Hans Vorster: Closing we've had a great day and a half, so far, and there's still more to come.
Hans Vorster: I'm Holmes Forster, I'm a patient partner at CDT or P and number of other organizations, I'm Co chair of this event and also the
Hans Vorster: emcee for this particular block of the event.
Hans Vorster: Which is called the future of research in Ott organ donation and transplantation.
Hans Vorster: This afternoon we're going to hear from a number of interesting
Speakers
Hans Vorster: We're going to hear about
Hans Vorster: Mental health in
Hans Vorster: This case in
Hans Vorster: Cystic fibrosis, which is
Hans Vorster: Going to be under with lung transplants. We're going to hear about balancing the needs of patients and
Hans Vorster: Research researchers and within the research project.
Hans Vorster: And finally, we're going to have a long discussion about, we hope, a good solid discussion about the future of research in this area, and we want to hear from everybody in this audience in order to make that successful event.
Hans Vorster: To set the tone.
Hans Vorster: I am going to show you a
Hans Vorster: Video for something that
Hans Vorster: I bought a decade ago, wasn't on anyone's radar and subsequently has become a major event and
Hans Vorster: I think there's of interest of everybody here.
Nope.
Hans Vorster: It's gone. There we go.
Mélanie Dieudé: We're having some technical difficulties will be solving that very soon.
Hans Vorster: World, if necessary, I can try showing it from my screen.
It's my pleasure and honor to introduce our last Kimmy X winner and final present
Hans Vorster: Directories a professor of bioengineering therapeutic Sciences at the University of California, San Francisco and director of the kidney project is going to be telling us about his novel approach to kidney replacement therapies that involves implantable device. Thank you. Sure. Well,
Hans Vorster: Thank you. It's a pleasure to be here and on behalf of my colleagues, William T cell of Vanderbilt University Medical Center and trust blah of silicon kidney
Hans Vorster: Place to share a work on an intro corporeal haemodialysis system, which I'll explain in a second.
Hans Vorster: The ultimate goal of the kidney project is to develop an implantable artificial kidney that will provide key functions of a kidney transplant.
Hans Vorster: The device combines a silicon chemo filter to remove toxins from blood within via reactor lined with kidney cells to provide metabolic functions.
Hans Vorster: We are now adapting the silicon humor filter component of the artificial kidney to develop a compact patient friendly. They also system that I chemo for self care treatment at home.
Hans Vorster: Inside the chemo filter are highly efficient filtration membranes constructed from silicon compared to hollow fiber membranes using conventional diet lasers. Don't on the left hand side of the right side, half of your screen.
Silicon membranes which on the very far right.
Exhibit uniform for size and a much cleaner.
More over, they can be coded with biocompatible thin films to enhance their performance and extend their lifetime.
Because the silicon membranes are compact and biocompatible, the device is small enough to implant and does not require blood thinners, the interrupt corporeal dialysis system yeah I chemo will allow patients with kidney failure to conduct haemodialysis in a safe and simple manner.
The key element of it, Mo, is it biocompatible diode laser that is surgically implanted inside the patient's abdomen. This device connects to the blood vessels on one side.
Creating a permanent blood circuit inside the patient's body, and on the other side to catheters, leading to an external pop
The patient's hurt pumps blood through the email filter the dialer. Mr. While the external pump sense down and say into the demo filter and carries away excess water and toxins.
From the viewpoint of patients on chemo fundamentally simplifies the procedure haemodialysis. The only external component is a compact pump to recirculate dialysis.
No blood ever leaves the body and patients never have to insert needles into a fistula or grad instead they connect dialysis tubing to a catheter to conduct the treatments.
There is exciting evidence that dialysis patients can indeed experience longer and fulfilling lives if they receive more frequent and prolong chemo dialysis treatments.
However, existing dialysis systems approved for home use are quite bulky and they require that patients and their caregivers often their spouse to perform come complex and risky tasks.
But with IP mo patients can now conduct frequent and prolonged dialysis sessions in a safe and simple manner at home.
Mireille Boucher: We now look forward to engaging with the kidneys community and building new partnerships to refine the I emmerdale system and bring it to patients once it's completed it has the potential to transform quality of life.
Mireille Boucher: And increase lifespan for hundreds of thousands of kidney patients each year. Thank you very much for the opportunity.
Hans Vorster: Might
Mélanie Dieudé: You're good to go.
Okay.
Hans Vorster: I got muted and re muted.
Hans Vorster: That is one of a number of projects that is that is going on around the planet that will lead to implantable
Hans Vorster: We hope will ultimately lead to fully implantable
Hans Vorster: Kidneys of one sort or another. And to give you a view of a different way of doing this, I'd like to introduce Dr. Ian Rogers.
Hans Vorster: Who
Hans Vorster: Is going to talk to you about the center graphs ghost organs of human port kind of hybrid is the possible future of organ transplantation. Talk to Roger Rogers, you're on.
Ian Rogers: Thank you. Let me just start to share my screen.
Ian Rogers: One sec. Okay. So can everybody see that
Mélanie Dieudé: Yes, we do. Okay, great.
Ian Rogers: So my name is Ian Rogers and I'd like to thank the organizers for giving me an opportunity to talk to you today.
Ian Rogers: I'm going to talk to you about the possible futures of organ transplantation and I want to focus on three areas is Ino graphs human poor sign hybrids and Ghost Oregon's and my lab, we work on the, the last one. The ghost Oregon's but I will talk about the other two.
Ian Rogers: I'm going to start with Dino graphs. So, you know, graphs, are they use of animal Oregon's as donor Oregon's and the main focus on research has been using pigs or non human primates like baboons as potential
Ian Rogers: Organ donors and the main hurdle, which would be obvious is the rejection due to hyper immune reaction that occurs when you do an interspecies transplant. And then on top of that specifically for pigs pigs have a lot of dodging this viruses that need to be genetically removed.
Ian Rogers: This slide comes from review that Megan Sykes published Dr Sykes published in 2019 and it gives a history of vino graphs.
Ian Rogers: And it's a long history. And it's very interesting. So pre 1980 when experiments were done the organs would survive for minutes and this was due to the hyper acute rejection that would occur.
Ian Rogers: In the 1980s, there was some technology to remove some of those antibodies that triggered the rejection. And when they did that the Oregon's would now survive instead of minutes, but these are surviving hours and then jumping ahead to, you know, the early 2000s about 20 years ago.
Ian Rogers: You started seeing knockout technology where labs could actually knock out jeans and
Ian Rogers: This was very interesting is when they started knocking out some of the genes that were responsible for rejection there. They found that Oregon survival would now go from
Ian Rogers: days to months and this is very timely because there's a lot of genes that actually need to be knocked out or modified before pig Oregon would be compatible with a human.
Ian Rogers: And under the old gene editing technology. This would be impossible to do because it was just so difficult to try to modify
Ian Rogers: 30 or 40 genes which are required to make a pig Oregon suitable but now with CRISPR gene editing technology, it's much, much easier, much, much cheaper and much faster.
Ian Rogers: And I'm sure many of you heard that this past week. Dr. Doubt Inna actually won the Nobel Prize in chemistry for her discovery of CRISPR technology. So along with CRISPR this area is going to have a very fascinating future we should see some interesting advances.
Ian Rogers: The other area. I want to talk about is human pig hybrid donors and really the concept here is is to use pigs. Again, but you're not using the pig Oregon's
Ian Rogers: You're actually trying to grow a human Oregon in a pig. So you would have pigs, running around that would have a human heart or a kidney made a human cells in them and then that Oregon could be harvested.
Ian Rogers: A lot of this initial work has been done on most embryos and wrap using route cells and the picture here shows a most embryo, where the heart of this most is actually made of rat cells.
Ian Rogers: And this technology is based on something called blastocyst implementation and I just want to give you a little bit of background and I like using the slide because it's very colorful
Ian Rogers: And this data comes from my colleague, Dr. Nash and he's been genetically engineering mice for decades and he's made a mice that glow green, blue, red, yellow,
Ian Rogers: Because they put in the jellyfish fluorescent protein and and this is a good reporter most in order to understand what's going on in blastocyst implementation.
Ian Rogers: So if you can see in the top of the screen in the middle. Dr knowledge they took
Ian Rogers: Two most embryos one blue one green and individually. Each of these embryos would make a mouse, but if you mix them together, you get a camera most which you can see there the black and white mouse. It actually has for parents.
Ian Rogers: And then if you look at the origins of these most and to your right. You can see the heart. It's pretty well you have equal contribution from each blastocyst, you can see the blue cells in the green cells.
Ian Rogers: Now what turns out to be very interesting and nature's always fascinating is that if you do that same experiment but you use a most in Iraq, instead of two mice, you don't get equal contribution.
Ian Rogers: And then there's a way to take advantage of this. So what you can do and what they showed here, Dr. Bell much showed in this paper.
Ian Rogers: Is that if they took a most embryo and again they use crisper gene editing and they knocked out the gene PDFs one, which means that this most will not have a pancreas.
Ian Rogers: But then you mix that modified most embryo with rat stem cells normal rat stem cells.
Ian Rogers: What actually happens is the rat cells will make the pancreas, they'll fill in that gap that's missing.
Ian Rogers: And what you end up with is a most fully formed adult most with a functioning pancreas, but the pancreas is 100% round.
Ian Rogers: And what was interesting is when they looked through this host most they found that the rat tails only contributed to the pancreas. They didn't. They weren't found anywhere else in the animal. And this is important because if you want to do.
Ian Rogers: Pig human cameras, you really don't want something out of the island of Dr. Moreau, you, you want to have a pig that specifically has let's say
Ian Rogers: A mo sorry a human pancreas or human heart or a human liver, for example. So Dr. Bell months group continue this work and in this paper and sell that came out a few years ago.
Ian Rogers: They actually tried different combinations. And what they found is, they could take a pig embryo a pig blastocyst put in some human stem cells.
Ian Rogers: And you can see in the quote that is from their paper they injected pig embryos with human stem cells and planted the embryos into cells and about half of the resulting fetuses were stunted or slow growing and those that were normal size had very few human cells. So it worked. Kinda
Ian Rogers: So this is just another example you can see this is one of the normal pig embryos and the
Ian Rogers: The very bright spots. You can see in the in the center or the human cells contributing to this embryo.
Ian Rogers: And then to the right. The, the blue cells. The story of the blue dots mark the nuclei of all cells and the green marks the human cells. So you can see there is some human cell contribution to these embryos.
Ian Rogers: But it's not making an Oregon, and it's not very high contribution, but it was a good proof of concept study
Ian Rogers: From this Dr. Bell months group and other groups are continuing to understand or try to understand why the contribution is low, can they make modifications to the stem cells. So you can actually one day have pigs that are host to human Oregon's through genetic manipulation.
Ian Rogers: Okay, so I only have 15 minutes, so I apologize if I'm going a bit quick. But this brings me to the
Ian Rogers: Third group of studies and these are called ghost Oregon's and this is an area that my lab works on and we're very excited about. So I want to talk to you a bit about this work.
Ian Rogers: Hopefully, you can't hear that noise.
Ian Rogers: I turned it off. But the bottom line is stem cells have been around a long time and for decades and you can take stem cells and you can differentiate them into as shown here cardiomyocytes and you get a nice monolayer of cells, and you can get a speeding cardiomyocytes in a ditch.
Ian Rogers: And these cells could possibly be used to make a patch for damage heart muscle but the the big hurdle in stem cells was how do you take these cells and actually make them into a whole Oregon, could we actually make a heart for transplant from stem cells.
Ian Rogers: So interestingly in 2008 Dr doors Taylor came up with a brilliant idea of how to solve this problem.
Ian Rogers: And what Dr. Taylor did is she figured out a way to take an Oregon. And in this case, she took a rat Oregon a rat heart.
Ian Rogers: And she was able to remove the rat cells, but keep the underlying protein framework. So you think you build a house.
Ian Rogers: You have a frame and then you put your bricks up in your windows all around that house to seal it in. So, same idea with an Oregon, so she could remove the red cells but maintain the Oregon structure and these were called ghost Oregon's because they
Ian Rogers: They weren't a full Oregon. There was no cells, but they still look like a heart and then she could take human stem cells or she tried this with most stem cells also
Ian Rogers: differentiate them interact cells and then put them on this 3D scaffold and start to regenerate a whole 3D Oregon. So, so this was brilliant.
Ian Rogers: Around the same time that her paper came out, actually, a year before there was another amazing experiment that was published, and this was um work by Dr Yamanaka
Ian Rogers: Dr. Young Anakin Japan. He has been studying blots assists and embryo is an embryonic stem cells for decades.
Ian Rogers: And they discovered it in his lab, there are 20 genes that are only on an embryonic cells. The and they're turned off in the cells become adult cells.
Ian Rogers: And they had the brilliant idea of if we reactivate those genes in an adult cell, can we reprogram the adult cell back to an embryonic stem cell.
Ian Rogers: And the short answer is yes. And they got it down to four key genes.
Ian Rogers: And when you reactivate these four key genes and any adult cell, you can convert that back to embryonic stem cells. And the reason that this is so important and Dr Yamanaka won the Nobel Prize for this work and in 2012
Ian Rogers: Is because it now allows us to make pluripotent stem cell line for any person on the planet. So in my lab, we have made many of these lines.
Ian Rogers: And we do it actually from a urine collection we we get donors to basically give us a urine sample, we can collect the very few cells that are in that urine sample grow them up and then using Dr Yemen access technique we can
Ian Rogers: Convert them to these induced pluripotent stem cells and technically we should be able to make any Oregon for that person.
Ian Rogers: Essentially from their own cells. So it's a perfect match. So in our case, and this is from work where we actually use an umbilical cord blood
Ian Rogers: stoner source that we made into stem cells and then we wanted to see, can we differentiate them into kidney cells. And you can see here
Ian Rogers: We used another fascinating technology called Oregon noise to prove that we could make kidneys from the stem cells. And just to touch on Organize, organize her. They're basically little mini Oregon's
Ian Rogers: Many different organs in the body. You can now reproduce Oregon oil.
