 The last session is going to focus on the European Atlas of Access Myeloma Treatment. It's one of the biggest and most important programs, as you know, we have an MPE. And probably many of the things that I'll be talking about, you'll already know. However, I'll try to give also an update on what has been happening since the last AGM when we had an update on this, and we'll also have two of the pilot participants of the Atlas coaching program here with us speaking about their experience and what they took with them and how we can maybe improve the program in the coming years. So as you know, Myeloma and the Myeloma patient community, as the disease, the community as well is very heterogeneous. And that is both an opportunity and a challenge. We have different challenges in each of the countries. Some of them common at a European level, but mostly challenges that are very different in countries, different priorities, also different levels of resources to actually do something about it and skills in the countries and in the organizations. We also have different health systems and so on and so forth. So the list is quite long of how different we are, and therefore it is very important to tackle access or any program related to access to treatment, keeping in mind how different we are and how different the needs are that we have. However, it's also a fact that we have different roles in advocacy. So we have groups that focus mainly on support and information for patients. So that would be the level that is in touch and constant touch with patients, support the individual patient, provide patient information. We then have a layer of advocates who are active in the health policy field for advocating for better regulations, for better policies and for better access to treatment. We then have another layer which is trying to make research more patient-centric and have an influence in research in order to have better clinical trials, to accelerate research and to make it more efficient. They collaborate internationally with clinicians and with industry and they help defining research priorities and conduct. However, when we look back at the last decade in myeloma advocacy and also the myeloma field, we've seen the presentation of Alfonso this afternoon, how incredibly successful the clinical side has been, how many new compounds, new drugs we have on the market, how the pipeline looks as if it were to explode, that's wonderful. But how come that despite all these advances from a clinical point of view, we haven't really reached or achieved what we thought or wanted to achieve at an advocacy level? How come that we still have access issues to treatment in every single country of Europe? That is one of the questions that the Atlas tries to address. It might be worth thinking about what are the issues that we might have not done wrong but maybe approached from a perspective that could be improved and it is possible that maybe we've focused along the last years and decades too much on emotions, opinions, which are very important but they need to be in the right balance with evidence that you bring to the table when you speak to stakeholders. So you need to show the human side of this horrible disease, what it does to single patients that live with that disease but in order for stakeholders to take a decision they need evidence. It is not enough if they feel for you. Another thing that we might want to think about is that are we really targeting the right stakeholders? Is it are we focusing on the right stakeholders nationally and even at the European level or even are we maybe tackling the European Commission when we should be tackling maybe the Ministry of Health? Those are all questions that we also need to ask ourselves. The other one that came to my mind and that we've seen throughout the last couple of years of development of the atlas is what kind of channels are we actually using to reach those stakeholders? Are we using emotional ways? Are we approaching this from a strategic point of view? What is the strategy we all have which will be very different in each of the countries and for MPE it will be also different at a European level than it will be for you at a national level. Those are questions that we need to ask and others also. Is it maybe that we've been using strategies, the same strategies that we saw from another patient organization in another country that worked very well and that doesn't work for us that we maybe need to tailor that, maybe individualize that a little bit and adapt it to our own needs, our own contacts? Do we have the right skills and not only me as Ananda advocating at a European level, I would think within my team do I have the knowledge I need in order to achieve what we need to achieve for patients? The same question should be asked at a national level. Do I have employees or volunteers in my team that can help me achieve what I need to achieve? Do we have a strategy? Do we have the resources to be successful? We could go on the whole afternoon around those questions, duplicating efforts is another one that we often have. So that is that. But when speaking about the atlas and what the atlas tries to tackle is access from a very broad perspective because access is not just about pricing. We've heard a lot about pricing this afternoon. It is a big issue. But within countries, when analyzing, we've seen many other factors that have an influence on access. For instance, patients or doctors don't know about treatments. They don't read the clinical guidelines. We've even had complaints about doctors not speaking English and not being able to read the abstracts from conferences like EHA or ASH. Lack of specific expertise and training in countries. We've heard complaints about that. Patients that do not get the diagnostics they need or that patients are diagnosed way too late is a problem as