We've heard about the importance of the patient perspective, but how does it work in real life? Charlotte, you're a patient advocate with extensive experience. Can you tell me a bit about your history? Certainly. I was first diagnosed in 1993, with my first and primary diagnosis. At that point, I felt very alone, and I felt that I didn't have anyone that I could consult with around this really strange disease that I have. I actually ended up creating my own patient association, and that kind of evolved into having tens of thousands of followers from all over the world really looking to me for advice on not just staying positive, but how to make positive changes. That evolved into me, working with politicians, creating new law, advocating for funding to certain research and anything that could benefit the patient in general. That's how I got approached to doing patient advocacy on a consulting level. I have consulted with any kind of entity from the health care unit or industry and really guided them on what the patient thinks and why it should be included. Why is it important to listen to the patient's perspective? It's really a great question because many people forget about this part. I will break it down to a very normal situation. If you are creating a product or service for a milk product for a baby, a formula, you would ask a new mother what to do or what not to do. If you're making a new shaving cream for a gentleman, you will ask a bearded man. Well, if you're making medicine, or if you're making any kind of healthcare-related services or diagnostics or anything that aims at the patient, you should ask the patient. So, it's really, really mission critical that the patient's voice is heard and is considered and included, when anything is being produced that ends up targeting the patient. What kind of differences does it make when you engage patients? It makes a huge difference if you are actually heard. There are some people that will include a patient, just to check off that box saying, "We included a patient's perspective." But there's more to it. You have to actually listen and you have to take it into consideration. You need to respect the patient's voice. Once you do, it can change the world, the way we see it right now because patients have information that you can't buy. Patients have information that you can't be taught, not in school, not in real life. You have to ask a patient how that particular situation or product or whatever it is feels on the body of the patient. In your mind as a patient, how does it fit? We as patients, are the only one who knows the true answer. You as a researcher may think you know everything, because it's obvious to you. But what's not obvious may be the most important point, and only the patient has the answer for them. Can you give an example, a concrete example of when you have acted, as a patient, and when things have changed? There are many. One example is, there was a principal investigator and his whole team that had created a clinical trial that failed drastically. They were unable to recruit and they simply did not understand why. They decided to regenerate this clinical trial, a phase two, or it's not a phase two, but it's a second version of the same clinical trial. They thought, "Let's just quickly get a hold of a patient advocate, someone who will speak the truth and tell us that this is brilliant". They chose to call me. When I came in and I heard what they had done, they had simply made so many mistakes that the clinical trial, the way the design had been set up would absolutely fail again. They would not be able to recruit. How do I know that? Well, because they were asking for so many demands. They were mandatory things that were part of the clinical trial design, but there also were a lot of voluntary. But the voluntary parts were drastic. It was prick test, it was biopsies, it was long extensive reports, self-reported outcomes type information, monitoring, walking around with monitors day in, day out. It was really interruptive to any patient's day. They simply had not thought that, why wouldn't every patient obviously volunteer to do that? Well, because it's painful, disruptive, and not fun at all, and it was overlooked, completely overlooked. This Principal Investigator was pretty much furious because he had hoped that a patient would check the box that said, "This is fine, we will do it. Go ahead." But I am the honest voice and I stood up and I told them in a whole room of professionals and only I, one I, I'm standing there with all of these people, telling them that this was not going to fly. This was horrific and I could not support it and once the Principal Investigator stopped leaking his source because his pride was hurt a little bit. Because who is this patient to come in and tell me what my expertise? That is not good enough. But once he was done sulking, he actually called me back and thanked me for having opened his eyes, for understanding that a biopsy is not just a 15 minute procedure. The whole time that you know it's going to happen until it actually happens and because they hadn't created a timeline when that would be. Essentially the patient could walk around for 6 months, being nervous if they've never had a kidney biopsy. Now they would need to have it and had no dates. He hadn't understood the mental part of what's to come, the pain of having it done, the pain that falls afterwards, and the attitude of " it's just a 15 minute thing ", " you're in and out " , well, it's not for the patient. I'm happy to report that this particular clinical trial design was completely revamped, and it's getting ready right now to go live and start recruiting patients so I'm hoping for them. But they not only took a patient's perspective, they listened. Whether they were really willing to or not is a different case, but they did and it changed everything. You said that you were the only patient and there were lot of professionals. Is that common that