Ian Rogers: To make a mini model of that Oregon. There are only about the size of a jelly bean so kidney organizations can't be used for transplant, but they're a fantastic research tool. And you can see here, and again, my, my cursor. Like, I don't know if you can see that, but we steam. Nice.
Ian Rogers: Organized to show that we have blood vessel cells CD 31 positive to be all cells, which are the key ESP
Ian Rogers: Glow Marissa ly, which are the nephrons positive cells and then if I can get this little movie to go. You can see that they have 3D structure and and they do look like
Ian Rogers: Like a kidney. So now we have all this technology together. We have Dr. Taylor's Oregon scaffold. We have Dr. Em, and X iPS cells.
Ian Rogers: We have our ability to differentiate them into kidney cells. So can we put this all together and actually make an Oregon from a patient cells.
Ian Rogers: So, you know, we start with our, our most model because it's faster and cheaper allows us to generate data to see if this is a go or no go experiment.
Ian Rogers: And we did some proof of concept studies and it's very simple. We calculate the artery. We put the cellular ization solution through
Ian Rogers: And when we do that, you can see at the bottom that we go from be one, which is a full kidney to add cellular his kidney
Ian Rogers: Next to that you can see the, the green square that some a normal cross section like a cross section through normal kidney
Ian Rogers: And next to it is the cross section through a D cellular his kidney and you can see that the to be will framework is still there and ready for us to put our stem cells on
Ian Rogers: And then above that is our one of our most bioreactors that we just fashion from tubes and you know that are lying around the lab and and try to get proof of concept, you know, since those initial studies I've had engineering students in the lab who've designed
Ian Rogers: Much nicer bioreactors and you can see to the right we have the bio reactor that contains kidney and we have pumps that will flow push through media which acts as blood
Ian Rogers: We have an oxygenated which acts like a lung and the ideas, you know, can we rebuild these most kidneys and our results were were surprisingly positive
Ian Rogers: The bottom line here is that you can see the most Kinney control we seen for keratin. You can see the, the red
Ian Rogers: Line to be walls and to the right of that is our we built kidney, we're getting similar to build structures and then down on the bottom where again able to replicate two bills and and even get one positive polo sites.
Ian Rogers: So this tells us we can rebuild a kidney. And this is proof of concept. The problem with using most kidneys.
Ian Rogers: Is they're almost impossible to transplant back in. So we have no idea if these kidneys actually function. So we move to a pig model.
Ian Rogers: And we work with Dr. Cells nerve quite closely on this and it's the same concept we we take
Ian Rogers: A pic Kenny VD cellular eyes it you can see below the cells are gone, but the protein framework is still there. The Ultra stark structure is there.
Ian Rogers: And then the idea is to put on our stem cells. And here again we we took the stem cells are human induced pluripotent stem cells.
Ian Rogers: And we put them on the D cellular is pink kidney. And again, just like in the Oregon oil, but this time it's combining the 3D substrate with the stem cells.
Ian Rogers: We do get blood vessels forming and read in the middle. In the middle we get to be was forming and we get Gulen Marissa life forming. As you can see in the last panel.
Ian Rogers: So the just like in the most, we need a bioreactor to grow the cells on and we've tried many different things.
Ian Rogers: We've now moved beyond the bag. But the plastic bag worked actually quite well.
Ian Rogers: And see if this movie starts. You can just see what the setup looks like in the lab to the right we have our pumps going water jacketed tubing to keep it warm. And essentially, this is the setup and we try to grow a kidney. This way.
Ian Rogers: Now, to show whether these kidneys are functional. This is where Dr cells nurse group comes in. So I'm sure many of you have heard about his ex vivo profusion system where they put on human donor Oregon's whether it's a lung.
Ian Rogers: Lung a kidney or liver and their system will refuse that Oregon oxygenated keep it at 37 so it's very, very healthy and they can measure function. So this is a perfect model for us.
Ian Rogers: Because if we're rebuilding a kidney. We want to test to see if it's functional. This will give us an immediate answer in real time. So,
Ian Rogers: This is a picture of Dr. Cells nurse group preparing a kidney. One of her rebuilt kidneys, actually the one you just saw. That was in the bag.
Ian Rogers: And they're just preparing the calculator, hook it up to the machine and then this is it hooked up to the machine and you can see that the kidney is
Ian Rogers: Per fusing the blood is going through and at the top, you can see that white tube is the ureter and we calculate it because we wanted to see if this kidney would make in urine.
Ian Rogers: And if you just look down how you can see Peters feet there in a minute, you'll realize that the kidney is actually making urine and it's dripping on his feet. There he realizes that
Ian Rogers: And there are collecting the urine. So this was a very fascinating for us this kidney basically only survived about 15 minutes on the profusion machine before it.
Ian Rogers: Got a clot and we thought it was going to blow up on us. But we did get some initial data that told us that it has some function.
Ian Rogers: And just to show you here the urine isn't the greatest looking urine. But you can see that with the to test tubes there. The one on the left.
Ian Rogers: Is actually the blood flowing through the kidney. And you can see the red blood cells at the bottom.
Ian Rogers: And this and the tube on the right, contains the urine that we collected and you can see there are no red blood cells. So it tells us that the kidney has some filtration ability again.
Ian Rogers: It's not a fully functional kidney. At this point, but it's a partial functioning and this was very exciting for us. So we're continuing this work.
Ian Rogers: And I just want to quickly highlight that this is a huge group effort. So in the center is all the people from my lab who've worked on this Dr cells news group Dr glide it from
Ian Rogers: The loon and fell that's been very helpful. And then we've had different engineers Natalie. One is a biomedical engineering student at McMaster that's been making the bio reactors.
Ian Rogers: And then the four IDP me engineering students that have also helped work on the bio reactors and then the funding agencies, so I am going to stop sharing the air and take some questions. So let's see if I can do that.
Ian Rogers: Stop share. Okay, so are there any questions.
Mélanie Dieudé: Thanks a lot. Yeah. And for this amazing presentation.
Ian Rogers: Sorry, sorry.
Mélanie Dieudé: Everybody that you need to hear me, if you will.
Mélanie Dieudé: So great, great, great presentation. I think there's many, many events and there's an interesting comments in the chat on the acceptability on xenotransplantation and
Mélanie Dieudé: On on on on how it evolves. But one question that I see is what to transplant candidates, think about, well that's it receiving an Oregon created through this technology. What is your the feedback that you hear about accessibility of such modify Oregon of you.
Ian Rogers: Yeah, so, so I'm new to this CDT RP and and one of the goals was to interact with patients to just find out about this, it's, it's one thing to work on technology, but you want it.
Ian Rogers: To be accepted. So the, the two people. I was able to talk to were very positive about this.
Ian Rogers: Actually, and then just I want to segue quickly with the animal that pic human hybrids where you're you're making an Oregon in it in an animal.
Ian Rogers: We actually had applied to do that study. And it was interesting as I actually had to hire a lawyer to see whether we were allowed to do that work in Canada.
Ian Rogers: And then the comments we got backwards, that the reviewers love the technology, but it was too weird for them. They thought it was too bizarre. They said the yuck factor was too high.
Ian Rogers: And they didn't fund it. So, but I'm not getting having that problem with the ghost Oregon's and the work that we're doing now. So it seems to be more accepted.
Mélanie Dieudé: Excellent. Do you want to comment on this.
Hans Vorster: Yeah, I'm
Hans Vorster: Rather excited to sort of thing is happening in Canada. It's certainly the US has done a few things. There's a company called recombinant medics that's
Hans Vorster: Well, advanced and during
Hans Vorster: Cameron Camaro research, they've developed
Hans Vorster: They're actually in the beginning of the sort of first stage, try clinical trials to see if there's if there's safety factors are in place there. I know, I know some projects that are going on I think just one and there's a big one in Japan.
Hans Vorster: Anyway, that the whole field, I think, is
Hans Vorster: Beginning to develop very well in it on its own. And I think we'll talk about this a bit more at the end of the last session of this particular
Hans Vorster: symposium this afternoon when we hear from everybody else to see what how they feel about it and the results of that we will try and pass on to Dr. Roger.
Hans Vorster: Sure that he knows what the public thinks, which I think is one of his calls here.
Mélanie Dieudé: Thanks, hon. I think we have Sandra that wants a comment as well. Sandra.
Sandra Holdsworth: Yeah, I just wanted to mention that this brings back memories from when Canada hosted a national y conference to reach out to the public.
Sandra Holdsworth: And actually I was considered an expert on a panel with Dr. Lovely, which I thought was pretty funny. A patient expert on it.
Sandra Holdsworth: And after the full day conference, I put in the notes there they yeah if
Sandra Holdsworth: A doctor approached me and said, you know, center, we've done everything for you, you know, your lover's shutting down, we can't find a liver
Sandra Holdsworth: For you. We're going to try this. I think I would have said, definitely, yes. With that being said that was 20 years ago so
Sandra Holdsworth: Obviously, I know that there's a lot of work that's being done, but I would really be interested in seeing more information on this and having that, you know, Canadian thing done again to see where the general public feels on us. So thank you for your work. Dr. Rogers.
Ian Rogers: You. Thank you.
Mélanie Dieudé: Thanks a lot. Great presentation, I'm sure there's more questions, but I think for the sake of time, we need to move on. But you make a dream of
Mélanie Dieudé: A lot, and I think dream is coming to reality. So thanks a lot. Dr. Rogers and you want to pursue, but the introduction for the next presentation.
Hans Vorster: From here we travel on to
Hans Vorster: Mental health area, the CD tmp is taking a longer health research initiatives within donation and transfer plantation and help your search has become a major
Hans Vorster: Factor in I think in in the whole area of
Hans Vorster: Ott
Hans Vorster: And so they're probably like to invite shine and right and show for Roger to present their very important project a CT RP innovation grant winner mental health and adults with cystic fibrosis, who undergo lung transplants, Shannon.
Hans Vorster: Please introduce yourself.
Shannon Wright: Hi, thank you very much. We're delighted to be here. So we really appreciate the invitation to come and speak with all of you. I'm just gonna put up the slides, while I'm chatting here.
Shannon Wright: And let me know if you can see them. Okay, so my name is Shannon, right. I'm a nurse practitioner. I work at Toronto General Hospital in the transplant program specifically I work in the mental health program. Can everybody see the slides.
Mélanie Dieudé: Not yet. Not
Sorry.
Okay. Yes, we do.
Shannon Wright: There we go. You can see those. Okay. Yes.
Shannon Wright: Okay. Specifically, I worked in the mental health program and I primarily see admitted patients to the hospital and I see them across all organ groups.
Shannon Wright: At every stage of their transplant journey and you know the teams will ask us to come and visit with patients if the patients are seeking some support from mental health needs.
Shannon Wright: So I've been a mental health nurse for over 12 years but I am a rookie when it comes to research and so I'm here speaking on behalf of the bigger research team. And so I worked with some amazing people.
Shannon Wright: And on this particular project, I am also working with Dr. Cecilia Shapiro, one of the rest were all just in the lung transplant program Brooke Stewart, who is a registered dietitian in our program.
Shannon Wright: Dr. Lisa workers in a PhD prepared physio therapist in our program. Dr. Leon singer, who's a wrestler all just in our program and Dr. Susan Abby, who is a psychiatrist in our program. So
Shannon Wright: In our program, we are looking at exploring the mental health needs of adults.
Shannon Wright: With cystic fibrosis, who undergo lung transplant. And that's what the mindful abbreviation stands for
Shannon Wright: And so really we were asked to come and talk a little bit about what our experience was working with patient partners as we develop our research study. And so I'll just let me introduce yourself as well.
Shilpa Raju: Everyone. Thanks for giving us the opportunity to be. My name is chaupar I do. And although I'm not a cystic fibrosis patients.
Shilpa Raju: I am a double lung transplant recipient and I was on the younger side when I received my transplant. So it's now been almost eight years.
Shilpa Raju: So I do have some experience in common with the population that's in focus for this study. I've been involved with, and the
Shilpa Raju: Patient co lead with the CRP for about a few years now. But this is the first actual project I've been involved in as a as a patient partner. So I think it's some really great work. And I'm really excited for Shannon to share
Shannon Wright: So I thought it'd be helpful to start with how this all began and share with the group where this group began. So in 2017
Shannon Wright: Dr. Shapiro lead quality improvement group that was created with support from the Cystic Fibrosis Foundation.
Shannon Wright: And the terminal lung transplant program at UA Chen and this is really a multi disciplinary team and that included physicians dietitians, social workers, nurses, pharmacists and most importantly patient partners, and in particular.
Shannon Wright: There was a patient and the family member who provided a lot of feedback to the quality improvement group. And so the goal.
Shannon Wright: Of the group continues to was and continues to be improving the patient and family experience by engaging and empowering them to provide feedback on clinical care experiences and concerns.
Shannon Wright: And specifically with a CF group. It was to improve the transition from their cystic fibrosis home clinic to the transplant clinic because feedback from patients and families, was that that was quite disruptive.
Shannon Wright: And so if we could, yeah. Great. And so, you know, when we talked to patient and families.
Shannon Wright: We went to this year foundation and we did the patient surveys and really they provide us with some really helpful feedback.
Shannon Wright: That the weight was just an emotional roller coaster and there was a really long time to wait from their testing to where they were approved for transplant.
Shannon Wright: They couldn't plan anything in their lives. There were multiple out of pocket costs and the idea of relocating and being away from home and family.
Shannon Wright: As well as nightmares and worrying about if they would get their lungs in time, not knowing what to expect.
Shannon Wright: The fear of the entire process going badly and feeling too sick to exercise but fearful of being removed from the transplant list if they didn't do the exercises.
Shannon Wright: Or the fear of not being ready and being declined surgery. So we also talked to patients on site here at Toronto General
Shannon Wright: And they provided us with feedback about how it would be helpful to have more help and advice on how to navigate the process and just more support in general.
Shannon Wright: They were had requests for more physio therapy. They wanted CF dedicated professionals at the transplant center, who would better understand their illness. When they came to see us as well as some information around delirium and how to be more prepared for that.
Shannon Wright: And so when we analyze the feedback from these patients and family members.
Shannon Wright: Really it highlighted a number of concerns that contributed to increased emotional distress this emotional roller coaster that patients were experiencing and inability to move forward in their lives.
