Hello everyone, welcome to our WCLC 23 webinar, brought to you by Lancaster Health Advocates. We are delighted that you are joining us today for an exciting session. The ELC-STAR program is a global program with a global audience. We are pleased to offer simultaneous interpretation in 6 languages, Chinese, French, German, Greek, Japanese and Spanish. To enable the interpreting feature on Zoom, follow the instructions provided on the slide, select the interpretation globe button, select your language and mark OFF or will keep the webinar in English, then select the original word so you only hear the webinar in your language. Our user guides in the languages offered are accessible via the link in the chat. We would like to thank our sponsors and partners for their support of the ELC-STAR program this year. The goal of the ELC-STAR program is to support active advocates for patients with advanced lung cancer and advocates for patient research. Program goals include building a DARP support network of educated ELCs about science and research, modeling effective ways to communicate science and research and identify advocacy opportunities for research. We have some rules for today. For this webinar, questions will be addressed by the panelists during the live Q&A at the end of the session. To submit questions, use the Q&A window. And as I said before, the guides for using the interpretation are displayed in the chat. Please note that the chat functionality is not enabled for participants. Send a message in the Q&A window if you encounter technical problems. This webinar is currently being recorded and will later be available for viewing in all languages offered. We have four representatives and a moderator who will share their ideas and expertise with us. This is a rare opportunity because our representatives, our presenters, both for me, serve as mentors for the STAR program, and our moderators are a co-founder who helped develop the program. Our mentors are the cornerstones of the ELC-STAR program, and their dedication, their knowledge and support has a profound impact on the growth and development of patient research advocates. I would like to take a moment to briefly introduce each presenter. Dr. Upal Basu Roy is Executive Director of Research at Lung Activity Foundation, the leading lung cancer patient advocate group in the United States. He is a cancer biologist by training and a public health researcher. He has been advocating for patients' rights for over a decade. Upal is a champion of the power of communities. Andrew Kupak is GoTo's associate director of clinical research for lung cancer. At the origin of research on cancer in the laboratory, he obtained his doctorate from Baylor College of Medicine in Houston, Texas, and has done research at several other institutions focused on understanding the biology behind resistance to various anticancer therapies and the discovery of new therapeutic targets in cancer cells. Through his experience, he became interested in how to improve patient-centered research and clinical care and address disparity issues in cancer and health inequity, which led to a career transition to patient advocacy. Jill Flandon became involved in the fight against lung cancer in 2001, after losing her father, mother, aunt and both grandparents to cancer of the lung, and shortly after the launch of the Longevity Foundation. In 2009, at the age of 39, with four young children, Jill herself received the diagnosis of lung cancer. She was SJR positive. She has been a research advocate for 13 years. She is committed to understanding and promoting patient-centered research and has engaged on several notable committees and panels. In 2017, Jill co-founded the EGFR Resistants. She is one of the original mentors of the ALC-STARS program. Dr. Anne-Marie Bird is an experienced molecular biologist in cancerology who is interested in researching inflammation and immune mediators, the metastatic cascade, drug resistance and disease biomarkers. She is currently a Senior Research Fellow at Trinity College Dublin, Ireland. Anne-Marie got involved in defending the rights of cancer patients of Lung in 2012, beginning with his participation in the lung cancer social media community. On Twitter, she is a founding member of the Irish Lung Cancer Community and presenter for Lung Cancer Europe. Janet Freedom-Daly will moderate the Q&A session today. Janet is a retired aerospace systems engineer, a freelance writer and a patient activist with metastatic lung cancer diagnosed in 2011. She focuses on translating the experience and science of lung cancer for others. She champions thoracic oncology research programs at NCCN institutions, various government agencies and its clinics. And she is one of the first patients to serve on the external advisory board of Fred Hutch University of Washington, Seattle Cancer Concern, which brings together Education research projects with organizations aiming to access published lung cancer, research articles and eco-based scientific articles. These experts bring a wide range of perspectives to our discussion today. So, let’s dive right in and hear from our expert panel and star liars on this place. With that, we welcome Dr. Upal Basu Roy, presenting, who will make his first presentation. Hello, Sarah, Jeannette, thank you for this opportunity and for telling you about the presentation we presented this year on... Today I would like to talk about exploring side effects and patient outcomes in comparison to chemotherapy and targeted therapies. So, I think a lot of you have seen this slide and this slide actually comes from my friend, who is an amazing mentor to me. And this is a good picture of how the patient journey is so complex. And we as advocates really need to conduct research to drive the complexity of this journey and how we as advocates can use this information to better serve our community. Which takes me to the discussion on the next topic or the subject of my presentation which is... Today I'm going to tell you about a project that we're doing called