research programs patient family and donor Research Forum.
This is a virtual version of what was planned to be a one day event in Kelowna British Columbia.
Even if we're not in person. We hope you feel welcome and ready to share your experiences and questions we'd like to thank our 12 supporters who helped promote the conference and the organ donation and transplantation collaborative for their cooperation.
If this is your first time with us, the Canadian donation and transplantation research program or the CD tarp.
Has existed for seven years and has a patient family and Jonah research platform to support researchers with Recruiting, selecting the best patient family or donor research partner for their projects.
We worked with close to 300 researchers across Canada and 14 patient family and donor research partners to
This event is dedicated to Canadian organ donation and Transportation Research and how patient family and donor or PhD.
research partners are helping the success of that research the involvement of patients, families and donors in our networks research projects is extremely valuable and it's helping improve the quality and relevance of the research questions and the work that our researchers
A few words to explain how this event will happen. Each time slot morning and African has a dedicated game to honor each PFD profile CD TMP works when
We kindly asked participants to mute your mics and turn off your videos. So our speakers can have our undivided attention throughout the event.
If you have a question or comment. There are three ways to ask him if you're not familiar with zoom you can follow along with me now.
Number one, if you move your mouse to the bottom of your zoom screen you will see chat. Click on chat and you can type your question or comment and all attendees will see
Number two, if you look again to the bottom of your screen and click on participants on the list, you will see CDT RP Q AMP a as a participant click on that name and type your question privately.
Number three. If you would like to ask your question live. Click on the participants icon and click on raise hand on the right side of the screen.
In some talks, you might see an option pop up to get your feedback all calls are anonymous
Registration will remain open throughout the event. So if there are others that you would like to invite to join us. You can still feel free to do so.
The topics have been carefully selected by the planning committee Heather bad not dumping ground rule main run. And so then my dad and foreign co chairs crystal. Well, and how to foster. We hope you enjoy what we have in the store. Welcome, everyone.
Heather Badenoch: Good morning, everyone, and welcome all to the second day of the patient family and donor Research Forum. My name is Heather Braddock and I am your emcee for the next two hours.
Heather Badenoch: We have a great lineup for you as we dive into today's living donation block.
Heather Badenoch: So in the next two hours, we will discuss improving access to living donation through research will also discuss racial and sex based disparities in transplantation and living organ donation.
Heather Badenoch: And patient participation in research and as you know med school is not required, as these sessions have all been designed for patients, caregivers donor families and living donors.
Heather Badenoch: Tell you a little bit about my link to transplantation. I am a non directed living liver donor also sometimes called an anonymous donor and I gave you a Chen in Toronto in 2018
Heather Badenoch: I donated 22% to my liver to a child. I've never met, they've never met me. We don't know who each other is I applied to be a donor and was thrilled to be accepted and left it up to the transplant team to choose the recipient who needed it the most.
Heather Badenoch: My day job is as a communications consultant for not for profits across Canada.
Heather Badenoch: And my work is focused primarily on health organizations that focus on people facing systemic barriers. So my clients run
Heather Badenoch: Supervised injection site A Transgender Health Clinic urban health outreach and more
Heather Badenoch: And during coven my clients are also working disproportionately are working in disproportionately impacted communities.
Heather Badenoch: With racialized and low income populations. And this all ties in really closely to what we will be talking about today.
Heather Badenoch: I'm, I'm a volunteer with you, H and with CD tarp when with the Canadian liver foundation also with a vet clinic, providing free veterinary care to the pets of homeless people
Heather Badenoch: And also part of my link to today, and why what we'll be talking about matters so much, really, is that behind the scenes pro bono I helped to run
Heather Badenoch: The public appeals of people who are looking for living donors who face a lot of the systemic barriers that will be talking about today.
Heather Badenoch: So it is my honor to be here and to be your MC for the next two hours, we have a amazing lineup for you today. And so without further ado, let's get started.
Heather Badenoch: So you know that this morning will be hearing from the living donation side of things and we hope, of course, that you'll stay with us this afternoon because. We'll also be talking about future avenues for research.
Heather Badenoch: And as you just saw the video here on zoom the CD tarp Q AMP. A account.
Heather Badenoch: Will be posting the link to a satisfaction survey in the chat. After the block is over at one and so we know that you'll be staying to the end of this amazing
Heather Badenoch: Two hour session. Anyway, but your chance to share feedback as an extra reason to to stay for the whole time. So to start, let's welcome Dr. J. Gil.
Heather Badenoch: Dr. Jennifer Fleming and Sylvie Charbonneau to discuss what is currently happening with living donation research in Canada and how if it's improving. So we're going to start with Dr. Nadia sales owner and Dr. Jennifer Fleming. Nice to see both of you.
Nazia Selzner: Good morning headed. Thank you very much for this kind of introduction and good
Nazia Selzner: Good morning to everybody to be here. It's a pleasure to talk to you. My name is Dr. Nadia cells. Now I am a transplant herpetologist
Nazia Selzner: In Toronto and I am also the medical director of the live donor transplant program at the edge Marrow Transplant Center in Toronto.
Nazia Selzner: Um, one of the things that we wanted to talk about these access to liver transplantation, in general, and some of the barriers that are there for patients to get access to transplant and to living donor transplantation with a particular focus in terms of access for
Nazia Selzner: For patient from various cultural as well as a socio economic background. And this has triggered a interest for both myself and Dr. Fleming to try to study the need
Nazia Selzner: In terms of access to the liver transplantation and living donation in various communities. And then this has opened the avenue to this research that we are going to present briefly for you. So just a few
Nazia Selzner: If you
Nazia Selzner: Up. Sorry, I can get my. Let me see how. Oh yeah, here we go. Just a little bit background about liver transplantation in Toronto in and in our program.
Nazia Selzner: We are home to the largest liver transplant program in Canada. We have done over 3000 adult liver transplants since 1985 we created in the year 2000 living donation.
Nazia Selzner: For liver transplantation, simply because we realize that there is not enough.
Nazia Selzner: Disease donor organs to cover all the need for patients who require a liver transplantation and live donation would be a way
Nazia Selzner: To close that gap and make sure that everyone receive a transplant and are able to go back and have a healthy life. And last year, for example, we have performed over 200 liver transplant, including 60 transplants that have been done using a live donor organ 48 adults and 12 pediatrics.
Nazia Selzner: So what are the benefits of transparency to improve their health, longer life expectancy improve quality of life more energy ability to return to regular
Nazia Selzner: Activities work hobbies travel family, etc. And as I mentioned, there is a possibility to receive the liver transplantation to two different pathway, one is true diseased organ donation.
Nazia Selzner: Everyone who needs a liver transplant has to be listed for diseased organ donation.
Nazia Selzner: And debate on the waiting list for transplant. But if along that road. They have identified leaving donors that would allow them to get access to transplant faster.
Nazia Selzner: This is donations means that you must be quite easy to qualify to receive the organ because allocation of the organ is based on a
Nazia Selzner: Score that we are using is called sodium melt score that is calculated based on some biochemical parameter from the, from the blood test.
Nazia Selzner: Is also depend to the blood type, obviously, and their body size. These are the parameters that enter into the calculation of the sodium out score and the way the organs are allocated based on the blood group, whoever as a higher sodium outscored would attract a first organ.
Nazia Selzner: on the waiting list, which means that for many patients at this time point unless they have a
Nazia Selzner: Sodium health score that is closer to 30 or higher their likelihood to attract a cat other organ is no
Nazia Selzner: Which does not mean that they are not sick or they don't need a liver transplant is simply the reality of this is organ donation within low number of organs that are available.
Nazia Selzner: And hence the living organ donation, which is a feature, as I mentioned, we started in the year 2000 in Toronto.
Nazia Selzner: And it's a common treatment for liver failure in many parts of the world, there are
Nazia Selzner: Places, for example, like in Korea or in Japan, where the majority if it's not all the transplants is done through living donation simply due to the cultural belief that this is organic cannot be retrieved and cannot be used
Nazia Selzner: The benefit of the living donation. It's a life saving transparent with minimal waiting time faster return to a healthy life better long term outcomes and better quality or games. And you can see on one of this picture or MC is actually presented here, Heather. On the left hand side.
Nazia Selzner: After she has came for about a as a anonymous donor leaving liver donors is for us a big thing. And we are donor safety or is our biggest goal.
Nazia Selzner: And the qualification to be a donor is is outlined here everyone who is healthy. It's between the age of 16 to 60 years old normal liver function can be consider and can come forward to be a potential living donor.
Nazia Selzner: And just one quick slide to show the outcome of transplantation for living organ donation. This is 20 years of experience and follow up of adult liver liver transplant meter life donors, you can see that the red
Nazia Selzner: Graph is a recipients who received a living donor transplant the blue graphs or the recipient of a disease donor. And you can see that their outcome at up to 2020 years post liver transplantation is excellent and in some and it's even a tiny bit better than that. This is the organs.
Nazia Selzner: With this I will pass over to Dr. Jennifer to talk about our
Sam Dey - (Heart recipient, 2015 ): And in these questions.
Nazia Selzner: So I was hearing someone talking. Yeah. Not sure if it was a
Nazia Selzner: Child is a
Nazia Selzner: Microphone, which wasn't muted but me this. I was going to pass on to my colleague, Dr. Fleming, that is going to talk a little bit more about our research and our goal to increase access to the being donation for values socio economics, but also an ethnic, cultural background.
Jennifer Flemming: Okay, thank you. Now as yeah
Jennifer Flemming: Maybe if I'll get you to stop sharing your slides. I have some other some slides that I've put up there. So hi, everybody. Thanks for joining today. My name is Dr. Jennifer Fleming and I'm an associate professor
Jennifer Flemming: at Queen's University and the Department of Medicine. I am a general hematologist and I do what we call health services research, which is using large databases of routinely collected patient information to look at trends in
Jennifer Flemming: new cases of disease healthcare utilization outcomes. And I do this using patient data in Ontario.
Jennifer Flemming: And after cells and Aaron, I have been awarded funding from the CD tarp to conduct this current project, which I'm going to talk to you about
Jennifer Flemming: Which is called the prevalence of incidence of liver disease and access to liver transplantation and living donor donation and ethno racial communities, which we call the access LT project.
Jennifer Flemming: So just as a bit of a background understanding trends and current and future cirrhosis disease burden is important. It helps us
Jennifer Flemming: As clinicians and researchers to identify key exposures that lead to chronic liver disease within specific regions or populations.
Jennifer Flemming: Once we understand this, we can also help to develop education strategies to identify disease early and its course where it may be treatable reversible
Jennifer Flemming: We can also help to implement disease management programs and therapeutics and specifically with respect to organ donation and transplantation, we can help to assess changes and prevention efforts and help facilitate future health care resource planning.
Jennifer Flemming: So this slide, I wanted to just highlight because don't transplantation for cirrhosis is the most common reason why people get liver transplantation.
Jennifer Flemming: And the burden of underlying liver disease within our population is growing quite significantly. This is just a graph of some work that I've done using
Jennifer Flemming: Data from Ontario where we identified individuals who had cirrhosis between 2000 and 2017
Jennifer Flemming: And we divided them based on when they were born because many chronic liver diseases are related to external environmental factors.
Jennifer Flemming: Such as viral hepatitis alcohol use, and non alcoholic fatty liver disease. So we wanted to see what the current impact of liver disease was an Ontario. And then what we can
Jennifer Flemming: Expect over the next 20 years and all I want you to take home from this graph is that the burden of liver disease in Ontario is growing. And if we look over the next 20 years it's not going to stop and therefore there's going to be an even bigger.