Shannon Wright: With these feelings of isolation and homesickness multiple financial stressors and many fears related to their health in the future.
Shannon Wright: Difficulty with sleeping nightmares and of course delirium. And so this increased emotional distress, we know has a significant impact on both the physical and mental health for both patients and family members.
Shannon Wright: And so as clinicians who like to jump in and fix problems. This is what we're trained to do. And, you know, we're very problem focused or solution focused kind of group. And we'd like to just jump right in and
Shannon Wright: What happened was the, the quality improvement group approached me and asked me to be interested in helping them.
Shannon Wright: You know, look at some ways that we could better support our patients mental health needs.
Shannon Wright: And so immediately I thought of several ideas that I thought that we should trial and do
Shannon Wright: And then, you know, we just sort of slow down for a minute to think about, Okay, well, what does, what does the research tell us what's. Is there anything that's already existing What do patients really want
Shannon Wright: And so the current literature on mental health needs in this particular population. So CF lung transplant recipients is really limited
Shannon Wright: Poor quality studies and there's very few of those. But they do tell us that the anxiety rate is as high as 58%
Shannon Wright: With depression rates as high as 16% and this increased acceptance of suicidal thoughts. Many of these individuals are having difficulty adjusting to life after transplant.
Shannon Wright: With feelings of hopelessness and helplessness, as they struggle to maintain a positive attitude about their lives and disease.
Shannon Wright: And there's a lot of increased distress related to transplant aftercare.
Shannon Wright: Impaired function of your organ rejection and this distress really exacerbates the mental health symptoms and increases the risk of suicidal thoughts so
Shannon Wright: What we really need to do is have a better understanding of the patient and family mental health needs by going directly to the patient and family members in order to understand more about their experience.
Shannon Wright: And so
Shannon Wright: What we decided to do was apply for the CD tarp grant the innovation grant
Shannon Wright: And the goal of our study is to answer the question, what are the mental health needs of CF patients after transplant.
Shannon Wright: And so, in particular, we're going to look at the early transplantation period post transplantation period which we define as two years after transplant and this is consistent with the current literature about
Shannon Wright: Where we're seeing the highest need or for mental health intervention. And so we're going to do a mixed methods study where we're going to ask
Shannon Wright: Patients if what their experience was like as they went through this with their mental health needs were as well as
Shannon Wright: Screen screening tools and telescreen tools for their mental health and we're going to test do that at two points with patients. We're going to do that.
Shannon Wright: Three to six months after transplant and then again 12 to 15 months after transplant, because the feedback we received is that it'd be helpful to look at two different time points in that early post transplant period.
Shannon Wright: And then we're also going to go to the caregivers, or the support group of if we get things if we have those patients and just ask them what their experiences were like
Shannon Wright: As well as the clinicians who are providing care to the patients and seeing if they're offering mental health supports or resources to these patients.
Shannon Wright: If they feel like this is a gap and they care they provide. And if there's a way we can better support them.
Shannon Wright: So the plan is to take this data and then use it to inform the next phase of research to develop and tested intervention that will meet hopefully the needs of these patients.
Shannon Wright: And if we could just advance the next slide. So
Shannon Wright: Really we want to involve patient partners from the very beginning of our project. We know that that's the best practice and research and that that aligns really well with the values of our quality improvement group.
Shannon Wright: And so ideally, they're involved at the very beginning of any research project and we know that patient partners provide a unique and critical lens.
Shannon Wright: To the work that we're doing and they help us remain focused on patient needs values and expertise and really improves the accountability and the transparency and the research and clinical care that we provide.
Shannon Wright: So we became involved with the CD tarp patient partner platform Leanne. And so then connected me with to patient partners and Sheila is one of those partners and we met.
Shannon Wright: Initially virtually to discuss the study and they they each shared with me their journey through transplant themselves or Lyft experience as well as we reviewed.
Shannon Wright: What the studies goals were, and the design of the study. And so we thought it might be useful to share some really specific examples of
Shannon Wright: The importance of involving patient partners and then really, really the difference that it makes and so specifically we're sharing feedback from the patient interview guides
Shannon Wright: And so before we involve our patient partners, you know, some of the questions.
Shannon Wright: That we were going to ask patients. Where did you ever feel the need to access mental health care before, during or after your transplant.
Shannon Wright: How easy or difficult was it for you to access mental health care after transplant. What made it easy. What made it difficult, what kinds of supports. Did you access and if you didn't access but needed to. How would you do that.
Shilpa Raju: And so, like, from my perspective, once I was reading this there like a few things that stood out for me in this section. So one was. I thought it might be important to develop
Shilpa Raju: A better understanding of like the baseline information. So asking questions around like how someone would describe their own mental health prior to transplant.
Shilpa Raju: And maybe from this, this might help. The researchers identify certain factors that could signal like an individual's need for more supports later.
Shilpa Raju: Or, on the flip side, are there potentially protective factors identified from people who didn't highlight as much of a need for additional mental health supports post transplant.
Shilpa Raju: And the other thing that I was thinking about was that it might be helpful to rephrase, some of the questions to not put the responsibility.
Shilpa Raju: On the individual to initiate the access. Just because patients do have a lot on their plate pre and post transplant. There's like so many things you're dealing with and
Shilpa Raju: Like, I thought, I thought back to my own transplant. I spent the first six months. Sorry, six months of the first year.
Shilpa Raju: In the hospital with three of those months being pretty traumatic like I was on ECMO then I see you on and off event.
Shilpa Raju: And when I think of the time being out of the hospital after that I actually don't remember a single time in any of the years since transplant.
Shilpa Raju: Where I was either offered information on what supports might be available or what supports I could or should consider accessing so I thought it was important that that you also ask
Shilpa Raju: Not just what people are patients or families access but also what supports what they offered and what supports where they made aware of. So this gets a little bit at how or like what the patient perception of whether the system was proactively supporting them was or is
Shannon Wright: Yeah. We also included
Shannon Wright: Some baseline demographic questions which just tell us about the patient population. And this is, you know, as a novice researcher, this is just what you do in studies, you just ask basic questions about who people are and where they're from, and what they do.
Shannon Wright: And so some examples of that word, how do you identify your race or ethnic background. Were you born in Canada. What is your immigration status.
Shilpa Raju: So I can see how from a patient perspective.
Shilpa Raju: There might be some questions around, why am I being asked the speed at what, how does this make me feel so I think people might not always be initially comfortable with answering these questions and they may also be wary of and so they are being asked these questions.
Shilpa Raju: Potentially thinking about that could be pigeonhole the stereotype to certain way because they identify certain group or background.
Shilpa Raju: So I think it felt important to also when you're asking these questions to maybe preface it with why this information is being collected and how it might be helpful.
Shannon Wright: And then finally, you know, the study is primarily focused on
Shannon Wright: A patient experience and the mental health needs of patients.
Shannon Wright: And but but we are interviewing caregivers and really the caregivers in their role as supporting the patients.
Shannon Wright: And observing the patient's mental health needs or how we're missing meeting those needs. So some of the questions we had intended to ask caregivers were
Shannon Wright: How easy or difficult was it for the recipient to access mental health care after transplant. What made it easy.
Shannon Wright: What made it difficult if the recipient didn't access mental health care after transplant but needed to. How would you help them access it. And how would you support the recipients access to mental health care.
Shilpa Raju: And these are great questions.
Shilpa Raju: Just some of the feedback to as to consider how limiting the data collection to the mental health of the patient might potentially
Shilpa Raju: Impact character responses. So although the study objective was to look at the mental health of the recipients, it's still important to recognize and be sensitive to the fact that there are needs and potentially unmet medical needs also for the caregivers. So just
Shilpa Raju: being sensitive to that and understanding what their experience the transplant was like, so the feedback was more around just having continue to maintain that awareness. When asking the questions. And also being aware that this might be something that could impact caregivers response.
Shannon Wright: And we just advance to the next slide please.
Shannon Wright: Thank you. And so when we reflect on our experiences like from the clinician perspective.
Shannon Wright: It really was just such a privilege to learn more about the lived experience and just being so generous with their story and willingness to share that with me.
Shannon Wright: was incredible. It was also incredibly humbling and so I thought of myself as this mental health champion and advocate for mental health patients.
Shannon Wright: For my entire career and it felt like I really missed something that it was so obvious that, you know, we wouldn't put the onus on patients.
Shannon Wright: To seek mental health resources, that's our responsibility as clinicians. So the fact that I, the question was even phrased in that way. It was almost shameful. I felt ashamed of that.
Shannon Wright: The feedback was really constructive very helpful very supportive and are the patient partners were really involved in the process.
Shannon Wright: And it was also I hadn't wanted relief that okay, our group is on the right track. This is something that people want and need and you know we're going to be doing a good thing here so that it was really just an incredible experience from my end.
Shilpa Raju: My experience. It was really interesting to hear a clinician.
Shilpa Raju: Or we start to reflect on what the identify those gaps, too, because some things might seem obvious, but others might not
Shilpa Raju: And often their work can build off of work and published research that's been done. So like we don't always get to hear their perspective.
Shilpa Raju: On the issues that they're dealing with and we deal with doctors and clinicians, all the time. And they're involved in their care. But still, for them on the outside, kind of looking in that
Shilpa Raju: Their knowledge that the real experience can really be built out through the feedback that we share and our comments so that takes me to the next point.
Shilpa Raju: The patients provide this real world experience to supplement the numbers. So our experiences. Bring that human element to the numbers.
Shilpa Raju: And in a way, I think it helps to validate, maybe even, in some instances disprove what the numbers show so numbers helped identify problems which is like identifying the what, but the why and the how. So why something might be an issue or how
Shilpa Raju: We as a health care practitioner or even just as a system might be better able to fix it. Those kinds of details like
Shilpa Raju: Come from patients and patient partners and even clinicians who interact with those patients. So I think I kind of think of it as like the numbers and stuff, a bit of the black and white and the human piece is what provides that color.
Shilpa Raju: And the last big thing is that it is empowering to potentially help future patients. So as a patient and recipient.
Shilpa Raju: I am and continue to be very grateful and very cognizant of the fact that I've been super fortunate in receiving the transplant.
Shilpa Raju: And without the longest. Like I wouldn't be here. I wouldn't have been able to experience so many of the things
Shilpa Raju: That I've had the opportunity to do. And so now that I'm in this like regular life cycle of, you know, work. Eat Sleep see friends have fun travel before Colvin
Shilpa Raju: It's still always felt very important to me to find a way to be involved in trying to give back or whatever to transplant and there's many different ways that people
Shilpa Raju: Can choose to go about this for me being in public health and sort of a science type person I've felt that contributing this way through research and policy type work platforms. It felt like a good fit.
Shilpa Raju: So although I'm here today. My transplant experience wasn't without a significant amount of challenge. So I think it's also important for me that this process and experience gets better for every person who goes through it and future. And, you know, maybe even
Shilpa Raju: Myself at some point. So yeah, I think that that growth mindset and the drive to continually improve. It's so important, including from a system level. And so as a patient if we're able to participate.
Shilpa Raju: And contribute to that system that wants to do that and is actively asking for and appreciating the need for our voice. I think it's super essential to be engaged and and that's what the CD tarp and the patient partner platform has given us the opportunity to do
Shannon Wright: And then you just advance to the next slide please.
Shannon Wright: So in summary, really we learn our group learned that we need to involve patient partners from the very beginning.
Shannon Wright: The CT RP could not have made that easier. And it was a very easy process. We were really well and continue to be really well supported
Shannon Wright: And just to seek the ongoing feedback. So throughout the study will be coming back to ask our patient partners for feedback on you know improvements and, you know,
Shannon Wright: As we analyze the data, what they're seeing from a patient perspective.
Shannon Wright: And then just with regards to next steps are studies right now undergoing the ethics review and approval at the University Health Network. So here at Toronto General
Shannon Wright: And we're hopeful to start recruiting participants for the new year. So in January. So fingers crossed all goes well, and we'll be able to get going soon. So thank you so much for your time and we'd be happy to answer any questions that people have
Mélanie Dieudé: Thank you so much for this presentation. I think the way you highlighted the clinician researchers side and the patient perspective and how emerged and makes the project even better. I'm you know I think really well done. We have a very active chat.
Mélanie Dieudé: Your you can read that the the applause your presentation. I think a lot of people are waiting for this type of project to be
Mélanie Dieudé: Really alive. And I think you two are showing a great example of what partner patient partnership is and i and i hear also Shilpa his voice in terms of caregivers. I think it's a it's a really good point well taken. I think it should be.
Mélanie Dieudé: Kept I am looking at the Q AMP a
Mélanie Dieudé: And so do you expect to see differences in what support recipient and family say they need versus what clinicians say they are providing
Mélanie Dieudé: Oh, absolutely.
Shannon Wright: Absolutely. I know there's a difference right now but I
Mélanie Dieudé: Obviously, we will wait for
Shannon Wright: The research to come back to
Shannon Wright: As evidence of that. But in my current role and anecdotally, as I see patients.
Shannon Wright: Certainly there is a bit of disconnect between what patients are needing and asking for and what what they are being offered and what's available to them, for sure.
Mélanie Dieudé: Excellent, thank you have a comment.
Mélanie Dieudé: Oh, you're muted.
Shilpa Raju: No.
Hans Vorster: I wasn't muted about 30 seconds ago.
Hans Vorster: Somebody's messing with me.
Hans Vorster: Anyway, I congratulate the two
Hans Vorster: Of you for for a terrific presentation, I would totally out of my realm of knowledge. So I've been very pleased about excuse me about hearing about all this and
Hans Vorster: Admire you both for for for taking some broad steps forward and the whole process of patient engagement, something that is dear to my heart. So Chopin China. Thank you very much.
Mélanie Dieudé: Thank you. In Indian Trust that time, I think we have to move on to the next presentation and next panel, but please read that sad, you can feel free to answer if you want. And this is an ongoing
Mélanie Dieudé: discussion that we should all have. Thank you so much to both of you.
Hans Vorster: Know, then our next panel will be moderated by Nancy McCullum hope. See it CIA HR spore, and there's a small disclosure CDT RP did not receive any funding from co chairs books for although it has originally the original grant funded by CIA char.