you as a patient are alone? Sadly, yes. It is extremely intimidating. This is something that the regular patient does not know and is very fearful of. The information that's given to a patient who will interact in a patient engagement opportunity, will not get all the details because whoever is planning it forgets that it's not standard procedure for this particular patient to give this information, to be involved in a setting where the focus is on that one patient. When you've never tried it before, or you don't really know what to expect, and no one is filling you completely in on what's going to happen, and making you feel safe and comfortable, you feel put out there. It feels that you're up for grabs. That anyone can take a stab at you, and you are watching over your shoulders all the time, just expecting the worst and the worst happens. In fact, the first time I sat in an authoritative setting where we were, I was part of the evaluation team to evaluate what proposals or grants should be granted money. I was the only patient, I'm telling you, a whole room of researchers, and they all were the best from the country. I'm sitting there as the only person, and I bring up a point because my coordinator has said, "Just bring up anything that you can think of that sticks out, that you just want to pay attention to or discuss." I said something and I don't remember what it was. It was something I didn't understand, but I just said, "This just seems weird to me." The first thing, there was a facilitator who was like a Senior Investigator. He laughed in my face and he rolled his eyes and I knew instantly that I was not worthy in their eyes. I was just a box to be checked, and it was my first real big experience where this was millions of euros and dollars that was at stake and my opinion should matter and I knew now from the very first moment I spoke that my opinion was not really counted on or regarded. Being the person that I am and the many experiences I have talking with big people, I just made it my complete goal for that whole week, which was a whole week long process, to make sure that I was heard in each and every proposal and I would bring up the crazy of things just to gain their respect. What I did was there was one time all these grants were talking about certain clinical trials and which mice they were going to use and so forth and there was one, I know nothing about mice, I knew nothing about their research, but I noticed that these particular mice were different than all the other grades. I was the only one who spoke up about it and the whole room, just like, "Oh my gosh, we totally overlook that." and the patient who knows nothing about mice is picking it out. That's when they started to listen to me, and I got hugs and ' thank yous ' and all that afterwards. But the average patient will be sitting there alone feeling so intimidated that they will just speak after your mouth. If you say something or you have a guided question, they will comply because they're intimidated. Yes, oftentimes we are put in a room by ourselves or we may be a couple of patients or maybe I've never been in a room with more than four, five patients and maybe 20 or 30 professionals. Still when we are four or five, these patients will not necessarily speak the truth. I hear the truth in the break room and being the person I am, I will bring that up when I come back into session. But most patients, they just don't know what to say. They haven't been guided on what is expected from them and so they just nod their heads as you want us to and that's it. I think it's very important that you highlight that it has to be a safe and secure situation and also that you probably should have more than one patient in the room that you need to, which also helps the patient to feel safe to actually tell the perspective of the patient. If I can just add, I actually would do the opposite. It doesn't have to be more patients, but less professionals. Oh yeah. If you need to have 30 people listen to what a patient is saying about a certain product or service, whatever, have that mirrored glass, have a recording and hear it afterwards and then maybe have a break where everybody can just ask them questions and a couple of people that are in the room with the patient can then ask them. But the intimidation is in the amount of people that's there and it doesn't matter if there's one, two, or three patients, if there's 10, 20, or 30 of the professionals. Thank you. You've worked for this questions for a long time, what is driving you? Well, it is uphill battle most of the time, but when it is successful, it's exhilarating. But first and foremost, I find it to be the patients moral obligation to take part, to do their part. Whether that be in patient engagements or projects or clinical trial participation, I think we as patient, must involve ourselves in order for us to have a brighter future because we need yours, theirs expertise to enrich our lives, to better our lives. We can't create medicine ourselves, we can't create products necessarily on our own. We need each other. So, I think it is the patient's responsibility and I think a lot of patients forget about that. But my absolute and true passion is to make sure that I remind people, smart people, when they're doing what they're doing to keep the patient in mind at all times. Even the best who really, really afford patient advocacy, who really love to involve patients, forget the patient's voice. It's just not built into our system, it's not our natural way of thinking just yet. It is my passion to make that a standard of operations. This is what we do, we do something for patients, we include patients. If we're talking about patients, we include patients or we ask patients. We need patients involved and it is my absolute passion to make sure that that happens and I will continue to speak up, yell and scream if I have to, to make sure that happens. Thank you very much for sharing! Absolutely. Thank you!