Jennifer Flemming: Need for access to liver transplantation, especially live donor transplantation.
Jennifer Flemming: It's also important to note that within the United States. There's been studies that have shown that
Jennifer Flemming: There are racial ethnic disparities that exist and access to liver transplantation, especially with respect to live donor transplantation.
Jennifer Flemming: But this hasn't yet been studied in Canada and it's unknown if this will also exist in a Canadian population where we have access universal access to health care.
Jennifer Flemming: And Ontario is actually a very good population in order to try and study this.
Jennifer Flemming: Because of the large immigrant population in Canada, and specifically in Ontario and Ontario approximately 20% of the population are immigrants.
Jennifer Flemming: To Canada or refugees and within our province 25% of Ontario is identify as a visible minority.
Jennifer Flemming: So for this project we hypothesize or suspect that patients with cirrhosis from immigrant ethnic or racial minority communities.
Jennifer Flemming: Are less likely than other Canadians to be referred for transplant to receive a transplant via living donor or receive an offer for a living donor liver
Jennifer Flemming: So there's two phases to this study Phase one is where we're going to describe the causes of cirrhosis in certain ethno racial minority.
Jennifer Flemming: Patient groups and look at changes in the disease burden in these groups over time.
Jennifer Flemming: We're also going to look at trends in the rates of liver transplantation and living donation within the same groups.
Jennifer Flemming: Once we get this information from phase one. This will inform phase two, where we're going to explore ethnic ethnicity, race immigration gender geography and socio economic factors in relation to the access of living donor transplantation.
Jennifer Flemming: I just wanted to share with you briefly some preliminary data so you can understand what we're trying to do. So what this graph shows is
Jennifer Flemming: We have identified all individuals with cirrhosis in Ontario, who were either immigrants or refugees over almost a 20 year period. You can see we had almost
Jennifer Flemming: Just over 27,000 individuals identified and then what we've done is we've broken it down as to where these individuals came from.
Jennifer Flemming: Before they immigrated to Canada, and we looked at the breakdown of their cause of liver disease and really what I want to show you as the take home point is the blue here are individuals from the Asia Pacific Area and these are the
Jennifer Flemming: Images immigrant groups which are responsible for the majority of chronic liver diseases that we're seeing in our
Jennifer Flemming: Community and Ontario. And just to remind everybody Asia specific is a very vast geographic
Jennifer Flemming: Location. There's East Asia, which includes China, Japan, Hong Kong South Asia, which includes India, Pakistan, Sri Lanka Southeast Asia, which is Cambodia, Thailand, the Philippines and the Middle East, Egypt, Iraq, Kuwait, Lebanon, etc.
Jennifer Flemming: So what we did is we looked at the different subgroups of patients within the Asia.
Jennifer Flemming: Pacific region and then looked at their underlying cause of liver disease.
Jennifer Flemming: And what this slide is supposed to do is just highlight that there is distinct differences based on your racial ethnic background.
Jennifer Flemming: Which will help us to try and target education and inform research policies into the future.
Jennifer Flemming: You can see that these pie graphs look different. If you're from East Asia, South Asia, Southeast Asia or the Middle East with different types of chronic liver diseases that are affecting these communities. And so this was going to help inform
Jennifer Flemming: What we do in phase two, where we're going to do surveys, focus groups and interviews with Members from the top three ethno racial communities that we've identified after we finished phase one.
Jennifer Flemming: And we're going to speak to both transplant candidates and recipients living donor candidates people
Jennifer Flemming: On the deceased donor registry family and caregivers and support persons of individuals of living donors and transplant recipients community members leaders and care providers.
Jennifer Flemming: And we're going to be collecting a lot of information from them to try and help inform the best approach to education as well as advocating for the use of living donation within these ethnic, racial minority groups. So that's all I have to say. And I'm going to now pass it on to Dr. Gill.
Jagbir Gill: Thanks very much, Jennifer.
Jagbir Gill: I'm just going to share my slides here quickly.
Jagbir Gill: And while I do that, I'll just introduce myself.
Jagbir Gill: My name is Jen Gil. I'm a transplant nephrologist in Vancouver, British Columbia, the medical director of the kidney transplant program at St. Paul's hospital there.
Jagbir Gill: And also an associate professor with the Department of Medicine at at UBC, and as part of that spend about half my time doing clinical research.
Jagbir Gill: What I'm going to talk to you about today is some of the work that we've done around living donation.
Jagbir Gill: And also set a bit of the stage of what the, what the situation is with with living kidney donation and it actually dovetails nicely with what you just heard from Dr Seldon or Dr. Fleming, in the sense that it is looking at barriers and access to living donation and kidney transplantation.
Jagbir Gill: So just to kind of give you a sense of the landscape. This is what can you donation in Canada looks like.
Jagbir Gill: In the dark line there. You've got the number just screwed numbers of living donors and the hash line, the total number of deceased donors or over the past decade or so.
Jagbir Gill: And as you can see deceased donation, certainly in the last five or six years has really started to increase and climb in the country, which is great and has been encouraging living donation, however, has been flagged.
Jagbir Gill: That's not necessarily a bad thing in the sense that it hasn't dropped and often in places where you see the CCE donation peek up and see living donations start to drop. And so it's reassuring that it hasn't
Jagbir Gill: Dropped but at the same time. That's concerning that it's a bit flat. And the reason for that is
Jagbir Gill: living donor kidney transplantation in most scenarios really is the preferred option.
Jagbir Gill: So, it typically avoids that need to have to be on a waitlist so you can defer that completely and you can provide quicker access to transplantation.
Jagbir Gill: The outcomes post transplantation or better. We know the outcomes and selected donors if appropriately selected or they are excellent it's safe process for for living. Can you donors.
Jagbir Gill: And all that fast access to transplant and less time on dialysis makes this the most economical form of
Jagbir Gill: Transplantation and renal replacement therapy that exists. And so, it offers many advantages. And so we really want that number to be growing non flattening
Jagbir Gill: If we look deeper at that you actually see that that line doesn't represent the whole picture and so
Jagbir Gill: If you look at the relative incidence of living kidney donation among different racialized groups, what you see is there's a significant difference so relative to Caucasian Canadians black South Asian East Asian
Jagbir Gill: And others as I'll show in the subsequent slide have a substantially reduced likelihood of being living donors and thereby getting living donor transplants as well.
Jagbir Gill: Probably one of the most acute examples of that isn't among our indigenous communities where you know this disfigured years basically looking at in Canada. This is an analysis that was in a few years ago now.
Jagbir Gill: And it's fairly simplistic, but it does give you a good glimpse of what you're looking at.
Jagbir Gill: Right in in this green dark green area here. That's the proportion of patients that are have a kidney transplant among everybody that has kidney disease.
Jagbir Gill: And you can see that among non Aboriginal it's that group is much larger, but when you look at the indigenous proportion. There it is much smaller. So access is an issue for transplantation in general.
Jagbir Gill: And when you go down and say, what type of transplant. Really it's living donor kidney transplantation is where we really see this the most acute.
Jagbir Gill: So there's been many studies where this has been described, and we often will talk about these things. But the question that we really need to move forward to as well. How to what's the next steps that we observe these issues, but how do you actually fix it.
Jagbir Gill: And philosophically, really. It's not an easy fix. You have to really remember in our day to day practice that we have to look
Jagbir Gill: Beyond the individual, we have to start to consider the social determinants of their health. So what do I mean by that. Well,
Jagbir Gill: You have to think, what is it a living conditions, what's their mental health, what's their access to care.
Jagbir Gill: What's their income level. What's their cultural situation. And so all that really is is kind of what we, you know, we'd like to think of as a holistic approach to understanding our patients better so that we can
Jagbir Gill: Help to address the needs, their needs a little more effectively.
Jagbir Gill: The other important thing we have to do, quite frankly, is acknowledge that there are in equities in in the healthcare system and that
Jagbir Gill: Our, our way of doing things may be contributing to that. So it's often an unpleasant thing for us to think about. Everyone's in this business to try to do the best we can.
Jagbir Gill: Having said that, we have to have the ability to critically evaluate our current models of care. Our current methods of delivery back here.
Jagbir Gill: And look at it from a cultural sense safety and cultural sensitivity perspective to make sure that we are in fact not contributing to some of these issues in a significant way.
Jagbir Gill: And so that leads me to this study that we've been meeting in British Columbia for about a year now. This is a study called the bridge to transplant initiative. It's a BC wide program for Indigenous communities to gain equitable access to kidney transplant.
Jagbir Gill: This has been a fantastic opportunity for me and for our program to really try to put some action into some of these observations that we've observed
Jagbir Gill: The overarching goal of this work is to aim towards equitable access to living donor kidney transplantation, irrespective of race, ethnicity, gender and socio economic status.
Jagbir Gill: And the folder there we've got our patient partners who have been leads in this one, the very get go. That's Elisa on my left, and probably yours. You're looking at Sam screen Elisa is one of our
Jagbir Gill: living donor kidney transplant recipients that's at who's her living kidney donor beside her, and they've been really instrumental in helping us make this work along
Jagbir Gill: The funding for this is through an interesting program. And so the Canadian Institute of Health Research has a series of graphs around strategies for patient oriented research and this was one such initiative that had kind of key.
Jagbir Gill: Targets that you'd have to meet for this. Now, in general, patient oriented research is important because it it does speak to what I was saying earlier, this notion of kind of trying to
Jagbir Gill: Anchor everything around the patient and their needs, not just on the end game. But actually, from the very beginning, in terms of
Jagbir Gill: Developing your question and how that works. And there are specific mandated requirements for these types of grants and so patients need to be involved.
Jagbir Gill: In all aspects of the research from the development of the question to implementation to interpretation.
Jagbir Gill: And that ensures that there's some relevance there. And in addition to patients, you need to include decision makers and clinician so that you're actually going to be able to integrate this into policy. Once you've shown your benefits.
Jagbir Gill: Interestingly, many of these from a CI HR perspective mandate that you actually demonstrate those partnerships with
Jagbir Gill: within government with your local and provincial government agencies to ensure there's relevance in applicability. And they do this by ensuring you get matching funds. So this project is one to one match.
Jagbir Gill: Not just for this EHR, but also from the partners that are relevant and it has to be multi disciplinary in its approach and you need actual outcome. So evaluation has to be a key part of this.
Jagbir Gill: So given that this is our team. These are a patient partners that I've introduced already. That's a group of researchers on the bottom.
Jagbir Gill: We've got a clinician engagement team that includes nephrologist transplant surgeon nephrologist family physicians
Jagbir Gill: And members from the First Nations health authority, who are family physicians or policymakers and payers are key organizations that provide the funding for transplantation and kidney care in our province and
Jagbir Gill: And our leaders and Indigenous health in the province. So the goals of this project are to improve access to living donor kidney transplantation for Indigenous patients.
Jagbir Gill: And the goal, as I suggested earlier, the way we hope to do this is by changing the way in which we currently deliver care and by doing so through an engagement process with patients and communities.
Jagbir Gill: Just to give you a sense of what the landscape in BC is like living kidney donation has always been something that has
Jagbir Gill: That we've been fortunate to be successful in. And so, you know, on the figure of the left looks shows you the rates of living kidney donation per million population in British Columbia.
Jagbir Gill: And that sound and color and then in blue, where the number six for for Canada. So the average rate in Canada is about $50 per million population in DC, we've typically hovered between 20
Jagbir Gill: To $25 per million population. So we've been fortunate in that living donation has been a part of the culture.
