Welcome everyone to our webinar from WCLC 23 to you, presented by Lancaster Research Advocates. We are pleased that you are joining us for today's exciting meeting. The IASLC STARS program is a global program with a global audience and target group. We are pleased to offer live interpreting in six languages, Chinese, French, German, Greek, Japanese and Spanish. To enable the interpreter feature on Zoom, follow the instructions on this slide. Select the Interpret button, then select your language and note You that Off or Aus then offers the webinar in English. Then choose to mute the original audio so that 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 IASLC STARS program this year. The goal of the STARS program, the IASLC, is to support active advocates for lung cancer patients. The program's goals include building a supportive network of LCPRAs, educating about lung cancer science and research, modeling effective pathways to communicate science and research and identify opportunities for research funding. A few comments about today's webinar. Questions will be answered by panelists during the live question time at the end of the session. To submit questions, please use the Q&A window and as I said, instructions for interpretation will be posted in the chat. Please also note that the chat feature is not enabled for participants, but please send a message in the Q&A window if you have any technical issues. This webinar will also be recorded and later made available in all languages offered. Today there are four presenters and one moderator who will share their insights and expertise with us. This is a rare opportunity as our speakers serve as mentors for the STARS program. And our presenter is a co-founder of the entire program. She helped develop it. Our mentors are the cornerstone of the AISLC STARS program. And their dedication, knowledge and support have a profound impact on the growth and development of patient research leaders. I would like to take a few minutes to briefly introduce the respective speakers. Dr. Upal Basuroy is Executive Director of Research at the Longevity Foundation, the foundation and leading advocacy group for lung cancer patients in the United States. He is trained as a cancer biologist and researcher in the field of public health and has been advocating for patients for more than a decade. Upal is an advocate for the power of communities. Andrew Zypek is deputy director of clinical research at Go2 for Lung Cancer. He originally worked as a cancer researcher in the laboratory. He received his doctorate from Baylor College of Medicine in Houston, Texas in the USA and conducted research at various other institutions, focusing on understanding the biology behind resistance to various cancer therapies and discovering new therapeutic targets in cancer cells. Through his experiences, he became interested in how to achieve better, patient-centered clinical research and care and how to address issues of cancer disparities and health inequalities. What led you to become a professional advocate for patients? Jill Feldman began her lung cancer advocacy in 2001. after losing her father, mother, aunt and two grandparents to lung cancer. And shortly after, she launched the Longevity Foundation, the vent. In 2009, aged 39 and with four young children, Jill herself was diagnosed with EGFR-positive lung cancer. She has been an advocate for research for 13 years and she supports the advancement of patient-centered research and sits on several prominent committees and panels. In 2017, Jill co-founded EGFR ResistAssist, an original mentor for the IASLC STARS program. Dr. Anne-Marie Baird is an experienced cancer molecular biologist with research interests in the areas of inflammatory and immune mediators with the stasis cascade, drug resistance and disease biomarkers. She is currently a Senior Research Fellow at Trinity College Dublin in Ireland. Anne-Marie has been committed to lung cancer patients since 2012. Start by joining the lung cancer social media community, Hashtag LCSM, on Twitter. She is one of the founding members of the Irish Lung Cancer Community and is President of Lung Cancer Europe. The Q&A will be moderated by Janet Freeman-Daly. She is a retired aerospace systems engineer, Freelance writer and patient activist with metastatic lung cancer. After her diagnosis in 2011, she focused on: to share the experience and science of lung cancer with others. She advocates for thoracic oncology research programs at two NCCN facilities, various government agencies and clinical trials and is one of the first patients ever, who collaborates on research and educational projects with non-profit lung cancer organizations, and publishes research papers and scientific articles and the hashtag LCSM-Chat on Twitter, which ROSCIS co-founded of the patient group LCFS Hope with Answers and ISLC STARS. These experts bring a wide range of perspectives to our discussion. Let’s jump right in and hear what the experts and mentors at STARS have to say. With that I hand it over to Dr. Upal Basuroy. Many many thanks. Thank you everyone for the opportunity to talk a little bit about the research we presented at this year's conference. So now it's about examining the side effects in the patient-reported results with first-line chemotherapy compared to late-line chemotherapy and with targeted therapies. Many of you have probably seen this slide before. This comes from a good friend, who is also a STARS mentor. She can be seen here, she is also a mentor of mine. And this is a very clear representation of the patient journey and how complex this patient journey is. We as advocates, as advocates, as research advocates, we need to do research to understand the complexities of this journey and thus make this information usable for our community. That brings us to today's topic of discussion. So today I'm talking about a project that the Longevity Foundation did. This is called Project PEER. This is an international project. Patients from all over the world