Endometriosis Care Needs Less Guessing And More Listening

We talk with Dr. Canio Martinelli about why endometriosis and pelvic pain get dismissed and how medical education can train future OBGYNs to reason better, listen better, and act sooner. We also dig into AI, global collaboration, and the research pipeline that could finally clarify endometriosis mechanisms if funding and integrity stay front and center. 
• why women’s health care lags behind when research and training start from male-based evidence 
• how clinical reasoning breaks down when protocols replace curiosity and context 
• using AI as a tool to scale better reasoning without losing human responsibility 
• Brain Circulation and training residents through excision surgery exposure, pelvic floor PT, advocates, and patient voice 
• why listening is a core clinical skill that improves diagnosis, trust, and tailored care 
• Italy vs United States advocacy culture and how systems shape patient expectations 
• translational research, and why endometriosis biology needs more clean funding 
• where to follow the work through SHRO and peer-reviewed publications on PubMed 
continue advocating for you and for others!

Transcript

The Education Gap In Women’s Health

SPEAKER_01 0:00

What if the biggest problem in women's health care isn't the lack of compassion, but the lack of education? For decades, patients with endometriosis and pelvic pain have been dismissed, misdiagnosed, or told their symptoms are normal. But what if future OBGYNs were trained differently from the very beginning? Today's guest, Dr. Canyon Martinelli, is helping reshape medical education by creating a program that brings residents and medical students face to face with excision surgeons, public floor therapists, advocates, and the real lived experience of patients. Along with that research, he's making a difference in the conversation today. So stick around. Welcome to Indobattery, where I share my journey with endometriosis and chronic illness while learning and growing along the way. This podcast is not a substitute for medical advice, but a supportive space to provide community and valuable information so you never have to face this journey alone. We embrace a range of perspectives that may not always align with our own, believing that open dialogue helps us grow and gain new tools. Join me as I share stories of strength, resilience, and hope, from personal experiences to expert insights. I'm your host, Alana, and this is Indobattery, charging our lives when Endometriosis trains us.

Meet Dr. Canyon Martinelli

SPEAKER_01 1:26

I couldn't be more excited to welcome today's guest, Dr. Cagno Martinelli, an OBGYN specialist and the head of clinical program at Savaro Health Research Organization at Temple University. Dr. Martinelli is at the forefront of translating cutting-edge science into real-world impact. His work connects emerging research, clinical care, and the future treatment for people with endometriosis, helping us better understand where innovation can truly change lives. Kanyo, thank you so much for sitting down with me again. We got to sit down a while back for doing a fast charge, but this time we get to dig into more of what you're doing and kind of your background. And I'm really excited, but it's always good to sit down with you. So thanks for taking the time.

SPEAKER_00 2:10

Thank you, Alana. I mean, Endobottery is a fantastic uh universe that you created. And it's always uh I'm always grateful to be here with you. It's a fantastic time where we can talk about science, uh, we can talk about being human, we can also talk about uh uh how to interact with other people, engaging with other people, and try to innovate all together because uh basically science is a community, and it's a community made by physician, clinician, researcher, patient, patient advisor, but everybody. So we really want everybody to jump in in this conversation that's uh very interesting from a scientific point of view, but uh having the help of everybody can be even more effective. So thank you for giving me the opportunity.

SPEAKER_01 2:57

Yeah, I I love being able to highlight the voices of change. And I think that you are definitely someone that needs to be heard more in this space specifically because of your passion and your drive and just the honesty behind what you do, I think says a lot. I think, you know, I'm always impressed every time I get to sit and have a conversation with you in not only how human you are and how fun you are, but how intelligent and how passionate you are for change. So for me, this is a complete joy and pleasure that I get to spend time with you. It's I I never regret my time when we have that.

SPEAKER_00 3:34

So that's because you're too kind.

SPEAKER_01 3:39

No, no, no, no. I'm not too kind, but it is fun. Um before we get started, if you have your ideal comfort beverage, your drink of the day, what would your order be today?

SPEAKER_00 3:52

A gin and tonic. I I really love gin and tonic. I cannot say what kind of gin because it's very important uh to specify one because I don't know, I don't want to do any commercial here. But uh I if I could pick, I would choose a gin and tonic with my favorite gin and my favorite tonic. May I also say where? Yeah. Well, uh on the beach and uh maybe on the sunset. I'm dreaming right now.

SPEAKER_01 4:24

I like this dream, it's a good wine. That's where I want to go to. I, you know, my drink is wine today. It's an Argentinian wine and it's a moldec. It's you know, it's a steady eddy kind of wine. I usually can find a good one for a reasonable price because let's be honest, wine is not always cheap anymore. So um that's a recipe. Yeah, it's like it has enough body, enough fruit. It's it's good. So I'll I'll take it. Not that I know what I'm talking about. I have zero idea what I'm talking about. I just know what I like.

SPEAKER_00 4:57

So it's healthy. Listen, someone says the red wine is healthy, so you know.

SPEAKER_01 5:02

That's right. Yeah, it keeps the doctors away.

SPEAKER_00 5:04

Yeah.

SPEAKER_01 5:06

I don't know if you want to hear that, but it's in theory.

SPEAKER_00 5:09

We like it.

SPEAKER_01 5:10

Yeah.