well. Adequate referral systems where we see that patients, the referral from the GP takes way too long until they get to the hematologist, which means very often a death sentence for many of them, a failure of collaboration within medical disciplines and if you go into the unapproved drugs, you have issues like that simply trials are not available in the country where the patient lives. So if you don't have an approved drug and you don't have a trial, what do you do as a patient? You just die or you go to industry and ask for mercy. All of those are not options that are very satisfactory for us as patient advocates and where we need to do something. All patients are not told about trials that do exist. We have evidence showing that patients are available in countries but that patients do not know about them because maybe doctors are reluctant of sending patients over to another center where that trial is happening. Maybe there's no compassionate use program. What happens when we have approved drugs? Sometimes you have approved drugs that are not accessible yet, which they go through the EMA, they get approved, but then it takes sometimes years or even decades as we've heard before until that gets into the access to the patient through the reimbursement system of those countries. And then we have obviously other issues like shortages and so on and so forth. Those are many challenges but for the atlas as such is to take all those challenges and try to create opportunities out of them, try to enhance collaboration, try to become involved in research and the planning, have common goals in order to avoid duplication of efforts, try to create more skills and capability capacity among the patient advocates that advocate for access. And one of the key issues is creating evidence which is just not available. So for us as advocates to go to the authorities and present hardcore evidence for them to take an informed decision about what they do. So the essential elements of the atlas, we figure it were evidence strategy and skills and evidence, you would include clinical evidence, the perceived barriers which we call them perceived because they were based on a survey but actually they're not perceived because if you experience them in your country, they're actually there. And then data on healthcare systems, how does my system work, whom do I need to contact, what kind of stakeholders do we have and so on and so forth. And specific skills that are needed for patient advocates and organizations to tackle those issues, training with a specialized group of the university, autonomous university of Barcelona, capacity building, mentoring and one on one really coaching. And the creation of a strategy because it's worth nothing if you have evidence and you have the skills but you don't have a strategy and you don't know where you're going and that's often the case. So it is not only about having evidence as we saw before, it's one of the key elements but if you do not make that evidence accessible, it is also useless. So what we've done is we've created a platform where we put all that data together and we also have the coaching program platform which we'll talk about later on that platform where every one of you can get hold of the information that you require. If you do not find the information that you're looking for, you should contact us because our duty in the MPE team is to find that information and put it on the website if it's relevant for you for doing your work. And since reality is dynamic, what this tool does is adapt to the reality that you show. So we've created based on, sorry, based on a hypothesis that we had regarding access but that hypothesis can change. So if you feel that the data that we're collecting, some bits of it is useless, we'll take that out. And if anything missing, then we would do our best to get that information and we've done that in the past. So that will be updated and collected regularly. This is how the website looks. In case you've never been on it, it's npu.org slash atlas if I'm not mistaken and you can see that the tendency of this platform is to go from a purely based platform to an observatory, to really have something that is dynamic and adapts to the needs of our members and where you can find your way through the jungle of access to treatment. This is one of the examples of the kind of data that you might get out of it where you see the perceived barriers on the horizontal one and you have on the left side the country lists and on the right side you would have self-declared needs and health care expenditure. So what you see here, and it's very small but you can go online and download it if you want to, is some kind of powerful data with which you can go to stakeholders and say, okay, so how come my neighbor who has the same self-declared needs and the same GDP, how come they have access and we don't? And this is one of the key elements of the coaching program. It is very similar to what a project plan management tool might be. It helps you to plan. So you need to really identify the priorities we'll have afterwards. Christina Lucica talking about that, what are the priorities you have in your country, what are the resources you have, who do you know, who do you not know, what is the timeline you have in mind in order to achieve what you have in mind. And it goes around creating a whole strategy for you to get to where you want to. And that can vary. It's not something that is rigid where you would say, you know, I want to change the whole system. It can go from wanting to get one drug into the reimbursement system or wanting to have it reimbursed to even something like contacting a certain stakeholder in the country. So it's really adaptable to whatever you want to do. And so what does the coaching program provide? It provides a strong base of evidence. It builds skills and it helps to