Hans Vorster: The panel will be discussing balancing patient expectation and clinical needs in research. That's me.
Nancy Mason MacLellan: Thanks hands. Can you hear me okay
Nancy Mason MacLellan: Yep, perfect. Thanks so much.
Nancy Mason MacLellan: Good afternoon, everyone, or good morning, I guess.
Nancy Mason MacLellan: No, not still not done morning in the west coast.
Nancy Mason MacLellan: So good afternoon, everyone. My name is Nancy Mason McClellan and I'm delighted to be with you today and to moderate a session with our fantastic panel.
Nancy Mason MacLellan: Who asked themselves introduce themselves in just a moment.
Nancy Mason MacLellan: And some of you are already aware, the strategy for patient oriented researcher spore is a national strategy that involves many different partners and stakeholders across various sectors.
Nancy Mason MacLellan: Patient oriented research is research that engages patients and their caregivers and family members as partners and it focuses on patient identify priorities.
Nancy Mason MacLellan: And improves patient outcomes. All of this is done in research teams that are comprised of those stakeholders. So patients researchers has co professionals healthcare system administrators and policymakers, among others.
Nancy Mason MacLellan: Spores about providing the evidence needed to inform the development of health policies and improve the health care system.
Nancy Mason MacLellan: In other words, are focusing on moving what health researchers know into what health care providers do
Nancy Mason MacLellan: So We're no strangers to the value challenges and other importance of patient partnerships and supporting multi stakeholder research team.
Nancy Mason MacLellan: In particular, to the impact of the covert 19 pandemic. Sorry. In response to the impact of the coven 19 pandemic.
Nancy Mason MacLellan: There's a need to pivot project renegotiate partnerships and transition into different ways of working together.
Nancy Mason MacLellan: So for this future avenues of research session, we hope to spark a candid and forward looking conversation with this panel to learn about perspectives on how to balance.
Nancy Mason MacLellan: The various realities dynamic needs and constraints within a multi stakeholder multi perspective research team.
Nancy Mason MacLellan: As you've likely seen from the program. We have a range of perspectives to draw upon and I have the privilege to know all the panel members for several years now. So we're going to have a great discussion.
Nancy Mason MacLellan: I'll ask the panelists introduce themselves, starting with Caroline long and then followed by Kate john
Caroline Wong: Great. Hi, everyone. Can you hear me okay
Mélanie Dieudé: Yeah, I can hear you. Thanks. Caroline.
Caroline Wong: Perfect. So hi, everyone. First of all, thank you, Nancy. And thank you to the CDC RP team and the organizing committee for this invitation. I'm really happy to be here.
Caroline Wong: Even if it is virtually and to see so many familiar faces around the table. So my name is Caroline Wong. I am the Executive Director of an organization called the Center of Excellence on partnership with patients in the public that's located here in Montreal.
Caroline Wong: We've been working with the CD tarp for quite a number of years now to really think about and study the integration and also the mobilization of patients and families and donors.
Caroline Wong: In health research and throughout the network. So it's been a long lasting relationship that we've had with CD to RP for quite some time now, and it's really a privilege for us to be here.
Caroline Wong: Our center at the center, we really focus on you know as the title of our of our center is
Caroline Wong: Says, we were really focused on how to mobilize the experiential base knowledge of patients and families and even public members in the improvement of our healthcare system. So I get the privilege of working
Caroline Wong: Not only co directing with a patient partner but also working with a multi disciplinary team of patients family partners, researchers clinicians
Caroline Wong: Policymakers and project managers on how we do this all collectively together. So it's really great to be here. Here with you and to join Kate in this discussion.
Nancy Mason MacLellan: Thanks so much, Caroline, Kate.
Kate Chong: Hi, nice to meet you, Caroline through virtual and Nancy. Thank you so much, NCD tarp for the invite as well.
Kate Chong: So I'm Kate Chong, I am kind of the patient partner perspective on this discussion today.
Kate Chong: So a little bit about myself. I am located here on the west coast in Vancouver and have been for a number of years. I am a kidney transplant recipient just over three years ago from my amazing husband.
Kate Chong: Who was my match. Who knew, and so the journey as almost 10 years since I started with kidney disease and and chats, not three years ago.
Kate Chong: And that lovely gift has my new role is I just became a mom, four months ago. And so, you know, his gift has allowed us to start our family, which is amazing.
Kate Chong: Now from the other side of things from the get go, of getting diagnosed. I wanted to get involved to make a difference and research or something I really hadn't been involved in before, but was of interest and
Kate Chong: Must have been amazing guidance from others.
Kate Chong: It was fantastic to kind of dive in and literally dive in and the group that I got really involved with was the Cancel see Katie and Hamza who is co moderating here today with the whole conference is
Kate Chong: You know, part of that group as well. And you know, it's just an amazing experience. And I can pull on with a discussion about a few of my experiences through that patient oriented research from the very beginning.
Kate Chong: And then on for career wise I then made a switch. A few years ago, and now I work for the Kidney Foundation, of course, right on right now maternity leave, but I do patient services. So working with patients that are
Kate Chong: Dealing with kidney disease, maybe just diagnosed going through transplant extremely rewarding and very much
Kate Chong: You know, being able to pull my own experience when helping and talking with people of, you know, I get what they're talking about. So hopefully I can provide some insight today around patient oriented research.
Nancy Mason MacLellan: Thanks so much for that to Kate and there's a few pop ups of congratulations on starting your family.
Kate Chong: Thank you.
Nancy Mason MacLellan: So great introductions. I think gives a great snapshot as to why these panelists have been chosen for for today's discussion.
Nancy Mason MacLellan: So without further ado, we've got about just about 16 minutes to go through our questions. So I'd like to pose an initial question to the group.
Nancy Mason MacLellan: In a research team with different perspectives, different interest is a fine tuned balance between expectations and needs. So I'll ask my question and Katie, I'll ask you to start the conversation if you'd like.
Nancy Mason MacLellan: What are your experiences with achieving this balance and have you experienced some of these dynamics firsthand when partnering and research.
Kate Chong: Yeah, so I think the big thing with researches everyone wants to same end goal, you know, successful research, of course, we all want that.
Kate Chong: Just sometimes it's different. How we get to that spot of success or sometimes not, depending on how research goes
Kate Chong: My two key words from a patient's perspective on this question is the biggest things I find that are important. Our communication and understanding when it comes to communication, I would say in all aspects of our lives. It's extremely important no matter which way but how
Kate Chong: Making sure what is expected of a patient partner through research is outline clearly that's a huge piece and making sure that patients know what they're getting into. And not just kind of being thrown into research.
Kate Chong: One of the other big things sometimes speaking in lay terms. Many patient partners aren't from the medical world.
Kate Chong: They may not know all the doctor jargon, as we say.
Kate Chong: And so one of the big things we always said is, like, you know, please try to bring it to you know what we can understand. And then also encouraging our patient partners to speak up to be like, What are you talking about, like, please.
Kate Chong: explain this to me. And so that they can feel free to ask those those questions for really understanding
Kate Chong: This has come up a lot within our network with can solve is that we're patients, we're dealing with illnesses that time sometimes we're doing really, really well. And sometimes we are doing well.
Kate Chong: And so sometimes stepping back is what's needed and research that's tough. Everything needs to keep moving forward.
Kate Chong: And one of those big things that we put in place within many almost all of our projects I think within Council.
Kate Chong: Was that we would have co chairs and those co chairs as a patient partner co chair, along with the researchers, so that if one patient partner needs to step back
Kate Chong: Someone else would be able to keep things moving forward so that the whole project wouldn't come to a stop.
Kate Chong: And taking time to hear the patient lived experiencing and seeing how they can help form the research from the very beginning.
Kate Chong: And in some research, research projects and they bring patients in from the things that are already rolling
Kate Chong: And I just want to kudos to the last group Shannon Shilpa that is a great segue into our conversation here and just how important the patient partner voice is and how impactful, it's been just even where it is today.
Kate Chong: And as I saw many comments. Everyone's like, okay, let's let's see where this can go and kindness be across all all Oregon sort of thing.
Kate Chong: And so one of the things that was cancelled was that it was right from the very beginning.
Kate Chong: They the patient partners were part of what was determined and important from the get go. It wasn't just hey let's get you in here have the little check mark on the box.
Kate Chong: They were they're asking and forming the questions with the researchers, which makes it more of a meaningful process and hopefully better outcomes in the end.
Nancy Mason MacLellan: Thanks so much for that Kate.
Nancy Mason MacLellan: The roles and responsibilities is so key to any project team and not just those with patients. So I think
Nancy Mason MacLellan: You know having accessible language so that all those around the table can understand and have a very clear.
Nancy Mason MacLellan: Set of roles and responsibilities is key that buddy system, I think is fantastic. And I know that there's other teams that also use that to perspective as well. Caroline. What do you think, what do you have to add to this question.
Caroline Wong: I mean honestly kid had covered sort of all of the key points that I also wanted to get at. And so I really want to
Caroline Wong: commend you on that and you really I think highlighted, I would add just two additional pieces which are totally related to what you just said I think recognition is
Caroline Wong: Is a particular piece that we often talk about and I don't read in
Caroline Wong: Recognition necessarily in like giving titles and etc etc. But I think that's part of the roles and responsibilities, but also the recognition of that experience on base knowledge as a type of expertise and a type of critical competence.
Caroline Wong: That needs to be around the table and I think that that is really something that
Caroline Wong: Is sometimes a cultural shift for a lot of people to just kind of realize that there's that type of expertise that's around the table and that needs to be acknowledged as such.
Caroline Wong: And therefore it has a space. It has the it requires the time to be around the table and it
Caroline Wong: requires a certain attention to mobilize that type of expertise in the same way that you would mobilize
Caroline Wong: The expertise of a biostatistician of an epidemiologist of any other type of partner that you're including around the research table. So I think that is something I'd add to that, which I think is interesting.
Caroline Wong: And I think timing is always one that's particularly interesting in research. I didn't. I know a lot of the comments that we get. And we often
Caroline Wong: You know challenge ourselves with also when we work with new research teams that are just starting to partner with patients in in their research projects is this
Caroline Wong: Clarity of timing. So we all know that everybody rushes for the, like, four weeks just before a grant application has to go in and everything is like crisis mode and urgent.
Caroline Wong: Everything is in crisis mode and urgent and you need the letters of support and although the
Caroline Wong: Patient testimonies and all of these things in
Caroline Wong: And then it is like dead silence for like six months or etc. So I think in the same way that it's important to respect the relationships that you build with other types of experts around the table, it's as important that you communicate well with patients.
Caroline Wong: And that all all sides of the party of the team communicate with what with one another with regards to the expectations of the implication and the type of mobilization of the expertise that is around the table.
That's what I that
Nancy Mason MacLellan: Thanks so much, Caroline. I'm really glad that you have indicated that I often say when people say, well, we don't know how to engage patients. I say,
Nancy Mason MacLellan: If you're asked to bring your expertise to the table. How would you want to be treated. Right. It's all of those the experience. So thanks for that.
Nancy Mason MacLellan: I'll move to the next question. How important is taking time to build strong relationships for achieving a balance between expectations and outcomes or needs and what is needed to facilitate this lady Carolyn asked you to start
Caroline Wong: Yeah, so I think this falls in line with what we just talked about. It's about building relationships.
Caroline Wong: I'll be a bit more anecdotal. But one of the things that always amazes me whenever I start, you know, we start supporting different
Caroline Wong: Teams and pairing patients partners with different teams. It's just how much the patients are able to actually
Caroline Wong: Kind of already gel help gel. The relationships around the existing table. I know that a number of people around this table that around this, this group here today, as reflected on the fact that
Caroline Wong: You know, patients often help all of the research team to better understand what's going on in the research because
Caroline Wong: It just, it communicates the reason it's so firmly communicates the reason for why the research is being done so clearly.
Caroline Wong: And there is a there's, there's, there's an important aspect of relationship building in that. So I think that there, that, that, to me, the
Caroline Wong: Relationship. It is a partnership and partnerships. You can't have the word partnership. If you don't have a relationship. And I think that is why
Caroline Wong: Taking the time and everybody says, Well, yes, but it takes so much time, but you need to take time to build a relationship with the other team members around the table. So this is part and parcel of that same quality of building relationships.
Caroline Wong: And I think it is fundamental to the culture change and it's fundamental to making sure that we can meaningfully engage patients family members in this case donors as well around this table and public members and citizens as well in
Caroline Wong: being active actors in where the future of health research goes but also the future of our healthcare system in general, we need to
Caroline Wong: All as citizens, to a certain extent also stand up and and and and be more active as Partners in Care and build these relationships with researchers as well.
Nancy Mason MacLellan: Thanks, Caroline, Kate, what are your thoughts.
Kate Chong: Yeah, no, a partnership is key. And I think
Kate Chong: From my experience, patients sometimes want to see that outcome and don't immediately always depending if they've been involved in research before if they're new to research, they want to see those outcomes and they don't always understand why it can't happen faster.
Kate Chong: You know, why can't we get to that outcome faster, but by building those relationships between the team will help them understand why it takes time and why you know there's sometimes
Kate Chong: Things that have to be matched before we can move on to the next stage sort of thing and and that if that all happens, then you are likely to keep patients engaged in the long run, and then having hopefully more successful and
Kate Chong: You know there'll be more willing to help with additional projects because usually once you get hooked in hands can also say this to you. It never ends.
Kate Chong: Which is lovely. It's fantastic. And if that relationship is strong and they'll probably feel more comfortable about speaking up within within conversation.
Kate Chong: Sometimes, you know, asking questions people are nervous about it and I even have moments to depending on the dynamic of what's happening.
Kate Chong: I can be in a big meeting or small meeting, but if you guys know each other. You're a little bit more open to. Okay, this might be a silly question, but let me ask it and people if you're a good team.
Kate Chong: That you've built strong together. Typically, everyone's like, okay, let's talk this through. And let's make sure we're all on the same page because as soon as you get lost.
Kate Chong: Within a conversation. Sometimes patient partners kind of freeze up and don't know you know how to move forward with things. Um, let me see what other question I had a couple comments here asking questions I've seen
Kate Chong: Yeah, the big thing is that they feel part of the team versus us versus them is, is the big thing is that to build those relationships takes that away.