Why Evidence Still Fails Patients

SPEAKER_01 5:11

Oh my goodness. Well, something that I had kind of alluded to this a little bit earlier was the fact that you do research science. You're an OBGYM that does research in science, and you kind of have this unique perspective that I don't think we get to hear a lot of. And that is the perspective of someone who wants to change the dynamic in research and who wants to change the dynamic in women's health in general. And I think broadly speaking, I would say that you, off of our conversations, would love healthcare in and of itself to be better. And that is your that's your passion, that's your goal. But don't let me speak for you. Tell us a little bit about how you got into your field and what drives you to do what you do now.

SPEAKER_00 5:56

Well, Alana, it's a it's a long story, and uh, sometimes in your life something happened, you don't even understand why, but then uh you look back and you actually uh can understand the big picture better. So, from my perspective, uh when I was a med student, uh I really loved science. Um but uh I was kind of upset about my medical school because it was a lot of knowledge to know, but then I always wonder what should I do with this knowledge? But more importantly, uh where is it coming from? And is that really the reality? Because if this is true, uh whatever you read on a textbook, then you apply on uh on the real people, it should work. So that happened when I became a resident. I became a resident, and uh so I started to see even uh the most important professor in the world applying the best evidence-based medicine, and they were still not successful. So uh at that point I really understand human nature, and human nature is basically for me as the ocean, so there are some brilliant spaces where you can clearly see through the water, and then there are some areas that are very, very deep blue and you cannot see where it goes. So uh I like scuba diving in very clear clear water, but that's something that everybody can do. So uh medicine gives you uh two different kinds of vibes, it can make you feel like you're really helping people when you can, but sometimes you're not successful. And when you're successful, you can either say it's not my problem, it's human nature, or you want to take responsibility of being a human. Because taking responsibility of being a human for me means that I also want to accept the idea that we have limitations, limitation in you in nature, but also in human minds. And so I cannot accept the idea that I cannot contribute to dive more in that deep blue uh sea waters. So uh I feel I have the energy, I feel I have the curiosity and uh at least the power to try to understand more. And the more you dive in this uh blue water, uh the more you understand you cannot do that alone. And uh the more you go deep, the more you understand that the knowledge that you have is not absolute. It's a knowledge that was uh created depending on the kind of question that someone else did in science. So it's it's important what you know, but it's important what you know when you can use your knowledge to generate the question that can help you to navigate better that deep waters. And uh when it comes to women's health, when I was still a med uh med student, I understood, I started to have this idea that actually most of the information that we apply in medicine comes from uh evidence generated on men. So even when it comes, uh uh think about that. This even when it comes uh in animal study, most of the models used were uh male mouse. So uh they even consider uh the women's body as having a dignity from a biological and scientific point of view to be explored as much as uh uh men's. But at the same time, every time the story uh uh of medicine shows something about women's self, it's actually extremely traumatic. It's like um it it it really upset me, and that's because um I am a man, of course, but as a human being being, I understand that my suffering, I I suffer the same way a woman can. So, from this point of view, when everybody suffers, we are the same. So uh, from uh human and an empathetic point of view, I wanted to uh try to take the responsibility of uh humanity. Uh and so I I I scientifically speaking, I was incredibly interesting to say, okay, but is medicine uh the same when we talk about women? So let's talk uh again about medicine in in women and starting from the basis. So even if we're not talking about gynecology, but we're talking about uh cardiovascular disease, neurological disease, uh, where we are basically understanding that the molecular basis uh are completely different when it when it comes to uh women versus men. So uh I really decided then to dive in gynecology, that's basically women's health, uh, because of this. So empathy and the incredible scientific curiosity, but also uh the the idea that I wanted to try, at least to try, uh to give dignity to a very interesting uh area of uh of medicine, but more important, dignity to women. Uh that in you understand me, I mean I I was born in Italy and was raised in Italy as Italian, very known to be mama's boy, right? So we have a huge as a man respect to take care of women because first of all they're our mothers, but as they are also our sisters' uh uh um relatives, friends. And so, yeah, the idea that that's the things that I want to do also in research. So when I decided then to uh when I became a specialist, I decided then to dive into research because uh for me, being a physician, a young physician, uh that have to say to women, I cannot help you because I don't know. Anybody knows in the world anything more about this disease, is a failure uh not as a physician, because we have a limitation, but it's a failure as human being. So that's a synopsis, you know.

SPEAKER_01 12:17

Well, it's interesting because like I've always said this to an extent where you know there's there's always this question why hasn't change happened? Why, why are doctors, why is there a delay in diagnosis, right? Like we hear this all the time. You know, the average of seven to ten years is delay in diagnosis and all of this other stuff. And and my thing is like there is a lack of curiosity a lot of times when it comes to women's health in general. But also like physicians' hands are often tied in what how they can practice, right? Like it's not cut and dry. It's not that they don't necessarily want to help you, it's just that they don't have the time to be curious, they don't have the ability to be curious, but also that makes a stagnant healthcare system. And I think that's why we haven't progressed in women's health even more, is because we've been so stagnant in our ability to just um be curious for women's health. And and we are complex, like we are the bigger, biggest consumers of healthcare, and we're very complex. Like we have shifts in our life that most people don't want to address because it's complex, you know? So I think there's that challenge. But what's interesting is that I love, first of all, that you are the mama's boy who's gonna fight for women. I think we need someone like that. But also you're doing it in a way that is unique, it's not really been done in this setting. What are you doing now? Because that curiosity is driving you into a space that hasn't been tested before. Can you tell us what you're doing and how this came about?