can take part. This is an observational study of patient and carer experience. What do I mean by observational study? This is a study where no treatment is given. So this is a survey study. Some of these fundamental questions are asked. How does the patient experience change when the patient moves from first-line therapy, which is a patient's first treatment, to the next line of therapy? This is a very important question that has been brought to us by the lung cancer community. And why is this such an important question? Ten years ago, the average patient diagnosed with lung cancer probably underwent two lines of therapy. And that's because there simply weren't many treatment options. Fast forward to 2021, 2022. And now most people who receive a lung cancer diagnosis have access to at least three to four lines of therapy. And so people move from one line of therapy to the next. And then they experience the illness differently and their needs are different. That's the basic question that we're trying to dissect a little bit here in this study. On the right you can see all the different questionnaires, that were used. And two are in one box. IORTCQLQC30 and IORTCFT. The standardized financial toxicity tool. They are used regularly. These are PAO instruments from patient-reported outcomes. And here we use these instruments for our study. So these are standard tools that we use. This allows us to better understand the patient experience and then at some point compare this data with data from patients taking part in clinical studies. But that is the long-term goal of this study. But I hope I've been able to explain to you why this study is important so that we can really understand how patient experiences and experiences also change. I would now like to explain a little to you, first of all, how this survey was developed. The survey was conducted in partnership with patients from the United States and conducted internationally, outside the United States. And in collaboration with other interesting groups, Stakeholders, clinicians, pharmaceutical companies and drug manufacturers. And the work we have done as the Longevity Foundation, has also done a similar international survey with this IGFI Resist, which has done this work, and again focused on this patient population. So this study really originated in the lung cancer community. And a patient and a caregiver each complete a basic survey and these were eleven-monthly surveys or questionnaires. Today I'm talking specifically about these patients who were diagnosed with stage 4 disease. Things change as you move from first-line treatment to further lines of therapy. So the total population here is 174 and around half of these patients are in first-line treatment, which is the initial treatment after the diagnosis, and half of the other patients are in the second-line treatment phase, i.e. the follow-up line. Here you have a snapshot of the participating patients. As I said, 174 participants at the time of analysis and the study is still ongoing. Approximately 10% of the entire sample are international and 80% are women or identify as women and the age range is between 29 and 76, average age 55. And this range, this range of ages, reminds us again that there has also been a big demographic change in the diagnosis of lung cancer. There are now many young patients who have to deal with this disease. On the right you can see the education of the participants and these types of demographics are very common when we share data from these types of studies. On the next slide we get into the data. This is a look at quality of life based on whether someone is in the first-line or second-line phase of treatment. And you see different things here. Physical function, emotional function, so firstly I feel good physically, secondly I feel happy. Then social function. Can I do social things, go out with friends? Am I functioning in my role? Can I do things that I'm supposed to do in my role? Do I have the role in my household or workplace? Cognitive function. Do I feel mentally capable and comfortable? And then the global health status. This is the general health of me as a patient. And again, these questions are standardized. And what you see on both sides, let's start with the table above. And what are these mean scores? These are the average values, mean scores, what you see there. So this is how patients feel in first-line treatment. Left, first line. And so you can see that 82 is the mean. And the blue numbers are patients who have moved away from the first line and are already on the second or further line of treatment. And you see that all of these domains, the scores, the scores, the average scores and the means are much less than with patients in the first line. So in the second. So you see a clear decline in the quality of life. This slide with these validated questions clearly expresses that patients in the second and further lines of treatment experience a decline in quality of life, as measured by these PRO instruments, i.e. patient-reported outcomes instruments. I'm sorry, the typeface is a bit light. Hopefully you can read this. But here a question is considered, which is fundamentally important for all of us as advocates, as advocates, for research. Financial toxicity linked to lung cancer. And so you see the first column, these are patients in the first line. And the second column, these are the second and further lines of treatment. The basic question here is simple, Has your financial situation changed, has lung cancer caused financial difficulties? Has your financial situation changed? And in the first line of treatment there are already some financial problems. But then on the right, the second and further treatment line, that doubled. The number has basically doubled, when we look at patients in the second and further lines of treatment. This very simple question and answer simply shows us that financial toxicity is increasing, as people move from first to second line of treatment. Let's take a more