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Kristi Coldwell: The topics have been carefully selected by the planning committee Heather bad not Dr. Google main room and some embed our and forum co chairs Christie Caldwell, and how to foster. We hope you enjoy what we have in store. Welcome, everyone.
Kristi Coldwell: Alright welcome everybody to our afternoon session for some of you out west. It's late morning but welcome nonetheless.
Kristi Coldwell: This is our block dedicated to transplant recipients and to get us started, we have our first panel, which is on the impact of code 19 on the transplant recipient community and it features. Dr. James land.
Kristi Coldwell: And Elizabeth Ingram and sherry Logan, as well as Isabel Dory and I am pleased to say that this panel was supported by astellas Canada but to get started. I will actually pass it over to Dr land to begin introductions for us.
James Lan: Hello everyone. Hi, my name is James plan. I'm a transplant immunologist working at Vancouver General Hospital in Vancouver and my real focus is to do a transplant immunology research, who can hold it in and see how that affects the transplant community.
James Lan: Christie.
Kristi Coldwell: Would prop sherry and Libby and is about will just hand it over to let's go with Sherry since I see you're muted. Or perhaps you would like to go next with an introduction.
Sherrie Logan: Hi, my name is Sherry Logan, I'm a mom of a liver transplant recipient Ashley Logan, she had a transplant liver transplant. At the age of two years old, went into acute liver failure.
Sherrie Logan: And 18 days later, had a the gift of life that was donated by a living donor. My sister Cheryl always honor with every story that I share without her. We wouldn't be here today.
Sherrie Logan: And Ashley is now a 13 year old a happy, healthy girl I'm involved in got involved from the very beginning.
Sherrie Logan: Post transplant with Ashley's angels raising awareness organizing total organ and tissue donation, as well as raising funds to support
Sherrie Logan: The transplant research through Sick Kids hospital and CDT RP also become a patient partner with to international
Sherrie Logan: Pediatric voices for transplantation, one of which I was invited to be the lead in grassroots development and thrilled to say that we have 42 different transplant centers involved in that voice for patient families. Great.
Kristi Coldwell: Thank you Sherry, and I'll hand it overcome Libya, Elizabeth.
Libby Ingram: Hi I'm Elizabeth Ingram, I'm recipient. I had a simultaneous kidney pancreas transplant 21 years ago in Montreal at the Royal Victoria Hospital And I guess that's it.
Kristi Coldwell: Thanks lady.
Kristi Coldwell: allopathic to is about
Isabelle Doré: Hi. So I'm essentially I'm an early career researchers, the shoe Research Center in Montreal and I'm a professor at the University of Montreal and kinesiology, and
Isabelle Doré: My research interests are focus on physical activity and mental health. So I'm really interested in how this physical activity can actually promote
Isabelle Doré: Mental health and prevent anxiety and depressive disorder, as well as stress. So I used to conduct research mostly on youth and adults and, more recently, I started working with cancer patients. And even as a preservation and their relatives in a project that will talk really soon after.
Kristi Coldwell: Great, thank you. And we will now begin slur sharing. Sorry, some slides.
Kristi Coldwell: And our panelists will actually be each speaking a little bit to what
Kristi Coldwell: The last few months of looked like during this pandemic for them based on their perspective, may it be professional or personal and then we will follow with a little bit of open discussion among themselves so
Kristi Coldwell: All right, I believe, Sherry, you will. Next slide, please. I believe sherry is up first.
Sherrie Logan: It's funny pictures because I live somewhere between the picture on the left with his post transplant pretty within, within a couple weeks and the picture on the right, which is kind of where I try to live in the real world at times.
Sherrie Logan: So transparent has been
Sherrie Logan: The coven and transplant has been a very, I would say stressful part of my life within a couple weeks into the coven pandemic, or the announcement of
Sherrie Logan: I actually got really sick thinking that I might have coven and was isolated right away. As I look back I realized that the illnesses and symptoms. I was feeling was actually a stress induced
Sherrie Logan: Illness and that you know the headaches and everything was a result of that. So I know that this is
Sherrie Logan: This is a coven add one more layer of stress to a situation and a lifestyle that while I'm used to living part of this is
Sherrie Logan: It brought me right back to those early days post transplant. When I had no I felt like no external control over life. I just was along for the ride.
Sherrie Logan: Trying to deal with, moment to moment and then I add this layer of code, which is an additional risk, some of the things that were being heard through media.
Sherrie Logan: Were things from anti massacres and really getting a sense that this may not be a safe place in this world for me to live anymore for the risk that were involved.