the PEER project, which is an international observational study of patient experience and caregivers. In fact, it is a passion that is international. What do I mean by observational? This is a study where there is no given treatment. That means it's a two-survey study and it asks some of the questions, how do patients experience change when the change goes from a first line of therapy, that means the first treatment, towards the second line of therapy. In fact, this is a very important question, which is being asked of us, which has been posed by the patient community. Ten years ago, the patient, ten years ago, who suffered from lung cancer, was going through two lines of therapy. For what? Because we didn't have a lot of therapy options. But subsequently, until 2021-2022, now the majority of patients who are diagnosed lung cancer in at least three locations have access to three other therapies. So a patient can move from one line of therapy to another and they experience the melody differently, have different needs. This is why we are trying to understand through this study. What you see on the right side, actually, are the different questions and questionnaires that we use. And there, I put the questions here on the box. We have EORTCQLC30 and EORTFT, which is the standardized financial toxicity instrument. These two surveys are validated, regularly used and we see the results on the patients and instruments are also put in place. Here we can use the same instruments and we use them for our study. What does this study do? In fact, it allows us to understand the patient's experience. We can compare this data with patient data from clinical trials to see the situation. But that's not what this is about, actually, but I hope to explain to you why this study is important and how the patient experience is changing. Next pose, please. So, let me tell you a little bit about, firstly, how the survey was developed. In fact, the survey where the survey was conducted was tested on patients from the United States and caregivers outside the United States, that is, in collaboration with other parties, let's take clinicians, sponsors, decision-makers and this survey comes from the work that we did with the EGFR resistant where we had the same international survey focusing on the EGFR population. This is a study that really stands out not only to the peacock cancer patient community. So caregivers and patients have a one-line diagnosis and they have a patient and caregiver complete a baseline survey and 11 monthly surveys. We're going to talk about medicine. How are these changes experienced by patients and caregivers when they move from one line of treatment to another? In fact, the total population I'm talking about is 174 who are in the first line of treatment. That means the first treatment when they were diagnosed and half of these patients in fact are in second line of treatment. So next slide please. So this gives you a little bit of an idea of the patient demographics. As you see, I had already said it, 174 participants included at the time of the analysis and the study continues once again. 10% of participants, that means 18 patients, are international patients. 86 patients in this population are women and in any case identify as women as much for me. And we have the age between 55, as you see, that's the average age, it's between 29 and 66. That's the change that we actually see in the diagnosis of lung cancer. So, we now have young patients experiencing this disease. And on the right side you have the table, you can see the education level of the participants. And those type of demographics or demographics are pretty common. When we share data in relation to these types of studies. Now we're going to move on to the next slide and get into the data. So this allows us to actually see the quality of life on the basis, on the line of treatment, whether we are on the first line of treatment or the second. You have completely different areas. You have physical functioning, psychological functioning. You have physical functioning, emotional functioning. Am I happy? Do I feel good? Social functioning. Can I do things socially, go out with friends? Role functions. Can I do things I'm supposed to do? And like the role I play from home, that I drive, that I do in my work. Cognitive functions. Do I feel mentally capable? Well, so the global health status. It is actually the mental status of health as once. These questions are standardized. And what you see in both sides, we'll start with the top left board. And we have the scores. These are the average scores of an average. How does the patient feel in first line of treatment? You have the function, the physical function is about 82. Now we're going to move towards blue. Blue, in fact, is the patients who go from the first line of treatment to the second line of treatment. And as you can see, each of these areas, in fact, the scores, the average, actually, the average are significantly lower than in the frontline patients. So you see a decline in the quality of life of these patients. So, it is already not using these validated questions clearly demonstrate that patients in the second line of treatment, in fact, experience a decline in quality of life compared to compared to the use of these instruments. Now we move on to the third. Next slide. Next slide, please. I apologize, but in fact the writing is quite light. So you can't see it. But in any case, this one, this slide sees the question in relation to what is important for all of us, that as an activist, in fact, the financial toxicity linked to lung cancer. So, the first volume, the first line, you see the patients. The first is the processing line. The second is second line. So, we have a question that is very important. Has your physical condition or medical treatment caused you financial hardship? So, 27% of patients, first line of treatment, said that they had some financial difficulties. But when you see the parallel, the column, 56%, the double doubled between second line of treatment. That