea? Yes. When it comes to the tsunami, in the Philippines, we will be operating in the earthquake, 90 destructive earthquakes in the past 400 years. When it comes to the tsunami, we had 40 tsunami events in the past 400 years. Now, the two things we use when we look at the tsunami, one would be the instrumental monitoring and the second is the natural observation. Now, the problem with the instrumental monitoring is that when the tsunami comes near the epicenter of Lindol, the tsunami is 2 to 5 minutes up to 15 minutes. So, it's too much to click. So, we need to remember the natural observations and the three words should be remembered. Shake, drop, and roar. Shake, Lindol. Drop, drop the water. And then, when the water comes back, you will hear the sound or roar. You can't just see the water but if the water doesn't come back in about 10 hours, it's just a low tide. Because we need to look at the natural observations of the earthquake, drop of water and roar. So, we have a lot to use for this. There was a tsunami of 5 meters and no one died. So, the first liners are the fisher folks. Select groups that we should train. Fishermen, when they are on the beach, they are going to the bank but when they are in the water, they are going to the deep part of the sea so that they won't be affected by the tsunami. They will be safe in the middle of the sea. So, our show is good and we have a lot to do to guide our fellow countrymen. But on the ground, the early warning device, we said that our mobile phones are already there. So, is that included in our early warning devices and training? Do we have frontline groups that we train to relay warnings to the rest of the community? Okay. When it comes to earthquake, you don't have any warning. Because when you have an earthquake, there is no prediction. So, what will happen is that after an earthquake, you need to know how strong the intensity of the wind that happened. So, what the DOSD-FIVOX does is that we make software based on the impact of the earthquake and based on the magnitude the local government can estimate the intensity of their places and potential damage to focus on the response. When it comes to the intensity information, that can be shared rapidly with the SMS. But when it comes to the tsunami, there should be a lot of combinations. Because we have a lot of women in places even in the shoreline on the telephone. So, when it comes to that, what we do there is a natural observation because it is sure that they will see the wave of water when it comes to the storm. So, they have a prepared evacuation plan to go to high places along with the program. Second, it is possible to give a warning or at least to give the information through Twitter and Facebook. It is just fast. This would imply that people should know what the tsunami is, what the warning system means so that when they read the SMS, they will not ask what it means. So, all of the warning systems aside from technology, you have social preparation for them to understand what the message is. When we have a big disaster like Big One. Because we can see that a lot of communications are on the cellular phone network. Is there a scenario like Big One here in Metro Manila? Is our cellular phone network reliable? Good question. Where are you looking at? Our cell phone has a signal that our cell phone is not available. Especially when it is not available on the cellular phone, it is temporarily stopped. We should think of ways to give information. We will go back to the broadcast radio. Broadcast radio. Or in our system that we are using Japan's communication system. We should develop the warning net via satellite directly on the cell phone. You don't need a tower. So, there is a technology that can be developed. But again, of course, there is technology but not all have receivers. So, there must be community-based communication. We teach in the mountains of Panyare. There are kalembangs in the mountains of Panyare. It is very important. But it is good in our research in UP, there are ways to work on the connectivity. There are other ways to improve our connectivity. It is important that the DOST is a champion. Because that connectivity is fundamental to all the initiatives and programs very important connectivity. In the past, in the DOST, it was transferred to the DICT. But we don't stop because we in the DOST, in FIVOX we, for example, in FIVOX, we are very reliant on the satellite. Because we are archipelagic. But if our internet infrastructure is good, there will be more stations that will improve. Because it is very hopeful. And the ODAS, the outdoor antenna system, needs to be complemented by the indoor antenna system. Rene, I wanted to ask you about the new research that we are doing to monitor earthquakes, the science of seismology. You said seismometers are called that. It will not really detect the earthquake in the epicenter. It will detect it. But sometimes, the distance from where the earthquake is is censored. It will be overwhelmed. I also read that in Chile, there are scientists who made models. A computer model, maybe it is not accurate, but the quick response or the speed is considered better than the accuracy. So it is a bit of a big data science. They have big data, they have a database, and when there is an event that will happen, they match it with the data. So are we doing it? Yes, we have been doing it for a long time. That's what I am talking about with software. We trained the local government. We have a rapid earthquake damage assessment system. You can use the system in two ways. One is to model the earthquake that can happen and see the hazards and the effect. That's the scenario. The other one is when there is an event, the intensity is high. You can also run that. Speed and intensity. What we have done is we have trained local governments. We have trained state universities and colleges for them to help the local government. We have trained D.O.S.T. because we are trying to bring down the science in the region. That's right. Regional.  And what we need is exposed elements that can cause damage. We have a crowd sourced using LGUs. What are the data we need to estimate the impact? Do you have a model in the region or LGUs that makes everything right? Crowd sourcing or preparedness? I don't know if there is a model, but I know that several cities in Metro Manila, we have trained and they populate their database. That database, I call it exposure database. We don't really have a national exposure database of Philippines. That's the search of every country. That's it. If there is any kind of disaster before and after, can you estimate how much potential it can affect? After the disaster, can you say that this is the problem, this is the cost of damage. It can also be in agriculture. We have to build that so that we can make the information more accurate and transactions more transparent. I want to ask you about the new program of the DOST that was recently approved. This is the space program that is low and not too high in the atmosphere. That's right. I know that it's approved by the current administration primarily to deal with disasters and change. Is that technology sensitive enough to detect, for example, fault movements so that the seismometers don't just detect it from a distance there are limitations on seismometers. Will that get GPS or something like that? In many areas of the earthquake, the limitations on the small earthquake were also overcome. They developed a more sensitive instrument and the magnitude of the earthquake can be recorded. We have 10 in the Philippines. That's what happened in Japan when they underestimated the magnitude. We have now 10 of that to address that. To monitor fault movements, you have an incitement in the ground and in the space. We have installed many GPS stations that we occupy on these monitors. Here in West Valley Fault, we have it. When it comes to space, we acquire data and using interferometry, we can determine if the ground is moving horizontally or up and down. That's not just a volcano. This space initiative of DOST, we will launch another satellite by 2018 from above. We hope that with some of these sensors, we can do interferometry. Our main use is before the disaster or after monitoring what is happening in the environment, in our forest, in our agriculture. It's impressive and it's so comforting to know that our initiatives are people-centered or human-centered. Of course, in anything we do, we always think of the rest of nature. I'm so curious about the earthquakes and tsunamis. There is also devastation and damage to the rest of nature. Not just humans. Maybe next time we will also talk about the bench. At this point, we have a lot to talk about that we hope stimulated the interest and disaster imagination of our citizens here and elsewhere in the world. Thank you so much. Dr. Rene Solidum, you are admirable in FIVOX and DOST. Here at UP Bench, we are fully supportive of all the efforts of the national government. As far as saving lives due to disasters. We have a lot of partnerships. FIVOX, maybe in the next programs, your other guests are our partners. No, we learn a lot from Japan and earthquake prone U.S. Italy Thank you so much everyone for staying with us in this science innovation series featuring the big one. Bye for now.