Jagbir Gill: The other important thing to appreciate is the way our healthcare is delivered and so
Jagbir Gill: All the programs are in Vancouver, the transplant programs, but we have a distributed model of care where you've got in partnership with bc transplant which funds all the transplant activity.
Jagbir Gill: And bc reno which funds all the kidney activity for dialysis and chronic kidney disease care, you've got this partnership that actually we've got regional clinics throughout the province for both pre for
Jagbir Gill: For chronic kidney disease, but also for post transplant care. So you've already got this good relationship set up with the general the quality community who are the referring population and we will take care of the patients after
Jagbir Gill: There's also been an initiative in play and BC. For the last couple years, called the transplant first initiative, which has been
Jagbir Gill: anchor it as it suggests at highlighting among people who are not yet on dialysis this notion of consider transplantation first before you start thinking about other forms of replacement therapy, such as dialysis and so
Jagbir Gill: It's been a change in the clinical pathway and now it's morphing to to include navigators in that role to make sure that transplantation is truly being evaluated before someone ends up on dialysis, as opposed to after
Jagbir Gill: The current state and not just in DC, but across the country for someone to become a living donor transplant.
Jagbir Gill: Recipient is to obviously the recipient has to go through the series of steps that line on the left here, where they need to get evaluated go through medical testing before they can finally be approved.
Jagbir Gill: And also that recipients also responsible for identifying a potential donor with
Jagbir Gill: To which they have to buy into. And then have that donor go through the same series of steps in that process can easily take on average to intend to 12 months by the time that that that is important.
Jagbir Gill: The other anticipated additional challenges for Indigenous patients in DC, and given that
Jagbir Gill: Is that the testing that's required for both donors and recipients is not widely available across the province. It requires multiple visits to different institutions and cultural safety.
Jagbir Gill: Is something that hasn't really been established and and formally evaluated in our programs. So in our in this study, and the first phase of this work was really engagement. And so we conducted a series of focus groups.
Jagbir Gill: With patients prior living kidney donors, as well as indigenous elders, where we talked to them about kidney disease about living donation about their experiences and how we could optimize those and also we have to align with our partners on the policy side.
Jagbir Gill: What stems from that was a series of core principles and these are aligned here in this slide basically
Jagbir Gill: Some of this is common sense and some of this will require some significant changes to the way we do things. So education and support for patients to help them find living donors to help them understand
Jagbir Gill: And among Indigenous patients in their communities is key. That has to happen early and that has to happen, broadly, not just with the patient themselves, but with the
Jagbir Gill: People around them in the community. They live it.
Jagbir Gill: We have to provide a support person to help patients navigate the pursuit of living donor kidney, who is not just knowledgeable about living donor transplantation, but also is familiar with.
Jagbir Gill: The indigenous community in which they're serving and they ideally are from that community.
Jagbir Gill: We need to provide education and support, not in our traditional buckets of come and get in, listen to a lecture in our hospitals but move it out of the hospitals into
Jagbir Gill: Into environments that are more culturally safe and in and presented in manners that are more culturally relevant
Jagbir Gill: We need to provide opportunities for patients and and and donors to share their personal stories.
Jagbir Gill: Need to minimize the travel that's required expedite the investigations that are required so that people in rural and remote communities aren't having to be disadvantaged.
Jagbir Gill: We need to ensure cultural safety is embedded from the entire process, not just the transplant physician, you're seeing, but the entire team.
Jagbir Gill: That is that you're going to touch in the whole kidney care sequence there. And lastly, we really need to come up with a tailored plan.
Jagbir Gill: For post donation to make sure that we are taking care of the health of individuals that have donated
Jagbir Gill: And so from that these key components have have emerged, which is essentially what I outlined in the previous slide, but basically broken into buckets of what we're doing and so
Jagbir Gill: Culturally tailored education, as I suggested a streamline workup cultural safety engagement with the community as well as
Jagbir Gill: With with with the individual network of the patients. And so from this. What we've now done is we've actually
Jagbir Gill: Starting into phase two, where we've developed a new clinical pathway and a series of recommendations with new educational tools.
Jagbir Gill: And and are now refining those with our partners to then implement these across the province and during that time will be measuring kind of unclear key outcomes of success.
Jagbir Gill: And importantly, by success, we're certainly looking at measures like are we getting more living donor referrals are we getting more living donor transplants, but we're also importantly
Jagbir Gill: More importantly, looking at the quality of care that's being provided and measuring that just cultural safety to be sure that we're addressing that aspect of it.
Jagbir Gill: So in summary, bridge really the cope with the studies like this is that we want to standardize the approach in which we
Jagbir Gill: Try to change the way that we facilitate transplant to address some of these inequities that exists, and we hope that this will be a model of patient oriented.
Jagbir Gill: Approach to really address these inequities, not just in kidney transplantation, but in others. I just want to finally thank Elisa at again. And then, of course, all of our partners that have contributed to this, including the CRP, thank you. Right.
Heather Badenoch: Thank you so much. Thank you jack. Thank you. NASA and Jennifer for for sharing your work.
Heather Badenoch: We are going to move to the questions and answers portion of this session. And as you may know, everyone here is invited to ask questions in the chat box.
Heather Badenoch: One introduce another member of our panel. Who's graciously joined us today. And that's silly Charbonneau
Heather Badenoch: And Sophie is a living kidney donor who has also participated in research. And so as we start the questions and answers.
Heather Badenoch: We're going to direct the first question to Sylvie, who's going to tell us a little bit about her experiences. And so, Sylvie
Heather Badenoch: Our first question for you, really is is what is the value that you see in engaging patients and and as you tell us about that. We're looking forward to learning about your journey. Okay.
Sylvie Charbonneau: Thank you, Heather Virgil too long. Hello everyone really happy to be here. I have to admit that I'm a bit intimidated by sitting on a panel with three doctors. I know some, some of our
Sylvie Charbonneau: Participants said the same thing, yesterday, so I don't feel alone here.
Sylvie Charbonneau: I
Sylvie Charbonneau: In preparing for that panel. I read a few articles and in those articles. It was saying that it's not easy to demonstrate the benefits of involving patients into research. If you look at proof of benefits. It's not easy to make.
Sylvie Charbonneau: So, you know, from a from that perspective, the value of having patients might be difficult to prove scientifically. However, I believe that there are really great advantages and having patience into research involved in research. The first thing I'd like to say is I believe that
Sylvie Charbonneau: There might be a difference between having
Sylvie Charbonneau: Trans people who are waiting for transplant.
Sylvie Charbonneau: Trends transplant recipients participating in research.
Sylvie Charbonneau: These people are going through rough times they have health issues. You know, usually we would like to help them to get better sooner. We want to focus on their needs on their
Sylvie Charbonneau: Issues. They. We want to make sure that they get a better quality of life. When we're talking about living donors. We're not sick. We don't have any health issues. And so in that sense, it might be seeing that our value and
Sylvie Charbonneau: research programs is not as big as those who are waiting for a transplant or had a transplant. But I have to admit that going through that journey.
Sylvie Charbonneau: We also have fears. We also have concerns.
Sylvie Charbonneau: We are going through a process. DR. GAIL presented, you know, a 10 to 12 month process. In my case, it was 12 months.
Sylvie Charbonneau: And in that period, there are so many questions arising in when you are closer to research, you are in a better position as a living donor to understand what's happening to you.
Sylvie Charbonneau: And I believe that when you are in a better position to understand what's happening to you. You also are in a better position to influence some aspect of research.
Sylvie Charbonneau: That might help recruit additional living donors. So, you know, in a way, I was recruited as living potential living donor.
Sylvie Charbonneau: When I was into the process of being in the pre screening. I was asked if I would be willing to go and take my blood pressure once a year for eight during a week.
Sylvie Charbonneau: To validate if the, the impact on the blood pressure of giving your kidney
Sylvie Charbonneau: And so to me, that was reassuring, because I would get my results myself from home. See if I had any impact on my blood pressure, but at the same time, it was reassuring to see that.
Sylvie Charbonneau: This might be a fear that potential living donors have and we were working on that to make sure that we have answers for them. So in conclusion, I think that there are
Sylvie Charbonneau: Over and above influencing some maybe some aspect of research. I think that one of the advantages of being part of research is that we become more aware of the process of what's happening. We become if we're more aware. I think we become better ambassadors and we might help others.
Sylvie Charbonneau: Being living donors. So I think that there are collateral advantages and one of them that I see is becoming a better investors.
Sylvie Charbonneau: In conclusion, I would have to say that I think that to keep living donors active in in a research process.
Sylvie Charbonneau: There has to be some key success factors we have to be to have clear roles and responsibility clear expectations of what we're asking from the patient, the patient feel most feel that she or he is adding value.
Sylvie Charbonneau: And that we have a voice.
Sylvie Charbonneau: So that's all I have to say either
Heather Badenoch: We really appreciate having the the donor perspective on the panel as someone who's also participated in research. It's really invaluable to hear from you.
Heather Badenoch: And I have a couple of questions also coming into the chat. And so let's move to some of those. There's a question here for Dr. Fleming. And the question is,
Heather Badenoch: You mentioned using the data to inform education programs do you mean educating potential transplant candidates or educating healthcare providers about racial or ethnic disparities.
Jennifer Flemming: Thank you for that question. And I think you kind of hit it on the head. I mean the the educational approaches multi prong. So I think there's different user groups that will benefit from education one first and foremost is patients themselves understanding
Jennifer Flemming: The disease that they have understanding what to expect, down the road, understanding the potential benefits of transplantation.
Jennifer Flemming: There's also an opportunity to provide education to other care providers, whether that be primary care physicians, nurse practitioners, social workers, everybody who's involved in the care of individuals with end stage.
Jennifer Flemming: Liver Disease. I think that the big, given that
Jennifer Flemming: Liver disease in general is becoming much more common. I typically see and I think probably Dr cells there as well as that.
Jennifer Flemming: A lot of primary care providers or non liver people have a lot of questions about liver disease and what to expect. And how do you get a transplant. And what's the process. And so I think
Jennifer Flemming: If we understand which communities are most affected not only patients, but their caregivers and also the other health care providers that are
Jennifer Flemming: Helping them through this journey that we could target specific educational activities to all of these different user groups. So by trying to understand which groups are most affected and by which types of diseases. We hope that we can kind of tailor that to benefit multiple different
People
Heather Badenoch: It's great. Thank you, Jennifer. We've got a couple of minutes left in the Q AMP. A and we've had some really good questions around the
Heather Badenoch: Emotional assessment or that the sake of Val to become a living donor. And so, not sure who on the panel wants to take this one, but I can see that Jake is also answering in the chat, which is super helpful but you know. So how do you test the emotional wellness to to be a donor.
Jagbir Gill: I can address that since I've been answering so
Jagbir Gill: So I think the. So, I mean, there's no question that there's a there's a significant nuance with living donation right you've, you've got quite a spectrum of individuals.
Jagbir Gill: Who are very committed to the notion of being a living kidney donor, irrespective of whether they're healthy enough to do so or not to the other extreme, where you have somebody who
Jagbir Gill: Would is very fearful of it and it's concerned about doing it. And so it's our responsibility as as the living donor programs to ensure that anybody who is donating their kidney for their liver firstly is healthy and well enough to do it. Second,
Jagbir Gill: And by that I don't just mean medically healthy but i mean is actually in their psychologically healthy at that point that this is not going to impact their well being in any fashion.
Jagbir Gill: And then also to make sure they're doing so of
Jagbir Gill: Their free will so that there's no coercion and so that means that we've had to embed multiple steps to kind of evaluate that. So there's a health questionnaire at the outset that asks, What's your motivation. Why are you doing this as part of this. What's your considerations.