Using AI To Improve Clinical Reasoning

SPEAKER_00 13:55

Yes. So very interesting question because it's basically the reason why I am basically living in the United States right now. As a physician with the human brain, I'm saying human because we will get to that. I understood that I had limitations. And uh, when you are a physician, you want to solve uh people's problems, and you the the the most important thing that you want to use is your mind and especially specifically uh the way you reason about the the patient you have in front of you. So the what we call the clinical medical reasoning that has limitations. Uh and that limitation is uh basically the reason why some physicians are better than others. Uh so for me, if uh I I thought by myself, if I'm able to improve my clinical reasoning, I'm gonna be a better physician. But there are different determinants of clinical reasoning, and uh those are the evidence generated by the science that's limited. So I can improve that by doing research. But another stuff is also the ability that we have in our mind to hold all of the data uh about the disease, about a patient, and also all the medical knowledge. So, and then it comes the second step. So it's basically integrating my clinical reasoning, improving my clinical reasoning uh through using AI. You know that AI, uh a big part of AI, very important in uh in science right now, is uh the deep neural network. That it they were generated 50 years ago, uh, but they become important basically now because of the computational power that we are able to generate. And in a bit, we will also uh people will also hear about quantum uh AI. That's a different total level of that. So I decided then uh uh to try to improve this limitation by integrating these deep neural networks, uh artificial ones, with humans, uh, in a way that I could either improve my clinical human reasoning by using neural networks, artificial ones, but also using this framework, also implementing the evidence generated in medicine. So that at this point, uh not just mine, but uh everybody else uh uh can use this uh new way of reasoning in order to uh serve people and to help more people. And once I'm able to build this uh network, narrow network, I can also merge this with uh some other's uh experience in other parts of the world. So it can have um, as a physician, you can have an impact on a few people, you know. How many people can you see in your life? But if you can do that, it's like creating a community of clinical medical reasoning that can be applied to billions of people in the world. So uh it's uh it's um a way to scale not just the medicine, but the way you can innovate in medicine. So I'm very excited right now, uh, because that's uh a critical moment for humanity, and that's the moment where um physicians need to take responsibility for this. Because if we do not let lead this innovation, someone else will do that for us. Because uh it's gonna be extremely impactful, and so it's gonna it's a very profitable uh area, and some other people are already jumping in this conversation and they want to lead it in the way they want. So it's not just the clinician, it's the it's we what are you doing right now? So the alliance between me and you, between uh clinicians and the inpatient and patient advis uh uh advisors, it's that the core of medicine that should be leading now the discussion uh in this very critical moment of humanity.

SPEAKER_01 18:08

Yeah. Well, and what I think is interesting is that from your perspective, and all our conversations, you have always come back to giving voice to the patient, which I think is something that oftentimes is missing in the conversation when you're talking about clinicians and you're talking about further advancements, and when you're talking about all the changes and all the nuances in in medicine, I think a lot of times, yes, maybe the patient concept is there, but the actual patient voice is missing. And that's something that you have brought to the surface. There's this AI piece, which is impactful and empower and powerful, but also you are imploring physicians and patients alike to have a voice in this conversation for change. And you're just this vessel that's willing to put it in, put in the work and put it out there so that it can impact a broader spectrum of people, hopefully long-term, and that's your goal. But can you tell, because this is something this is why I wanted to have you on, A, because you're a gym of a person. And I love that you bring perspective that not many people have. And for me to sit in this space with you and to talk about the research and what's going on, I would be amiss if I didn't talk about the program that you are part of. Because I think what you are doing and and your passion behind this will change the outcome for so many people. Can you talk about this program just a little bit and why you think it's gonna make the a big difference in the long term?

Brain Circulation And Training Residents

SPEAKER_00 19:36

Yeah, thank you for the question because basically is uh every everything we're talking about is uh part of a big picture and uh it aligns completely with the with my vision and the vision of my group, of course. Because when we talk about AI, uh I'm not the tech guy who says AI will save the world. But I am the guy who's saying if this is a powerful tool that we must use because uh we have to improve uh people's quality of life and we need to help more people. And I am also the first one that uses AI a lot in my especially my basic science research, but I am also the first that I which uh really believes in the idea that it's something that I do every day with my colleagues and my partners, we always spend time around the table because uh what we have to do is connecting our minds. Because if I only implement the artificial networks, it's not gonna work. I need we already have uh so many billions of neural networks in our minds, and if we're able to connect for real humans' minds, we're gonna generate brilliant results for sure. The problem is that we are divided. And the system right now, because of the protocols, because of the bureaucracy, because we don't have time, uh kept us separated. Now we have the chance to be unite. And uh, when I say uh being together, I'm not saying just me and the colleague next in my room, but I mean countries. So in the program that we call it called Brain Circulation, we basically wanted to unite countries, Italy in specific, with US. Not just because Italians love Americans or because Americans love Italy. We really have this kind of uh friendship and I love this, but also because um uniting humans' minds can uh help us to come out with something different, uh, can can help us to uh find new solutions for something that we have never thought about. Uh, we don't need uh close open AI to do that. We must do this. We will use them to make this happen faster, of course. But if uh we do not create connection, we will never find a solution for humans. That's the reason why we created brain circuit. Which is a program where we select through a competition a few brilliant uh OBGYN residents in Italy. They are exposed to robotic surgery, uh cadaveric dissection because uh competence, knowledge is the basic. Once they get there, they fly in the States and they also are exposed to translational research, uh to improving their clinical reasoning. But uh it's in the US that they have to understand how to implement the knowledge, and that's where uh you come. And then you know, you are an important uh teacher in this course because, as you said, we don't have uh if we don't have time, it's okay to listen the comp you know the story of other patients. But since our lives dedicating our knowledge, our competence to people, why don't we listen to the people directly? Because maybe in the in the storytelling of someone else's patients, we may miss something. We may miss some important details that someone else can catch up. And uh when uh the resident listened to you, uh they had an idea of what really is in this case endometriosis. Because when you read endometriosis on textbook, when you read in the conference when you hear in the hearing the conference, you may miss something important that's uh actually the human drive, the the the the human uh uh feeling that you wanna that help you to become more effective in your life. It's not just a physician that is applying protocols, it's a physician that wants to solve a patient problem. And you do that only if you connect physician with patients, not through screens, not through data, not through uh report, medical report, like face-to-face. It's also a way that physicians take responsibility because uh it's in front of the other person. And uh, as you said, like in the previous conversation, people right now are able to do their own research. So when uh you visit when you see them, they're very, you know, they're very skilled. Their knowledge is incredible, they know so many things. So it's not that you have to answer to to the by text or phone, you have to take responsibility of the person in front of you. And uh if you see her, if you talk to her, you are able to understand something different. And that um you can do just on the textbook. So that's the main stuff. And then uh once they are back in Italy, they have to create their own network because they have to like be like viruses, they have to infect the system and need to keep doing this because eventually we will be all connected together.