means current online. So this question in itself is just that this demonstrates that financial toxicity increases with the line of treatment, going from a first to a second. Now we're going to look at these granular questions. And I'm not going to ask these questions, we refuse. But due to your physical condition or medical treatment due to your lung cancer, have you had any additional expenses that you have had Difficulty paying or you didn't have the means to dress or eat? So, 11% of patients doubled. So a quarter of the patients, second line of therapy, 26%, said they had some difficulty buying basic things like food and clothing. Now we will see the last one. Did you have to borrow, did you have to borrow money or sell personal items? So when you can see it, it's really the difference between the first line and the second line. So we'll move on to the last slide, please. So, I hope I was able to convince you that the impact of lung cancer treatment is cumulative compared to the first and second or third line of treatment. The impact is cumulative. We see a decrease in quality of life and increase in financial toxicity. I hope you have seen both sides, a decline in quality of life and an increase in financial toxicity. I hear that researchers, members and activists, we must keep this in mind, because this type of data must be incorporated into decision-making, into education, into treatment decisions. When we don't do enough of these studies, doctors need to have conversations sincere with patients to say, here you go, you need to change from one line of therapy to the second. So, we need to talk about your financial situation. We need to talk about your feelings. So, I hope I've convinced you to use this data and see the impact of lung cancer which is a cumulative effect. Once again, thank you, thank you, thank you for allowing me to present this work. And in particular, it is a privilege to be able, to be the voice of our community in such an important forum. Thank you so much. I would like to say thank you to my colleagues for presenting the work that I will present to you on lung cancer this year. Today, the increasing reporting of biomarker testing, as we know, until now, standard practice by the... So now we have information that allows us to see the results. We increasingly see an increase in targeted therapeutic options making comprehensive biomarker testing a critical part of cancer treatment selection. It has been suggested that if you give tests this could increase involvement in discussions around targeted therapies and getting the right therapy for patients. And this allows you to start the right therapy. So what you need to know is that we are going to determine patient desire in relation to biomarker testing for lung cancer, but patient preference that needs to be taken into consideration. The way we learned it, we set up focus groups. We have focus groups with patient caregivers and the interviews focused on four areas. The first is that we asked about the reports identified from the analysis of biomarker data and how well they understand them and are they satisfied. Then, they were asked a question about educational needs in relation to lung cancer education itself and also associated treatment options. And finally, they were given a reported template regarding their preferences for biomarker tests and the report, what type of information they wanted to see and in what part of the report. Using this data from these interviews, we identified some elements and a format for reporting biomarker testing. Then, we worked with stakeholders with, that means different people who are involved in these biomarker testing processes, suppliers, testing companies, lung cancer patients to define these biomarker tests. So, first, I'm going to talk about the focus groups and the information that we found. You have to recognize that within these groups, there is no single group of people who have or are suffering from lung cancer. So, we wanted to see the experience of all these people and we focused on three groups. The first group, in fact, are patients with lung cancer, but who did not really have a mutation. So they had no results. The second group, the next two groups, these are cancer patients who had actionable mutations found through biomarker testing, whether they were involved or not. But, anyway, they were, group 2, as I just said, the second group had actionable mutations and the third group had lung cancer or their caregivers and their mutations. And just to see, we're going to see the different groups. So, we asked the questions. The first group, the discussion group's commentary on their discussions. Generally what we heard was that the reports were a little confusing and they included a lot of information that they didn't understand. Specifically group number 1, which didn't really have a mutation, it turned out that the report was confusing, that there wasn't a lot of information, that it specifically understood that it's not unclear whether the inactionable mutations listed were relevant to them. For group number 2, who was not involved in the mutation, it was felt that the report adequately conveyed the treatment options for exploitable mutations and particularly in terms of progress. Group number 3 found the familiar report to be quite familiar and they understood it, but the majority of patients did not have the same feeling. So, we see that a desire on the part of patients, a better framing of this data, better and that we can include this idea of the patient. Taking this information, they were asked questions. What elements did they want to see in these reports? What you see here are the tables that represent the different information that patients had asked questions about. The columns give the answers we found, the answers received from the first group. Regarding the level of information in the report, group number 1 and 2 said that there should be a high level of information, even if they are not involved. Group 3 said the reports might contain too much information