Sherrie Logan: Also hearing messages of, you know, stay home. If you have underlying health issues rather than people needing to wear a mask. And again, that that message of is this really a safe place. Is this a place where I belong in this world around me in this community that I'm living
Sherrie Logan: At one point I joined a social bubble with people that were very close to me that we're friends or that we're family and realizing similar to post transplant that
Sherrie Logan: You know the screening process. And people say they are healthy and that they're not sick doesn't necessarily mean that
Sherrie Logan: Often going to family functions where people have runny noses and sore throats and
Sherrie Logan: Previously telling me that they were fine. Similar to the social bubble. I ended up as I
Sherrie Logan: screened. People are the people that were involved in my bubble if they were actually safe to be around to realize that that wasn't necessarily the case and everybody has a different idea of what physical distancing is and keeping up with you know the the needs to keep us safe. So
Sherrie Logan: It felt like as soon as we entered the bubble within weeks we're right out of the bubble, like, and again, isolating us a little further becoming a bit more remote from the world around us.
Sherrie Logan: Winning the other pieces is that some of my social networks kind of fell apart, similar to post transplant.
Sherrie Logan: You know, you pick and choose who you share this story with and and who you're close with and you find it really quick that most people have a hard time
Sherrie Logan: Holding a space for how you're actually doing and wanting to know and be there to support you. So I thought that was really challenging because a lot of my support systems were living a very different life.
Sherrie Logan: And I was not being able to relate to how they practice life and who they were, you know, how they were following the rules or not. And so it did make me feel a little bit less like I was connected to the people around me.
Sherrie Logan: So I felt like, you know, just sort of seeing the world around us and practicing like very different than us. It really made it very hard and so
Sherrie Logan: You have through this journey I've been figuring out ways to get control again of, you know, just life and to find perspective in all this.
Sherrie Logan: And, you know, part of these decisions been decisions. We do need to make, you know, can be a very empowering things like where we choose to work or go to serve kids go to school, you know, these are all things that we had choices around and I felt like
Sherrie Logan: Areas that I did feel more empowered and starting to feel more belonging to, you know, just being able to find my own power within this process has been through some of the choices that we have made.
Sherrie Logan: It has been about using the connections through zoom for friends that are really close. And that really are there to support and understand and listen and be empathetic and compassionate.
Sherrie Logan: One of the big parts of this process for me has been reaching out to a social worker to for myself and for my family helping us get through family conflict, even within our immediate family and decisions that we were making
Sherrie Logan: You know, we also have we're so fortunate to have the CD tarp platform for patients to connect because it was nice to come together with a group of people who understood where I was and being able to
Sherrie Logan: Really echo the words that I was feeling
Sherrie Logan: So it just it the team in sick kids was a wonderful place to connect as well to reassure that we are following the rules that we knew we needed to and that we weren't looking at
Sherrie Logan: What was outside the box of normal that we weren't extreme as words that were repeated often Timmy as being as being extremely careful extremely cautious and even code, grazie. I believe it or not.
Sherrie Logan: So it was really it was really challenging but finding, you know, support and feeling power within some of the choices and looking at life a bit differently and changing the perspective has definitely helped
Sherrie Logan: As things Evan flow with this. I've often find that it is a bit of a setback here and there, but I, you know, starting to adjust in our own way that I'm able to find positive and healthy supports.
Kristi Coldwell: Great. Thank you, Harry. And that leads us to Elizabeth
Libby Ingram: Hi. Sorry about that.
Libby Ingram: Okay, where to start. Well,
Libby Ingram: What really really impacted me this year before the shutdowns for the pandemics. My dad passed away in March and we had his we had his funeral, a week before the shutdown, so I don't know really what I'm feeling. Now, whether it's Judah pandemic, or whether it's doodle. The Lost my dad.
Libby Ingram: You know, I've never lost anyone close to me like that, except for my grandparents, and I was just child at the time. So I've really been feeling, sort of, I've been feeling numb out when my dad passed away, my partner. Just see here
Libby Ingram: He left about a week afterwards and a couple of days later, everything was shut down. So I was with my mom for almost six months and we didn't see anybody
Libby Ingram: It when we were just together. So we had friends who dropped off groceries and we didn't go out until the better weather. When we ventured outside
Libby Ingram: So I haven't seen guy since March, the second week of March, and
Libby Ingram: I'm a teacher. So I'm I'm teaching from home and I'm retiring in March, so I'll be retiring from here. I won't be in school with the students or with my colleagues, it's just one day I'll be at work and the next day I won't. So
Libby Ingram: Um,
Libby Ingram: It's a lonely time as I know I've never, I've never been alone, my, my whole life. And so
Libby Ingram: Being here by myself. I, I still don't venture out. I have people who drop off my groceries for me and with the colder weather coming I can no longer even see people out on the deck. So it's, um,
Libby Ingram: I don't know, I'm not an anxious person, but now everything is so uncertain and I know I'm not the only person I know everyone else is in the same situation. But I envision my future here.
