 Hello again. I'm Ruchika Nitsu. I'm president of the association SS Miloma from Romania, an association of Romanian Miloma patients. And I'm here to introduce today Ananda Plante in Plate, sorry, and Tamas Beretschi, who will introduce us in a session where they will be talking about the patient advocate development strategies and how an umbrella organization can help you. As far as Ananda is concerned, you already know she's the CEO of NPE, and she will explain us a little bit more about the advocate program developed by NPE. And Tamas is currently working as the communication advisor of the European AIDS Treatment Group, the largest European network of individuals living with HIV. And also he's an author at U-Party, the European Patient Academy on therapeutic innovation. Allow me to tell you that Tamas is set to defend his PhD based on research into the significance and perspective of patient organization in Europe late 2016. He firmly believes that by educating people about their disease and making them more aware of their health, they will become able to back up their rights with knowledge and thereby they can make a true impact. And I would say, as the Miloma patients, we couldn't agree more with that. So this being said, allow me to invite Ananda to start the presentation. Thank you. Thank you, Lucika, for that kind introduction. So today I'll be talking a bit around the patient advocate development program that NPE has developed and the reasons behind why we decided to do this. This is something that we talked about yesterday already, that there are different roles in patient advocacy. There are different levels of patient advocacy. You have patient advocacy at a support level and information level where you support the individual patient very closely. You see them nearly every day. You have very small groups of patients even coming into the organization to get information from you first hand. You have advocate level who are active at a health policy level where you fight and advocate for better and patient-centric regulations and laws and also for better access to treatment. And there is a third layer which is about enhancing research where patient advocates collaborate internationally with clinicians and industry and you also help defining priorities and conduct. However, independently of the role that you as a patient advocate choose to have what is clear and that's something that we've also discussed over the weekend is that we all have the same objective in terms of getting the best possible care to the patient at the right moment in time. That is independent of the role we have, of the layers that I showed you before. However, depending on the role in patient advocacy, we will do that at different levels and in different ways. So for this purpose, what is clear is that we need to become involved for stakeholders. So to really pursue that objective that we have in common, we need to be involved and get in touch with medical societies. We need to be in touch with the regulator and need to provide our evidence and bring it to the table for discussions. We need to be at the table, the HTA bodies that sometimes it's difficult to get the foot into the door. However, we need to keep on knocking, payers and reimbursement authorities, industry and so on and so forth. There's a whole range of stakeholders we need to involve in. We also need to be involved at different levels, might be at European level, national or regional level and it is very important for us to know at what level we need to do what in order to save our resources and be as effective and efficient as possible. We also do it for different purposes. So we would get involved with industry, for instance, in order to design better trials or you would get in touch with medical societies to really try to incentivize them to join our common objective and try to achieve that together. However, what is also clear and becomes clearer the more we get involved with these stakeholders is that patient advocates need specific skills and they also need training and it is not something that is a one-off thing. You train yourself but it is a constant that goes throughout your whole period as a patient advocate in the scene. You never stop learning and you never stop improving the ways that you engage with these stakeholders, the way you create evidence, the way you try to convince to get them on your side or try to negotiate. You need to train yourself to know the rules that apply to what you do. You need to know the system in order to change it. You need to challenge them and you need to make a difference. So here in the patient advocate development program, what we will focus on, whereas yesterday we were focusing on the Atlas and how do we train organizations and advocates on improving access, building strategies for access to treatment in the countries. Here we go a level up in terms of not only focusing on policy but really if we have a look at these three layers, it is the layer which tries to improve research, tries to really push for better clinical trials, tries to push for better outcomes for patients, tries to introduce the patient's needs into the design of clinical trials in order to have a better outcome in the end and also have it in a more timely manner. So what areas have we identified where training is needed for the Miloma community? So the areas identified are, some of them are disease specific. You need to know about the disease, about the biology of the disease, about what drugs you have coming up, the pipeline. You need to know what drugs are approved. You also need to know what drugs are reimbursed in your system and so on and so forth. These are all disease specific ones. You then have