and could not be focused on the right information. They were asked the following question about the inclusion of clinical trials and in particular ongoing clinical trials. Group 1 said clinical trials should be included, but preferred if it could be recent and relevant to each situation. Group 2 and 3 found that clinical trials should not be included because there were too many, especially for resistant TKIs. And group number 3 said that information becomes outdated and can cause a hyper focus on inappropriate testing. They were subsequently asked whether the report should include information on patient-driven mutation groups. Surprisingly, group 1 had no mutation, they said it was useless, and group 2 and 3 said it was useful and very important. We asked them about mutations and group 1 said they weren't interested, but group 2 and 3 said it was important to include related treatment options and the context of the mutated gene. Taking this into consideration, we designed a patient-centered 5-year report. We work with the stakeholder advisory group. We wanted it to be one page and to minimize health literacy needs, descriptions of actionable results, describing approved treatment options and providing general information about the gene itself. Specific clinical trials were not reported and the content of the diversity of preferences in certain areas. We preferred to make a model which was favored to allow adaptation to individual situations when working with patients. In conclusion, we found in this report that it is important that these reports must be patient-centered and that we must work in advocacy in order to develop this report on biomarkers. The report shows differences, but there are also commonalities that we highlight here. We will take into consideration in future studies to improve quality, to improve results, but also we will highlight the difficulties. It is important that the reports take the results. It is important to demonstrate existing implementation barriers likely further work is required for practicality and best delivery methods. Thank you very much for the opportunity given to me. Thank you very much for your time and I'm going to introduce Jill Feldman to my time. Hello everyone. First of all, I would like to thank IALC and IASLC for the opportunity given to me to present this work. So my study, or our study, was on doctors, on the guide on IALC and IASLC. Although we have had a lot of research for patients with lung cancer, we know that stigma remains present and a issue. And we have non-stigmatizing language that we don't want to use. All the others cancers, when for example, you have words like "I'm sorry", "how can I help you ? ". So there is sympathy, but no blame. But you who suffer from cancer of the lung, the first question we are asked is “do you smoke?” ". And these three words which are questions might pop up that don't do harm, but actually carry this stigma and significant implications. And research shows that stereotypes, prejudices, discrimination and stigma affect patients with lung cancer, but also their families. And that affects opportunities. Lung cancer, like other cancers, affects work, but also the language we use should promote empathy and stop judgment. So words are important. Not only that, it’s not a sentence. It's a truth when we talk about lung cancer. It is important that we recognize the urgency of stop stigmatization, respect the dignity of the patient. The ISO was created and a guide was implemented. It is a joint effort between ISLC, activists and patients and focus or discussion groups. And the goal was actually, and a lot of people from different disciplines and other organizations as well. The guide is not really, does not list, but in fact, it is a study that actually aims to raise awareness and promote inclusion. Therefore, the guide was approved in 2021 by the ISLC, without advice, unanimously. And our study analyzed in fact, while it created for example for abstracts, abstracts presentation. Our goal is that the community can start using this language. So, our study saw the presentation of 2022. And therefore, this was approved for watch the adaptation of non-discriminatory language in this first year. We wanted to see if he There were correlations with these points and with the different characteristics. SO, we focused on the term smoker because it is the first word on the list of stigmatizing language, from the stigmatizing language guide. Smoker, tobacco user, we dehumanize completely. It's not a person, it's a behavior. So we have a search for its use in presentation. And then we analyzed the context. SO, 77% talked about smoking and only 43% used non-stigmatizing wording, as you can find here, that non-stigmatizing language was rather used by doctors, by patient advocacy groups. But the main lessons are that all groups demonstrated positive change. If you look, there wasn't necessarily statistical significance in the other categories. But once again, diversity in terms of content and specialty show that there are positive advances and that there is a Attitudinal change in the way people talk about lung cancer. SO, the formulation guide had already made a lot of progress in our community, as I showed you, but it is also growing beyond our oncology community. I think the biggest impact is from the community outside of the community of lung cancer. The center, the national cancer network, has released a guideline on formulations which, in fact, cite the guide on non-discriminatory language and the NCCN, the network national network. It serves as guidance regarding patient pathways in terms of treatment. So, it is fundamental that they support this non-discriminatory language. Indeed, that should change the situation, but of course there are always challenges and we recognize these challenges. So there are old habits, it's hard to die, language is never static and the guide is also dynamic. So, we work as soon as we have a second version to address a certain number of these challenges, such as, for example, research in