Libby Ingram: Inside these four walls and, you know, I don't know what the future holds. I don't know what I know none of you know what the future holds for you either but I managed for 21 years
Libby Ingram: In a school with lots of young kids who are always sick and I I manage that very well. I taught the kids to cover the coughs and sneezes and wash their hands and
Libby Ingram: And I guess all the time. I spent teaching before my transplant.
Libby Ingram: Method. I was ok I'm met with infectious diseases specialist or see what my chances were of catching measles again or chicken pox, and I've been fine law those childhood diseases run through the school, but now it's just
Libby Ingram: It's just very uncertain. I don't know when I'm going to be able to venture out into the world again so
Libby Ingram: That's it from me.
Libby Ingram: Yeah, just the uncertainty is what's what's really bothering me. That's all. Kristi. Thanks.
Kristi Coldwell: Thank you baby. Thank you Sherry. I think that you speak to a lot of what everyone in our audience is likely experiencing right now in some capacity.
Kristi Coldwell: So thank you for that sharing and that actually brings us now to a little bit of a different context, we have
Kristi Coldwell: Dr LAN and Dr. Dory who are going to now speak a little bit about some of the research that has actually a reason because of covert and how it relates to our transplant community. So Dr. Lana will have you again.
James Lan: Thank you. Christy because I heard a story from Sherry and levy on as a researcher and a physician.
James Lan: When the pandemic started with wanted to do research that would address many of the uncertainty and concerns brought up by our patients.
James Lan: And the biggest thing about time and also continues today is that
James Lan: The thing that ties all the transplant patients together is there need to take anti rejection medications and our patients are constantly told
James Lan: Not because they take immunosuppression they have a higher risk for infection and possibly get from that and not
James Lan: On holds true for most infections. But what's unique about a coven 19 infection is that the more we understand it, the more that there is something interesting bothers virus that's different from the others.
James Lan: For one, what we understand today is done many people die from the coven 19 infection. It only just die from infection. They die from the immune overdrive now may
James Lan: Result from infection yourself. And if you read about what's out there in terms of treatment. Oftentimes the treatment is to give immunosuppression to suppress the immune overdrive.
James Lan: Which. These are very interesting research question that is while you transplant patients actually are more susceptible to Kobe 19 what by virtue of your anti rejection medication. There's some help protect it.
James Lan: And if that's the case, perhaps we can manipulate the immunosuppression medications so that we can offer the best
James Lan: Chance for our patients to do well. Once they actually get infection. So that's the background to my research project. Next slide please.
James Lan: So what we hope to do is to profile the immune system comprehensively in solid organ transplant patients who are unfortunately have caught copy 19 and computer lot to immuno competent patients in a general population who also have
James Lan: So those are two populations. The first one, if you can click on the slide please.
James Lan: We plan to enroll 20 transplant patients from various sites so Vancouver. We are funded to do this study, we have a sister site with the University of Washington.
James Lan: And there may be other Canadian side. So which one join on later in the year as well too. So we look for 20 soda organ transplant patients with
James Lan: And we compare that to another 20 patients from the general population, and we are using three different ways to measure the immune response. The first one click, please.
James Lan: Is we want to profile the cells called the T cells there the first cells that go out and they fight infection. We want to see how are they different between patients on anti rejection medication versus those ones who are not
James Lan: And then the next one we plan to profile is the cytokines, you might have heard about cytokines release syndrome. These are molecules cause inflammation with infection.
James Lan: And with coven 19 they can be very much in overactive drive and that can lead to death. So we want to see if that's actually
James Lan: Impacted by taking anti rejection or not. And the last one we want to look at as well to our patients can they develop antibodies. We know how important antibodies are to fight off infection.
James Lan: And do our patients on immunosuppression naturally have a decrease ability to mountain antibody response or this is not affected by immune suppression.
James Lan: So by measuring the three systems of the immune system. We hope to provide complete picture. Let me inform clinicians, how to adjust their empty rejection medication should occasion, get the infection with Colby 19
James Lan: And these information will be also correlated to study outcomes in terms of death requirement to go to ICU or life support so that we can predict at a time of infection. What's going to happen to the patient. Later on in their trends in their infection course. Thank you.