granular look at this. I don't want to go through everything, just a few highlights. As a result of your physical condition and your medical treatment, i.e. as a result of your lung cancer, you have had financial problems, For example, you can no longer buy basic things such as food or clothing. A quarter of the patients in the first line had the problem, but more than twice as many. A quarter of all patients have the problem that they have at least a little difficulty, a little lack of money, to buy basic things in life. Have you had to borrow money or sell things? That's another question. Drastic increase in patients who move from the first to the second line of treatment. So these are all patients in a very advanced stage of the disease. And now we're on the last slide. Hopefully I have convinced you that the impact of lung cancer treatment is cumulative. So when you move from the first line to the second line etc., Third and fourth line, then this impact is cumulative. Quality of life declines and financial toxicity increases. Hopefully you see both sides. Decline in quality of life, increase in financial toxicity, we have to keep that in mind as advocates, as researchers, as researchers. Because this type of data must be integrated into political decisions, in the education system and also when deciding on treatment. Because we don't do enough of it. Doctors need to have open discussions with their patients. So we're making a treatment change. You may now have to go from the first one proceed to second line of treatment. So about your financial situation. Let's talk about how you feel. Hopefully I could convince you that this data needs to be used to understand the impact of lung cancer, that it is cumulative. And we need this information then implement for the benefit of the community. So thank you very much for letting me present this. And most importantly, I would like to say that it is a privilege to be able to to be the voice for our community on such an important issue and in such an important forum. Thank you everyone and I would like to say thank you to IASLC for allowing me the ability to present some of my work here, as I have at the World Conference of Lung Cancer, at the World Conference on Lung Cancer. So biomarker tests are now an important part of treatment and we know that the current practice for biomarker tests is to get them out send to third-party companies and they then report the results back to the doctor who ordered it. So the results are not directly linked to people's lung cancer, the results don't do that themselves, the doctors do that. And it It has been suggested elsewhere that if we provide patient-friendly test summaries for patients, then this will also increase Patient engagement in discussing appropriate therapies. And then the probability increases, the probability that the proper therapy is started. On the one hand, patients want a very patient-friendly summary of the biomarker results could be included and then people have preferences about what should be in that test summary for patients. There are different preferences. How did we tackle this? We conducted focus groups and surveys of people with lung cancer and or their carers. And four areas were the focus. Firstly, we asked about the reports, what people have already received from Biomarker testing companies and how well they understand them and whether they are satisfied are with it. We then asked about the educational needs of the lung cancer patients themselves and then the associated treatment options. And then we asked people's preferences for what should be included in a biomarker summary of tests for patients. What questions should we answer, what should be in there. And then we used the data from these surveys and then we created elements came up with a format of a potential summary report and then sort of drafted it. And then we have one Worked on a multi-stakeholder advisory board, an advisory board that can be involved from providers to biomarker test providers to people with lung cancer, in order to somehow finally create such a report. And I'll talk about them first Focus groups that we did and the information that we found out from there. We really need to acknowledge that the Lung cancer community contains many people. Not just one type of person with lung cancer that exists. And so this whole wide range of... To capture patient experiences, we focused on three main groups. The first were people with lung cancer who had already had tests had, but where no actual predictable mutation was found through testing. The next two groups have already had tests and an actual mutation was found in the biomarker tests. But whether they take part in patient groups or not, is different. The second group, no, did not participate in a patient-led mutation-based group and the one in the third group already. Feedback we received from the focus groups is as follows. First of all, we have the latest reports spoken that already exist from biomarker testing companies. What we have generally heard from all groups is that the reports are... are a bit confusing or that they are not well received. Especially in this first group, they didn't have any betable mutations that worked for them were relevant and they were then very confused by a lot of the information in there and they wondered whether these listed mutations even existed were relevant to them. And the second group, who are not involved in patient groups, for whom they said that the reports have adequately conveyed what treatment options exist for mutations that can be activated. But there was confusion about the meaning mutations that cannot be activated, especially in cases of progression. Group three is familiar with the reports and understands them to some extent, but you have feeling like a lot of the patients you interact with don't feel that way. So there is a wish that these results will happen be framed in a more patient-centered manner and created as a more patient-friendly report. And with that