regarding smoking which presents the data in the form of tables, acronyms. We have started discussions on plans to fight discrimination and it is develop ways to measure success on a broader scale and we also recognized that while this is a crucial step, it is not the only step that must be taken. We let's really try to work on how top-down researchers work and carry out their studies so that it is coherent, non-subjective, comparable and that it is presented in a way that patients and caregivers can understand and use it. Understanding this for people who don't have a doctorate, but nevertheless understand the scientific data. But there are a lot of people involved in this, we thank them, but truly, I would really like to thank the IASLC for taking the lead on how we talk about lung cancer, how do we change this focus of feeling guilty, of saying “it’s not good” to a room of cooperation and empathy, to recognize that our language is anchored in our prejudices, in our habits, but we understood that language, certain sentences are hurtful and negative. Today we monitor the language and the IASLC has recognized this work that we have done and really, when we talk about lung cancer, we have to truly, throughout the community, to promote dignity, respect and respect of the person and the fact that we focus first on the human. So I would like once again thank everyone who was involved in this work and we will continue to do studies in this field and our goal was to document how people consider these questions and we were really happy to see the results that we have established so far here. Thank you so much. And now, I pass the microphone to Henri. Thank you so much. I'm very happy to be here with all of you. I hope my presentation will be displayed. I I'm going to talk to you about the barriers to lung cancer care in Europe and thank you for inviting me this evening. And I would just like to say that, unfortunately, one of the collaborators whose interpreter apologizes, but did not hear, Madame Forst-Blom, has unfortunately left us, she unfortunately died. So, what were the objectives of this project? The idea, it was really seeing the journey of lung cancer care for it to become seen that it was more and more complex and observed, faced with this observation, there are so many options for treatment, so much so, throughout the course of patient care, it becomes very difficult to navigate. And there is really, from the point of view of the European and Western vision, there is not a lot of understanding on the adequacy of the treatment in relation to the person-centered approach. So, the objective of our study was to explore the experiences and preferences of both caregivers and patients throughout the journey. of cancer care, but also in detail the different contexts of the countries. And I will, but I won't be able to go into too much detail today. So, regarding the methodology, that was really a documentary analysis of existing literature and online surveys via SurveyMonkey. So, it was our members who participated in this study and we have set up working groups. So there are a certain number of people who participate in these working groups to help develop the projects. And so people have contributed via forms, online surveys with questions about the language that was used in these investigations. And of course, we try to work in as many languages as possible because we are in Europe. And in this sense, we were able to have this survey conducted in 17 different languages. A quick overview of the demographics of participants. The majority were women, 70.3 in the 55-64 age group, or 40%. And that, that's really what we've seen in other previous surveys. Even if our age range can vary from 25 to 75 years, the majority of respondents were in stage 4 with a penny…and almost 60% were positive for a marker…responded to a type of marker molecular. It must nevertheless be said that based on the data there was approximately 26% of those who participated, they did not know if their tumor had been positive or by the test of the biomarker or not. So, this ties in with what we were saying regarding the complexity on testing, misunderstanding of biomarker results. And also the vast majority of people who lived in urban areas and had a higher level of education, approximately 60 of respondents and France, Germany, Poland and Greece and Great Britain. So we studied a certain number of data in the diagnostic channel, then we separated them into different categories. There were a lot of points around regarding early diagnosis. And so, Early detection of lung cancer is not systematically implemented in many countries. So, for most patients, it was important that there were early detection programs. People also said that cancer training of the lung, it would not have been given by their doctor and it is necessary to consult a expert. So, they said that the general practitioner needed to have more capacity and therefore better and be better trained on the issue of lung cancer. Regarding the priorities for improve the diagnostic pathway, again, the waiting times, the delays before being able to see experts should be reduced. Sometimes, in the diagnostic pathway, we have a lot of people who said that having a primary contact, rather than having lots of different experts through whose hands you pass, is an element that there are still stories of conflict, to really ensure that there is a very clear presentation of information, monitoring, what does the patient know, what is happening now and what will happen below. And so there was the question, how to improve communication and priorities and really focus on better communication skills and talents, empathetic as well, but also education on data, understanding of data and try to reduce the language, the complicated presentation. If we now look at the path of treatment, there are different spheres which have not been sufficiently addressed by the teams of care and I don't think this will surprise you, but there was really this emotional side, physical, emotional, physical