Kristi Coldwell: Great. Thank you, Doctor. And that brings us to Dr. Doreen.
Isabelle Doré: Hello again everyone, so I'm really pleased to really quickly present this project, um, because our users. Morning, many people were expressing need for research and mental health. So I need
Isabelle Doré: A thesis project with partially maybe answer a couple of question. So, um,
Isabelle Doré: This project. Amen. Studying the impact actually of code in 19 pandemic on lifestyle and mental health of immunosuppressed population their relatives. So the most important thing I would like you
Isabelle Doré: To remember about this project is that it's a project.
Isabelle Doré: Initiated by patient partner. So I was listening this morning to myself, and I was discussing different kind of patient partner implication and research.
Isabelle Doré: And I think these ongoing project is actually very unique because of patient partner have been dismissive.
Isabelle Doré: In the initiation of the other research project and also to specific objective proposed were informed by our discussion also with concern and preoccupation expressed by patient partner and patient related partner for the project. So
Isabelle Doré: I just put my name millennium silhouetted armies, but there's many dedicated patient and the research partner involved in that project.
Isabelle Doré: And I think it's an opportunity for me to thank me and I nice invited a city. The RP and everyone
Isabelle Doré: For involving me because I'm so grateful to have discovered a city, Dr. P community and been able to start research project with you all.
Isabelle Doré: So you can go, Yeah, sure. So everything starts off with CD LP patient partner actually expressing feeling of stress and high level of anxiety and social isolation following
Isabelle Doré: The Caribbean 19 has been declared global pandemic and March so really quickly to see Dr. P set up weekly focus group with a small group of patient partner to actually provide informal support. So really quickly. A really supportive extremely supportive group as emerging
Isabelle Doré: And we then decided to conduct a research project using all the information share with the
Isabelle Doré: By the participant through the weekly focus group and actually run a more extensive research longitudinal study using questionnaire with a large sample of both patient partner relatives and donor.
Isabelle Doré: You can go to the next slide. Christy. Thank you. So I'm a little bit more specifically this research project aim in the specific context of the coven 19 pandemic.
Isabelle Doré: To understand what are the socio demographic clinical and in terms of social support and social interaction.
Isabelle Doré: Predict or determinants of mental health and we're interested in various indicators of mental health. So stress, anxiety, depression, but also resilience, positive and negative emotion.
Isabelle Doré: We are also interest in lifestyle behavior. I told you before, I was really interested in physical activity sit in theory behavior and sleep.
Isabelle Doré: So how in the specific context of coven pandemic those lifestyle related to mental health or the protective or their risk factor. So really we are really interested in looking at that. And for those of you who participate this morning.
Isabelle Doré: I know a land and Melanie presents the pleasure. Haha. So this research project is actually part of positive
Isabelle Doré: So we have a specific objective which amen studying and what actually is the association between
Isabelle Doré: The fact of having a pad. So pet ownership and mental health and whether this association is actually potentially explained by lifestyle behavior and for that in the next slide. I've just put like some really quick results to present
Isabelle Doré: Yeah, so it's a little bit small. But I just want to show you this specific result that we're going to share really soon with the participants.
Isabelle Doré: So as you can see at the top of the slide there 65% of our sample list comprising of almost 140 participants will actually own a pet.
Isabelle Doré: And when you compare and those graph of the physical activity level before. So it's the dark blue. And since coven pandemic. You see, for everyone. Whether you have a pet or you don't have a bed, there's a reduction. So people do less exercise.
Isabelle Doré: now than it was the case before pandemic, but the when you compare people who have pets.
Isabelle Doré: And those who don't you see that people who have that I really smaller reduction in their physical activity level and in the last graph, you see that there's basically no difference in today's of
Isabelle Doré: What are people walk for those who have pets. When you look at those who don't have fans. There's a really big difference. So we are just at the very beginning of
Isabelle Doré: The research analysis now and but it's really interesting. And we really want to look more specifically at this association does having a pad actually impact your physical activity level and does it have a future impact on your mental health level.
Isabelle Doré: So intellects line. Um, I would like to say, and I think it will probably partly answer to a need express before this project is actually using the code in 19 pandemic as a pretext. So as a specific context of stressful life contacts.
Isabelle Doré: And this project aims at more globally have to monthly informant facility. The integration of mental health as part of a routine care for numerous patient and their relative. So this whole project.