Kate Chong: And then, of course, comes back to communication and transparency to help the team achieve that outcome, I think, is huge. If the team is that front and forward, where the pros, the cons. The everything is then things will move forward faster and hopefully more successful.
Nancy Mason MacLellan: That's great. I was trying to take notes, but I can't keep up all these fantastic points really appreciate this.
Nancy Mason MacLellan: So we're coming into our time, I think, I think we started a little bit late. So I think we can go to the 325 so I'll take a stab at getting into the third question.
Nancy Mason MacLellan: What are the expectations and realities that patient partners might bring to research team. I think we started to touch on a little bit. So maybe we can can talk a little bit, a little bit further on that case you want to take a stab at this one.
Kate Chong: Yeah. Um, so my main couple points around that. One is, you know, I think most researchers see
Kate Chong: The positive and having patients involved. Sometimes they just don't know how to engage and what we found with patient oriented research training has helped both researchers and patients. See how they can work together for those all to feel comfortable with it.
Kate Chong: Patients want to share their lived experience. You know what matters to them and want to try to help others who may be dealing with it or in the future.
Kate Chong: You know, have the same illness and they want the best outcome for future. So maybe others don't have to deal with it. If that's where the research is going
Kate Chong: And then another big piece around to is just making sure there's a diverse representation around the projects and that sort of thing. So you have kind of everyone around the table so you get that best
Kate Chong: Making sure everyone's there and the best outcomes.
Nancy Mason MacLellan: What are your thoughts.
Caroline Wong: Yeah, I mean, I totally agree with all the points that were just said, I think what I would add to that is, is, and I'm not, I'm not a patient. So I'm not here as as far as representing the patient voice. But I think one of the things that
Caroline Wong: We hear often is something to consider is that there's a
Caroline Wong: Need for a certain level of healthy tension. I think that can happen and that can be brought around the table. I think we particularly often as Canadians tend to be quite anti anti conflictual and we don't want to be
Caroline Wong: We don't want to show that we're against anything but you know the reason why we're all around this table is because we want to see things change. We feel like there's a space for improvement, and sometimes you have to
Caroline Wong: Sometimes you have to be both from the, from the researcher and the clinician side kind of willing to hear these things that you may not want to hear.
Caroline Wong: Because they question the way things are being done. Presently, or they question. I lived human experience that is painful. And that is, and that can be quite challenging.
Caroline Wong: But also, you know, that's also part of what the patients want to bring to the table because they want to be able to improve something that they lived in their lived experience.
Caroline Wong: Maybe didn't go well. And so they want to see and contribute to in a productive.
Caroline Wong: beneficial way how to change that. For other patients in the future and and for themselves and to give meaning to set, what can have sometimes been
Caroline Wong: A difficult experience. So I think that's something to keep in mind when we think about the relation to go back to the question before, a lot of this relationship, but also what is the opportunity for
Caroline Wong: Patients families and donors to bring around the table and to see it as a positive, even though it can sometimes be you know humanely challenging
Nancy Mason MacLellan: And Caroline it. I think it's, I'm glad that you brought in that perspective of
Nancy Mason MacLellan: Testing, testing one's own knowledge or beliefs, because sometimes. Change is hard and it's sometimes easier just to say the past
Nancy Mason MacLellan: I heard from an indigenous elder at a conference I attended in the north. It was virtual but it was in the north.
Nancy Mason MacLellan: This past couple of weeks, and it's changed at the speed of trust. And so we have to really trust each other. Else change really won't happen. So I think if we can build those relationships. It's important because that's when change will happen.
Nancy Mason MacLellan: So I will take the prerogative to close this out. And in doing so, I like to ask in 20 seconds or less. What would you like to leave the conference participants as the key takeaways from this session, Caroline, you want to start and then Kate will have you close out, sir.
Caroline Wong: So quickly roles and responsibilities agree, make it clear, as you wouldn't any partnership, find the right partners. That's a key kind of piece of that. Think about who it is that you want around the table and make sure that they also understand why they're around the table.
Caroline Wong: Acknowledge the expertise.
Caroline Wong: And but honestly last and most importantly, enjoy the opportunity, I think that is it's been one of the most humanely rich experiences for myself to get to work in partnership with patients on a daily basis and be surrounded, my dear colleagues, that I have
Caroline Wong: around this table and I look it's inviting because I get to work with him every day. But that's been and I couldn't think of a better thing to do. And it's a humanely enriching process. So enjoy that process and take advantage of it.
Nancy Mason MacLellan: Thanks, Caroline very heartfelt Kate.
Kate Chong: I was gonna say that was very well, sad, in a sense, and it is. It's also about building those
Kate Chong: Long term honestly friendship. Some things that come from these experiences and I think of all of the wonderful people that I have met through
Kate Chong: My almost 10 Years of Living with a disease and and anyone that's heard me speak before, you know, honestly, I say, you know, as crappy as some days are. I honestly wouldn't change my journey because I have
Kate Chong: Been able to experience so many amazing things because of getting involved in research meeting amazing people. And, you know, honestly, it's just one of those things that, you know, making sure that yeah you have
Kate Chong: Communication and outlining those expectations. And also, you know, being open to the feedback and constructive input and just making sure that you everyone is having a good experience and and honestly being part of a team is very rewarding. So
Nancy Mason MacLellan: Thank you both. And I'll pass this on to Hans and Kate enhance this is the first time you've not seen me present and not get emotional.
Nancy Mason MacLellan: This is a very, very humane. Absolutely. And it definitely brings out emotions when you have the opportunity to connect with such amazing individuals that are
Nancy Mason MacLellan: Literally giving their lives to to this research and then from the research or clinician side taking that in as their livelihood. So, you know, I think it's a pretty special bond that we've brought in Building These Partnerships.
Nancy Mason MacLellan: Over to you.
Hans Vorster: I have a quick question before you all part, to what extent
Hans Vorster: I think that that
Hans Vorster: The whole concept of
Hans Vorster: patient engagement and research has not been entirely universally accepted yet by pronation. Certainly, and a number of patients who find themselves to be
Hans Vorster: feel uncomfortable because they don't simply simply don't know enough about what's going on and what what can understand the language.
Hans Vorster: To what extent do you think this could be ameliorated by an organized by organized training programs. I know there are some that know number of them exist.
Hans Vorster: And number of people who have gone through them. But is it you think it's essential that in order to establish good relationships between clinicians and
Hans Vorster: Patients in within the projects that both sides. Take some training in order to accomplish that.
Caroline Wong: Katie, you want to go.
Kate Chong: Well you know I we've been in multiple meetings. I'm with our cancelled and sustainability planning and, you know, big topic is around training and the essential need and I've pointed it out to my notes as well that you know training.
Kate Chong: You know we we all. Generally, most people know how to work together. But you know the the importance of training.
Kate Chong: So that you know it can be successful and patient partners can feel comfortable. I think is super essential. There are a lot of great
Kate Chong: Resources. And I think there's future plans for your even more and maybe centralized which should be fabulous, just so that
Kate Chong: You know, people know where to go to get that training and looking at do that those things become mandatory within applying for grants and stuff like that to show their commitment and having patient partners involved from the very beginning, and everyone feeling comfortable about that.
Caroline Wong: Yeah. And if I could just add quickly, I think it is important, but like I think we just need to consider that training is a means is also it's a tool. It's a tool to changing culture. It's tool to changing perspectives.
Caroline Wong: And obviously the more system meditation and I want to do the shout out now to see HR on that sense you know if the HR hadn't created a patient engagement framework, it would we wouldn't be where we are in the country. Now, I think, with regards to
Caroline Wong: How many patients and how much the patient perspective do we still have work to do. Yes, is there ways to more systematically include that in reflections in health research and across the health spectrum. Absolutely.
Caroline Wong: So we all have to work collectively on being able to do that. Now, I would say, and we're going to as an as a last point I would say for the clinicians around the table as well. We have to keep in mind that there's also the concept. Fundamentally, we want to
Caroline Wong: Identify what it means to be a partner in care at a direct care level because that's what we're trying to change at the end of the day, we're trying to change how care is delivered and received in and and and given. So I think
Caroline Wong: Part, all of this is as a way to ensure that we're transforming our systems so that we can all be Partners in Care and that we can all approach.
Caroline Wong: The relationships that we have that patients have between healthcare professionals and and how the relationship that patients and family members have with their health care system in a way that they're really active actors around the table so I can
Hans Vorster: I could. All right, it's, it's time for a very brief break. I don't know how much time we have, because we're already running behind
Mélanie Dieudé: That
Hans Vorster: Five minutes, it is
Hans Vorster: Just please remember that the next session is about you.
Hans Vorster: And it's we have a period of time when we are going to be asking you for your ideas and opinions and thoughts. So over the next five minutes just
Hans Vorster: Put your fingers to your forehead and think carefully about what you want to say there are currently 57 people in the in attendance. We hope to hear from almost all 50 settle
Hans Vorster: For one point of a pee break. Bye.
Hello everyone, welcome back. Are you back as well.
Mélanie Dieudé: Let me open my video. There is, there you go.
Mélanie Dieudé: So welcome to the audience discussion next priorities and research as per patient family donor and research partners so
Mélanie Dieudé: We have a very, very nice panel to start the discussion with I'm saying start because we're having a couple of camera open right now. But at the end, I want everybody's camera on. So just be ready.
Mélanie Dieudé: So hands. For now, you're going to be a panelist right
Mélanie Dieudé: You're going to be a panelist with critical as well. Yeah, whereas Christian yeah the CO Chair of the, the, the whole forum and then we have the pleasure have David ourselves.
Mélanie Dieudé: Dr. Allison MA and Dr Karthik tenant car and a little bit of a highlight with Karthik today ease live a new city tarp member. So we want to congratulate him.
Mélanie Dieudé: So maybe we'll start with the introduction.
Mélanie Dieudé: Maybe kartik you can start with introducing yourself and then we're going to have a question with with all of it. So let's just introduce ourselves first and then we're gonna go with some questions Karthik
Karthik Tennankore: Sure, just double checking. Can you can hear me okay
Mélanie Dieudé: Yes.
Karthik Tennankore: So this is the first thing I'm going to say it's uncharacteristic I'm being bathed in this sunlight from the side.
Karthik Tennankore: And I actually, I live in Halifax, Nova Scotia. So it's very uncommon to be receiving this much sunlight. So this is maybe a very positive and kind of happy days that's good to see that, but I'm so, so thank you so much. My name is Kurt the tennis court. I'm a nephrologist
Karthik Tennankore: I'd say before anything else, you know, loving husband and a proud father of two boys who keep me on my toes. Pretty much all the time.
Karthik Tennankore: But I think you know relevant to this. I'm also a clinical researcher and
Karthik Tennankore: You know, I've had the pleasure of being sort of the research lead for our program in Nova Scotia. And I would say that, you know, my research interests. They've always been really broad
Karthik Tennankore: I do a lot of research with dialysis patients I participate very closely work very closely with horns around the area of
Karthik Tennankore: Clinical trials and working on improving sort of administration of clinical trials. She's very fulfilling as well.
Karthik Tennankore: But I do have a really big interest in research and transplantation and I had a mentor. Early in my time here as a staff who really got me interested in transplant research.
Karthik Tennankore: And I don't want to get into sort of all of my my areas of interest, but sort of the area that I perhaps most interested in is around the waitlist and
Karthik Tennankore: My biggest project is looking at outcomes for people on the waitlist with a specific focus on something called frailty and
Karthik Tennankore: From time to time. You might have heard about this idea frailty, but it's the idea that, you know, over time, we may build up.
Karthik Tennankore: Small impairments, you know, in our health, our function and maybe our mobility and those small impairments, they can kind of build up over time and they may put us at a higher risk of having poor health.
Karthik Tennankore: And what I'm really interested in is looking at this idea frailty and how it might impact the health of people who are waiting for a kidney transplant and
Karthik Tennankore: Ultimately, what I'd like to do is if we identify that there is the strong link.
Karthik Tennankore: It would be to sort of find ways to maybe improve the health of people who are waiting for a kidney so that they can then subsequently benefit from from that gift.
Karthik Tennankore: And I won't get into all the other areas, research, but I'm happy of courses. As always, to talk about them. If a situation arises during this panel. Thank you.
Mélanie Dieudé: Thank you so much Karthik Ellison
Allison Mah: Great things. So I'm also ma. I'm a transplant infectious disease position at the University of British Columbia. I'm predominantly a clinician and clinician educator
Allison Mah: Although have been more and more being pulled in various directions. And so, you know, either to join in on the discussion from a clinician transplant ID perspective out somebody said they can't hear me can nobody hear me.
Allison Mah: Melanie. Can you hear me okay
Mélanie Dieudé: Yes, yes.
Mélanie Dieudé: We can hear a little bit. Yeah, we can hear you.
Allison Mah: OK, I will work on my mic.
Allison Mah: It's always a problem.
Mélanie Dieudé: No, I was better before actually
Mélanie Dieudé: Not bad. I'll leave it. Yes, all the closer. Anyways, that's
Allison Mah: That's me. I mean, I have some thoughts. I know that we're going to discuss, but I'll hold that for later.
Mélanie Dieudé: Thanks. Allison David are tell
David Hartell: Us.
David Hartell: But everyone, it's, it's a pleasure to be here and I'm and I really do appreciate the invitation to join you at the end of what has been like an incredible experience in the last two days have just been incredibly inspiring. So thank you for this opportunity.
David Hartell: So those that don't know me, my name is David hotel. I am a father. I'm a husband. I'm a community member. I'm a musician. I'm a big Star Wars fan.
David Hartell: But I'm also passionate about organ donation and transplantation and have been involved in the community for for almost a decade now, and
David Hartell: And yeah, I feel really inspired in the work that I do and working with patients and families and donors and clinicians and experts around the community who do amazing work in and who were really dedicated to transforming the you know the lives of patients in Canada.
David Hartell: And so my current role right now as I'm Associate Director of system development at Canadian blood services and system development.