in mind, we asked the groups what are the different elements that you would like to see in a patient-friendly summary report. And see here So what the different people have mentioned, what they would like and these are the results according to group, according to legal sense sorted. First of all, the level of information in this report. Groups one and two said, okay, high level information would be good. Group three said that the reports can sometimes contain too much information and that there needs to be more focus to the important information. Then we asked about the inclusion of clinical trials. Many biomarker reports currently contain all of them possible potential clinical trials and group one thought that should be included. Yes, clinical trials, but preferable if it's current relevant is. Groups two and three felt that this information should not be included. Because firstly, there are too many, especially in later ones Lines of treatment and group three said no, information becomes outdated and can lead to excessive focus on inappropriate studies lead. And then we asked, information about patient-led mutation groups, whether that should be included. Group one didn't think so helpful, that's not surprising, but the other groups certainly are. And finally, we asked how these mutations presented should be when groups two and three have said that appropriate treatment options and background information on the mutated should definitely be included. So with that in mind, we created a patient-centered, summary report our work with this stakeholder advisory group, this advisory board. And then we said, okay, one side, short, front and back and the length So, minimized with health literacy requirements and then name actionable result descriptions and approved ones Treatment options, specific clinical trials should not be listed based on the feedback we have received. And there it There were different preferences in these focus groups, we said, okay, then let's create a template, a blueprint, with which the providers can do it can be tailored to individual situations in patient work. So in summary we have found that it really is There is a need, there is a desire for a patient-friendly report summary. Biomarker testing stakeholders should collaborate on development and then with patients to develop that. Reporting preferences vary by patient Patients vary, but many common elements can be identified. And there is still work to be done in the future. Further studies are necessary to ensure that when the reports are handed over, the patient experience is improved and there are better results. There are a few obstacles to implementation and further work is required to determine the practicality and best methods for implementation. I just wanted to say thank you again for your time. Here is my acknowledgment. I would also like to mention my employees. Here go to for lung cancer and everyone who works with people with lung cancer and their carers have all shared their perspectives and experiences here. So Joe Feldmann is next. Good day. First of all, I would like to thank ISLC for the opportunity to present this work. Our study was about early users of the language guide. Even though there have been good advances and treatments for people with lung cancer, we also know that the stigma remains big problem is. And when it comes to lung cancer, people are often blamed. You don't see that with other diseases, including other types of cancer. There will showed people sympathy. But for people with lung cancer live and the family, we are often asked, have you smoked? And these three, these words that seem innocent can look harmless. But it has big implications, this question. And research shows that negative stigma affects all areas of the patient's and family's lives. Just like lung cancer, there are big implications. And that's why it's important that language should promote sympathy. So the words are important. That is not just a sentence. It's true when we talk about lung cancer. So we have to recognize that we should treat patients with dignity. And that's why it was Guide drawn up. It was created by a working group and lung cancer patients and their representatives. People from different disciplines and organizations also took part. It's not a complete list of what to do and what not, but the purpose is to raise awareness and promote inclusion. This guide was authorized by the IASLC in 2021 and our study was created to also provide lectures. But our goal is for the entire community to have this kind of chooses language. So there were lectures from 2022 and it was assessed how much this non-stigmatizing language choice was used. We wanted to see if there was a connection this and also the characteristics of the speakers. We have focused on the term smoker, because that is the first word of the language guide. Smoker labels the patients for her Behave. It's not humane. So we researched their use and 177 people discussed it smoking status and 43 percent used non-stigmatized language. As you can see can, we saw that the non-stigmatizing language was used more by doctors, patient representatives. But the main message is that all groups feel positive have changed, although we also note that there was not necessarily any statistical significance. But the diversity and specializations look promising in terms of how people talk about lung cancer. So this guide was very useful for our community. But it goes beyond our community. Because one of the biggest influences is beyond the control, beyond the lung cancer communities. And also the cancer network recently published a guide that cites our guide. And NCCN is the first Resource for clinicians and also defines treatment pathways. So it's an important one Acceptance and should really change things. But the change also brings challenges with itself, as we know. And old habits are hard to break. We know that the Language is constantly changing. And neither is our guide. And we want these Resolve challenges such as