Isabelle Doré: aims at collecting data, producing results and then building a mental health two bucks that could be implemented and integrated both in a hospital setting and community setting to support mental health of even though suppress the student students and their relatives.
Isabelle Doré: Thank you. Christy
Kristi Coldwell: Great. Thank you so much, everyone. I really appreciate your candor and you're sharing and that actually brings us to our question and answer portion of our session.
Kristi Coldwell: So I just want to remind everybody in our audience that you can submit questions via the chat little bubble down at the bottom.
Kristi Coldwell: Or you can type them specifically by selecting in the panelists list to the CD TMP quite Q AMP. A or you can always, raise your hand. So I will just um
Kristi Coldwell: So we do have a couple questions, but I do want to ask, since we didn't have time for a small group discussion. Do any of our panelists have questions for one another. Before we get started with our audience q&a
CDTRP Host: Thanks twist.
Kristi Coldwell: Oh, I believe Sherry's raising her hand, perfect. Go for it. Carrie.
Sherrie Logan: I'm wondering, Dr. Dre. Was there anything that has surprising you with this research that you weren't expecting to get the results of is it part of the hypothesis.
Isabelle Doré: Well, we are at the very, very beginning of analysis. Now a bit. I think what surprised me the most so far is first
Isabelle Doré: The involvement of participants that research. So I'm really used to conduct research with youth, especially so the involvement of the transplant community.
Isabelle Doré: Was quite impressive. And this is really important as a research here because when most people actually participate in answer you are most likely to have like I'm a very interesting portrayal profile of the population.
Isabelle Doré: Then when you have only the interest, but apparently people were actually answer. So I think that that was really surprising. I was actually more
Isabelle Doré: I think more closely related to the positive home project I was quite surprised to see how many participants.
Isabelle Doré: actually own a pet. So, um, this was really surprising for me, I would have never guessed that. So I think this is really special and into the discussion we had in
Isabelle Doré: The weekly discussion group, it actually emerged couple of times. One other thing that
Isabelle Doré: Really surprised me and that I never, never expect is all the questionnaire. We had sent. So we have long questionnaire. We have daily question here where we have people
Isabelle Doré: Either usefully Steve did you do physical activity on many sedentary times during the day and
Isabelle Doré: Some patient partner actually express that those question there were actually really strong motivation to go and walk and do physical activity and I never expect that actually collecting data for research project could actually be an intervention.
Isabelle Doré: To to do have an impact on myself. So, yeah.
Kristi Coldwell: Thank you. And we do have a question. It looks like it may perhaps be directed towards Dr. Lam. But of course, Dr. Dory. Feel free to chime in.
Kristi Coldwell: So jointly with coven concerns is the upcoming flu season my transplant coordinator is telling me I require the high dose flu vaccine while Ottawa public health says no, it's only provided to patients over 65
Kristi Coldwell: Do you have any thoughts on this and any help kind of navigating this conflicting information.
James Lan: Yeah. One of the issues with a pandemic is different jurisdictions come up with different guidelines on
James Lan: In my opinion, our patients are always susceptible to the flu, particularly so because of the immune suppression. So I would encourage the transplant patients who get
James Lan: The flu shot because we know that one can get a flu and out and also get cold in 19 so the last thing when wants is to get multiple infections, we should do as much vaccination as we can.
James Lan: On multiple infections going into the winter season.
Kristi Coldwell: Great, thank you. We have one question for Sherry actually Sherry, you mentioned that you were labeled extreme. Could you elaborate a little bit more on what that what that would, that means or what that looks like.
Sherrie Logan: Sure. So I was following public health guidelines and was reassured when we show to the transplant team at the kids that the way we are practicing life.
Sherrie Logan: Was in fact what was public health was was reiterating. It's just that the community around us tend to do things a little differently and had a different understanding of what that meant for them a lot. Most of my contacts.
Sherrie Logan: Are very low risk with health. And so the way that they chose to live was very different. The way that we, the way that follow the public health listed the rules so
Sherrie Logan: Then I i believe some of those comments came from, you know, comparing the way that we were living lives, our own lives through this pandemic and you know I can't speak to some of the reasons why they they commented, but I believe it's the very different ways in which we are living so
Kristi Coldwell: Thank you Sherry and I have actually Libby. You have a question. You just haven't been able to raise your hand.
Libby Ingram: Okay, well, it's for Dr. Lam and it may just be too early to ask this question, but
Libby Ingram: I'm wondering what the likelihood is of developing like a reliable treatment or possibly a vaccine in the not too distant future.