SPEAKER_01 24:58

Right. What when you did this, when we sat down, I I had the privilege of being able to sit with the residents and with you and kind of share my experience, but also you did this with physical therapists and excision specialists, like you you kind of made it accessible to them to learn from all these different areas of specifically probably endometriosis care, but women's health in general. When you stepped back and after they talked to all of these different people, what was one of the biggest takeaways that they were like, we would have never learned that had we not sat in this space with these people? What was like the biggest eye-opening conversation that they had?

SPEAKER_00 25:40

Well, I guess this is the most important feature of the course because if you have as a resident, also medical student, I joined so many programs where there is the guy talking from the podium, uh is like uh you know, a priest with saying its own monologue, and according to the guy, is the best, everybody should be doing what he's saying. So you start to believe that uh there is one truth. Uh in this way, um, if you have to hear different people, different stories, you start to realize that actually reality is much more complex than the one that people sell to you. And that uh you really need to start reasoning because if someone says uh one version, another one says another version of reality, you are engaged in the conversation in a different way. So you're not active in a passive way, but you need to be part of a conversation. It's strange to say, but uh, most of the physicians uh that's the way education is done. I'm so sorry about that, but because it's easier, they have to follow protocols. It's safe following protocols. But if it would be better, although it's very much it's much more complicated, try to implement its its own reasoning uh way. So, but it's it's it's complicated. So you need to be extremely active in the conversation. But if you talk with different people, it's uh it's natural that you want to do that. Because if you do that, if you do not that, uh it's like you get confused because you you're not able to connect the dots. So this was uh done on purpose because uh I don't want to be the one saying this is the truth, you have to follow them. I'm gonna tell you something, someone else is gonna say something else. You have to figure it out what is true, because maybe, maybe, and that's what I really believe. I'm not able to see something right now because I have my own perspective. I need someone else's perspective to see that uh blind corner that I'm not able to see in this in this very exact moment. And I need more people to see the same stuff around me so that altogether we get to the right conclusion for the right person. It's it's everything focused about uh trying to do the best thing for that person that is suffering that moment, and uh, she doesn't need someone to say a monologue, she she needs an effective care in that moment, the best she can ever have it. The best that I can ever give is the one given altogether.

SPEAKER_01 28:20

Yeah. Was there like one thing though that like really blew their minds in this program when they heard all of the conversations? Because I mean, I personally feel like for me, when I sit in space with providers, I think I have a better concept of their barriers now because I've sat and had conversations. I've and there were so many things that I didn't even take into consideration when I first started doing advocacy until I sat in that space with those providers and learned more about some of the things that they were up against, but then also just learning the disease in and of itself, having the ability to sit in space and learn about this disease and how honestly how crazy of a disease it is and how it responds. But was there one thing that they were just floored by that they learned in these conversations?

SPEAKER_00 29:12

Yeah, since the program was about again improving clinical reasoning through science, so in an evidence-based manner, uh they were extremely um, you know, confused initially about this new way of approaching medicine. That's uh um if you if you start to do that, you may feel confused because you can lose all your reference, because a doctor or a physician cannot even be so confused because he and she needs to take action in the right moment. But uh so initially can be kind of strange, but actually, when you understand that you need uh to amplify the way you reason, then you really become a better physician. And also the importance of talking to people. You don't have just to talk with your mentor, with your professor, you need to talk to people because uh it's uh your responsibility to define what's gonna happen tomorrow. You know, our mentor, our professor, they already did what they could do. Now we need to take responsibility of what's gonna happen tomorrow. Not what's gonna happen in 10 years, what's gonna happen on Monday. So every time we had a meeting, I ask them, so what do we do on Monday? It's not a way to generate anxiety of stress, but it's uh a way to tell them, doctors, you have to study, you have to do all of this stuff, but you need to understand that what you're doing is basically not the best things that you could do, because the best things we can do, it's happening tomorrow. And you have to lead the discussion, you have to lead innovation. How you have to do that is through curiosity, but uh it's it's very complicated. You have to suffer, it's uh it's uh it's not an easy job. Uh but we need people to do that, and we need to educate people to do that. Uh, that's why uh education is an act of care, it's a way to give care to healthcare, which is missing care from the world. Uh in every place. I'm not talking about America because maybe US can feel that's uh uh bad because you have to pay for medicine. But uh in universal care, such as uh what's happening in Europe right now, you still pay through taxes uh the healthcare costs, but you also uh pay healthcare uh also by waiting in the waiting list for months, for years, and that's translated in a clinical problem for yourself because uh is it true that there is no insurance that you have to pay, but the system is telling you you have to wait for it, and that's a clinical problem. So we really need to change the system. That's the truth. We need to do that for us, we need to do the for people with uh in need right now, uh, but we have to do that, and uh this kind of conversation and uh even expose them to different people, different systems, different countries, it's giving them the idea that uh there is so much to do.