cross disease areas that need to be covered as well. They are as important as the other ones and you need to know them a bit more systematic about the basics of medicines, research, drug development, about statistics that personally bore me to death but I know that I need them. Regulatory approval process around health technology assessment, how reimbursement works, how HTA works at a European level and what part is national. The attempts of the European Commission to facilitate that at a European level and the failures of it and that comes back to the competencies between the EU and the national level. It is really crucial for patient advocates to know not only the content about what you are going to say but you need to really, as we mentioned yesterday, avoid barking up the wrong tree. Avoid addressing issues to the wrong stakeholder at the wrong time and bringing evidence to the table that is not relevant for that stakeholder particularly. So this is how the advocate development program looks like. It is an intensive training program. We have some of the trainees here. We started the pilot this year and hopefully we only had budget for five trainees despite getting many more applications so we are going to try and get more places available for the next term. So this training, what it tries to do is to increase the number of advocates that know about the topic. All of those topics that we talked about before at the previous slide at a European level. It is really important that you as an advocate join that program not only having in mind what is happening in your own country which is absolutely relevant but what we also need is advocates who know about this and have in mind what they can do at the European level because research does not happen at a national level and that we need to keep in our minds. To join relevant discussions and influence decision making, that is the aim but that needs to happen by understanding how that drug development really works and how that process fits into the context of the whole system. So that learning is based on an online training which Tamash has been kind enough to help us with and he is doing an amazing job with that based on the experience he had at EO-Party. We also have two face-to-face trainings, I will talk about that afterwards and scientific sessions at congresses where trainees can implement what they have learned in the theoretical part. Maybe this is the point where it makes sense to mention before going into detail of the advocate development program as such the first term of it is we always complain about not having the right clinical trials in place not having the right criteria in place for clinical trials to recruit patients not having the focus on the right outcomes. All of that is correct but I think we need to combine that complain modus with something more proactive and that proactivity doesn't come by itself you really need to know your stuff in order to sit down with industry and give input into a clinical trial protocol because you have one shot, if they invite you to an investigator meeting you do it right the first time or you never get invited again and maybe if at that point you go in there, you make your case and they see that that might be useful for them clinicians and industry at the same time you might have a chance that they invite you again and you might have a chance that that protocol in the end will be implemented and that will be the protocol that will recruit your patients so it is kind of a responsibility if you think about it how important it is that we thoroughly study this so I don't know whether you see probably not we've combined the advocate development program into three parts one of it was a capacity building at EHA the European Hematology Association Annual Congress in June where we had all hematology advocates present we then had a tailored day, afternoon with our trainees and clinicians, experts in the myeloma field that would talk about the advances that were presented at EHA in myeloma, the pipeline but also around what is being presented what are the hot topics and then we went into also the clinical guidelines for treatment and diagnosis to really see how is it that a patient should be treated no matter where he or she lives the third part will take place at ESMO in September where we will cover less clinical topics we will go into those topics that we were discussing before that are cross disease and hopefully the idea of doing this with congresses was basically to not only bombard people with theory but to make sure that once you have the theory you can actually link that to where science is presented where it happens to meet the clinicians and then go to the poster sessions and have one of the superstars present to you what he's done in that clinical trial and ask him questions so that combination we found interesting and it's something that we haven't seen anywhere and hopefully that will work I know that at the beginning for some participants it was a bit tough because the presentations can be quite technical but hopefully throughout the online course and the months that are to come will manage to get the trainees to a level where they can actually go into a scientific session and understand everything and write reports for their organizations and so on and so forth so we have a training side as well you can see it over there that will be merged into the MPE website soon but you'll get information on that further in the year and that's basically it that's the structure so the timeline for this as you can see starting May 2017 we have all this what I just discussed the online course and the face-to-face trainings I'm not going to go into detail of that May 2018 we