Libby Ingram: The will that will be able, some will be able to venture into the rest of the world with some
Libby Ingram: Degree of security, you know, I've been invited to do a transplant walk on Saturday. And of course, there's only going to be a maximum of 10 people and we do it every year, but I don't know that I'm comfortable going out, you know,
Libby Ingram: And I don't want to be in this place for a year. I don't want to be indoors and I do go out for walks. But anyway, that's. I'm just wondering what the possibilities are of us.
James Lan: Every one is asking that question. These days, I say, you know, you've said it the it's too early to say what the data is going to look like.
James Lan: I think what's promising is there are multiple vaccines being developed at the same time. And they're always kind of pushing each other to move ahead a bit faster. So I do know that vaccines will become available sometime next year.
James Lan: How early. I cannot tell, and which one's going to be better than the others. I also can now say, but I feel like there's enough
James Lan: Things in the running that you know there's, there should be a few dot dot panel for our patients. And so I feel optimistic about that. I don't think so, for this year for
James Lan: Sure, yeah. Yeah, okay.
All right. Thank you.
Kristi Coldwell: So I have another question for Dr. Doreen Dr LAN do policymakers get influenced by these studies to adjust their priorities.
Isabelle Doré: I can start if you, if I can. James up. I do think so, um, I do think so, especially because I'm, for example, it's, it's quite interesting because I'm an epidemiologist, even if I work in mental health.
Isabelle Doré: And I actually point this out because I'm any privileges and I'll work on mental health, which means that mental health is actually part of the coven 19 contracts now so
Isabelle Doré: I do think that policymaker are aware, I do think that, unfortunately, um, because we had to focus so much on our physical health, safety,
Isabelle Doré: We had to prioritize this and this is totally okay. The problem is that we have probably all the clothes too much aware it to the mental health issue really critical and me.
Isabelle Doré: So I do think that because the physical and social distancing measure social isolation remain for many, many weeks and then months and will probably last for a couple of months again.
Isabelle Doré: We do have now to keep our focus on physical health, but actually add the focus on mental health because I think it's really, really important. I do think that the government and policymakers are slowly opening their highs regarding that. I do know that we have a lot more
Isabelle Doré: Media coverage now.
Isabelle Doré: Just last week I gave couple interview at CBC. And so I do think that there's a recognition of the importance of
Isabelle Doré: Mental health in that specific context of coded pandemic and especially for clinical populations such as a transplant and immunosuppressed people, but I do think that we should
Isabelle Doré: We should integrate this much more and recognize that our health is both our physical and mental health.
Kristi Coldwell: James, did you want to add anything or did. I'm Dr. Dory pretty much covered all
James Lan: That was a perfect answer.
Kristi Coldwell: Awesome. All right, I see that Linda Martin Heather hand raised. Linda. If you'd like to unmute yourself. You can ask the question directly to our panel.
Linda Martin: Dr. Len. Can I go back to the question about flu vaccine.
Linda Martin: I, I understand there's three vaccines available this year, the standard flu vaccine a high dose vaccine that requires
Linda Martin: A booster injection after the first one and have something called flu zone that is recommended for people over 65 with underlying conditions.
Linda Martin: I asked my transplant team.
Linda Martin: What they would recommend and I'm a double lung transplant, I should say. And they recommended just a standard one which really surprised me. Can you comment a little bit more
Linda Martin: on not just the standard flu vaccine because I get that all the time, but whether I should be considering one of these higher dose vaccines. Thank you.
James Lan: Know, that's an excellent question, Linda. I'm actually waiting on my infection diseases colleagues.
James Lan: To provide recommendations on that one. The reason for the different dose is about immunogenicity is that when patients aren't immunosuppression medications they sometimes have a harder time to mountain
James Lan: Antibody or immune response to the vaccine agents and that's why some of booster shots. I would recommend it.
James Lan: I am waiting for the recommendation from my colleagues here what drafting those guidelines as we go into winter so I don't have anything from to tell you, but that would be the rationale
Kristi Coldwell: Excellent. Actually, so Dr line that kind of leads us into another question that's come through actually perhaps was more of a statement, but it was
Kristi Coldwell: From one of our audience members who is acknowledging that there's a lot of us out there who are uneasy, and perhaps even a little bit
Kristi Coldwell: Scared of concern to get vaccinated, particularly, probably around the coded vaccine when it does come out. Can you speak to some of the maybe the safety concerns and give a little bit of background around on the safety and the testing.
James Lan: I think there's a lot of concerns about possible side effects to vaccination and as we undergo each treatment. I was asked myself, what's the risk benefit ratio.