produce a strategy and also achieve with that strategy holding your hand basically to really achieve that. So what we did is a pilot with these two members for six months and we tried first to help them identify what the priorities were and then help them create the strategy they wanted and then, you know, follow them throughout the implementation of that strategy, which obviously some of it is not fulfilled yet because many objectives you might have in the healthcare field are, you know, pretty much long-term objectives. So you had online tool, webinars, individual support, provided, you know, information and materials. And if there was a need for specific expertise missing then we would put that person in touch with that expert. And the methodology, a bit of the boring part, but I think also important to just mention that it was based on a methodology that focuses on peer-to-peer learning, common goals and really monitoring and benchmarking. And some of you might think, you know, why is this relevant at all for patients and Milo are patients? And I think it's worth, you know, taking a moment to think about it because it obviously is a high-level policy and it comes back to the layers that we talked about at the beginning of what each of the groups of your groups do. What do you focus on? But in any case, it is our duty as patient advocates to work as hard as we can so that every Milo my patient, no matter where that patient lives, gets timely access to the treatment he or she needs. And that is something we all have in common. And how you get there and what channels you use and at what level you do that is, it doesn't really matter. The other thing that for me is important at this stage when talking about why it is relevant to Milo my patients is that we need to stop focusing only on opinions and complaints. We need to have a healthy balance of both evidence and anecdotes or emotions in order to move the system. And I, you know, it's something that MP has been working for, but I truly believe is that with evidence, the right set of skills and the right strategies, you can get there and we can get there together with other stakeholders. So that's basically all I wanted to say. And I'll leave the floor to, I think, Christina, who's next, to talk about what her experience was in the coaching program during the pilot time. And at the end, I mean, we'll have probably 10 to 15 minute talk from Christina and from Lucica. And after that, what we'd like to do is to focus a bit on what your needs are and how we can develop this further the coming year until the next AGM. So we'll hand out a small survey, a one-pager, I think, where we want you to write down what kind of evidence you need to do your job and a couple of questions more. And you also have a summary of the pilot results in what Anna will give to you at the end of the session. OK, I'm very thankful to be a part of this pilot Atlas Coaching pilot program. It gave me new experience on the field of project management and the wider view on the advocacy. Where I can go further on? I would like to go on the next slide. Why is the program so useful? I can say because it's quite simple tool for effective management of various types of the projects, especially for the advocacy projects. The program teaches us and upgrades existing knowledge and skills on how to solve complex problem in a simple way in nine steps, as Ananda already said. In particular, the program is useful for the most demanding projects, such as, for example, patient rights and interest advocacy, and then in the field of health policy, in the field of ensuring access to new diagnostic procedures and novel therapies. The program also enables the management of several projects at the same time, thus providing enhanced effectiveness of work in less time. And since the program is transparent and easy to use, it is suitable for both the beginners and experienced patient advocates. And what is also important, access free of charge for all users, represents its significant added value. And what have I learned or what me and Lucika learned? The program teaches us, the teachers' users, to think in a systematic, analytical and through way, and teaches us how to approach to the problem analysis and how to approach to the preparation, implementation, and management of the project. And how to systematically and critically analyze the problem and critically assess own abilities and ability of the organization in relation to the work on the project. It requires a lot of weighty reflection and concrete information from us, from the user. And what is also important, the program guides the user towards the systematic preparation of solution and offers the project implementation plan to the user. And what have I achieved? First, I have to explain something. The patient organization, which I represent, this is Slovenian lymphoma and leukemia patient association, has been quite successful in the field of patient advocacy for many years. We successfully cooperate with Slovenian health policy, as well as health professionals and, of course, with the patients. And what is also important, Slovenian health policy, for instance, increasingly involves patients, advocates in various working groups and projects. It recognized us and consider us as important partners in the preparation of health policies. So we are quite successful with the project in the relation with our health policy. Access to what is also important, that access to new therapies in Slovenia, I can say, is quite good, is good, and which is also the result of the situation in our country and longstanding activities of many Slovenian patient groups, patient organizations, in the area of advocacy. And what is also important to say is that I have been working on various projects, also like ATLASIS, for more than 20 years. Therefore, the project management method, as