SPEAKER_01 32:22

Yeah, yeah.

Advocacy Culture In Italy Vs US

SPEAKER_01 32:23

One of the things I didn't realize, and maybe we can talk a little bit about this, but talking about the different countries is that you were talking about how in Italy advocacy is not something that's really um present. Like there's there's not a ton of advocacy in Italy. Um, whether that's maybe even providers advocating for patients or patients advocating for themselves. Can you talk on that just a little bit? Because I think culturally we're different, right? Like what's acceptable, what has just always been done? And then you get to the US and we're sitting here and we're like very vocal, very, very vocal a lot of times. And I think there's good and bad that comes with that at times. I think there's, you know, you have to take some things with a grain of salt because emotions can can be high in advocacy. But can you talk a little bit about that? Because I think that gives perspective to those residents who came over here and experienced these conversations. Maybe they haven't been exposed to advocacy before. Maybe they haven't seen advocacy as it is over here in the US. And I certainly had no idea that in Italy that's not really a prevalent thing to have advocacy.

SPEAKER_00 33:37

So is I really, when I came here, I uh was exposed to the kind of advocacy that Americans are able to do. Uh that's incredible. It's and I love that. There is some advocacy in Italy, but it's not as impactful as here. And when I say advocacy, I say the patient coming yelling at you, not that you uh were wrong. Because when I talk with you and so many other patient advocates, they say, we love our doctors, we love our physician, they are the best, but it's the system that has to do more. So it's not a fight with the physician or with clinician, but it's a fight together uh to change the system, to improve the system. While in Italy there is something, since uh the the the system is universal access, everybody feels that uh healthcare is for is for free. And so if something happens, uh it's because of the doctor, so you want to fight the doctor. But uh I also think that, and I'm I'm publishing this paper, so you know I've not I'm not just talking here. I mean, it's something is gonna become official because I wanna really um push the conversation on this. Uh, I'm not against anyone, and I really believe that uh discussion in the scientific community is important. I may be wrong. I wanna be wrong, but I I want to hear by you. I wanna be I want to hear by someone else. I wanna I wanna people speak, because only by speaking and talking to each other can we find a solution. Uh otherwise we just get angry because we expect that someone else can do someone for us, something for us, but it's not gonna happen. Of course it's not gonna happen. So what's happening in real is that since it's uh universal access, you expect that the system will do something for you because it must do something, because I pay taxes, because someone else pays taxes, you know? So I don't have to be active in this. Uh while what I experienced here, I always say that. I also wrote a book about this. So when you wake up in the US, you know that you have to go to work because you have to pay for your health insurance and for education. When you wake up in Europe, you may do nothing because someone else uh is even paying for your health and your education, the education of your family. So the mindset is completely different. You wake up in the US and you know that you have to spend a few hours of your day to do something, because if you do not do that, you're not gonna have uh basic rights. What we say basic rights in Italy or in Europe. Uh but uh health is not right. I'm sorry, I don't today, health is not right. Health is a product of uh a bigger system, and the every system needs to provide health to people, but people need to be active, you know what I mean? You cannot expect that health is uh uh falling down the sky. You need to fight for yourself, you need to help me as a clinician, you need to help me as a researcher to fundraising uh to try to understand something more. Uh otherwise, we won't go anywhere. And Americans, I love America for this. If something is happening, you go on the street, you go in for in in Washington DC, you go yelling at the president because you need it, you fight for it. You know, this is uh the the land of freedom because you speak your mind, right? Uh, and you're not afraid of that. Uh it's something that as a European we need to learn more. Uh, I don't want to go in in political stuff, but as you know, you learn something for Europe, European needs to learn something for Americans, and patient advocacy is one of them.

SPEAKER_01 37:32

I think what do you hope in learning that? Because I think one of the things that the the students sitting there were hearing me, it was fascinating to sit there and kind of like watch their reaction when I was speaking. And then hopefully it was helpful for them because uh I can only bring my perspective as a patient to the table a lot of times. But but our perspective matters, right? Like our perspective, you're caring for us, it is our bodies, and and we're trying to create a better life for ourselves and for our families. But some in my case, a lot of times the health uh of myself was challenging that. And so, of course, I want to speak up to this. I want to be the one that's part of that change because I know it's gonna impact generations to come. So it was interesting to sit in that space where they probably haven't had a lot of interaction with an advocate really speaking their story through the challenges of healthcare. So I wonder like, what is the hope behind that? Like, what what are they gonna be able to take away from those conversations into their daily practice as physicians?