David Hartell: You know a lot of people think it's it stuff, but really it's about trying to think about how do we how do we take the work that's being done in research and how do we develop policies, how do we how do we take that and say, okay, well, this is what the evidence says this is what
David Hartell: You know, new research has shown this, how do we then take that and develop a policy that everyone we can make sure everyone is is has the same access
David Hartell: Is receiving the same treatments, the same outcomes across Canada. So no matter where you are in Canada, you're receiving the same care.
David Hartell: And donations and transportation is one of those interesting, you know, we all know
David Hartell: Healthcare is run eventually in Canada donation and transplantation covers all jurisdictions, it's, it's a Canadian system and we all benefit from each other's successes and the strength of the program is really based on how well everyone works together how well we share how well we
David Hartell: You know,
David Hartell: Put the needs of our patients first and no matter where the patients come from across Canada so I'm excited to be here, passionate about research and and appreciate the opportunity. So thanks.
Mélanie Dieudé: Thanks, Dave. Hans
Mélanie Dieudé: I think in another panel you explain who you are.
Mélanie Dieudé: But you can't explain it again.
Mélanie Dieudé: I think that I've said it several
Hans Vorster: Times actually
Hans Vorster: What I haven't said
Hans Vorster: Is that I live in Kingston, I am looking out over a golf course which is a distraction at any time of the year, but
Hans Vorster: Particularly on sort of
Hans Vorster: When the
Hans Vorster: The start changing
Hans Vorster: I am married
Hans Vorster: To a former dancer was a National Ballet, who is currently a landscape architect and in spite of the covered some parts of the construction business are still going strong and the architects are
Hans Vorster: Calling like mad. So she's very busy. I'm very busy and what's coven to anybody, anyway.
Hans Vorster: So I have a son and who is
Hans Vorster: An adult. I'm senior adult
Hans Vorster: Is in the film business not working as hard as the rest of us anyway.
Mélanie Dieudé: Anybody anything else.
Mélanie Dieudé: I can tell you know that's enough.
Mélanie Dieudé: Well, I want to hear your perspective. After for sure Christie.
Kristi Coldwell: Are you
Mélanie Dieudé: Hi everyone. I'll try to
Mélanie Dieudé: keep this short. You already
Kristi Coldwell: Had to listen.
Kristi Coldwell: To me, I'm happy.
Mélanie Dieudé: Yesterday, so
Kristi Coldwell: Most of you know I'm Senior Advisor for
Kristi Coldwell: Transplant research advocacy, the transplant Research Foundation of BC. I also work as a child life specialist with heart teens.
Kristi Coldwell: But perhaps most importantly, is I'm a heart transplant recipient of 20 years I celebrated my anniversary this August
Kristi Coldwell: And it was as a result of congenital heart disease. And for me, I'm, you know, talking about research and learning about it. It really gets me excited because of course
Kristi Coldwell: I realized that I'm alive today because of research because of the advancements over the years and it also research is also what gives meaning to all the friends that I've lost over the years, who
Kristi Coldwell: Perhaps died waiting or whose body just couldn't withstand the rigors of transplant life so research is what's gives me hope. So I'm super excited to be here with you all, and I look forward to seeing what everyone has to talk about. So that's all for me.
Mélanie Dieudé: Thank you. Christy and just because Hans thought asked me to participate as well as moderating say why am so I'm a very blessed Mother floor. Thank you see their shadow here behind me.
Mélanie Dieudé: I'm also an immunologist based in Montreal from investment, Ohio, and I'm the pleasure to be the executive director of the CVT RFP and
Mélanie Dieudé: I'm just so pleased to I mean those two days have been incredible. I'm sure we're going to finish with a lot of great discussion about what's coming. And this is so exciting.
Mélanie Dieudé: About research. So I think my first question that I have. Oh, I have not forgot to say because they have said that he's a musician and I love to sing. So one day we always thought we say we should start. So maybe that's the next that's coming to in addition to research.
Mélanie Dieudé: So the first question I have for the panel first and then we can develop I think with the audience.
Mélanie Dieudé: What is coming up in your field you come from all the different area of the research and donation and transplant.
Mélanie Dieudé: What is for you. The next big thing. What is is game changing what is transformative. What do we, we need to expect. And then I want to hear perspective from patient on what the role they think they should have and what their what their gaps are
Mélanie Dieudé: In terms of what we need to do next step. So Karthik first
Karthik Tennankore: So yeah, so great question. I you know I had the pleasure of listening to the last hour of conversation. So I think a lot of my work on the next big thing was done, but
Karthik Tennankore: And what I mean by that is sort of the idea of you know the the go scaffolding for kidneys be implantable devices for dialysis.
Karthik Tennankore: But one thing I think would be kind of interesting just to touch on that. I think it's going to become very interesting
Karthik Tennankore: Is around machine learning and kidney transplantation artificial intelligence, machine learning and
Karthik Tennankore: You know, I'm going to start by saying I'm not an expert, but I've had the luxury of collaborating with some machine learning experts locally here in Nova Scotia.
Karthik Tennankore: And really, the whole idea of this area of machine learning is that you know we we try to look at health situations health outcomes.
Karthik Tennankore: For individuals for patients using techniques that are very effective.
Karthik Tennankore: You know, using as much sophistication, as we can, but maybe not fully using the full capability of what some of these computers can do in terms of having access to all the information
Karthik Tennankore: That may be there. And I think some of the very interesting things that I'm seeing around artificial intelligence and machine learning is being able to
Karthik Tennankore: Take all kinds of information that's spread across a wide variety of different areas, different data sources and to combine all of that information.
Karthik Tennankore: And look at maybe novel ways to deliver care. So, you know, just to bring you to a small example.
Karthik Tennankore: You know one thing we're trying to do, for instance here locally, is we're trying to create a large data set where we are able to get information, you know, of course, navigating all the right channels.
Karthik Tennankore: Ethics, making sure everything is properly confidential.
Karthik Tennankore: But getting available information around, you know, lab investigations health conditions that people may have
Karthik Tennankore: Maybe even getting access to sort of imaging reports kidney biopsy reports taking all of that information.
Karthik Tennankore: And then using these tools of artificial intelligence and machine learning to help us figure out, well, what combinations of these factors may give people who get a kidney transplant the best possible health downstream.
Karthik Tennankore: And and then I guess you know to push that another direction.
Karthik Tennankore: If we find certain combinations of these factors that may be are not associated with with better health downstream. How can we fix that. How can we change that. How can we help those patients those individuals.
Karthik Tennankore: Knowing that information and you know it's funny I there's no more humbling experience than working with experts in machine learning because
Karthik Tennankore: It, you know, sometimes people I heard earlier, making sure you speak the right language. I don't think I understand any of the language that they're using
Karthik Tennankore: But I can tell you that it's, it's, I think it's a very neat cutting edge area that we're going to see some very interesting and perhaps very helpful things moving into the future.
Mélanie Dieudé: Karthik. Thank you so much. I think the only thing I'm going to say is you. So one of my first point I wanted to bring up so I hope after you three speak there. I'm still gonna have something to say. But I might
Mélanie Dieudé: Think that, but this is a great point. Allison.
Allison Mah: Yeah, so I guess everybody can hear me now one of the areas that I would
Allison Mah: Say,
Allison Mah: From a transplant infectious disease is in general and is personalized medicine. I guess would be the word. And so really, you know,
Allison Mah: immunosuppression is important, of course, for protection of graphs, but it is a blunt instrument. And so an ability
Allison Mah: To develop acids to help us determine pathogens specific immunity, so that at an individual level, we know how to
Allison Mah: Kind of help target immunosuppression and target our treatment and prophylaxis and monitoring approaches.
Allison Mah: So an example of this includes CMT immune essays, which can help us to predict who is not at risk of developing CB reactivation and dust doesn't require antiviral prophylaxis.
Allison Mah: And this is important because it prevents individuals who don't need antiviral prophylaxis from being unnecessarily exposed to the potential side effects of these medications.
Allison Mah: And it also allows for us to target resources towards the people who are at highest risk and ultimately likely leading to cost it into the system.
Allison Mah: So overall, I guess, more of a nuanced and personalized way to be able to look at people's immune responses of Allah graft, as well as to pathogens and I think kind of
Allison Mah: spinning out of that is also the ability to assess the immune response during times of infection.
Allison Mah: And so what should we do when somebody develops an infection with the immunosuppressants and an example of this is something that's actually, you know, been very salient because with Kobe we've had to decide what to do with people's
Allison Mah: immunosuppression and this is something that we see all the time coven notwithstanding, but
Allison Mah: You know with coven itself and many other infections part of the disease manifestation can actually be the overactive immune response. And so it's possible that actually removing immunosuppression could could drive the illness itself and that it's not
Allison Mah: The virus. And so having ways to assess people's kind of state of immunosuppression at the time of an infection and and also what the best response with our immunosuppression is, I think, is something that is really important.
Mélanie Dieudé: Thank you so much. Allison. So now I'm going to show you my seat because number one was AI number two was personalized medicine and even though monitoring. So they've please leave me something to
David Hartell: Say after
David Hartell: No, no, I'm feeling
David Hartell: No, no, you've got you have so much to say.
David Hartell: I have no doubt.
David Hartell: So, you know, I was gonna, I was going to add on to
David Hartell: You know AI.
David Hartell: Karthik brought up anything personalized medicine is very important. But to me, one of the biggest impact we can have
David Hartell: And one of the things I'm the most excited about in donation and transplantation is actually probably one of the simplest things and something we should already know, but then it comes down to data.
David Hartell: And the two areas of data areas where we actually don't have enough information in Canada is
David Hartell: It really comes down to two things. One, how many donors are we missing in the country. We don't know the answer to that question and two is how are, how are transplant patients doing
David Hartell: Like three years, five years 10 years 20 years out. We also don't have that information at a national level.
David Hartell: And both of those things that we know this information this weather is huge impact. I think probably the most profound impact and in terms of improving donation and transplantation in Canada. So for on the on the
David Hartell: How many donors are we missing. You know, when you think about our deceased donation numbers.
David Hartell: And we're just about to release the new 2019 numbers. But when you look at you know there's 300,000 roughly 300,000 people that die per year in Canada. And when you think nationally across Canada.
David Hartell: The number of deceased donors, we had was 750 deceased donors. That's it. Out of 300,000 people die and then when you start thinking about it in that way. And you say, Okay, what's aware of the mist. The owners were, how did we get from 300,000 down to 750
David Hartell: And when you start trying to answer that question, you realize that we actually don't have this data.
David Hartell: And so we've been working with all the provinces and with health Canada and with partners across, across each of the provinces to say how do we let start doing
David Hartell: Just evaluating our Miss donation opportunity and looking at that data will give us a sense of single people who were were in the country which hospitals, which units which
David Hartell: areas of medicine or is there, the greatest opportunity to identify potential donors. So is it emergency medicine is it neuro critical care is it
David Hartell: You know the resuscitation community, is it a particular hospital and in one area is that the rural hospitals, the urban centers, but we can't do anything until we have this data.
David Hartell: And so, that to me is the biggest, most exciting thing that I think is on the horizon is just being able to start doing this.
David Hartell: Donor audit and Canada. And once we have this data, then it's a matter of saying, Okay, well, now what do we do with this.
David Hartell: What are the interventions, what are the strategies. What are the the techniques we're going to use this data to change behavior.
David Hartell: So, same thing with transplant outcomes. Once we know how well or how well the patients are doing
David Hartell: You know, every time we write these grants, we have to write in how many patients that are in Canada living with the transplant.
David Hartell: And we're honestly we're guessing every time we write this. It's a number. We just kind of
David Hartell: Estimate because we've actually we don't have a registry of trends. How well transplant patients are doing
David Hartell: We don't know how well their, their medications are doing. We don't know what medications are on. We don't know what their
David Hartell: You know their, their quality of life and all these outcomes. So I think there's a huge opportunity there. And something that to me is just, it's so simple and fundamental if we can get this data.
David Hartell: There's so many more questions we can answer it a national level. So that's what I'm the most excited about. There's other things coming down the pipeline, you know, the use of marginal Oregon's the use of expanding the use of tissue donation and transplantation.
David Hartell: Expanding you know the the amazing work that's being done in medical medical assistance and dying and organ donation.
David Hartell: So anyways, that's, that's it for me, but I'm excited to hear what other people have to say.
Mélanie Dieudé: I think I'm gonna go before giving the, the place to patient perspective to Hans Christie and and the rest of the audience.
Mélanie Dieudé: I would love to bring you in my dream my dream system. And I think emerges, a bit of everything that people said, I think data is key. I think without data.
Mélanie Dieudé: We're going to have trouble, figure out what what's next would need to be done, but imagine the world if we had
Mélanie Dieudé: A system that learns that learns about what we do well and what we do wrong.
Mélanie Dieudé: And that needs data that needs to everything, every time we do a transplant we allocate an organ or tissue.
Mélanie Dieudé: To someone we follow just like David said, We follow and we see is it, is it a good thing is the treatment that this person is give is is receiving is good appropriate
Mélanie Dieudé: How does this immunosuppression react, you know, do what can we monitor immuno monitor in a very precise way and have that data in
Mélanie Dieudé: And then with AI and machine learning, we would know this is a good route so we should
Mélanie Dieudé: Then, after a while, be able to predict and to help us and giving the best Oregon to the best recipients match and then to follow them with treatment that is appropriate and the good thing about this.
Mélanie Dieudé: Way of thinking is that everything new that we learn and that we were pitching new treatment you way of repairing organs or creating organs.
Mélanie Dieudé: Can be be entered in that system and we can learn about the outcome of that system. So to me that's the biggest dream and the other dream.
Mélanie Dieudé: That goes with is is tolerance of course you know tolerances is the grail for a lot of people in. We had a call with patient partner and and we had so much enthusiasm, when we heard imagine the world without prednisone imagine, but there are research going on right now. T regs.
Mélanie Dieudé: From garbage to go the timing to read from Lori and Megan, there's a donor identification lower my cash I say
Mélanie Dieudé: There is card decks, where there's houses where there's many. And I think the other key is that we need to work together because we need to put all those pieces together. And I think AI.
Mélanie Dieudé: And machine learning is what end data is one way to put ourselves together, but we need to talk to each other and to know what the others is going is is is doing and the impact of and the benefit of each and every thing that we discovered
Mélanie Dieudé: So welcome to my dream life.