Jagbir Gill: The whole process is very much donor driven so
Jagbir Gill: You're not getting phone calls from the donor program to say it's your time to do your blood work because you need to give people time and space to do it at their own pace that sometimes leads to some inefficiencies.
Jagbir Gill: But it's important to make sure that the prospective donors have their ability and then a social or psychological evaluation is routine as part as part of every not just donor, but also recipient evaluation.
Jagbir Gill: To make sure people really understand what they're doing and that they're they're comfortable and moving forward.
Heather Badenoch: Okay, thanks. Jake, we're gonna we're gonna nudge our session time just a little bit here because there's so many good questions coming in. And so I think I'm going to direct this one to nausea, if that's okay.
Heather Badenoch: But the question is if you significantly increase living donors will you have capacity to transplant.
Nazia Selzner: The answer is yes, we really make a space to transplant as much as possible. And just to give an example. For example, this month, we are doing 10 live donor liver transplant, just the month of October in in Toronto, or planning to do 10 so obviously if you have more
Nazia Selzner: Donors and more urgent cases that needs to be done. We can always create
Nazia Selzner: Space within the limits of possibility. But yes, we will do our best. That's
That's terrific.
Heather Badenoch: Thank you so much to our panelists from this morning. There are some other great questions in the chat. So if people want to keep the conversation going and answer those questions. That's amazing. We are going to take now a five minute break.
Heather Badenoch: So we encourage everyone to not disconnect from zoom and we will be back in five minutes to continue talking about living donation. Thanks everyone.
Heather Badenoch: Welcome back everyone. So some of you might be wondering how living donors, get involved in research and our next speaker may have the answer.
Heather Badenoch: Dr. Paula navs with the UN center for living donation. Welcome to the forum, could you please introduce yourself and tell us all about your great work.
Paula Neves: Hi everybody. Can you, can you hear me. And can you see me. I was having some problems with my internet connection earlier.
Heather Badenoch: You're good.
Paula Neves: Okay. Perfect. Alright, so I'm. My name is Paula. I am the lead for the Center for living organ donation and my PhD is in health policy management and evaluation from the University of Toronto. I'm very interested in
Paula Neves: The role of policy and systems and structures in improving the care experience and care outcomes. And that I think dovetails very nicely with the work of the center and the work of many of you.
Paula Neves: Who presented so I was invited to do a presentation on on living donors. There are many. There are a number of you on this call today who have
Paula Neves: specific expertise in this area. So during the Q AMP. A I invite you to join me in answering some of the questions.
Paula Neves: What I thought I would do is just start by telling you a little bit about the center. It was created by you H and transplanting
Paula Neves: And the mission is to improve access to living organ donation for people in need of life saving kidney and liver transplant.
Paula Neves: And for those who want to give a transformative gift of life.
Paula Neves: And we also recognize that it's not only donors and recipients and kidney and liver, but also entire communities that we need to influence. Because if we're going to be successful.
Paula Neves: If we're going to increase access to, to, to quality of care and increase access to transportation, we need to engage everyone. And so we try to do that as well in the work of the center
Paula Neves: You'll note here a picture of Brendan Cahill, and then Joanne Kearney they co founded the Center. They were instrumental in getting us started, they donated
Paula Neves: So Brendan donated through the period kidney exchange to ensure that his wife, I received the kidney. And so they're very, very interested in promoting living donation in sharing their story and in ensuring that we improve quality of care and follow up for for donors as well.
Paula Neves: So the center focuses our work in three areas in in improvements in care in promotion of research and we also
Paula Neves: Are really very interested in doing education. Education for patients and people exploring living donation at our center but more broadly beyond our center because we work with them with centers transplant centers across Canada and our work open to working with community organizations.
Paula Neves: And have been working with community organizations as well. So we are education today it has been primarily through our social media.
Paula Neves: And we also host events, both online and before covert IN PERSON TO ADDRESS VARIOUS TOPICS and living kidney and living livered donation.
Paula Neves: We have a regular webinar series that some of you may have presented at or attended in the past. Last year, we also had a very successful Symposium, where we brought together. Researchers living donors recipients community members to explore various aspects of living donation.
Paula Neves: And so this year and and part of that day was also a recognition event that occurred at UA Chen after the symposium, which really recognize the role of living donors enabled us to celebrate their contribution you see here some pictures from that event.
Paula Neves: This year we're a little bit challenged in terms of what we would do. And so we decided to
Paula Neves: Take it all online and we created living donation week which was which ran from September 14 to the 18th
Paula Neves: And you see here a picture of the CN Tower, which lit up on September 16 in honor of living donors and all of that content is archived on our YouTube channel.
Paula Neves: This event featured a lot of similar topics that have been explored in this event this CT CT tarp event. You see here the agenda for that week and we counted on or benefited from input from a number of you who helped to organize this event. So
Paula Neves: All of the sessions, as I said are online and we involve our patient partners.
Paula Neves: And members of the various teams that are that work with us in in the program.
Paula Neves: It's really important that we as researchers, and as transplant centers.
Paula Neves: Value, the role of patient partners and include them in all sports all aspects of the work at the center.
Paula Neves: Joanne Kearney sits on our governance committee. And then we also have a separate advisory committee composed of liver and kidney living donors and recipients that we meet with monthly to talk about the work of the center and to ensure that
Paula Neves: That this work is being directed and informed by their experience and their perspectives.
Paula Neves: And we think that that is
Paula Neves: Very consistent with the strategy for patient oriented research that's the HR published and these are some of the definitions that they use that we also use you'll note that we talked about patients a lot in, you know, work in transplant and
Paula Neves: Although it's an overarching term and CIA HR and talks about it and all of us talk about it that way, living donors, as it was, was noted earlier, our, our not sick, they come forward and and donate an Oregon and don't necessarily see themselves as patients and so that creates
Paula Neves: You know, sometimes a bit of a challenge for us in terms of reaching out to to living donors, particularly if we use the patient nomenclature and I would welcome some additional discussion about this.
Paula Neves: However, regardless of the nomenclature that we use meaningful inactive collaborate collaboration, including
Paula Neves: Having living donors and recipients independently and together, identify issues that matter to them and that have been under
Paula Neves: Misunderstood or and are not well understood is really important to guide our research. So, earlier you and
Paula Neves: Number of folks from these two projects are you know are on today's webinar.
Paula Neves: The center does not directly fund research, but we do support research projects, putting together, working with researchers to put together proposals, etc.
Paula Neves: And then collaborating in the implementation of those projects. And so there are a couple of projects on their way at the center. One is the access healthy project which you heard about earlier.
Paula Neves: And the other is the Action Project, which is focusing on improving access and equity and living donor kidney transplantation.
Paula Neves: And and so we think the theme of addressing barriers gaps and the needs of living organ donors and recipients and man caregivers from diverse communities is really important and will matter more and more
Paula Neves: As, as we move forward and want to extend access to living donation certainly emerging issues around traffic around trust in communities racialized communities marginalized communities experiences with in healthcare that are less than ideal, and in some cases deadly as we've heard recently.
Paula Neves: Is you know ends has an impact on on what we do as well. And so it's not only looking at addressing the issues, as we've traditionally done it, but we need to do it in a way that recognizes and builds trust works in partnership and and really
Paula Neves: Sees engagement as not only something that we do, but something that we need to do differently. And in some cases, part of that doing differently means sharing power changing what we what we thought we were going to do changing our approach somewhat
Paula Neves: Another thing that we do is we have a research series that
Paula Neves: You know, is is really unique to us. And these are some articles that have been published by the team. This is had this work was then before the center started but certainly we are you know I wanted to share it with you, simply because it is
Paula Neves: It is unique and in terms of living organ donation, we have
Paula Neves: A very large cohort of anonymous livered owners at UN UN and sick kids and the team at UA Chan has done a number of has published articles and so I just thought I'd highlight very quickly what some of those
Paula Neves: What some of those findings were just a reminder, this is the criteria for a living, liver donation at you. H. And it's very similar and other centers.
Paula Neves: And so these are some of the findings in terms of this anonymous donor cohort, we have a significant proportion that donates to pediatric recipients. You're a champion sick kids have a a unique partnership and so donors are assessed and
Paula Neves: You, ah, n and and the recipients and the operation takes place at that
Paula Neves: For recipients takes place. It's sick kids. And so this I think is resulting in in in more and more anonymous donors coming forward. The, the team is very experienced the outcomes for for liver surgery is are very good. And so that is important as we move forward.
Paula Neves: This work has also looked at the personality traits of donors and found that they are unique group they're conscientious that they're very agreeable. They're open minded, they tend to be secure or not really needing to rely on on others. A lot
Paula Neves: They have
Paula Neves: well articulated reasons for donating
Paula Neves: And and so they personalize
Paula Neves: They, they, they certainly
Paula Neves: It's important for us to understand these reasons, in order to build awareness and extend potentially our education efforts.
Paula Neves: These the impact of donation is profound both for the donors and for the recipients. And here you see some of the comments that donors made about the impact of their donation how it was, you know, in many cases, a
Paula Neves: Good experience of profound experience something that allowed them to learn more about relationships and the including the relationship with their body and also for parents of children who receive these
Paula Neves: These donations certainly also a feeling of of gratitude which for anonymous donors is important to know because unlike those who are directed and related to the owner in, in, in many cases, they have no relationship with and and not a lot of knowledge about what happens to their donation.
Paula Neves: These are some of the barriers and facilitators that have been identified with respect to donation and these are areas that we think is important to work on and so
Paula Neves: These are some of the things that we've identified as important to focus on as we move forward looking at a rehab at
Paula Neves: At follow up of donors and the importance of diet and physical activity in terms of outcomes, looking at moving at our projects into the community.
Paula Neves: Looking at following donors for life and ensuring that we understand their outcomes. Their and their experience exploring on ethics and certainly policies and practices, particularly around reimbursement of of expenses for example as
Paula Neves: An important issue. And so, yeah, that's it for me. And we have, I welcome your questions. This is the team. And this is how you can contact us.
Heather Badenoch: Thank you so much. Paula. The team is amazing at the UN center for living organ donation and
Heather Badenoch: For anyone who's ever been intimidated to read research, a lot of the articles that are the research that Paula mentioned is really
Heather Badenoch: Written really accessibly, and if you've ever wanted to read incredibly heartwarming research Samantha Anthony and her team, the one on
Heather Badenoch: The parent experiences, whose child received a non directed liver donor. You will need like a box of tissues for that one. It's
Heather Badenoch: It's pretty remarkable stuff. So we put the link to the center in the in the chat. And definitely, definitely check them out. Paula, we've got we've got a whole conversation going in the chat. Though I want to loop you in on because it's been really interesting and
Heather Badenoch: Different folks weighing in. And so, but can you tell us about, you know, is there a centralized living donor registry across Canada and and sort of. Where is that headed
Paula Neves: That's a good question. And we have and I welcome comments from others on the call. So, you know, the parrot exchange is is as closest as we have to to sort of a sharing across, across the country.
Paula Neves: We I know that there are efforts in the US. To do this, there might be others on the, you know, on the on this call, who may be able to address some of the discussions from my knowledge, there have been ideas raised, but it's early days yet. Yeah.
Heather Badenoch: That's great. Thanks so much. Paula and there are some different folks who have weighed in hands and and and in the chat so other welcome to tune in there as well. Thank you. Paula, that was an excellent presentation. Thanks so much. Yeah.
Paula Neves: You're welcome.
Heather Badenoch: We are next going to hear about Craig city's experience in research now Craig is a wears a couple of hats really looking forward to hearing from Craig. Craig is a living kidney donor.