Listening As A Core Clinical Skill

SPEAKER_00 38:37

Well, uh listening is a soft skill in medical school that nobody teaches, but it's the most important one. So I would not call it soft, I would call it hard skill. But uh they don't pay doctors, uh physician for listening to people. They pay the system, pay doctors and physician to do like generate some medical services, some they have to provide medical service. Right. If you listen to patients, you're gonna improve the way you do your uh your job. Uh but it's very hard to do because uh nobody teaches you how to do that. So it's something that has to come out of practice, and uh the problem you know what it is, is this most of the time you want to avoid talking to patients a lot, all one because you don't have so much time, two because um uh it can even be problematic because the more you talk, the more you you expose yourself uh and more problem you can create. Right. So but uh if you talk to patients, you also a lot and you do an inexhaustive uh uh consulting, you need to do you need to know a lot. Right. You need really to be ready and prepared about all the evidence. So the physician that listened to you is not just someone who cares about you, is someone that is even uh uh more prepared, someone that because he's someone that knows that he needs to get information out of you by listening to you because he will tailor his activities, medical activities, medical service in a in a more precise way.

SPEAKER_01 40:14

Right.

SPEAKER_00 40:15

So I guess one of the best ways to pick uh the right physician is going to the one that's listening to you because uh he really cares, it really will tailor the medical activity on what you really need. Uh that's a skill. That's uh it's not about only in the medical field, but uh in every field, but uh it's uh in medicine, it's where it's more effective because uh it concerns your health.

SPEAKER_01 40:41

Yeah, and I think what's interesting, like hearing you talking about it in that perspective. I think what's interesting is that we the system in and of itself is to help create health, right? And change and like meet people when they're the sickest. But if we don't have a conversation and sit and listen to the patient, how do you know how you can help serve that patient? So it kind of is a like a backwards way of practicing in a lot of ways to just go by the book. Because as we know, humans are not created in a book. And so we're complex. Things don't always add up to the pages of the book. And in fact, endometriosis is a prime example of this, right? Like it doesn't act the same way in everyone. There's no one way that it acts in the same people, right? It's it responds differently in everyone that has it. It presents differently. Someone with a stage four diagnosis can have minimal symptoms or pain, whereas someone with a stage one diagnosis can have significant pain and decrease in quality of life. And so it doesn't play by any rules. And so I think what's interesting is like you're saying sit and have this conversation so you actually know how to treat the patient as a whole human and not in a textbook manner because textbooks aren't God. They can't play God in that scenario. They can't fix you. They can give guidance, but they're not inclusive of all the symptoms, they're not inclusive of all the challenges and barriers that a patient might have. And it's not a collective symptom tracker a lot of times for medical school, right? And so I think like the patient's gonna be able to just give you a more accurate description of that symptom or of that challenge, whereas a textbook is not. And that's where I love what you're doing is giving voice to the patients while also preparing them with the education of the of a provider who has lived experience as a provider. Like that to me, I think is going to make progress in the future for future physicians. And hopefully it changes the dynamic in Europe. Like that's our hope, right? Like we want to make that better for people, but I think that could change the way here in the US things are done and the way research is done and how the way that women's health is perceived as a different biological organism than a man. Like we we are so different, and maybe that will change how research is done. And so I love that you're joining that conversation and utilizing strengths and weaknesses of both countries, because I think that's where a lot of that change happens is combining those efforts.

SPEAKER_00 43:18

Absolutely. Because again, we are all humans, and the most important thing that is useful things that we may do is uh learning from each other's mistake instead of blaming, you know, the other one, or basically just saying, you know, the other people's green is greener than mine. So in in the states, people say yeah, universal European system is better. Uh people need to be to have data and be educated on everything so they will be more free to take their own decision. And uh I think it's extremely important in the field of endometriosis for a different

Spatial Proteomics And Why Funding Matters

SPEAKER_00 43:57

reason. So let's say that you want to go, let's say you Wanna go right now, I don't know, to Chicago or LA. I can do that because I can open Google Maps and I will drive there. No problem. Let's say that you want to navigate, you want to drive on Mars right now, on the moon. You cannot do that. There are no maps. Uh and uh having a strong clinical reasoning, it's helped you to navigate where we're still not able uh to go right now because we don't have enough data. So it listening to people is uh to patients is a way to get more data to understand something we still don't understand, but it's one way. On the same time, we are basically questioning, navigating in uncharted territories in uh uh spatial tissues. So what we do is uh spatial proteomics. So we we take the sample of endometriosis and we go depth dive into questioning hundreds and hundreds of molecules to try to understand to get more data. Then by combining everything, we will have a better understanding. The reason why uh diagnosis in endometriosis is very late, the reason why treatment is so wide, the reason why everybody says that what's what they want on endometriosis, it's because neither of them is right, neither of them is wrong. It's because uh we don't have enough the information from a biological perspective. Once we will explain the mechanism behind, then we will have a scientific method that says, okay, that's the way it is. So we need to explain this from a uh biological, mechanical point of view, and we aim to close that gap. But again, taking care of patients is basically uh look at the whole spectrum, look at the whole human. So we now are in the phase where we wanna at the same time get getting data from all over the omics in order to get to understand the disease better and also to take care about the patient much better. Very few interesting people will be out in the next few months because we're generating a lot of data on this. We open a scientific discussion. Uh, we want to join uh you know a scientific community, we want to talk with you, we want you to join a conversation because uh it's uh we really need lots of energy. It's it's not easy. I mean, uh nobody can do that alone. Uh that's why education is is key, because we want to do that in the right way. There are so many different ways to do that. Many of them are wrong, not because uh necessarily entirely wrong, but because uh they don't care about the patient. Uh, we want to do in one way, that's the right way, that's for the people. And uh, for doing that, we need the support of everybody, as many people as possible.