plan to start the course all over again but we will refrain from keeping the trainees that we had this year out of that program so whoever feels the need of still being part of the program and continue the learning process will be able to move up a level in their knowledge and I think that is crucial for us because we cannot with a one-off you can't do it and in 2019 and this is something that Tamash will be speaking about afterwards the plan is to hold our first community advisory board he will explain what that is but basically it's around creating a platform by which you invite industry to your table and you ask them questions and you try to turn around the tables in order to give input into their clinical development process and their protocols yeah basically it's that and I'm not going to say anything else about caps otherwise you won't be the last thing I want to say is that this program is a significant investment for us so we haven't just done it for fun it's not that we have spare money and we thought let's just spend it on this and it is important to really think about and not only us but also yourselves what the return is for the community because we've spent a lot of money on it staff and particularly Ana Vallejo has spent many many hours trying to get this working we have Tamash dedicated and he's put soul and strength into the program we have this website, the training platform we even got endorsement from EHA for the clinical program which is wonderful and we've engaged several clinicians who are very passionate about how we're approaching this and I think that's quite something so we've invested a lot in this and for me it would be important to know from your side what you think about this and how you think you can help us to move this forward the other thing that is to highlight in this slide is that we didn't develop this program to satisfy the curiosity of anyone this is not a nice to have thing what we want to create is a real base of knowledge in the myeloma community we want to create the best, the creme de la creme of knowledgeable advocates in the myeloma field and we want them to stay and that is something that we don't have at the moment and something that we need if you think about it so we really need your help for that so who are those advocates and that is my last slide we need people who are active in the field of myeloma and related diseases not limited to myeloma but amylodosis would be included we need them living in a European country we need them to be interested at least interested in the third layer we were talking about myeloma research not only at a national but at a European level we want them to really push for knowledge not do it as a one-off we want them to be persistent to stay there, to continue learning to wanting to learn more they need to speak English which sometimes is an issue but it's a must and open to new approaches and for that we need your help because maybe you're just not interested maybe you're more interested in policy or maybe you don't have time for this however in every single organization I am sure that there is someone interested in science or someone who might fit these criteria that you could identify and send over to us like for instance, Anita did with Lara where she said well I have enough to do but that person, that young lady might be someone with potential and actually it is like that so that is what we need and I'd be super happy to get emails from you proposing people applying for the next round so if you have any questions no questions I scared you all if you allow me, Ananda I would encourage anyone who feels like it to apply for this program because it is really interesting and challenging at the same time and offers a lot of support to sustain our claims towards pharma companies and authorities so Alfonso is telling me move on, questions at the end because Tamash will lose his flight I think that's what he wanted to say you know we have telepathy after so many years of working together so Tamash Thank you Ananda Thank you so much and hello again I'm sorry, I'm going to rush through this because otherwise I'll literally lose my flight so I think that I mentioned it to all of you during the previous session that I will talk about a practical example on how you can do meaningful work in patient involvement and patient advocacy with industry and also with other stakeholders and for this I will use the case study of the European Community Advisory Board on HIV and AIDS it's actually we have expanded our work into hepatitis and viral hepatitis and tuberculosis as well because HIV HIV and AIDS, hepatitis and tuberculosis come in a package so these these three illnesses and some mental conditions as well go together very often so therefore we cover all of these but let's see very quickly what the European Community Advisory Board is about it was established in 1997 and it is meant to be a forum of interaction between the communities of people living with HIV and also the pharmaceutical industry originally as you probably have similar bodies in your disease area originally there were community advisory boards attached to clinical trials or to pharmaceutical companies in the HIV field as well initially but there were a lot of problems with these community advisory boards at the time because it was very difficult to access treatment so often times clinical trials were used as vehicles to access treatment which immediately also created a certain inequality within the community some people who became members of advisory boards found easier access to medication and through the clinical trials in which they were involved there was immediately an element of corruption in this whole thing and also well