presenting tobacco research and numbers. We have begun discussions about plans to distribute these guides and the Develop metrics to better evaluate this guide. We also recognized that the Waldis is an important step and that we have to take further steps. We're also really trying to work on how scientists report the results, so that it is all congruent, it is not subjective and is recorded in such a way that both the Both patients and carers understand this. Those of us who are not doctors have often have difficulty understanding these scientific terms. But many people have took part in it and we are very grateful for that. But the fact that IASLC made this change has guided how we talk about lung cancer, that's a huge step. The medical one Language is traditional and used to describe cancer. But with time we learned that some of the words and phrases are harmful. The patients are too not used to attending conferences, but we do now and IASLC has recognized that. When we talk about lung cancer, we also need to promote dignity, respect in our community and also promote putting the person first. And again, I'm very grateful for that Participation of all the people and we will do more work in this area. Our goal was to document how people felt and we were very pleased with the results until now. Thank you. And last but not least, I would like to introduce Annemarie. Thank you. I am happy very happy to be here and I hope it works well. I will overcome the obstacles for lung cancer care in Europe. I'm happy to be able to do that. Unfortunately, Mario Wolfsblum unfortunately passed away last week. This has been a difficult week for all of us. And so the project that we launched was to look at the treatment path. And it is becoming increasingly complex to understand the treatment options and it So many things happen that are difficult to understand. And from the European perspective is difficult to implement a person-centered approach. The goal was the research of Experiences and preferences across the entire care pathway. And we also have different ones European countries analyzed. We reviewed the literature and also an online survey created. So the topic was raised by the members and there were a number of people who took part in the working groups to implement the projects. And of course, In Europe we have to work with many different languages. And the survey was translated into 17 languages. This is an overview of the main data of the participants. Most were women and in the 55 to 64 age group. Most of the participants had stage 4 disease, primarily adenocarcinoma subtype, with 57% saying they were positive for molecular markers. It should be noted that 26% of participants did not know whether the tumor was tested with biomarkers. Most of the participants were from cities and I should also mention that 50% of the participants come from France, Poland and Greece. If we look at the results of the diagnosis, there were many problems in terms of early diagnosis, In many countries these early detection programs do not exist and this was one of the main requests of the participants. A lot of data also shows that people must first visit the general practitioner before being referred. They also want a reduction in waiting times and more training regarding Information for the public. The aim was to reduce waiting times. It is thought that it is very important to have a main contact person, when patients have a problem and it should be ensured that there is clear information about what is happening to them and what the next steps are. The focus should be on empathy, better communication and the complications to reduce. When we look at the treatment path, there were various points that were not right were addressed by the nursing team, supply team. It's about emotional, physical aspects and also social aspects. What was most difficult for her during treatment was fear. There was a lot of anxiety before the treatment, which is to be expected when we undergo surgeries then it was also about managing pain and if we look at radiotherapy, there were problems like weakness, fatigue, stress and anxiety and also other issues were identified, but these were the main issues in terms of priorities During and after treatment there was guidance and the reduction of risks for complications. People want help managing side effects, mainly pain, but it also needs to be ensured that patients can be referred more easily and are also educated about self-management. She would like to have a single contact person again. If we look at the information, I have This is divided into different groups and when you make the decision for treatment, you have to explain what alternatives there are, what the pros and cons are Disadvantages and what are the potential side effects of the various treatments Alternatives are. Information should be given about symptoms of recurrence and how to deal with it Effects of lung cancer and the treatment itself and also faster access to treatment. There is also a need for information in treatment, particularly for clinical trials. People lack information and also, the patients thought, under-mentioned emotional and social problems. Many of the participants also expressed the need for better planning of treatment. What I haven't shown here yet but what emerged from the data was informed consent and many participants said they did not receive all the information before consenting Had to sign consent forms. So there are communication problems regarding the messages. This is from a European perspective. It should be ensured that lung cancer screening is carried out and that there is a need for rapid referral pathways. And there is a great need for improved information and communication, because that has had a big impact on the patient experience. With that, I'll hand over to Janet Dailey, who will moderate the question and answer session. We ask our speakers to come to us. Thank you for sharing your work to improve outcomes for lung cancer patients. I have a few