James Lan: I think in this pandemic. To me, the weight of the evidence is about prevention to get to, you know, to develop infection.
James Lan: When we look at on sorry organ transplant patients who are admitted to a hospital recovering
James Lan: The mortality rate can be as high as 20 to 30% so to me, anything that we can do to minimize that would be a good thing for our patients.
James Lan: These vaccines. They do undergo a fairly rigorous on conduct for safety to ensure that
James Lan: They don't cause undue side effect for all patients the OB side effects, but we don't want to have the serious ones. So I do feel a lot the processes quite good. They won't be side effect free. But as I said every treatment has the equal sign, the best site.
James Lan: For me in this pandemic with the current situation, the goodwill our way that the side effects.
Kristi Coldwell: Right, thank you. And we have one more question and just looking at our time trying to keep us on schedule. So we have one more. They're wondering if there's any data that showing recipients having a PTSD reoccurrence because of covert
Kristi Coldwell: For this recipient. It is a reminder of being sick and probably around a lot of the isolation and some of the similar feelings that they experienced when they were waiting for transplant. So is there any data on that.
Isabelle Doré: That's a really interesting question. I do think so. For those who don't know, PTSD, post traumatic stress disorder. Um, it's, I am I am not aware of any our recent data regarding us specifically transplant recipient.
Isabelle Doré: In the context of coven 19 but there might be. I didn't look specifically for that and I will because they're really implementing question.
Isabelle Doré: Um, from what I have observed through our weekly group discussion and a few preliminary results, we have from the project is that
Isabelle Doré: transplant recipient seems to be actually navigating between PTSD and resilience and this comes like
Isabelle Doré: In cyclic time during the last month. So at some point. I think the specific context of the coven and all the high deletion and will be strict measure, they have to observe
Isabelle Doré: Is actually reminding a lot of the transplant and causing a lot of stress, but at the same time, I do think that this past experience.
Isabelle Doré: Bring for some of them, or even at some point for those who experienced PTSD symptoms they will actually in the next week or maybe in the next month.
Isabelle Doré: Experiments much more resilience, because they feel a bit more resourceful due to their best experience. So I do think it might be able to six cyclic, but it's a really, really interesting thing, and I will look at that for sure. And we don't actually have all the data.
Isabelle Doré: And the research project to look at this, but we might be able in a daily assessment that we have. We look they add on a daily basis at stress level and resilience level. So it could be really interesting to look in daily experience of the people experience both symptoms.
Kristi Coldwell: Great. Thank you, Doctor, Doctor. Doctor, line one more really quick question. I just follow up on the vaccines. So someone is wondering if the Corbett vaccine will be alive, one
Kristi Coldwell: Oh, you're muted.
James Lan: Yeah, different preparations and some are not. So, um, I think what a transplant patients and knowing how to take any life vaccines, so that that holds true
Kristi Coldwell: Excellent. Alright, so we will wrap this up. We do. So I just want to again and express my sincere gratitude to all of our panelists.
Kristi Coldwell: For their openness and willingness to share with us all today. So thank you for that. And this actually does bring us to a five minute break. So
Kristi Coldwell: Just enough time to really quickly run to the washroom or get a snack or maybe both of your fast, but we will see you back here at 240 sorry 40 you can't see my clock five minutes. Just be back here in five minutes. Thanks, guys.
Kristi Coldwell: Hi everyone I'm. And we're back. So I would love to welcome our next
Kristi Coldwell: Panelist Linda Powell and Marie Wilson. Both are patient family donor research partners and both have been conducting an analysis and Alberta, which they're going to share with you today. So I will hand it over to Maria and Linda for introductions.
Linda Powell: Thank you so much. Christy. So I'll just put the PowerPoint out on the screen here and share it with you.
Linda Powell: Just give me a moment here.
Linda Powell: Share the screen.
Linda Powell: Oh dear. I'm having trouble doing not
Linda Powell: Christie. Are you able to see the screen.
Kristi Coldwell: I'm
Kristi Coldwell: Not yet, but I believe we had the PowerPoint that we can also share the screen.
Yeah.
Linda Powell: So while you're doing that.
Kristi Coldwell: There we go. It is it
Linda Powell: Okay.
Linda Powell: All right. Are you up now.
Kristi Coldwell: So you just have to open it.
Linda Powell: Okay, there we go. Okay, well,
No.
Kristi Coldwell: No, we just have to open up the PowerPoint. So if you click on it that AG slides.
Linda Powell: I'm having trouble look okay. Just a moment. Now, here we go, here we go.