this was 20 years ago it was a very new thing to work with patients for industry therefore they were also super cautious and terrified that they would do something wrong and also it was a very new concept at all that you would want to work with patient representatives so what happened there was a very specific moment when one of the pharmaceutical companies came to a meeting with patient representatives and they came with bodyguards they came to this meeting with bodyguards so there were the pharmaceutical industry representatives sitting on one side with four armed guys on the other side of the table there were like six guys with AIDS emaciated like really thin ill dying and that immediately went into the press understandably so the pharmaceutical industry said that they wanted to protect the patients that's why they came with bodyguards but obviously they wanted to protect themselves because the AIDS movement was so angry and strong at the time so this momentum this very important moment was then used and understood by the pharmaceutical industry and they sat down all the companies who were involved at the time in HIV research they sat down with the European AIDS treatment group which is my home organization and with an American fellow partner organization and they established the European Community Advisory Board this was a joint initiative by the industry and the patient community so it's not unheard of that you work together with the industry in this format it is right now the European Community Advisory Board is a working group is an integrated part of the European AIDS treatment group which is a network of individuals living with HIV we work in various fields we work in science which is ECAP the European Community Advisory Board but we also work in policy and for this we have a political working group and we also do a lot of training so we also have a separate working group which only does organizes training events at the end of 2016 we had 112 members from approximately 38 countries so there's a bit of coming and going Europe for us is WHO Europe so this includes Central Asia and it extends to into the stands into Central Asia I will not talk a lot about this because I showed you this diagram at the previous sessions but this is actually what we say this is where ECAP plays a role this is where innovation comes about this is where knowledge is produced so we believe we understand ECAP as a vehicle of knowledge production where we provide a neutral space where participants from all these four stakeholders can sit together and can work in order to achieve innovation in biomedical science now there are different models to how community advisory boards can work so these can be therapeutic area specific like in HIV or in CML the CML community advisory board was set up just recently less than a year ago and also there is work ongoing in other disease areas like skin cancer for example where similar movements are starting in order to set up such a community advisory board there can also be advisory board set up within research institutions so that's also not unheard of or specific attached to a single trial and also there can be community advisory boards that are industry initiated now the European community advisory board tries to cover all of these areas so we are we look at all the different clinical trials ongoing in HIV viral hepatitis and tuberculosis and we work with all the companies who are involved in this area be that diagnostics or even generic manufacturers we work with everyone we approach everyone and we invite them to meetings in order to make sure that we keep our communities informed and we also provide this service to the companies it's a very important perspective or aspect it's a service to the companies and I will tell you why this is important so I said the European community advisory board is part of the European AIDS treatment group which means that we are also it is also integrated into the budget of the ATG so it's just one chapter in the patient organization's budget it's not a separate entity also pharmaceutical companies contribute to the funding of eCABs through various channels first of all we get unrestricted research grants unrestricted research grants are what it says these are lump sums of money that the pharmaceutical companies give to the patient organization for them to allow them to carry out their work without any limitation or any requests or any red tape or tags attached to what we are supposed to do with this money so those are unrestricted research grants and in fact we do research from this money also and this is extremely important pharmaceutical companies pay to attend meetings now of course the question comes up why would you pay to attend a meeting where you get criticized but in fact it's not how we frame it it's not about getting criticized it's about getting advice from the patient's perspective what we do is provide input into the pharmaceutical companies research work from the patient's perspective how can you do that you can do that if you're educated if you're educated about your own illness if you're educated about the political area and the environment if you understand what's going on in your body what's going on in what we call the body positive so in the entire community there are people living with HIV so if you have a full knowledge of that if you are an expert patient then the company will be ready to pay for the services that you provide so that's why we charge for attending these meetings and the money that we get we reinvest into educating our members and teaching them about HIV and teaching them about policy so and also we get money through sponsoring of specific projects like information campaigns