foreseen by the ATLAS coaching program, is quite familiar to me. Nevertheless, I was delighted to get involved in this program and tasted it with the three challenges faced by patients with multiple myeloma in Slovenia. And these three challenges are how to reduce delays in diagnosing multiple myeloma in Slovenia and then how to improve the comprehensive treatment and rehabilitation during and after the treatment. It means psychological support, nutrition support, for example. And the third is how to improve patient involvement in clinical trials. Because in Slovenia, we almost don't have any trials because we are a small country. And this is quite a problem for our patients. How has my advocacy strategy changed after this pilot program? The strategy of our organizations, which we used to solve these three challenges before the start of the pilot program, did not change so significantly after the program was completed. So it was almost the same like we prepared before. But it is very important to point out that the program helped me to contemplate the causes and those responsible for the situation, and more precisely, prepare concrete steps to improve the situation. So I benefit, of course, I benefit from the program. What kind of help am I required from the program? What kind of help am I requesting from MPE? I have got a lot of help through the pilot program. From Ananda Alfonso, from Marta Balista, from the agency, they provided me all assistance if I needed it. They guide us, Lucica and me, through many webinars and video conferences and peer-to-peer communications with a lot of professionalism, enthusiasm, and the desire to succeed together and give this important tool confirmation and variability. So I think that we did a great work. Atlas' coaching program is really great. I suggest it to all of you to check it out to try to do a project through this program. So all the best for the program in the future. Hello. I'm Lucica Nitsu. I'm representing the Patients Association, so it's my Loma from Romania. And I would like to start by thanking to Ananda Alfonso, Marta, and MPE team for giving to us as a newly created association in 2015 to participate to this coaching program that provided us with a very good tool which helped us to organize better our efforts in order to meditate for patients' rights in Romania. Why was this program useful for us? This program, as I said, provided us a toolkit to help us to better list the issues we were confronted with as my Loma patients in Romania, and then help us to identify the root causes of these issues. Starting from this, it helped us to establish an action plan and to list our main objectives to be tackled towards authorities, I would say both at national level and at the European level. Also, it helped us to better understand who are our stakeholders, and to even start planning a meeting with them. And I would say that the program was also useful for us because it kind of forced us to educate ourselves related to existing laws at national level, European regulations in the field, and guidelines from different medical agencies in Europe. For us, being a newly created association, this was very, very, very helpful. So maybe someone could help me with this. I don't know what is happening. Okay. So what have I learned? Sorry. It's a technical issue. So as I said already, the tool helped us to better organize ourselves, to synthesize our thoughts, and to obtain a wider and clearer picture of the issues we encountered in Romania. It also helped us to build an action plan, and as I said, provided a very good tool to evaluate the potential of our actions and of our advocacy message. And I found this very, very important effect that at the end of accessing all the steps in the program, I could say we have been able to have the picture of our advocacy roadmap, which was very important for us as a young association. What have we achieved? We learned to have a better dialogue and a better collaboration with different stakeholders, Varma companies and authorities, and to better address our concerns related to the access of the right treatment for the patients, especially in the hospitals. Also, we learned to formulate clear messages to be transmitted to all stakeholders in order to have available for Romanian patients also the latest modern and innovative treatments. At a personal level, and as Cristina also mentioned, this helped us a lot to improve our capacity and our advocacy skills to create the roadmap and to write our project plan in order to be able to solve and to find a solution to the issues we were confronted with. And also, we considered that this program helped us to provide us with a very good toolkit to establish our advocacy strategy and to map all the stakeholders to be involved in the process. What kind of help are we requesting from MPE? It has already been stated. We'd like to see MPE to become a voice for all associations, members, and to become a voice both at Eastern level and Western countries level. And to represent us or to work together in order to represent the patients better in front of European health authorities and in front of relevant European pharma companies. It also has been stated earlier this. I think it's a very good thing if we would be able for a group of countries and here I'm pointing out especially the Eastern countries where the situation is not so, how to say, bright in terms of access to treatments. So to have a group of countries of representative from these countries to sit together at a table with pharma companies and authorities in order to have a common language and to have a common message. And what can I say? I congratulate the team who put in place this project. It was very useful for us and I hope all of you will find it very useful in your activity and all the initiatives you will have from now on. So thank you very much.