SPEAKER_01 46:54

Yeah, how close do you think we are to understanding the mechanism of endometriosis?

SPEAKER_00 46:58

In your opinion. Very close.

SPEAKER_01 47:01

You think we are?

SPEAKER_00 47:02

Very close, yes.

SPEAKER_01 47:03

I'd love to hear this.

SPEAKER_00 47:05

Okay, the the technology right now is so advanced. Uh, it's not a matter of uh when you know how we will do that. We already know how to do that, it's a matter of when, because uh, if you have a car and you don't have the the oil, you don't have the gas to use the car, you won't go anywhere. So it's just a matter of funding. That's the problem. And the problem is that's giving you the funding because you always want to do independent research, uh, especially when you want to explain something for the first time. You don't want to you know be influenced by anybody, so we want to get the money funding uh in a way that we can generate uh clean data, clean research.

SPEAKER_01 47:50

Yeah.

SPEAKER_00 47:51

Uh so it's just a lot of time.

SPEAKER_01 47:53

Yeah, you know, too.

SPEAKER_00 47:54

Yeah, looking at the oncology field, that's the one that has a lot of funding, the the one that has so many fundings. In the last five years, so many drugs has be has been generated, and overall survival is increased a lot in so many, in so many diseases. Uh, and uh now we just need to bring attention on endometriosis, so this can happen also in this field, but it's gonna happen for sure.

SPEAKER_01 48:18

I'm so hopeful, partially because I know that you are um a main driver behind this, like you push really hard for not only scientific clarity, but you but for scientific um integrity, which I think for me as someone who has seen the various scientific papers come out, I feel like sometimes that lacks that scientific integrity. And and that's what I'm really excited in what you were talking about, the clean dollars behind it, so that it has the integrity behind it so that we can get to the bottom of it. But what I'm loving that you do, and then this is something that why I wanted to talk about it. What I love that you do is you're combining this integrity and scientific evidence with the integrity of the patient and the experience of the expert surgeons and doctors and bringing that to the table so that it's inclusive care. It's not care based off of a biased knowledge or a bias perception, but it's taking all the data points from various angles and putting it together so that we can get access to better care, so that maybe we can understand not only endometriosis and the disease, but understand the patient perspective and the provider perspective because it's all very nuanced, it's all very challenging. And to only have one side of it, I think creates barriers in this care overall. And that's why I love what you're doing. Like I to sit in space with you and hear everything that you're doing and accomplishing is incredible, even though I'm sure it's very challenging a lot of days.

SPEAKER_00 49:58

It is very challenging. But uh I also want to say that Americans should be extremely proud also of uh uh United States. I mean, United States has been the most important contributors of independent research in the world. NIH funding, do the funding, state funding uh really have supporting so much research that uh generate benefits for all over the world. Now I wanna there are an ongoing discussion about big pharma, you know, we can have a whole conversation on this. But you as government really did and uh uh it's always been like that, like historically speaking. And uh again, patient advisory is important in the positive ways, negative ways. So if some if if a country is doing something in the right way, uh we should be proud of it. You know what I mean? Like so uh that's the reason why all top scientists want to move to US because that's the infrastructures, uh that's the mindset uh where you can do this kind of stuff here. Uh and you have the support again, the patient advice. So it's all the environment that's helping you to do that. It's not that I cannot do that is in Italy, in Europe, or in Asia, whatever it is, but it's because uh here there is the perfect mix of uh of trying to of being successful. Most of the incredible discoveries in the in the history of medicine has been done in the States, in the recent history. And uh so our goal is to connect in countries, our goal is to connect patient advisor in the US with in Italy with the ones in Italy so that we can all become an entire movement and we can unite resources, we can unite knowledge. Uh that's for us. I mean, we don't have to do that for anyone else. We have to do that in our timeline. We don't want to even do that for our kids, we want to do that now. Because if we are able to do that now, we're we're sure that's gonna happen for our kids. And now it's endometriosis. Maybe we will defeat endometriosis. There will be something else, and we have to be ready for something else. So if we create the right mechanism that can be the right engine for this, uh, that's our responsibility overall.

SPEAKER_01 52:18

Yeah.

Building A Global Platform For Progress

SPEAKER_01 52:19

I'm so inspired every time I get a sit with you. What are you most hopeful for in the next couple years? For not only endometriosis care but women's care.

SPEAKER_00 52:29

Well, uh again, uh my main mission now, besides besides science, basic science and clinical activity, uh is uh creating the plot the international platform that can help connecting and uh uh wider the scientific community. People need to talk. Sometimes, you know, if if you're a manager, uh you understand that uh the most difficult stuff to do is basically to bring to the table people and talk, let them talk to each other. You know, it's very hard. Even within your team, within your company or organization. So creating the facility to help people, scientists, uh patients talking to each other in a productive way, not fighting to each other, that's what I think is gonna be the main uh driver because with that you can uh push every scientific research, you can fundraising for everything. Again, the story of humanity, uh every time something happens, uh teach us that when humans get together, everything is possible. So we need to keep going in this direction and try to be even better in this.