leaflets, brochures, websites training events also because there's this rigorous ban on direct to consumer marketing in the European Union we used to get a lot of criticism even from the European Union because we accept money from the pharmaceutical industry but in fact if you can prove that the output so what you spend the money on is actually in the public interest it is for the betterment of science and research and the health of the community then the European Union approves that you are an independent NGO and the civil society organization which is happening to the ATG consistently for the last 20 years we have never had any issues because of receiving funding from the pharmaceutical industry a partner to the European Union so it is where we say our arguments are that this is a rigorously scientific interaction we talk about science we never talk about marketing we even stop marketing presentations and send companies out of the room if they come with marketing presentations we talk about science because that's why we are there these meetings are confidential so even if we take minutes these minutes are not shared beyond the participants it's a targeted information exchange also it's on the highest possible level so it's not the marketing and not the PR people who come but medical leads research leads lead investigators who from the various companies who will come to these meetings and will talk to us and we will look at their data often before the official presentation or publication of the data and also it's outside the usual scope of interaction so it's not what pharmaceutical companies usually do it is in this case they come to an organization into a patient organization where they pay for an advisory service so it's outside the regular scope of activity so therefore it's accepted that it's not marketing and it really isn't marketing because that's not I can read the advertisements on the internet I don't need to travel to Brussels for a meeting for that so nevertheless of course we also do a lot of work to diversify our funding and it's not only pharmaceutical company funding that we receive but we also source funding from European Union projects and foundations and other sources that we can find and we do what do community advisory boards do well first of all we have an involvement in ethics which means that our members who are expert patients and educated in their illnesses or conditions and also about ethics they sit in ethics boards and data safety monitoring boards as patient representatives I don't know about your countries but in Hungary for example it's quite common that in ethics sports we have a priest who is the civil society representative why we say no way we don't need priests, pastors or rabbis in ethics sports but we need patients and we provide these expert patients who understand science and who understand ethics also we are involved in research priorities so we can tell the companies what is it that our community needs what is it that the body positive that people living with HIV or at threat from HIV need what is it where you have to do some more work also study procedures we review protocols almost all protocols currently implemented in HIV research are previously reviewed by the previously reviewed by the European Community Advisory Board before implementation not afterwards but before implementation this is also extremely important and then we can make an input into the protocol and we also certainly work in information dissemination we also do a lot of policy work so we try to intervene in pricing and also in post marketing surveillance how do these meetings or how are these meetings conducted it's usually over weekends when members don't get paid for their participation the money goes to the organization you do this as a volunteer it's usually over the weekend all your meals and your travel is covered but you get nothing else than that it's divided into five units each of them is three and a half hours and then companies can buy units so they pay for one or two units two units would be a whole day and and also as I already mentioned it's strictly confidential and then usually we stay for Sunday morning and we take care of internal business taking decisions, talking about procedures whatever there's always it's a large organization so there's always something that needs to be done and we also have a scientific officer sitting in Brussels one of my colleagues who's a full-time employee and he does nothing else but takes care of HIV, viral hepatitis and tuberculosis related science so he monitors his biologist has a PhD and he monitors what's going on in the field follows up with companies keeps the membership informed organizes the meetings what we have achieved so far of course it's been going on for 20 years so there's a huge amount of things that we've done already first of all keeping this dialogue going has been a very important point also we could achieve a number of important amendments to protocols in order to serve the interests of the patients better we could for example lower the limit of CD4 cell counts you know so we said that you shouldn't wait so long or you shouldn't start or exclude rather patients from the clinical trial just because their CD4 can their immune system is not in the shape that the original protocol for so also we maintain a full table of access difficulties and issues across Europe with all the pharmaceutical companies is it registered, is it reimbursed, is it available these three things are not the same so even if it is on the market maybe it's not prescribed so we also monitor that and try to find out what the reasons are I already mentioned the DSMB participation and also we have several members