and psychological needs of people. Those who are found the most difficult, people, respondents, in the treatment pathway, it was anxiety before surgical treatments where there was often, for example in surgical operation, there were a lot of difficulties around managing the pain associated with the operation and obviously radiotherapy, the consequences of questions around weakness, fatigue, how to manage stress and anxiety during radiotherapy. There are other questions identified around pharmacotherapy regarding priorities for before and after the treatment. The idea was really to have monitoring, to be guided on the risks of complications. People really want support in managing side effects, especially during treatment, including pain management. So, you need to know obviously that the care experts who participate in the care treatment, they are trained in this that question, but also that there is education on self-management and finally, as I have already mentioned, which is truly a point of contact, a one-stop shop to improve accessibility to the medical and care team. So, looking at the results, the information needs, in communication, those were really points that really had to be ensured all the time when you come to a treatment decision, to choose, to share decision making for the treatment, to present the advantages, disadvantages, potential side effects and how it will be managed. There was some information on supports, needs support and monitoring, follow-up care. And so, that was for example, what would be symptoms of relapse, perhaps long-term management of the consequences of treatment of the lung and its treatments and also rapid access to care services when this proves be needed. Depending on where you are in your treatment pathway. Also, information needs, what concerns the treatment route and that was really the clinical tests. I felt like there wasn't enough information that was strong communicated and also these emotional and social issues. A number of investigations Respondents also said there was a need for early information on early care systems. One thing I haven't shown here is the right to consent informed and 40% of participants felt that they had not received sufficient information. There really is a lot more information that needs to be taken into account. That's the point of view from the European perspective. The take-home messages were really putting implements much broader screening for lung cancer, the need to have pathways of very rapid rotation because obviously, when cancer is diagnosed, we must not lose time and truly improve all aspects of information and communication and follow-up because this is really what has an impact regarding the results, what people feel. With that, I will pass on to my colleague who will launch the session of questions answers. Thank you very much, Anne-Marie. I invite all our speakers to return to the screen, Please. Thank you all for sharing this important work and for improving it. I have several questions that will come into focus. How can people get involved in these projects? How did you get involved in your different projects? What was your role? Anne-Marie, I'll go through you first. So how did this project start with our lung cancer group? This is because all the members were working together at the same time of the year and defined different priorities. And what we're trying to do is try of. So, in that sense, we had others. For example, the social impact of lung cancer and. My role was really as far as the working group was concerned, it was to bring people together, to consult people, but also, you need experts. So we are very lucky to have a group that works with us regarding reviewing existing literature and data analysis and help us with translations, for example, which need to be done, since 17 languages for this survey, it is a large quantity, a large mass of work. Yes, it's a lot, indeed. Good. Someone really needs someone who can. You have to find someone who has the time to manage all this work. And I think that the reason why we focused on these questions is there is two things. The data comes from many different health and care systems and not everyone. A lot of people, not everyone was getting biomolecular tests. And so, This has become a very important point for us. And we have some people who have contacted our support systems and complained about the inaccessibility of the analysis reports which come from companies. So, we asked the question around us and said why is what why does everyone want to work on a biomarker system that is compatible with patients? We said to ourselves, it won't come from industrial partners because that's how it works and we said to ourselves we'll handle it on our own. And specifically with people who work very closely, I focused instead on the design of the questions we asked and how to get the right ones information and that the suggestions we give are open and really allow patients to really collect the experiences, the experiences of the patient. That's it, it's really partnership work. It takes a team to manage this. Absolutely. Jill, on your side. Well, it really started from a personal experience with the history of health in my family. It started when I was 13 and about ten years ago I started seeing trends in the lung cancer community and the words are important. And I really tried. Ten years ago, I had a person, a professional who told me, who said, you're too sensitive, don't take it like that. It's just words, it's not a big deal if people call you that, make you feel guilty like that. And in 2020, when we set up, when the IASLC was set up, two working groups, I proposed to make a language guide and one of our members who knew the work in course and who was starting, who was interested in working on the vocabulary used in research, in research work, in relationships with patients. And me, I also worked with the round table on lung cancer and the stigmatization of lung cancer carriers. And there you have it, the motivation was there. So the idea, I