Heather Badenoch: And now has a link to research. So there's this interesting path that you took in being a living donor and where you are now. So thank you for being with us.
Craig Settee: Yeah, be here.
Craig Settee: Pull up my
Craig Settee: Start Tanzanian buju Featherstone happened in charisma quantity damage to the CP
Craig Settee: So just like the start just by introducing myself. I like to. I like to share my
Craig Settee: My
Craig Settee: Finished. Now the name of my screen name as well. When I sometimes do presentations.
Craig Settee: So my name is Craig city and just introduce myself in Mission obey language my original name is still a nap. So some rays shining through the clouds none bear clan and
Craig Settee: My family comes from a few communities in Manitoba. I mentioned Ortega CP, which is this river creation, but my family. It also comes from mirror. First Nation and a couple of other communities around like when it came to my Toba
Craig Settee: But I currently reside in Vancouver on co Salish territory.
Craig Settee: unseated unseated traditional territory of my screen Saber Tooth information so
Heather Badenoch: Anything a little trouble hearing you. Could you speak a
Little
Craig Settee: Thanks so much. No problem.
Craig Settee: Able to hear me better now. I'm picking up
Heather Badenoch: Thank you so much.
Craig Settee: Okay, great.
Craig Settee: Yeah, so that's just a little bit. I guess about who I am, where I come from.
Craig Settee: And
Craig Settee: So as I mentioned, I'm a living kidney donor. So maybe I'll just share a little bit of history of how and why I became a kidney donor.
Craig Settee: So my, my brother Kevin was diagnosed with kidney disease at a young age musical 910 years old and procrit progressed to kidney failure. By the time he was
Craig Settee: About 1819 years old. And so during that time in his late teens, you know, we had reached out to some family and friends about going to get tested for
Craig Settee: For potential matches for kidney donor. And so, obviously, the first step is has been presented in a couple of previous discussions here is
Craig Settee: The blood match, so it ended up being that one of our uncles and myself were the best blood magic tissue match for that. And so my family also had a couple of other health issues at the time. And so we asked my uncle to go through with this testing.
Craig Settee: Initially, but down the line, kind of became evident that it wouldn't work out. So that's when I was next to step up and go through the rest of the testing phase. So,
Craig Settee: You know, seeing my brother having to, you know, go through chronic kidney disease and slowly see his, his kidneys fail throughout his
Craig Settee: You know his adolescence and his teen years. It was really a difficult thing to to to witness and see as a, you know, as a big brother.
Craig Settee: And wanting to, you know, take care of older brother and you know see him live a long healthy life seeing and go to peritoneal dialysis as well, you know, and some of the restrictions that come with there and not being able to travel as much
Craig Settee: And so, that whole experience of applying to our that is really the foundation of why I wanted
Craig Settee: To donate to my brother, and one of the one of the experiences that sticks out to me through the process was
Craig Settee: The psychological testing, too. So, you know, going into the talk to the psychiatrist and then to ask us ask questions about
Craig Settee: You know why I want to be a donor. And specifically, one of them was about asking if I was being financially compensated for
Craig Settee: For being a donor and it was simply no simple answers and you know I want to see my brother lives and not have to be connected to a machine for dialysis. So, you know, it was pretty, pretty simple answer and pretty simple solution in my mind to become a donor to my brother.
Craig Settee: So that's kind of a bit of the history of us. So this picture on the, on the one side is us. We'll post transplant and we were lucky enough to be in the same same room right after the transplant on
Craig Settee: On the day and it's actually perfect timing today because today is actually the eight year kidney anniversary for for my brother Kevin and I
Craig Settee: And then here's here's us just a couple of years ago together traveling and that's kind of the outcome of of having a kidney transplant and being able to also travel together.
Craig Settee: So involvement in research as a kidney donor so pretty, pretty shortly after donating. I was also contacted about a study. So the living kidney donor study that was
Craig Settee: A five year long study and I think that continued that study. So I'm still currently involved in that.
Craig Settee: involves, you know, during a questionnaire and also doing blood pressure.
Craig Settee: Checks annually for a week and then also just a requisition form to go and have some work done to check some of my levels.
Craig Settee: Get men and some of the other pieces there. So that was my initial involvement as a kidney donor into some of the research work.
Craig Settee: And so that's been ongoing. That was the basic. The first step of that and so
Craig Settee: Since then I've been involved with a kidney research network called pencil see Katie can solve see Katie stands for Canadian seeking solutions and innovations to overcome chronic kidney disease network and the workplace that we can solve chronic kidney disease and so
Craig Settee: I got involved there as that patient partner as well. So my mom and my brother were initially involved in
Craig Settee: Cancel them. It was part of their suggestion to have more kitty donors. And so that's where I kind of came into the picture with cancelled.
Craig Settee: So, you know, I sat in on a couple of the projects that were involved in in cancelled or 18 projects overall. And so there was a couple that really stuck out in my mind. So I got involved in those as a patient part to just come to meetings and provide some insights as a as a donor.
Craig Settee: So that's kind of been over the past couple probably three or four years that I've been involved as patient partner. But during that time.
Craig Settee: I've also been able to transition into a new role within cancelled and so
Craig Settee: There was an opportunity for the position as a coordinator with the indigenous people's engagement Research Council and so I have also applied for that and was
Craig Settee: Successful and security in that position. And so now I am a coordinator for what we call iPad and business people compete with each console. And so that's kind of been part of my journey along
Craig Settee: along the pathway of being a kidney donor. And then how that transition into into the work and so
Craig Settee: You know, providing my insights as a patient Parker and now also being on the core team is kind of having, you know, a couple of hats aware that the work that I do. And so in that role support.
Craig Settee: The work division and mandate of iPad, which is obviously to amp amplify indigenous voices and ensure that, you know, our experiences voices and
Craig Settee: priorities are being incorporated into into the work of cancel specially and that you know many of the Members who are part of iconic are also involved in a number of other organizations and work and research. And so that's that's part of
Craig Settee: Our own community, as I click as well. And so I see that it's
Craig Settee: A passion of mine as well that
Craig Settee: You know the passion to see wanting to see my better than
Craig Settee: A long healthy life and to be able to have some freedom.
Craig Settee: From from
Craig Settee: From chronic kidney disease is is
Craig Settee: Is what I was also passed on to, you know, the community of
Craig Settee: Can solve and some of the other people involved. And so that's the iPad part until that one picture here on the right is where we had a
Craig Settee: Gathering there to do some some work. Some work plan work envisioning some of the roles of I put that we want to see in a network and this other picture here is also a part of a learning pathway that's been developed with members of Piper and so that's part of Kansas, as well as
Craig Settee: A number of learning markers that help to
Craig Settee: Provide better cultural competence cultural safety within research. And so there's that work until this picture here is actually us having a ceremony with one of the knowledge seekers that we work with.
Craig Settee: Dan Thomas and he was there to help us provide an identity and name for the learning pathway, which is called published a big challenge. And that means white horse and part of it is part of that goal is to address.
Craig Settee: Address racism.
Craig Settee: Well that's, you know, that's a bit of that work that I'm able to support and happy to participate in and
Craig Settee: It's really been an incredible journey to be a part of and to, you know, meet a lot of other people who've been donors who have family members who
Craig Settee: Oversee KD caregivers, as well as a number of researchers and doctors and stuff. So it's really been a whirlwind experience to to get involved.
Craig Settee: As a patient partner and see where this journey has led me. So I think that's, that's some of the points that I wanted to share about
Craig Settee: My piece and how I guess being a donor becoming a patient partners and how that's transitioned into, you know, a large focus of my life to date so that I'll just say
Craig Settee: A glitch.
Craig Settee: Hello. Thank you. And if anybody had any questions, I'd be happy.
Craig Settee: To share
Heather Badenoch: We do have questions. So don't don't go anywhere. And thank you so much. Craig for for taking your
Heather Badenoch: Your generosity and your passion as a donor and then channeling that into a career choice and addressing what so badly needs to be addressed around
Heather Badenoch: Racism in the system and barriers and safety. And so many of the issues that are being faced. It's really, it's critically important, and it's it's like saving work what you're doing.
Heather Badenoch: We have a number of questions in the chat and based on just some time, I'm going to, we're going to choose one here, but they're good questions to tune into after if you have a chance. And so one of the good questions here is when you do day to day as a research coordinator
Craig Settee: Well I don't be a research coordinator, but
Craig Settee: So, day to day for my role as the iPad coordinator is
Craig Settee: Is really to
Craig Settee: Help check in on some of the people who are involved, especially patient partner voices and
Craig Settee: Within the network right now. And so, just as an example where we're just kind of doing some some sustainability planning and so part of my role there was is to
Craig Settee: You know, ensure that all the patient patient partners involved an iPad are having their voices heard at the table and so that any priorities that patients from I predict
Craig Settee: That we had addressed that we're able to bring those points up into scalability planning ensure that indigenous issues and business priorities that
Craig Settee: We feel, you know, not to be addressed or included in the next iteration of the research program, then that's, that's something that, you know, I helped to support and in addition to that,
Craig Settee: A large part of my time lately has been working on the learning pathway words the rubbish DVD. The Eagles fans and so one one part of that one component of that learning pathway.
Craig Settee: Is a knowledge capers and research virtual book that that we're creating and so part of my day to day work and been involved in in coordinating some of those efforts and ensuring that
Craig Settee: We have knowledge keepers involved in the work that we're doing because they are such a huge part of our community as indigenous peoples as well. And so, you know, they support. A lot of us spiritually and emotionally and physically and in ways outside of
Craig Settee: Just, you know, the healthcare system, but they're there to take care of that other side of us as well. And some of that traditional medicine piece that goes along with with Karen. So, you know, trying to
Craig Settee: Kind of coordinate some of those discussions on how to engage knowledge keepers and researchers. Part of what I've been working on recently with with this role as a coordinator
Heather Badenoch: Thank you, Craig. Thank you for everything that you're doing. Yeah, thanks so much for being part of this. Yeah.
Craig Settee: Yeah, happy to
Yeah.
Heather Badenoch: So moving on to our final panel. Here's our next topic racial and sex base disparities in transplantation and living organ donation. So we are joined by Dr. Mama. But Dr. Rahul Mayra Dr. Warren fingers and Mary bocage
Heather Badenoch: And we're going to kick off the
Heather Badenoch: Panel with Dr Mishra over to you.
Rahul Mainra: Thank you, Heather.
Rahul Mainra: And please let me know if you can hear me. I was just start sharing my
Rahul Mainra: Screen, hopefully this works.
Rahul Mainra: Easily. I haven't done it on
Rahul Mainra: Zoom before
Rahul Mainra: And just to follow up on
Rahul Mainra: Some of the discussion about the registration portal.
Rahul Mainra: Sorry, I'm just having some issues with sharing. That's all right. CBS is is working on a national living donation registration portal.
Rahul Mainra: Where people can go to a website and basically provide their intentions on perhaps being a living donor and that information would then be sent to your local program and then they would follow up with you.
Rahul Mainra: So that is coming. Can you see my screen because I'm not sure if this is working.
Heather Badenoch: So we can looks good.
Rahul Mainra: Okay. Excellent. All right. Yeah. And I'm absolutely humbled by all the talks today, especially from our donor champions.
Rahul Mainra: I can truly say that, you know, listening to you guys really makes my work worthwhile in the space that I that I work. So I want to thank you for your bravery, your courage and for making
Rahul Mainra: What I do on a day to day basis worth it. So that was really fascinating to hear and I look forward to the rest of today's talks.
Rahul Mainra: So my name is Rahul main road. Thank you for having me here. And thank you for allowing me to present this really important piece of work.