who sit in various commissions of the EMA yes we also work with WHO Europe for example the HIV guidelines of WHO Europe are usually developed as a joint effort with ECAB and the ATG but of course it's not all roses so we also have a number of challenges here first of all are we representative enough it's always a question can we always effectively reach out to all the groups who are affected by HIV you know HIV advocacy tends to be white, gay, middle class men like myself but HIV affects sex workers it affects black people disproportionately it also affects transgender people and injecting drug users so these are disadvantaged communities that are difficult to reach it takes a lot of effort to include them in our work and this also leads to a number of conflicts within the organization which need to be managed also maintaining our independence is something that we have to do on a consistent basis it's not enough to do it once but you always have to follow up on the numbers that everybody remains at arms length from industry and from all the other stakeholders and of course sustainability has always been an issue but so far so good so there's a couple of ground rules that I will not go into much detail with for example we never quarrel in front of any company or anyone who's there we also never upload companies because I mean why do you clap if someone presents their science we're not there to celebrate also we don't complain too much because that's not interesting everybody knows that there are problems so that's not why we are there we are there to follow up on scientific advancement and then it's it's your time and you invest your volunteer, you do this in your free time so if it's useless you stop it that's what I said if it's a marketing exercise then we just send the company home provide a service so you should always remain humble of course you make claims but you don't really quarrel with the companies because you I mean you are there because they pay you for a service this I was spring over and also we do a number of other activities that are there to promote science such as the journal club we organize structured readings of scientific papers we also consistently ask for unpublished data and negative results you know if everybody is so incredibly successful in science then why is progress so slow and the reason is because you don't get the negative results because of publication bias so we ask for the negative results because they are there you just don't see them and we always ask everything and anything it's a ground you always ask there's no wrong question and we allow time for complaints from the company and from our members and we try to reflect on them and we do science and policy together because we believe that as Ananda said that you can only remain credible in policy work you can only influence political decisions or policy decisions if you know what you're talking about then you are credible to get your science right and that's what we focus on that's why we educate our members consistently and we try to understand how this becomes more than just 20 people together in a room so we try to act as a group and maintain this cohesion within the group and you can read more about this in my paper which is on the internet free access it's long and boring but the paper is short and understandable thank you very much I would be happy to answer your questions but I can't because I don't have time so you can reach me on my email address and then I'm happy to answer any questions seriously by now it was good to be here thank you Thomas we go back to the session presented by Ananda if there are any questions please for Ananda yes please can I have a microphone over here please actually maybe I'm not very informed when did you start this program patient advocate development strategies investment is 50,000 euros and up to now are you happy what you have achieved and for how long this program will go on and what is your final plan or target is that okay so yeah so this is the first year we're doing it and we just had the first face to face meeting two weeks ago at the European hematology association in Madrid so so we can't really say whether we have been successful or not because we just started in May 2017 with a program we have I think a pretty good platform by now with quite some information on it and the online tool we have the tutor so I think from that side from the infrastructure side I think it has been successful but the outcomes you don't know until you know at least you have finished the first course which will be in December this year I think in one course as I said you also don't expect any miracles but my hope is that the trainees that are enrolled at the moment will keep coming back to the program will stick to it and that you know along the years we can build a knowledge base for that if it works and if we see that you know we have people that are committed to continue learning the idea is to create the eCAPs to have that kind of forum together with industry by 2019 for that we need knowledgeable patient advocates otherwise industry won't be interested in that and if we see that it's fruitful that people really move up a level in knowledge then the program will be a permanent one and hopefully you know we can expand that to anyone who's successful in the application and I don't know hopefully once you move over you have the platform and the reduction in cost is also something something realistic but for now we don't know it's a bit of an experiment because we know that in the HIV community they already have been doing this for many years so they have reached that knowledge level but they continue learning so you do these things but you are