really, I brought everyone together and other disciplines and people in the organizations as well. And There you go. I guess people, back then, that's it, the time was came. People were ready to hear this and respond. And but there it was, it was a lot of work passion and a lot. There are many, many hands and many hearts that contributed. There it was. Thank you so much. Your project is yours. Well, our project started in 2019 with the partnership we had put in place. This specific trial was looking into the community and it was really the foundation of the PIERRE project that I presented above. And it really is. Here are the questions that we could ask the patient community because no work had been done there above. On trying to understand the patient experience in this community. So it's It’s really up to us, the researchers, to ask the questions and move this research forward. The other point on the PIERRE project which was the clinical part, it is us, as patients, as patient advocates, we are very sensitive to the fact that we must also have other stakeholders who participate in this project. We can do a project by ourselves same, but if the data cannot be used by other stakeholders, if other parties stakeholders do not participate or do not take ownership of this study, then we are wasting our time. SO, we consulted with the FDA, for example, and a certain number of these projects are comparisons between clinical trials and experiments, because there are already people who know, who collect this data. And so, that's how this project started and that’s how we brought the value proposition to the community. There is a bit of an idea common is that at the start, there was an idea, but in fact, to put it in place, we had to bring everyone together, we really had to put things in place. this being said, how long did it take from the first idea of the project until reaching the final state that you can present? Obviously you may not have the whole schedule, but roughly speaking, by the roupal. In fact, I have the exact number, I have the exact date. Priority has was launched in 2019 and we presented this to the different parts of the research priorities in 2020, 2019-2020. And the priorities resulted in the PIR project, therefore 2019-2023, when we were in drafting phase. So that gives you an idea of the duration. And the PIR project started in 2021 and we presented our preliminary results in 2023, a little more detailed this year. I thinks that the organization is important because doing a regular study with support from stakeholders, that is fundamental. Andrew? Yes, well, then there are a number of conversations that formed the idea at the start, but really, starting the project and we mobilized people to help us, to contribute, to help us enrich this project and also find the resources to do so. But from the moment we start the project until the end, and that puts about a year, a year, a little more, to discuss with the different healthcare stakeholders and then analyze the results, one year, one and a half years. Thanks, Jill. I see you've already talked about it. For this particular project, we took a few months because we were working on literature existing, we did not have to repeat surveys. We relied on the presentations and data from 2021-2022. It took us three to four months to really analyze everything, go through it with the goal. We were satisfied with what we had, we hoped that that would be the case. It could have, we could have failed, we could have found. But now, we are starting to do work in more detail. I think it took us about twelve months because we had to bring people together. There is really this question of work as a team, coordinate and stay a little closer. And now, we are trying to obtain from this data, to make a publication which is validated by pairs. We still have a few minutes left. So, I would like to have a comment from each of you. What do you think a person who is involved in the lung cancer community as an advocate, as a mobilizer, what can he do to participate in this type of project? What would be the first steps for someone Who wants to be an ally or support in this community? I think there are different things that you can do. One of the things is talking with other people. I like to pose a lot questions, me, personally. And I'm going to contact researchers, ambassadors, defenders, people, because if it's really something that interests me, I want to know more. A quick example, I recently did some work with another theme What I'm really interested in is the question of dosage. So I worked with a searcher. I tried to speak with him on a number of points. We started to reflect together on these points. So, Janet, you know I contacted this person that we spoken in Oregon, on EPRO. So, I think I'm actually stubborn on this, but I have to tell you that they are more than ready to answer your questions. They are perfectly motivated for that. Andrew, do you want to respond? Yes, I would like to encourage the work of partnerships. The important thing is not to be afraid to share with others, to communicate with the others. I noticed, I have an idea, then I present the ideas to others, I exchange them with others. I try to get involved in networks of members, peers, and really share our ideas. And it's rare to meet someone who says no, absolutely not. Generally, they are quite willing to cooperate. And then you have to put in place, obviously, collaborative actions. But that's it. Make contact with the community, meet members and interact with them. I would love to keep asking questions, but unfortunately we are coming to the end of our presentation. Thank you to all our speakers for their presentation. Thanks to everyone in the audience who participated. And we'll see you again at next webinar. Thank you so much. Goodbye to everybody. Good evening for those in this time zone.

WCLC 23 webinar

lung cancer advocacy

lung cancer research

ELC-STAR program

patient advocates

non-discriminatory language

inclusive language

patient experiences

lung cancer care