questions about how people get involved in or with these projects begin. How was that for you? How did you start your various projects and which ones? Did you play a role in this? This project started with Lankenzer Europe and our members sit together and all have different priorities. We then try to create a project to define these topics. For example, our members have opted for the treatment path decided and I was responsible for inviting people and starting a group, also for literature reviews and translations also had to be done, Because 17 languages is a lot of work, of course. Thank you, Andrew. I believe the reason for this that we have focused on these questions and the data we get from the health systems is that not all people have been tested with biomarkers and those who have had these tests did not always receive the right therapy. We were also called and we met decided to focus on the biomarkers and we asked why no one has tried to create a patient-friendly biomarker test. We have started by to create the foundations for our community and specifically in my project I have more focused on defining the questions we will ask and ensuring that the suggestions we make have a real impact on the patient experience. But you always need a team to make it happen. Exactly, Jill and you. It comes from my personal experience and my family history. I started when I was 13 and I have seen disparities in the lung cancer community. The words are important or the language is important and I actually ten years ago a doctor said, they are too sensitive. In the fall of 2019, when I created committees as an ISLC patient representative, I decided to work on the expression, on the language that is used. And we analyzed presentations and also research work. I also worked with the Stigma Working Group. So we had synergies and we have everyone on brought to the same table. Also other people from other organizations. And I think people were ready to listen at that point. And it was a job that we made with love. And as Kristin said, there were a lot of hearts and hands contributing. Thank you. Our project began in 2019 with a partnership with IGF iResistance and this project analyzed patient experiences in the IGF community and that was the basis for the data, which I presented today. I think the questions we asked the patients are important. No research or pharmaceutical companies will spend time to understand how the patient experience changes from one treatment to the next. For that we have to get involved. The other project is that we as patient representatives raise awareness and we know that other stakeholders need to participate in these projects. We can carry out a project yourself, but if the data is not used by other stakeholders or does not accept this project, then it is of no use. And That's why we also worked with the FDA so that we can compare patient experiences in a clinical trial, for example. So has this project started and that's why we made this suggestion. There was an idea, but about projects Implementing it requires coordination of many people and the entire community to do it. If we take that into account, how long did it take from the definition of the project to to the presentation of data? An approximate indication. I have precise numbers, great. The Priority project was started in 2090 and we have different parts of the research in 2020 presented, presented and also in 2021. The Priority project was started in 2090 and that Project PEER was launched in 2021 and last year we have the final results presented and detailed information in 2023. Because a rigorous implementation by the stakeholders is accepted, it takes time. We started six months before the project began work and we also needed funding, but from start to finish the project takes a year lasted. We conducted interviews with patients and the results also had to be analyzed and then incorporated into reports. This project was about a a few months, because we only needed to analyze the presentations from 2022 and I I think it took us three to four months to verify this. We were happy with that, what we found. We were hoping that that would be the case, that this positive influence takes place. But let's now start a more detailed review. Were with us that twelve months. It's always about teamwork and what we're working on now is this data and publish results. I would like some feedback from you. What do you think, a person who belongs to the lung cancer community, as a representative, what can you do? to participate in projects like this? What would be the first steps? Jill, you are the one First. I think you can do different things. One of the points is to get together with other people entertain. I always ask a lot of questions and I contact researchers or patient representatives or other people or patients. Because if I'm really interested in something, an example of this, I have also done this in another subject area, that is dosage for example. I contact researchers and we start talking and we have a Done brainstorming. And I contacted a person in Oregon regarding PROs. I have to but say that most of the time people are willing to talk to you and with you to work together. Partnerships are important. If we have an idea, we shouldn't Be afraid to discuss these with others. I often see that the projects I start start with an idea. And I try to get involved and in the community to collaborate and share my ideas. We need someone to give us the feedback, who tells us, this is a great idea. And then you start to create contacts. And you score engage with members of the community and that is really important. I would like further questions but we're coming to a conclusion. We thank you for your presentations and also the audience for your participation. See you next time. Thank you.

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lung cancer

patient experience

chemotherapy

non-stigmatizing language

treatment pathway

early diagnosis programs

collaboration

patient involvement