only entitled of going to the CAPs if you also agree to joining the training and advocacy for 15 years so yeah at the moment it's five persons I have to say if we manage to have a handful of people that can do this I would be super happy that would be amazing but the hope is that next year we can open it up for more kind of pilot is that to encourage national organization or to make stronger MPE I don't know you tell me so it's around building knowledge in the Miloma community so I guess it's not around national organizations or MPE at all it's it's around moving up a level the discussion we're having at the moment with industry and with other stakeholders to really get to the point where you're taken seriously and can have that one on one same level discussions with the stakeholders in order to really make a difference yeah Tamash is the trainer of the advocate development program and he's doing that very well but yeah it's not around organizations it's around the community leveling up the knowledge within the community any more questions yeah any more questions Lisa I just wanted to investment for the future I just wanted to make a comment so I think it's a good investment for the future and if we want to get into a situation that patients and patients advocates can put their interests how industries and maybe also clinics have to work with patients it would be a fantastic situation so I think it's good investment money, thank you and I mean the knowledge the need for that knowledge is not only at a European level it's also within the countries because there you have the same discussions even though research is a European matter it's not a national matter the discussions you have with affiliates of industry in the countries are exactly the same and when you go to HTA bodies it's the same when you go or you try to convince your ministry it's the same it's around having that level where people take you seriously actually not only take you seriously but have the need of involving you they see a benefit at the moment it's us trying to convince them to involve us and we want them to want us and need us Thank you I think we have another question over there I'm not sure if it will be a question as I was sitting in Tamas workshop he was talking that we need to make a structure of something that we have to offer and as I see it maybe mostly from my point of view we should be the voice of our patients and as you were saying the point that we can actually get learned it came to me like we should become informed about what the industry is doing and study actually their job and become like that we understand them and I just want to offer or maybe in my opinion it's also important to really be the voice of a patient like as a patient I have different health problems but as a patient I don't care about the name of my treatment about the name of the medicine I care about being healthy and feeling good having I will say having full quality of life so maybe that's the voice of a patient I mean as a patient I don't see my point at becoming a doctor or a scientist I see my point at becoming healthy so it's just like the idea about I know that this quality of life is something we cannot touch we can touch the medicine but we cannot touch the quality of life but just something we need to bring so yeah so it's good that you raise that so you're here as a patient advocate not as a patient I know that sometimes is difficult to but you're not here for yourself you're here for the community you represent at home and yeah let me just finish my point so that's one thing that often you know is forgotten when we get even invited by industry in order to represent that community it is good to have an idea what you know the patients you're in touch with think and so on however having hardcore evidence that demonstrates what the needs of your patients are that is the key it's not around saying I think that quality of life is good or not let's do a questionnaire let's get a thousand responses and let's bring that to industry and say there you have the response that's the answer because that is what moves and shifts and changes protocols not the fact that one of us is sitting somewhere in an advisory board over and over again one day it's in company A the next day it's in company B because we talk about the same things and we've been doing it for many years but nothing changes so it's really time for us to do that step and say yes I am a patient because I am a patient too and I'm standing here now representing the myeloma community and what I want to bring is not an anecdote of something that I heard or what I heard at the discussions with my patients it's evidence, hardcore evidence that you will not be able to ignore that's I don't know whether that clarifies okay I don't see here what for instance patient in Bosnia will have from this if you can explain that how it will influence their life their okay I'll give you a practical example maybe it's the easiest one are there any clinical trials in Bosnia okay so my example is are you aware if there are any clinical trials in Bosnia okay so I can tell you the most probable I don't know either but I can most certainly say that probably there is none yeah why why are there no clinical trials in Bosnia they even have a good treatment and nothing helps so the reason why there are no clinical trials in Bosnia is because industry is not interested in having clinical trials in Bosnia it's commercially not interesting so we and you as a patient advocate here have a duty of finding a way to convince industry to bring clinical trials to Bosnia and not stop and not sleep until that happens and that is what I do every day and that is the impact we have in patients