SPEAKER_01 53:48

I actually sitting down with you and having this conversation today, I think one of the things that I'm taking away from it is that we as Americans should feel grateful for the ability to have our voices be heard in a space that not everyone does. And also that we are supported in ways. This is not talking on a political front. This is talking on like we have the freedom to do scientific research in a way that isn't purely funded by big pharma, for instance, or anyone with a bias to it. So I I think it was good to hear that from the American perspective. Like I take that, what you're saying, and I cherish that because that is something as an American, we should be proud of that. That is something that we should harness more and recognize. And I think sometimes there's a lot of noise in this space where people don't think that that's happening. So it's really good to hear from someone who is doing research, who is doing the scientific studies and have that perspective. And I for me, I think one of the things that as a whole, you know, my word in life, it's my life word, it's called perspective. That word perspective means so much, right? To have perspective as a patient, but then to hold perspective and hold space for those other people at the table, I think allows us greater advancements beyond what we even feel imaginable. And it doesn't have to be 15, 20 years down the line. It can be five years down the line or even today. Who knows? But perspective is key in any advancement, whether it's medical, technological, or human advancement. That's that's what I'm taking away from this conversation, which is what I love about sitting in space with you.

SPEAKER_00 55:35

And I agree with you because uh to have a perspective, you need to believe in something, you need to have uh a vision. Uh and again, a vision is nothing if you are not willing to write a story, and uh a story that is written by one person only is fake because it's one perspective only, and uh it can even be boring. So it's beautiful to keep writing the book together, and uh it's something that uh we need to again uh be proud. We need to keep doing, we need to invite many more writers uh to eventually write uh the book of everyone uh that will be written by everyone, it's not gonna be just uh a solo.

SPEAKER_01 56:24

Yeah. Where can people find out about the work that you're doing? Where can they track and follow what you're doing? Because I think that it's gonna create more curiosity in the space that you're in. Where can we find you?

SPEAKER_00 56:37

Well, uh, one of the programs that you are trying to do, even using the it's a kind of a beta version, so we still have not published it. Uh we we want to create a sort of metaverse so that uh we are able to engage with people uh from a scientific curiosity 24-7. But uh beside that, uh, of course, information can be found on uh shro.org or basically uh whatever we say, we don't say that because uh we tell jokes, but because we publish on PubMed, so on a scientific library. So everything we say is peer-reviewed. I never I will never imagine to say something just that comes out of my mind. It has to be necessarily peer-reviewed by my peers with uh specific data that supports what I'm saying, because whatever I say, whatever my group says, uh is basically comes from a pipeline of research. It's not just I wake up one day and see something. And it takes time. Um, whatever I say is not just out of me, it's coming from a group of uh at least uh 50 people working all together across the two different countries. So, as you said, you can look in uh shro.org or again on PubMed. Uh, I was so happy that um we basically published um a paper on endometriosis explaining why it's so complicated. And uh a girl find uh the article uh on PubMed, and uh she basically talked about the article on Reddit. And she was so happy that there was the this paper going into deep endometriosis because uh then she told, you know, the only paper talking endometriosis uh was uh one talking about the blondie with the blue eyes that had a high risk to have endometriosis. They were they felt very disappointed about science because they said uh I have endometriosis, and if I go on PubMed, I find uh articles talking about how beautiful are uh women affected by endometriosis. She she felt and she was right. I would felt uh you know neglected, but so she was very happy to find this kind of research and finding that there are groups, not just us. Of course, there are so many other uh fantastic researchers all over the world doing that right now. Uh and uh our mission is not to fight uh our other groups because we are no profit. We wanna keep going together, we wanna work together, we wanna do stuff together, we wanna try to uh face other people, other researchers, because we want to try to understand if we are going the right direction, no. You can do that only if you unite people. Uh, so again, that's our mission, that's the top of the mission. Because if you do that, you are 100% sure that you're doing everything else correct.

SPEAKER_01 59:34

Yeah.

Where To Follow The Research

SPEAKER_01 59:35

What was the title of that research now? Because you know people are gonna ask me, what was the name of that research paper that on PubMed?

SPEAKER_00 59:42

Uh Endometriosis, a cancer mimicking disease.

SPEAKER_01 59:46

Ooh, I like that. I don't know if I've read that. Maybe I have. I can't remember, but I will now. I haven't. I have to go back and look. But I you just send me all your papers. Could you do that for me? Just send them all to me.

SPEAKER_00 59:58

Absolutely. I'll do it.

SPEAKER_01 59:59

Because I love it. I love reading your work. I love the work that you're doing. I love the authenticity behind it and the the passion and the clarity behind it. And I also love that you're considering multiple different angles. It's not um, it's not a a siloed look either. And and that's what I love about everything that you're doing. I'm excited for the work that you're doing, and I'm I'm always thrilled every time I get to sit with you anyway, because I learn a lot, but I'm also inspired every time I sit with you, which I think we need as not only advocates, but as people who are in this space to be inspired by one another. And so thank you for doing that. Thank you for sitting with me and for allowing me to kind of just broaden the horizons of what's actually happening in women's health care, in healthcare, and AI, and all of the things that you're doing. I always, I will always allow you at this table because I love it every single time. So please, anytime you want to come, come on back.

SPEAKER_00 1:00:56

Thank you so much. You know, and the battery is one of my favorite places where to be uh in the again, this is a journey that if we do all together is gonna be much more beautiful. Uh, we can learn faster, uh, we can go farther, uh, we can be happier. And uh really thank you for everything you do because it's uh you know, you're doing this also non-profit. Uh uh, you really want to do that. You have a vision, you give perspective to me and to my colleagues, too. Uh so there will be, there are hard times, and having each other's back is very important because we must do that. There is no other chance.

SPEAKER_01 1:01:39

Yep, absolutely. Couldn't have said that better. So, thank you, Kanyo, so much for sitting with me, and I look forward to next time when we can speak. But until next time, everyone, continue advocating for you and for others!