Rahul Mainra: I'm a transplant nephrologist at St. Paul's hospital in Saskatoon, Saskatchewan. I also wanted to sort of give a shout out to the CDT RP team behind the scenes. I know there's a lot of work that
Rahul Mainra: That goes on in any conference, let alone a virtual conference and they've been doing an amazing job of keeping things running very smoothly. So
Rahul Mainra: Hopefully that worked. So if we were in a large group, face to face, I would sort of ask you to to look around the room and and have a look at the diversity around you.
Rahul Mainra: And I would imagine that what you would see would be sort of the first indication of racial disparity because I suspect it would look a little bit differently.
Rahul Mainra: A little bit different than this pie chart that you're looking at here. This is Stats Canada data from the last census profile in 2016 as you as you can see about
Rahul Mainra: Three quarters of Canadians identified themselves as from European background. The next largest group being that from either South Asia, Southeast Asia East Asia Middle East Asia and also you can see in this pie chart that the First Nations Population make about 5%
Rahul Mainra: Of our Canadian population.
Rahul Mainra: And
Rahul Mainra: The, the next disparity. I'd like to highlight is experienced by all racialized Canadians.
Rahul Mainra: And just to follow along. Some of these pictures. So firstly, if you look at the people that live in poverty. If you are a racialized Canadians, you're more likely to be living in poverty within Canada.
Rahul Mainra: Almost 21% of racialized Canadians do live in poverty compared to 12% of those that are non racialized and even more alarming is if you look at
Rahul Mainra: First Nations people that live on reserves and this is just a picture of Saskatchewan, but over 80% almost 80% of First Nations people that live on reserve live in poverty.
Rahul Mainra: Of living in poverty has obviously significant impacts on many aspects of
Rahul Mainra: Of their lives. But firstly, if you look at just the health outcomes of living in poverty and the chance of you have a man living in poverty.
Rahul Mainra: Live being alive at the age of 75 only half of people that are poor will actually be alive at the age of 75 compared to 75% of people of men that are wealthy would be alive at the age of 75 and once again we see significant disparities.
Rahul Mainra: And consequences in our First Nations Population who have the, the worst outcomes when when you come when you look at overall health outcomes.
Rahul Mainra: So a little bit more focus to to the talk today into the to the discussion around renal disease.
Rahul Mainra: And some of the disparities around renal disease. So if you look at just the number of patients who are starting dialysis.
Rahul Mainra: And looking at some of those the ethnic groups and this is Dr. Gill had presented some of this data already today but
Rahul Mainra: For everyone for everyone non Aboriginal patient who's on dialysis. There are approximately four
Rahul Mainra: Aboriginal patient so significantly higher burden of disease in our First Nations Population when it comes to end stage kidney disease.
Rahul Mainra: And furthermore, looking at their five year survival. It is significantly lower than non Aboriginal patients and you've seen this graph already today, but this is looking at the number of transplants that
Rahul Mainra: First Nations people have in Canada compared to those that are non Aboriginal and there's a significantly lower number of Aboriginal patients.
Rahul Mainra: 27% of them with a with a kidney transplant compared to 42% of non Aboriginal patients, despite the fewer number of transplants. If you look at the graph survival between Aboriginal non Aboriginal it's it's very similar.
Rahul Mainra: If you look at other racial groups and what their incidents or prevalence is with for end stage kidney disease. Once again, you see similar numbers. So almost two times
Rahul Mainra: The number of patients on dialysis or patients with end stage kidney disease are from Asian East Asia, South Asia, Latin America or the Subsaharan African countries.
Rahul Mainra: And this is this is Ontario data, looking at more Canadian data and this is focused more towards the transplantation, once again, if you are from the East Asian or Asian backgrounds. You're a third
Rahul Mainra: You have a third less chance of having a kidney transplant and that disparity is driven really strongly by the number of living donor transplants.
Rahul Mainra: In that ethnic group where the numbers are significantly lower once again, similar to the graph survival of Aboriginal patients with a transplant, looking at the looking at this ethnic group the graph survival when compared to white Canadians was very similar
Rahul Mainra: So we know that living donor kidney transplantation is the treatment of choice for patients with end stage kidney disease.
Rahul Mainra: And even more so if you look at preemptive kidney transplantation is much more preferred and leads to the best patient outcomes. So how can we get there, how can we ensure that all
Rahul Mainra: All patients with end stage kidney disease, regardless of their race have equal access to living donor kidney transplant and you've heard some of this.
Rahul Mainra: Today, already, but these are some of the other ideas that have been presented sort of at a national recommendation from the US.
Rahul Mainra: So firstly, is to remove financial barriers, we know that there's a strong association between income and living donation.
Rahul Mainra: In that if you are in a low income category, you're much less likely to have a living donor kidney transplant and you're much less likely
Rahul Mainra: To proceed to living donation. So let's remove that financial barrier that that many donors face, and I'm sure many people on the call. And today in the audience would be able to share their stories around that. So let's try to ensure that we have financial neutrality for all living donors.
Rahul Mainra: To help remove this that remove this barrier.
Rahul Mainra: An educational program that is culturally sensitive that's respectful of religious groups would be helpful. And you've heard about some of the work that's happening within Canada.
Rahul Mainra: To develop that to develop that program having transplant or donor ambassadors that are present within the CPD clinics that are there to help patients with end stage kidney disease navigate the system.
Rahul Mainra: Is also another technique that has been used across Canada and has been shown to be very beneficial to help improve that improve that that pathway for our patients. And of course, researching
Rahul Mainra: Further researching this space, trying to identify further barriers, trying to put in place other solutions to try to remove some of these disparities would be absolutely beneficial.
Rahul Mainra: And I think it would be remiss if we didn't talk about the elephant in the room, and that's the implicit bias. And I think we all as healthcare providers and as a physician. This is something that we all need to ensure that we have
Rahul Mainra: We have internally and personally reflected on and I think this needs to happen very early on in our training and I'm happy to say that many medical schools are now recognizing this and and initiating
Rahul Mainra: A recognition, a discussion about bias and how bias will can and has the possibility of impacting how we manage patients and how how our actions are
Rahul Mainra: What our actions are so here at the University of Saskatchewan. We have an indigenous curriculum specialist
Rahul Mainra: That's been within our curriculum for the last couple of years, we have a division of social accountability that overlooks oversees the entire curriculum that we teach our learners and ensures that there's
Rahul Mainra: Appropriate cultural sensitivity to what we teach our indigenous specialist ensures that we think about this implicit bias early on and reflect on it and try to
Rahul Mainra: Personally deal with that before it becomes ingrained in some of our, our actions to our patients.
Rahul Mainra: So lastly I'd like to highlight some of the Canadian researchers in in this space across
Rahul Mainra: And some of them, you've heard from today. So, and I apologize. My talk today is been very kidney centric being a transplant nephrologist you'll hear a little bit more about the liver world. But Dr get Dr. Gill Dr musky doctor needs.
Rahul Mainra: Are all working on the actual project, which you've heard about, which is looking at identifying barriers to living donation in in in ethnic groups Dr muskie is we're also working at developing a cultural culturally sensitive
Rahul Mainra: educational program for patients. You've heard about Dr gills project with the bridge program trying to develop a new clinical pathway for
Rahul Mainra: Indigenous patients who have kidney disease in in helping them access living donor transplantation and you've also heard about living liver donation from Dr cells there and Dr. Fleming. So with that, I will end, and I will pass the podium, the virtual podium over to Dr. Monica. Thank you.
Rahul Mainra: Okay, I think I've stopped sharing my screen. Hopefully that Hey, great works for you.
Mamatha Bhat: Yes, it does. Let me try sharing my screen now.
Mamatha Bhat: Can you see it now.
Mamatha Bhat: Are we good
Mamatha Bhat: We can see it. Okay, perfect.
Mamatha Bhat: And I've just started my presentation. Okay, so. Hi, everyone. Good afternoon. It's really a pleasure to be here with you. And in this virtual forum. Can you hear me well.
Warren Fingrut: You're in presenter mode, what you can do is at the very top, there's a display settings icon and left your
Warren Fingrut: Yes, you can switch it to the exactly
Mamatha Bhat: Duplicate sideshow slide.
Warren Fingrut: You can. There you go.
Mamatha Bhat: Okay, perfect, perfect. Okay. Okay. Yeah. Okay. I'd like to thank you for the opportunity thank the organizers for the opportunity to present to all of you today. It's really a pleasure and honor to be presenting at this forum.
Mamatha Bhat: So, this you know this, this represents work that my research group has done in this space. So looking at sex disparities and liver transplantation and how living donation really helps and rectifying those sex disparities on the waiting list for liver transplantation.
Mamatha Bhat: So I have no disclosures relevant to this presentation.
Mamatha Bhat: In terms of Oregon allocation. So in the liver transplant setting, we use
Mamatha Bhat: A specific scoring system called the melt sodium and this consists of four blood tests the iron or the bilirubin created and sodium
Mamatha Bhat: And this particular score represents a formula comprising these four blood tests and it's used for prioritization on the waiting list. So basically, it reflects the degree of liver disease severity that an individual has and
Mamatha Bhat: Oregon allocation separately. So you talk about prioritization, but then separately organ allocation is dependent on the meld sodium score.
Mamatha Bhat: But additionally the blood group and donor recipient matching in terms of the liver volume. Additionally there exception points that are given for specific indications, including liver cancer that develops in the setting of chronic liver disease. The Mel sodium system was implemented.
Mamatha Bhat: In the US around 15 years ago, actually. But then our system, our Canadian system was switched over to the melt sodium based system.
Mamatha Bhat: At least in Ontario. It was switched in November 2012 and so we know that subsequent to implementation of this particular scoring system.
Mamatha Bhat: There's been a significant decrease in weightless mortality overall by prioritizing the sickest patients awaiting liver transplantation.
Mamatha Bhat: However, we also know based on recent research that certain patient demographics are not as well served by this particular scoring system.
Mamatha Bhat: And there's been more and more data demonstrating that women particularly are underserved by the smell. Sodium score PSC so primary school sinkhole and Giantess
Mamatha Bhat: And then there were certain aspects of a person's physical condition, including frailty and circle pedia
Mamatha Bhat: That are contributing to their actual mortality on the waiting list. So in fact, it's been estimated that one would need to add nine points to the melt sodium for significant frailty for mild to moderate frailty in order to really represent the degree of liver disease severity and illness.
Mamatha Bhat: And so if you look at the waiting list for liver transplantation.
Mamatha Bhat: In Ontario, we know that the mortality and dropout rate together is around 25% and so the supply of Oregon's is unfortunately insufficient for the surging demand.
Mamatha Bhat: And in recent years, we've, we've seen a steady increase in fatty liver disease as an invocation for transplant, along with alcoholic liver disease and hepatitis C is decreasing.
Mamatha Bhat: Additionally, we see that liver cancer is increasing as an indication. So there are a number of patients who are waiting and unfortunately not making it to transplant.
Mamatha Bhat: Now if we look at women. Specifically, it's been seen that women are 10% more likely to get the listed delisted women are more frail so taken off the waitlist
Mamatha Bhat: When they become more frail and too ill for transplant. And so there's a progressive decline on the list, while they wait and wait for an Oregon to become available.
Mamatha Bhat: If we look at weightless outcomes and women. So there was a recent study published in JAMA surgery that demonstrated that women were 8.6%
Mamatha Bhat: More likely to pass away on the waiting list and we're 14.4% less likely to receive a transplant compared with men. Men, and this was after having adjusted for various
Mamatha Bhat: Parameters, including their geographic location as well as anthropometric and liver measurements. So there were certain adjustments made to perform this analysis.