Mélanie Dieudé: Hans
Hans Vorster: Well,
Hans Vorster: There's, there's an awful lot to respond to
Hans Vorster: Certainly, I, I agree that data and supported by AI is a very important factor public as important as any other and that I can think of.
Hans Vorster: Particularly because the
Hans Vorster: Promises improvement without intervention for a patient obviously intervention is always has negative connotations, even though the outcome might be very positive as it is in my case, in most cases where people with successful transplants.
Hans Vorster: But if there's ways of actually improving the situation without
Hans Vorster: Cutting anybody open that clearly is is a great step forward.
Hans Vorster: I
Hans Vorster: However, there has been there are millions of dollars being spent on fundamental research into creating organs and I think we've heard
Hans Vorster: At least two approaches to that three actually today and in order to put that into some kind of context, I would like to do a quick poll. If, if I may, at this point.
Hans Vorster: That has been asked the the backend team to put together. So I kind of pull. Number one, would you i would i would have actually tested these questions.
Hans Vorster: In normal circumstances, before I posted them, but this gal came at a sort of the last moment, so I trust that you'll understand what I'm getting
Mélanie Dieudé: At
Hans Vorster: How do you feel about the possibility of artificial mechanical implantable
Organs
Hans Vorster: I don't like the idea at all. I'm somewhat skeptical, but perhaps it should be explored further I'm fairly positive on the idea I
Hans Vorster: Would like to learn more. And I think it's a great idea.
Hans Vorster: So please fill it in and
Mélanie Dieudé: We don't have the music today.
Hans Vorster: I'm fairly positive on the
Mélanie Dieudé: Idea and would like to learn more 52% someone sceptical 28 a great idea, don't like the idea at all zero.
Hans Vorster: Good one.
Hans Vorster: Let's pull, please.
Mélanie Dieudé: How do you feel about the possibility of time Merrick big grown implantable Oregon.
Mélanie Dieudé: For example, pick room.
Hans Vorster: Yeah, so the project that was
Hans Vorster: One of the ones that again was talking about.
And
Hans Vorster: That certainly is being done large and large much by
Hans Vorster: This company I mentioned
Hans Vorster: Or God got it. But again,
Hans Vorster: Retro
Hans Vorster: Anyway,
Hans Vorster: It's it's a big deal in the US.
Mélanie Dieudé: Going to have the answer. Soon out, same thing.
Mélanie Dieudé: A little bit more more acceptance. So 52% I'm fairly positive would like to learn more somewhat skeptical 28 and think is a great idea 19 again 04 I don't like the idea at all.
Hans Vorster: And then finally,
Hans Vorster: Number three.
Hans Vorster: Good about the possibility of container groans stem cell based
Mélanie Dieudé: Implement
Hans Vorster: And find a vital organs and that's the ghost organs. I think that we're talking about.
Hans Vorster: And there are a number of other projects underway and one of the Netherlands and
Hans Vorster: And I think she kind of was also working on that. And that where
Mélanie Dieudé: They take
Hans Vorster: A person's stem cells own stem cells and through
Hans Vorster: Various methods.
Hans Vorster: Grow an entirely new organ on the behalf of you in in vitro, if you will.
Mélanie Dieudé: Oh, oh, more buy in here for the first time, I think it's a great idea 44 fairly positive need to learn more somewhat skeptical only 7%
Mélanie Dieudé: Then zero don't like the idea I
Mélanie Dieudé: Think I don't know yet it's still in on but
Mélanie Dieudé: Awesome, well for them result.
Hans Vorster: Yeah, that's, that's pretty positive I think
Hans Vorster: So in fact, it says some of the
Hans Vorster: Some of the millions that are being spent on it.
Hans Vorster: Or are probably well spent and possibly. That's the way. Ultimately, we will go and
Hans Vorster: Have to worry about using marginal
Hans Vorster: organs are there such things, because we can create them in such a fashion.
Hans Vorster: Then we get the same effect, were there.
Hans Vorster: Any difficulties whatsoever. I mean an implantable
Hans Vorster: organ that lasts for your lifetime is
Hans Vorster: Certainly a dream.
Hans Vorster: And it might just come true, probably not in my lifetime, but
Hans Vorster: In many of the other people around here. So,
David Hartell: I think it's interesting handy, even just in the three different questions. So the whole concept is
David Hartell: You know that we can move away from from donor Oregon's into some kind of new replacement
David Hartell: And if you look at the way the three and I like the way you find three questions. One is a mechanical Option one is a, you know, an animal option one. One is a stem cell grown option you can see people's preference leaning towards something that is
David Hartell: No se it's more organic or natural or, you know, human derived something that resembles the closest to you know something, you can create. So, I think. Anyways, I think it's interesting that that you know where people's sort of preference seem to lie and
David Hartell: You know, the whole concept of growing these, you know, I remember seeing the video from
David Hartell: Mel. What's her name and Lawrence Taylor and yeah tourists and you see that the rat hard. You see that the
David Hartell: See through scaffolding, and then the stem cell just knows where to go and open it creates a hardness start beating. But what I'd love the most about that story is that they had trouble growing, they could grow it in the
David Hartell: petri dish.
David Hartell: If you've already talked about this but grown in the petri dish and they can
David Hartell: start beating, but it beats in this a regular fashion that couldn't figure out how to make a beat. Then they realized with the harvest missing was pressure
David Hartell: It because it was growing in a vacuum. And so it wasn't you know like growing in a Petri dish to mimic the same of growing and in the body. Yeah.
David Hartell: And so once they started applying pressure to it as, as it was growing and forming it to get it to beat in a regular, you know, and I've been in a regular way. It's just all these little things that I think are so interesting to you know advance the whole field forward. It's pretty cool.
Mélanie Dieudé: Chrissy. Chrissy sorry Karthik you wanted to say something would look like here.
Mélanie Dieudé: I was just going to
Karthik Tennankore: briefly say that like I meant to ask this question with the presentation around the ghosts. Give me in the idea of like sort of
Karthik Tennankore: Keeping the scaffolding, and then putting in the stem cells, but it does make you wonder, we talked about, sort of, you know, Oregon, quality and, you know, not wanting to
Karthik Tennankore: To, you know, give organs of poor quality. We don't see almost wonder if you see a future of this technology is is putting stem cells into kidneys that might be sort of have lower organ quality and then
Karthik Tennankore: Upon transportation. Maybe they will, you know, we'll restore some of that quality.
Karthik Tennankore: Like you can't necessarily reverse scar and fibrosis or, you know, damage that may not be repairable maybe you'll maximize the kidney tissue that's there and that will promote you know longevity of that kidney. So I think it is a very, very interesting area.
Absolutely. I agree.
Mélanie Dieudé: Christie already
Kristi Coldwell: I know I'm finding everything that
Kristi Coldwell: You've been saying really quite fascinating. And honestly, our transplant recipient of today, even our donors, they're increasingly more complex and they were you know 1020 years ago.
Kristi Coldwell: And I think that's something that we really
Kristi Coldwell: Need to keep in mind. And that also kind of speaks to what David said regarding that data, you know, there really is a lack of
Kristi Coldwell: Continuity in the transplant journey, whether that, you know, between the waiting stage like the pre transplant and this also pertains to our donor population as well.
Kristi Coldwell: Right through to that kind of immediate post transplant or post donation, as well as long term.
Kristi Coldwell: And I think that's a really important point to keep in mind because these can exist in silos, we need to know kind of what's happening. You know how that and the pre transplant stage or what happens in that donation stage how that's affecting recipients long term.
Mélanie Dieudé: And transplant.
Kristi Coldwell: Isn't really looked at any more. Just is kind of that to give you a few more years. Now it's looking at, you know, in terms of years or even decades, fortunately it's not a cure. That's the ultimate goal and something I hope we will all strive for. I know we are
Kristi Coldwell: You think that's just a really important piece to keep in mind. And that comes back to that data and what David said we need to have that data so we can really
Mélanie Dieudé: You know, our decisions post
Kristi Coldwell: Transplant and long term can
Kristi Coldwell: Really be, you know, informed by what
Mélanie Dieudé: Happens pre transplant.
Kristi Coldwell: And just quickly. I also want to add that I perhaps it's not some revolutionary piece, but I think it's really important and I can see it from the chat questions or
Mélanie Dieudé: chat comments as well.
Kristi Coldwell: Is that
Kristi Coldwell: Even though we're really focused on these innovative discoveries and
Kristi Coldwell: advancements that we cannot
Kristi Coldwell: negate the importance of that quality of life piece.
Mélanie Dieudé: Because as
Kristi Coldwell: Much as we give our transplant recipients longevity. We also need to help to better
Kristi Coldwell: Understand
Kristi Coldwell: And address how we can empower them.
Kristi Coldwell: To really live their best life. And again, this pertains to donors as well. Whether you're living or deceased. It's how can we make that journey. The best it can possibly be for them for their families. So I'll stop there.
Mélanie Dieudé: No, I agree. Christie and something I forgot that I had it on my, on my list. I was the fourth point and actually in my dream life of that system that learning system you have problems in it.
Mélanie Dieudé: Because data on quality of life data and mental health can be incorporated in our system. And I think we have to understand that.
Mélanie Dieudé: The, the quality, the, you know, the fact that a transplant the Oregon coast. Well, it's well because the whole body as well. And the mind as well as I think as well and and i think your perspective.
Mélanie Dieudé: transplant patient and and recipient and caregiver because of the caregivers not going all the patients are going well either. I think we starting to realize that, but I think we should absolutely have more efforts there Karthik I think I see your hand and you know somebody
Karthik Tennankore: Somebody I think I made a comment on the chat that
Karthik Tennankore: We think about these things like you know AI and data. It's only as good as the sort of variables are
Karthik Tennankore: Factors that are in it so
Karthik Tennankore: Your point
Mélanie Dieudé: Is important.
Karthik Tennankore: I think the other thing that's really important is that there's a lot of probably ethics around AI that have to be considered too.
Mélanie Dieudé: Because
Karthik Tennankore: You know, if the only goal is that we want.
Karthik Tennankore: The best outcomes and the best, you know, patients and the best donors best Oregon's you may be putting some patients at risk, you know, in those types of situations. And this is where I really think in this era of AI patients are probably going to be the most important
Karthik Tennankore: Because they're going to have
Karthik Tennankore: To help us navigate this sort of AI data into a bit more of a practical and pragmatic sense when you're
Karthik Tennankore: Thinking about the patient in front of
Karthik Tennankore: You, you know, the machine may say one thing, but that doesn't mean you should be disadvantaging them. So I think that there's going to be a very, very big role for patients in in helping us understand and interpret these AI machine learning types of outputs.
Mélanie Dieudé: Completely agree. So before I open up for the rest of the audience for the last 20 minutes. Any other comments because
Mélanie Dieudé: I'm going to ask everybody to turn on their camera, not on mute. Everybody at the same time, David. Well, people are opening or their camera, Dave.
Mélanie Dieudé: Go ahead, for sure. So
David Hartell: So one thing that I'm really excited about in the future of research in this area is actually patient lead research project.
Mélanie Dieudé: I think that
David Hartell: Kind of excites me the most. There's been so much work. And I think the CV therapy has done such a great job in terms of bringing patient into the research teams and helping bring the patient voice.
David Hartell: To help the the clinicians and researchers think about the right questions are what are the root of what are the right questions. How do we analyze the data. What is the how do we have the patient perspective into this
David Hartell: And what I think is the next phase and research is when you start looking at projects that come from the patient's themselves so patient lead research that has been supported by the researchers who help the patient answer those questions and bring the methodology and bring their expertise.
David Hartell: To the table so that you know the patients are equipped with all the tools to be able to go and answer the questions that are really important. And I see lots of great examples of that.
David Hartell: You know, just one, you know, the work Marie and and Linda are doing in terms of, you know, they're bringing the questions and saying, Okay, well we need experts to help us answer.
David Hartell: The questions that we have, because it's important. And so, you know, I think this community.
David Hartell: Has been so impressive and there's opportunities to go and learn from other other patient lead communities. So, one that comes to mind is the HIV community has done an amazing job in terms of having community based research programs.
David Hartell: And I think, you know, we can learn from you know how other groups have done this. But what I would love to see, you know, in the next round of CD chair proposals is is
David Hartell: You know projects that patients have put forward and then you match it.
David Hartell: Up with the researchers who can help them answer those questions.
David Hartell: And so anyway, that's, that's, you know, I think that's an exciting avenue for the future.
Hans Vorster: Thanks a lot.
Mélanie Dieudé: Dave Yeah. We have a couple of great example of patient initiated.
Mélanie Dieudé: Our project, man. I see some of those faces there. It's so nice to see you all. It's you were on three pages. I'm not able to see everybody on the same time, but
Mélanie Dieudé: This is really moving to see all of you and and Kate's baby and oh my god this is so great. So for the next minute it's all yours. Raise your hand. You can go below you can raise your hand or raise your hand, physically and we'll give you the spot.
Mélanie Dieudé: On mute yourself.
Mélanie Dieudé: I will unmute
Sylvain Bédard: And I agree with all of you guys using IE and everything like that, but without donors, there is no transplant recipient.
Sylvain Bédard: So I think we should add as much span energy and developing it, and I don't have this solution. They've lopping
Sylvain Bédard: Better ways of transplant and finding donors compatible donors numbers of donors and things like that. Use whatever you want to do, but we also have to work on that part otherwise.
Sylvain Bédard: It doesn't go into shop. Forget the way I'm saying, but people understand it needs to come if you want to have outcomes.
Sylvain Bédard: And I want to thank all the donors that I see, I see a couple of one and one that it's her birthday today. So, and that they need to do is 50 year old today.
Mélanie Dieudé: There we go. I was going to say.
Mélanie Dieudé: Happy birthday, that
Mélanie Dieudé: You've been chopped every time.
Nathalie Trudeau: You had an idea.
Mélanie Dieudé: Somebody else wants to comment.
Mélanie Dieudé: By the way, if you don't know necessarily have a chat with her. She's exceptional so
Mélanie Dieudé: Anyway, see any. If not, I'm gonna start
Mélanie Dieudé: People on the spot. I hear my boy.
Mélanie Dieudé: Who else wants to
Linda Powell: Meet Greg was the caregiver for guys.
Linda Powell: This has been a fantastic conference. Thank you to everyone. It has been so stimulating first time that we've been on a two day online conference and basically connected
Linda Powell: 99% of the
Linda Powell: Time. It was just fantastic. So thank you very much.
Mélanie Dieudé: Thanks so much, Linda, I have to say I'm supposed to say that at the end as well as how my god people stealing my ideas is crazy, but I just want to take to two minutes to say a big, big thanks to the planning committee, of course.
Mélanie Dieudé: We see Hans and Christy, but there's also other. I don't know where she where she is with how is there as well.
Mélanie Dieudé: And I'm missing people Chelsea helped me and that CVT RP team so Chelsea Patrick when Leanne starker Stephenie Meyer Patricia dongles Tiffany Latvia boudoir
Mélanie Dieudé: These women are absolutely extraordinary and I've been working behind the scenes to all for those two days, you have no but we had fun. We have music we had, but so really you guys are fantastic.
Mélanie Dieudé: So,
Mélanie Dieudé: To come back to our what's the big deal. What's the next step.
Mélanie Dieudé: Karen, Karen.
Mélanie Dieudé: Karen Rocco Rocco.
Mélanie Dieudé: Are you clapping, or do you want to say something.
Mélanie Dieudé: Clapping clapping, I think.
Mélanie Dieudé: Who else I'm turning the pages. I don't see everybody at the same time.
Mélanie Dieudé: Joanna, you're a caregiver.
Mélanie Dieudé: What's the next big thing for you.
Joanna Mitchell: Oh, you're not allowed to ask me questions on a Friday afternoon.
Joanna Mitchell: One of the things that I was had kind of thought of when we were talking about world going through the mental health presentation was that that transition from pediatric care to adult care and making sure that there's a components being looked at for that because
Joanna Mitchell: You know, taking the child or pediatric care is very different than adult
Joanna Mitchell: Care.
Joanna Mitchell: And making that transition and acknowledging that there's going to be different issues coming from
Mélanie Dieudé: Somebody who's
Joanna Mitchell: Dealt with transplant like Riley, since she was seven months old versus somebody who's
Mélanie Dieudé: 30 and they've had their
Joanna Mitchell: Transplant. And, you know, they've learned to sort of live a normal
Joanna Mitchell: Life, whereas
Joanna Mitchell: She's never had a normal life. So I think making sure that we look at that part of the mental health.
Joanna Mitchell: When we're studying it, not just dividing it up into pediatric and adult but making sure there's we realized there's transition at some point as well. I know even just in the community with
Joanna Mitchell: People who are who live with heart defects and and don't make it like don't go to transplant, there's a gap between pediatric and adult as well. So making sure that we cover that gap.
Mélanie Dieudé: Yeah, absolutely. There are some research going on bed foster from McGill is one of the leader and there are so other initiatives, but I agree with you. That's certainly something that we need to to focus even more Karthik, did you have something to say about that. I saw you know
Mélanie Dieudé: I just agree.
Karthik Tennankore: I mean that that transitioning
Karthik Tennankore: I mean, we see it. We see it all the time and kidney transplants as well.
Karthik Tennankore: You know, very different.
Mélanie Dieudé: Type of care that
Karthik Tennankore: That happens sometimes in pediatrics and then
Karthik Tennankore: Suddenly there a lot of a lot of kids are in the adult world and they're still some of them are still of course very young. And I think, you know, the to be able to find a way to
Karthik Tennankore: Sort of maximize that transition. So their, their organs live the longest that they can I think lots lots of very important area. So I think, you know, Joanna your points very well taken. I totally agree with you.
Mélanie Dieudé: Allison. What is, what do you see, and then ID specialist in terms of pediatric versus adult is there.
Mélanie Dieudé: What is the, the, the, something that we don't know, do we really know what how you know treatment is followed between pediatric and and the recurrence of infection. Do we keep a good trace of that. And is there any impact.
Allison Mah: No, I mean, I think it's a, an important question as well. Certainly, we know that there are certain things that
Allison Mah: Younger recipients are at higher risk for because of
Allison Mah: Different times
Mélanie Dieudé: In terms of
Allison Mah: What you've been exposed to over your lifetime. So there are certain things that perhaps younger recipients haven't had kind of exposure to and therefore are more at risk or conversely, maybe they've had less exposure. So
Allison Mah: It's not
Mélanie Dieudé: It's definitely something that we are cognizant
Allison Mah: Of
Allison Mah: But then it is something that can become also
Allison Mah: Things that we see as people
Allison Mah: Transition, as has been discussed
Mélanie Dieudé: From kind of pediatric
Allison Mah: To adult, making sure that there is that bridge because people may go on to second transplants, or something like that. And then we need to know
Mélanie Dieudé: All of the aspects of kind of
Allison Mah: Their immunology and infectious history.
Allison Mah: With the previous teams.
Mélanie Dieudé: And they've in terms of data. I think that's another thing right to pull data from pediatric sites and and so to the tip in terms of research. We're very lucky to have all pediatric
Mélanie Dieudé: Transform program along, but it is also ethically different to ask, you know, for permission to use data from pediatric patients and you have the of course the parents and so on. So, David, anything to say about that. Well, that's one of the problems.
David Hartell: The patient reported outcomes projects that's led by Samantha, Anthony. It's the kids and Toronto. It's so important because that's getting the parents and patients.
David Hartell: Permission right up front to share this data is getting the patient's themselves to say yes, take the data. We want you to have it. We want you to analyze it. We want you to use this to help improve our care. So that's, that's part of it. The other, the other piece about data on the on the
David Hartell: You know donation and transplant side and this is a good collaboration between TV chair P CBS and then CST
David Hartell: Trillium is actually trying to understand how we just get the pediatric donation experts and the pediatric transport experts, just to talk to each other and to try and understand, Okay, well, what
David Hartell: Where are we in terms of pediatric transplantation in Canada. What are the numbers. What are the, you know, why is it when we offer
David Hartell: You know, pediatric organs that they're not accepted by transplants and the transplant side is looking for this. So there's all these opportunities, again, once we just know to share data. So I think, you know, lots of lots of great opportunities there.
David Hartell: Know you're on mute.
David Hartell: Thank you. I would say
Mélanie Dieudé: thanking you for your
Mélanie Dieudé: Your input. I'm looking at the people and then like to ask Mary, Mary, what do you want to tell us. Because Mary is
Mélanie Dieudé: Has wisdom, so please give us your wisdom.
Mary Beaucage: Say,
Mélanie Dieudé: Everybody that knows Mary's. They were like,
Mélanie Dieudé: Um,
Mary Beaucage: I just wanted to make a point in regards to no Karen and the chat had made a point about
Mary Beaucage: The diversity of the audience.
Mélanie Dieudé: I think a lot of that has to
Mary Beaucage: Do with building relationships.
Mary Beaucage: With different communities.
Mary Beaucage: You can't always just put the ask their the ask is important.
Mélanie Dieudé: But building the relationships.
Mary Beaucage: To and
Mary Beaucage: Showing them, what's in it for them in regards to getting involved with it with this type of volunteerism, or this type of work is really important.
Mary Beaucage: And we see this all the time you know its historic
Mary Beaucage: In the way that indigenous communities were tested and you know use and reuse in research without their consent.
Mélanie Dieudé: So there's
Mary Beaucage: A History of his trust so those things have to be
Those things have to be
Mary Beaucage: Looked at, and talked about
Mary Beaucage: The other point I really wanted to make was in regards to
Mary Beaucage: With regards to patient lead research.
Mary Beaucage: And I can tell you about, about one clear example.
Mary Beaucage: Cancel CK D. We have one of our research projects. Part of it is called the transplant ambassador program and that is the whole the whole goal of the project was to increase the
Mary Beaucage: Increase the amount of living donation. So one of the things that and and so we you know we had a forum with a bunch of patients we threw around ideas. And this is one of the ideas that came to the forefront was that
Mary Beaucage: Patients talking to patients and it's not necessarily peer support in the traditional sense, but it's patients, talking to patients in regards to their experience sharing that experience and the whole thing was developed and founded by patient partner.
Mary Beaucage: I now work on the core team, the provincial core team because we are testing it in in Ontario. But, I mean, it's all patient lead it's patient executed. You know, we have our support and our check ins and our calls with RPI but everything is everything is done.
Mary Beaucage: By patients and we have 27 renal centers in Ontario and we're presently in half of the renal centers, because that's our control unit or control group and out of all of those
Mary Beaucage: 13 centers. We have over 80 transplant ambassadors both donors and recipients who talked to people who are either a first we started talking to people in the
Mary Beaucage: In the dialysis centers, because that's where the immediate reaction is, but now we've gone into talking to people in the multi care kidney clinics before they have to think about modalities and
Mary Beaucage: Some people are really on the fence about that and talking about while I don't know if they really need to have that conversation beforehand but we feel it's really important that
Mary Beaucage: You know they hear these experiences because a lot of times people will not look at living donation because they're afraid of the impact on the donor.
Mary Beaucage: So, you know, these are the things. And we've developed the training the you know the relationships with with with the QA teams and things like that, too. So it's all very
Mary Beaucage: It's, it's just been enlightening how how patient driven it is
Mélanie Dieudé: Thanks, Mary always so thoughtful. Thank you so much.
Mélanie Dieudé: I see in the chat. Also, Elaine. Totally agree on diversity issue and also geographic diversity Canada doesn't stop at the rocky
Mélanie Dieudé: I'm just, I just have a very quick comments case, it's very disturbing to see your beautiful baby. I cannot concentrate no congratulation
Kate Chong: Thank you very
Kate Chong: Much. This is why transplant is amazed me is allows to have
Kate Chong: Cute little things like this. So, and the importance of research. So because I'm sure I'll need another one at some point in my life and I want to
Kate Chong: Be
Mélanie Dieudé: Here with her, you know,
Kate Chong: They're as long as I can be.
So,
Kate Chong: Absolutely.
Mélanie Dieudé: Absolutely. Any last word. I'm gonna ask Chris to enhance after the chair, but we can take a minute or two. If you guys have one more comment.
Mélanie Dieudé: If not Christie.
Kristi Coldwell: I didn't know what we were gonna
Kristi Coldwell: Have to say some last
Mélanie Dieudé: Night, just to wrap it up. Then I'm gonna wrap it up if you want. No. Awesome.
Kristi Coldwell: Super I'm a little tired after two days, two days that's
Kristi Coldwell: Transplant life right now. I just thank you all for being here. I know a lot of you been here for both days but and I am grateful to all the researchers and clinicians as well. And I just want to
Kristi Coldwell: I guess kind of a call for action for all of you, not necessarily our audience, but our researchers and clinicians and you've already here. So you obviously have a vested interest in engaging patients.
Kristi Coldwell: But not everybody does.
Kristi Coldwell: Um, it may seem to all of you, like, this is just happening out there, but it's not it's not happening.
Kristi Coldwell: In every aspect of research and I asked. So all of you to kind of take that away and be your be, I guess advocates for engaging those patients in your teams, however, that may look but thank you all and I'll hand it over to Hans
Mélanie Dieudé: ECHO.
What
Hans Vorster: Chrissy, said I, I'm very pleased that things have gone as well as they have I
Hans Vorster: Think that
Mélanie Dieudé: We had
Hans Vorster: A lot of
Hans Vorster: input from a lot of people
Hans Vorster: The talks are very interesting
Hans Vorster: I think this particular
Mélanie Dieudé: symposium will
Hans Vorster: Rate high marks. When we get around to analyzing all and I think everybody here for their participation.
Hans Vorster: And particularly, the
Hans Vorster: The people in the back who
Hans Vorster: Whose faces. We have not seen nor their voices heard. But whose effect has been very visible within the running of this particular conference. So thank you to them as as
Hans Vorster: Mel has done earlier and
Mélanie Dieudé: Thank you all for
Hans Vorster: For being here and thanks Melanie for
Hans Vorster: Thinking of the idea and creating
Hans Vorster: The framework for and letting a bunch of us lesser folks actually create run the thing. And so it says it was it was a great opportunity. Everybody wins. Thanks.
Mélanie Dieudé: It's a team effort day though not Mel. It's CDT RP as a whole and seek therapy means a lot of people again thank you to the team behind jealously and Stephanie's we don't know em.
Mélanie Dieudé: Patricia. Thank you so much, guys. Thanks to Christie Hans
Mélanie Dieudé: Heather and Sylvain the great planning committee with all you like you design everything so its birth. It was perfect. Thanks to our supporters center corporation with health Canada and do, etc.
Mélanie Dieudé: And I just want to finish with something I just received, Karen. I'm so sorry I'm gonna have to share what you wrote
Mélanie Dieudé: To me.
Mélanie Dieudé: I've been touch. So Karen, you're there. I'm sorry to read and she's Karen Rockville is there. I have to admit, not being a Canadian. Oh my god, a non Canadian on our panel.
Mélanie Dieudé: I am a British British liver transplant recipient living in England, I have my transplant 10 years ago in on a patient representative for the newly formed UK organ donation and Dr. Glenn Research Forum.
Mélanie Dieudé: It's been a privilege to join you over these two days we have learned I have learned a lot and it's been great to listen to all the presentation.
Mélanie Dieudé: In the future I will be very happy to share things that we're doing in UK it's an invitation. So perhaps the next forum should be
Mélanie Dieudé: Combined UK Canadian forum that would be a pleasure. I'm just throwing that out. But I think the patient voice should be heard, not only in Canada, but around the world. And thank you so much everyone for this great two days.
Mélanie Dieudé: Thanks to our supporters to
Mélanie Dieudé: Have a great weekend.
David Hartell: graduations nicely done.
Hans Vorster: Thanks David. Nice to
Mélanie Dieudé: Meet you
Caroline Wong: Nice results.
Mélanie Dieudé: We're gonna follow up with a survey for people that want to give us feedback always pleased to reach out to us anytime
David Hartell: Very cool. Good job.
Nathalie Trudeau: Thanks. Bye.
Hans Vorster: All right.