Mamatha Bhat: And so finally, the end conclusion was that really this disparity is a complex problem in need of complex tools because there have been various attempts to really rectify
Mamatha Bhat: And try to rectify this issue of disparity sex disparity using different types of bio statistical modeling. But even when you adjust for certain parameters which I'll show you there isn't.
Mamatha Bhat: This ability to rectify that disparity. So one issue is that women tend to be smaller in stature and so there's a higher likelihood of declining and offer due to small stature, women have lesser muscle mass. And so the creatine, which is one of those parameters in the mail sodium score.
Mamatha Bhat: Doesn't accurately well reflect women's actual Severity of illness. So in fact, they will have a lower creating and
Mamatha Bhat: Then actually represents their degree of illness as compared to men and then additionally, there are more male deceased donor Oregon's available. This has been reported in the literature so
Mamatha Bhat: Now, because of this literature. I was particularly interested in examining whether we as a program
Mamatha Bhat: Were able to serve our patients better by virtue of having living donation available living donor liver transplantation available.
Mamatha Bhat: So this is not universally available there only select programs that perform living donor liver transplantation.
Mamatha Bhat: And so I was very interested in looking at whether by virtue of having this option available.
Mamatha Bhat: Whether this was a benefit to patients on the waitlist and we know that living donor liver transplantation. You've heard earlier already
Mamatha Bhat: During the symposium that living donor liver transplantation really offers
Mamatha Bhat: This benefit in terms of minimal waiting time there's decreased risk of dropout, and death on the waiting list. There's a faster return to good health and good quality of life and better long term outcomes.
Mamatha Bhat: By virtue of having also a better quality Oregon, but also being in better health at the time of transplant. And so this is an image representing how
Mamatha Bhat: This, this is feasible living donor liver transplantation and so we know that living donor liver transplantation is of benefit to all patients on the waiting list. Certainly.
Mamatha Bhat: And I was interested in seeing whether particularly having this available was especially beneficial to rectifying the sex based disparity on the waiting list. And so we examine this in our program.
Mamatha Bhat: We looked at
Mamatha Bhat: Those patients who did not have access to a living donor, as opposed to those who had access to a living donor comparing women versus men.
Mamatha Bhat: And certainly what we found was, there was a disparity in terms of access to transplant overall for women. If they only had a deceased donor Oregon available. Sorry if they did not have a potential living donor available, but if they did, then this waiting list disparity sex space disparity.
Mamatha Bhat: Was rectify a bill and so they had equal access to transplant overall by virtue of having living donation available.
Mamatha Bhat: And so overall clearly living donor liver transplantation has beneficial to both men and women.
Mamatha Bhat: But by virtue of having living donation available in our program, we were able to really rectify this. And so what we can see is that there's an even greater benefit to women having access to living donation. So there's a magnitude of benefit that you can see here that is
Mamatha Bhat: 1.38 times higher as compared to men by having living donation available.
Mamatha Bhat: So overall, in summary what our study has shown is that clearly living donation is beneficial to all recipients, regardless of sex.
Mamatha Bhat: However, what we particularly show which is, I think, very interesting and
Mamatha Bhat: You know, beneficial to our patients is that we can rectify the sex base disparity by virtue of having living donation available living donor liver transplantation available.
Mamatha Bhat: And so that concludes my presentation. I'd like to acknowledge living donor, sorry, the Center for living donation and the living donor program at our institution as well as darker Alina Allen, who had provided one of the slides here.
Mamatha Bhat: And I'll pass on to dr fingers up this time, I believe.
Mamatha Bhat: So thank you very much for for your attention and I'm happy to answer questions during our panel.
Warren Fingrut: Wonderful. Let me just figure out the screen sharing as well on my end.
Warren Fingrut: Is everyone able to see my slides. All right.
Warren Fingrut: Now it's a pleasure to be here and thank you again to the organizers for having me. My name is Warren fingertips and
Warren Fingrut: I'm director of stem cell club, which I'll tell you about in a moment. So donor recruitment organization we recruit stem cells owners from across Canada.
Warren Fingrut: And I also recently completed training as a hematologist University of British Columbia registered as an traumas and position there as well.
Warren Fingrut: That I'd like to tell you about our work with stem cell club addressing racial ethnic disparities and access to stem cell transplantation or bone marrow transplantation.
Warren Fingrut: So I'll start with some background material. Who needs a stem cell transplant and so patients with a variety of blood diseases autoimmune and metabolic diseases need a stem cell or bone marrow transplant to get better.
Warren Fingrut: These patients often can't find a match in their families and rely on unrelated donors to save their lives and
Warren Fingrut: Many patients, you know, even they can't find a match and their family. Many patients can't even find another match on related donor and use an example of one patient who shared her story with us, Dorothy.
Warren Fingrut: Was a strip leukemia and needed a stem cell transplant and she couldn't find a match on a little donor anywhere in the world.
Warren Fingrut: Now we know that non Caucasians facing uphill battle finding a matching donor for stem cell transplant. We know that people are more likely to find a match from within their own genetic or ethnic background or ancestry.
Warren Fingrut: And the way that you can see this data from this graph. It's a lot of data, but I'll orient you to it.
Warren Fingrut: You can see on the bottom, all the different ethnic groups, the left most line is white European ancestry. And then there's a whole bunch of different ancestries that are on the, on the, on the bottom there, and each line the different ancestry.
Warren Fingrut: And and the blue color is the, the better matches. Right. And so any other colors in the line or
Warren Fingrut: Not so good for the patients. And so you can see that in the white European ancestry group on the left, there's a lot of blue. It's not perfect. Not everyone has a match, even within that group.
Warren Fingrut: And if you look at all the other groups and it's so much worse, gosh, there's a lot more red, orange and purple and the other
Warren Fingrut: Lines, you know, and so that's true across the board for that increase, but it's especially true and people of African heritage people of Southeast Asia and Indigenous heritage, etc.
Warren Fingrut: And these patients really struggle to find a match, they need
Warren Fingrut: Part of this reason that part of the reason why there's such a discrepancy in the match rates because non Caucasian people are under represented as donors and that's true in Canada. This is Canadian data and you can see on the left of the pie chart.
Warren Fingrut: The Big Red is is Caucasian people that are registered as donors.
Warren Fingrut: And so that's the majority of donors in Canada that are registered as donors are Caucasian, I realized that the Caucasians make up the majority of people in Canada. But, you know, the same data is true, you know, across the board.
Warren Fingrut: In countries around the world and and people who are not Caucasian or not well represented as donors even, even in Canada. But also, around, around the world.
Warren Fingrut: And so stem cell clubs, a nonprofit organization that I started back in 2011
Warren Fingrut: We work to improve the quality of membership on Canada's donor registry that we were to recruit those needed stem cell donors from a variety of ethnic groups.
Warren Fingrut: We've got chapters at campuses across Canada and 27 locations and we run our drives to recruit people as donors and today we've recruited over 20,000 Canadians system. So the owners over half of which are not Caucasian
Warren Fingrut: And so we recruit donors that generally at stem cell drives, which are either in person and these have been suspended due to the pandemic.
Warren Fingrut: Or online. And so you can see some photos of some of the donors, we've signed up willing
Warren Fingrut: To share their donation experiences with us and some of the drives and how they might look, you know, holding signs, getting people to sign up. But as I said in the recent times, it depends on if we shifted to sign up people online.
Warren Fingrut: And if people are asked to go and donate and I include the slide for background because I'm not sure how
Warren Fingrut: People are aware, the majority of the time stem cells are collected in a process. It's a lot like blood donation. So it's very reasonable. You know, for the donor in terms of their experience and and and i think a lot of people have a lot of misconceptions about
Warren Fingrut: How intense or, you know, this a lot of misconceptions about that majority of the time it's a lot like blood donation at the diagram on the left, occasionally bone marrow is collected from the, from the pelvic bone in the head under anesthetic less than 10% of the time.
Warren Fingrut: And so the challenge that we faced in donor recruitment is how do you get those ethnically diverse males.
Warren Fingrut: You know, how do you get them to sign up those donors. And so, you know, with stem cell club, we've got a number of strategies that have really done great great work to help us with that challenge.
Warren Fingrut: We built a community in stem cell donor recruitment. So we launched a Facebook group we have regular team meetings where the chapters across Canada and others and donor recruitment.
Warren Fingrut: On you know the donor registry staff patients and donors and family members they participate and share ideas and we've got subcommittees that work on projects.
Warren Fingrut: And everyone who's interested in stem cell donor recruitment as welcome and I include the link there to our Facebook group which you have to request to join. Just to keep it to people who are you know passionate about donation and keep it keep us keep us on track.
Warren Fingrut: And some of the outcomes. Some of the deliverables that we've had from this community. So we developed this beautiful city series of whiteboard videos.
Warren Fingrut: Where the narrator is narrating and there's an artist that strong and real time to illustrate
Warren Fingrut: answers to common questions about stem cell donation. What is stem cell transplantation. How do I donate stem cells. How do I register as a donor, etc.
Warren Fingrut: We put together a library of stories and stem cell donation stories from donors and recipients of stem cells patients who are searching for a match, family members, and they've shared their stories with us. And we've chronicled them over.
Warren Fingrut: over social media with their permission and support and and we share a range of stories from ethnic storytellers. A variety of ancestries
Warren Fingrut: From donors really powerful stories just reading them, you know, brings a tear to my eye every time.
Warren Fingrut: And and we've run nationwide campaigns, you know, getting the chapters across Canada and teams across Canada altar and drives in honor of the patient in honor of a theme.
Warren Fingrut: You know, under the same banner and we've secured significant media attention Toronto Star tropical sun global news etc covering our campaigns, you know, working together accomplishing things that we couldn't work.
Warren Fingrut: Accomplish on off on our own.
Warren Fingrut: You know the communities improve the both the number of donors and recruited over time.
Warren Fingrut: And the proportion of those donors that are non Caucasian so you can see the numbers are increasing each year as the community works together and develop these resources and solves the challenges together.
Warren Fingrut: And so I'll conclude that with with help from patients and donors, you know, the width of wisdom from the recruiters across Canada communities made significant strides to reduce ethnic disparities and Canada's unrelated donor registry.
Warren Fingrut: This increases the chance the patients of all races and ethnicities can find the matching donor than they need to save their life if they do need a stem cell transplant.
Warren Fingrut: The work continues. We've got a long way to go. And I invite everyone here to join our community if they're interested and I'm happy to answer any questions as well.
Warren Fingrut: Of course, this work is a collaboration between dozens and dozens of people hundreds of volunteers and a lot of a lot of people providing guidance and help so I acknowledge them all and thank you so much again.
Warren Fingrut: Mary
Warren Fingrut: The next speaker.
Mary Beaucage: Thanks.
Mary Beaucage: And then hello Basel Mabel cash needs to cause the single and double Mercado them.
Mary Beaucage: I also gave you my traditional greeting in my international language. My name is Mary bowl cash and from depressing. First Nation and ROBINSON, HERE ON treaty territory and I'm from the bear clan.
Mary Beaucage: I have Type two diabetes and was diagnosed with end stage kidney disease in 2013 and spent almost two years on in center dialysis in March 2015 I received a living donor kidney transplant from my cousin.
Mary Beaucage: I'm interested in educating and advocating in matters of Indigenous health patient partnership chronic kidney disease research and organ donation and transplantation awareness.
Mary Beaucage: As a result, I participate in groups like oh DTC CDT RP and a co chair several provincial and national patient councils, including the Ontario renal networks patient and family Advisory Council.
Mary Beaucage: Ontario health. He CEOs patient advisory group and it can solve I co chair, both the patient governance circle and the indigenous peoples engagement and Research Council.
Mary Beaucage: We've had such rich presentations this morning. And I'd like to thank you all for sharing your knowledge and experiences.
Mary Beaucage: I don't have slides today. I wasn't sure what direction my talk would take, but I'm a storyteller and I can only bring my worldview and my experiences into this conversation.
Mary Beaucage: We know that the rates of CK D and renal failure, a higher in several minority groups as an indigenous Canadian woman with diabetes and seek ad i one of those statistics, but it doesn't define me.
Mary Beaucage: I grew up on a reserve moved away for years and returned home, my last name vocab is an instant identifier of where I'm from, and who I am, especially in this area of Northern Ontario.
Mary Beaucage: My experiences include going to the ER not feeling well and any unable to describe it having my blood glucose taken and come back normal and then sent home without further testing.
Mary Beaucage: The only questions that were asked of my mom and I were about whether I do drugs or do I drink what my prescriptions are. Am I on painkillers. Do I hallucinate that she found me like this before. Do I go out for days. Though I always speak with slurred speech was I slurring
Mary Beaucage: I guess I showed them when I came back the next day via ambulance and ended up in a florid a coma.
Mary Beaucage: It's okay, you can laugh humor even dark gets us through these heavy topics and I'm still here.
Mary Beaucage: I also think about my cousin and the waiting time we experienced after her testing was completed and we knew that she was going to be my donor.
Mary Beaucage: She lives in Manitoba.
Mary Beaucage: We found out that dealing with three different governments, Ontario, Manitoba, and the federal government was a barrier to setting up transplant date Indigenous health is a federal jurisdiction. So it came down to who paid for what
Mary Beaucage: after transplant. My cousin was told if she needed any more pain relief after discharge to come directly to the transplant floor and they take care of it.
Mary Beaucage: Three pain meds and an admittedly low pain threshold header calling a few days later, and she was told there was nothing they could do, and she had to go to the ER.
Mary Beaucage: She was afraid to go because she knew how she'd be treated. She was right. She had just done. One of the most selfless things anyone could do
Mary Beaucage: And she was treated like she was a drug seeking NATO, she was humiliated.
Mary Beaucage: I also think of the stories that we've heard of er staff and BC playing prices right and guessing the blood alcohol levels of patients perceived as indigenous
Mary Beaucage: Brian Sinclair of Winnipeg, who is directed to go to the hospital for a procedure satiny our waiting room.
Mary Beaucage: For over 30 hours and died of sepsis. While waiting because staff thought he was homeless. And I also think of Joyce Kwan
Mary Beaucage: Who had the clarity of mind and those moments before her death to videotape what was going on around her, because this wasn't the first time she'd experienced treatment like this.
Mary Beaucage: I have to be honest.
Mary Beaucage: It's all very exhausting.
Mary Beaucage: And it takes emotional toll to have to tell these stories over and over
Mary Beaucage: But I know that there are more out there that we haven't heard
Mary Beaucage: It starts feeling like trauma porn, at times, but it's important to people know what we as indigenous people experience.
Mary Beaucage: I feel a responsibility to do this work.
Mary Beaucage: And I was, as I was trying to tie this all together. Last night I found this quote that I had posted in 2014
Mary Beaucage: It says
Mary Beaucage: When an illness is part of your spiritual journey.
Mary Beaucage: No medical intervention can heal you until your spirit has been good to make the changes that the illness was desire to inspire
Mary Beaucage: And I promised myself I wasn't gonna cry.
Mary Beaucage: But Heather. I think I'm beating you today.
Mary Beaucage: As we talk about racial disparities and transplantation, we need to talk about what are the root causes of the disease. That brings us to transplant.
Mary Beaucage: And the systemic racism in the medical system.
Mary Beaucage: As Craig mentioned earlier washed up to go Scotch is the name of the learning pathway that I created with the goal of increasing indigenous cultural competency and research teams across the country.
Mary Beaucage: This work regardless of the arena has to include indigenous voices at every step. Nothing about us without us.
Mary Beaucage: Make which thank you now see for listening and giving me space to share
Heather Badenoch: Thank you Mary sending you a big hug right now.
Heather Badenoch: I think people need to hear that that
Heather Badenoch: Racism and judgment.
Heather Badenoch: Isn't just ancient history. It's happening today and
Heather Badenoch: People's biases. They need to be examined. And there is a reason
Heather Badenoch: As you have described really powerfully. Thank you for being so brave. Because you are describing why there is mistrust in the medical system and why people
Heather Badenoch: Delay seeking care or don't seek care at all and and what it is that people experience. So thank you for being for being so brave and you will see, you're also really moving people in the in the chat, who are sharing a lot of love for you. So thank you.
Heather Badenoch: We do have a number of questions in the chat. We're also conscious of time so wanted to just choose a couple for our panelists. If you would like to come back on camera. I
Heather Badenoch: Want to just put this one out here is sort of curious to know, and I'm sorry that we don't know the answer to this in advance so but
Heather Badenoch: Is there any research on the experience of trans or non binary folks in donation and transplantation.
Rahul Mainra: That's a great question. Heather and
Rahul Mainra: You know, I don't. I've never, I can't say that I've seen anything from that aspect.
Mamatha Bhat: It's not something that I've seen, either in the liver transplantation literature, but it is a great question.
Mamatha Bhat: Mm hmm.
Mamatha Bhat: Certainly, we've seen its interest little come through our program, who had a
Mamatha Bhat: Identify as such. So we would be, it would be very interesting and an important to look at that experience.
Rahul Mainra: It's interesting. I just wanted to add you know it's it's interesting that you raised that question and it all comes around comes back to, to the data that we that we get from donors or patients.
Rahul Mainra: And even trying to do a talk on racial disparities and donation or transplantation and trying to find, you know, the number of deceased donors of different racial groups, it's not there, that there's there's not a good way where we nationally
Rahul Mainra: Obtain that data in a standardized format. So once again, the question that you pose is is one where we you know we don't ask those questions. It's not on the data set that that you would fill out as a living donor in in for any Oregon.
Rahul Mainra: At least on it says catchment, I would say.
Heather Badenoch: Yeah.
Warren Fingrut: So donation and more motivation to sign up as a donor you list your sex and we get a lot of questions about, well, if what if your gender identity doesn't reflect your sex or if you're trans, etc.
Warren Fingrut: And I mean there are biological correlates where you know if if you're a female or male their relevance, with respect to
Warren Fingrut: The biology with respect to how the recipient of transplant doesn't probably part of that are related to whether or not there's a history of pregnancy and how that can change the immune system. And so that's relevant for sure.
Warren Fingrut: But at the same time, I wouldn't agree with with Dr mean when we don't necessarily capture people's gender identity or non binary status and I think it you know it's an important you know an interesting area and and and should be looked into hundred percent
Heather Badenoch: Great, thank you. One more. And then we're going to close off our session. So it's not a question that came in on the chat. So is anyone taking an intersection of approach to studying the barriers to living donation.
Heather Badenoch: Or waitlist outcomes for example racialized groups by gender or income level by gender.
Mamatha Bhat: That's a great question.
Mamatha Bhat: I've not seen again. I've not seen any such literature. But again, you know, we're talking about racial disparities. On one hand, and the sex disparity. On the other
Mamatha Bhat: But the intersection itself. I suppose that you know if you're looking at racial disparities. You will also incorporate
Mamatha Bhat: The sex of the individual and see if they're on subgroup analysis, whether there are any
Mamatha Bhat: You know, clear predictors and predictors of living donor liver transplantation ACCESS, MAYBE Ravel is the best to comment on this.
Rahul Mainra: I wish I could call a few friends to to
Rahul Mainra: Be there's others on on the line today that could answer that better than I can. But you know, I think some of this data, not as
Rahul Mainra: Granular as as the question that you're asking, but
Rahul Mainra: Some of it is present in the US literature once again in Canada. You know, I think we need, we need to do a much better job of obtaining some of those data and asking those questions. So we can
Rahul Mainra: Ask those research questions, but there is sort of an additive effect of income amongst different racial groups obviously in in access to transplantation. I don't think I've ever seen it when it comes to gender and many den gender differences between
Rahul Mainra: Between access, but I'd be happy to hear from others on on the in the audience today.
Rahul Mainra: Who may be able to answer that, or Warren, if you have some thoughts to
Warren Fingrut: Well, you know, it's really interesting that you mentioned Pinterest.
Warren Fingrut: Intersection ality and then you know the people that have different barriers to donating and I can speak in my experience with stem cell donation. For example, in August, the ruling people from a range of ethnic and racial groups, for example.
Warren Fingrut: And there's a need for mailed owners, especially, but also, you know, there may be specific groups, people that have specific barriers and that bulls bears may intercept. So, for example,
Warren Fingrut: men who have sex with men gay and bisexual men, for example.
Warren Fingrut: Are not eligible to donate blood and Canada, unless they obtained from sex with another male for three months. But that barrier does not exist. And it's not that the rules are different with stem cell donation. They're eligible to donate stem cells.
Warren Fingrut: But they not some graphic may not necessarily know that and certainly my experience is that they don't. And so stem cell phones working on a campaign to sort of
Warren Fingrut: Let this community know that they're eligible to donate and there may be a whole bunch of racialized people from within that community that otherwise would make fantastic donors that are not aware or that face barriers related to their
Warren Fingrut: Sexual orientation, etc. That's just one specific example. But I think, you know, that sort of multiple different kinds of barriers with different approaches that intersect on preventing you from becoming donors across the organization, etc. I think it's very relevant.
Heather Badenoch: Such a good point. And you know, I think it's also not well now and I'm going to ask this, but can men who have sex with men be living organ donors.
Warren Fingrut: They can
But yes.
Heather Badenoch: They
Heather Badenoch: Are listening became
Warren Fingrut: That the rules change in 2009 surprise thousand nine they couldn't have been, but it doesn't understand the rules are different than blood donation.
Warren Fingrut: People just assume that, oh, I've been told that I kept wanting, but it's a different cat become an organ donor, not the case, not the case. But again, I think that, you know, who are the people that are sort of
Warren Fingrut: Changing the story and and disseminate that information to the specific community. It's very, it's not an easy task.
Warren Fingrut: Requires a campaign and you know at the grassroots level sort of disseminate that information. And again, that's just one focused example of how different
Warren Fingrut: Being again thinking from an intersection approach thinking of all the different ways that you might have different kinds of barriers to donation related to the different parts of them and they're different sort of
Warren Fingrut: Backgrounds related related to their life story. And I think, you know, you gotta, you gotta think about them all. You can't just think about them piecemeal because
Warren Fingrut: You will miss a lot of donors and you want to as best as you can.
Heather Badenoch: Yeah, the campaigns aren't one size fits all. It really has to be very specific to yeah thank you to all of you for presenting for sharing your research and your thoughts and for answering
Heather Badenoch: These questions really thoughtful questions and feel free to keep the discussion going in the chat and really want to thank everybody for participating today. Now, stay tuned because studio and it's up so CDT RP has posted in the chat.
Heather Badenoch: A questionnaire really quick about this block the past two hours would really be appreciated if you would take the time to fill it out.
Heather Badenoch: We're going to now take a I'm guessing it's not going to be a 60 minute break, because we've run a bit long. I'm guessing it's going to be a 15 minute break and we'll welcome everybody back at 2PM Eastern time for the new avenues research block. Thanks everyone. See you soon.
Mamatha Bhat: Okay, bye bye. Thank you.