Kristi Coldwell: Okay, we are up and running. Awesome.
Linda Powell: We are set and tactic. Thank you so much. So thank you everyone. And CDT RP and Health Canada and supporters for the opportunity here today.
Linda Powell: We do want to acknowledge the many who have contributed to our work over the past few years, both directly and advisory
Linda Powell: Alberta health Alberta health services, Dr. Scott, clear and back with his research for us.
Linda Powell: Alberta transplant Institue and you have a UC support provincial and international donation and transplant organizations and the many individuals both medical and health management.
Linda Powell: And. Of particular note CDT RP and the Kidney Foundation, certainly the power of community and what we can all do together. So firstly, some introductions, my colleague and R EO G co founder Mary Wilson wave Murray transplant recipient and myself. Linda pal patient care giver and he chair.
Linda Powell: Our topic is a community based initiative for change and this change is an improved organ donation system in Alberta and ultimately an increase in access to transplantation.
Linda Powell: We as a group had a key question, how can we help with this came the growth and formation of a network and village of patients health system government professionals and ultimately to our extensive research and analytics to support and drive change.
Linda Powell: So who is an Ag, so we're collaboration volunteers who came together in 2017 with background and experience in investment banking.
Linda Powell: Business Law philanthropy transplant medicine and patient care we each had a personal reason to pursue this and, of course, ultimately, it's about saving lives and improving lives.
Linda Powell: So the initial purpose, as we mentioned, was to bring focus to the organ donation shortage in Alberta and contribute it collaboratively to solutions.
Linda Powell: Also our research definitively has demonstrated, there are cost effective economically cost effective approaches to change and improvement.
Linda Powell: We can save health system dollars and that's certainly so important, especially in this current fiscal environment that we're living in. So more about this from very later.
Linda Powell: This slide shows the numbers reason in comparison to other jurisdictions across Canada and internationally.
Linda Powell: And Alberta, we can and need to do better and the DPM comparison is not always apples and apples across jurisdictions. We know that due to the parameters for data collection. However, it does give us an important perspective.
Linda Powell: We also wanted to gather information and strove to understand the factors inherent in improving our system, one being the need for education and awareness.
Linda Powell: Not only in our public community and our patient community, but in the professional community.
Linda Powell: So this slide is an example. It's just a recently research paper from Dr Weise in the Canadian Journal Anastasia. Thank you, Dr. Weeks.
Linda Powell: This study demonstrates the need for awareness and education among critical care providers about mandatory referral with potential donation.
Linda Powell: And it's governing legislation and he found that only 42% of critical care physicians who responded working in provinces with mandatory refer election where their legislative require needs.
Linda Powell: So we can see across the board that both in in the public and in the medical profession, there's a need for education and awareness in this field.
Linda Powell: Now certainly we've all known that persistence is a virtue. Usually, and this timeline showed demonstrates
Linda Powell: A journey of our studies and some of the weak points along the way, certainly a great amount of detail but demonstrates from the very beginning as patients to
Linda Powell: The different waypoints and connections and development of relationships that we had over the past number of years.
Linda Powell: This journey is tough. As we all know, individually and each one of us has a personal story.
Linda Powell: For me for us for Greg and I, my husband. I was the primary caregiver for him in his journey in the liver transplant listing process and I say was as fortunately due to a stage to research trial so important in this context today.
Linda Powell: He benefited from carbonate, the precursor to the current hep C medication is transplant was averted. In the 1980s, blood transfusion and induced disease was cured.
Linda Powell: We at the time, we're actually an
Linda Powell: Eve Alberta and possibly Canada as he would not survive the way to we were just very fortunate that this research trial with made available to us.
Linda Powell: So Murray, you have a very compelling story personally as well. And one of the reasons that Greg and I became an adult. So could you share with us.
Thomas Murray Wilson: Sure. Thanks, Linda. I'm not on the screen, it seems
Thomas Murray Wilson: Christy. Can you guys hear me.
You
Kristi Coldwell: Can see you, you're good.
Thomas Murray Wilson: Okay, excellent. So
Thomas Murray Wilson: Listen. Thank you, Linda and hello to my many friends and colleagues out there, congratulations to the organizers of this session, and I wish I had a bit more time to adjust with Sylvain and hands but that'll come later.
Thomas Murray Wilson: I had a libert transplant five and a half years ago at the University of Alberta hospital.
Thomas Murray Wilson: I am very grateful for the frontline clinical staff at both Calgary and Edmonton transplant clinics for background.
Thomas Murray Wilson: I'M A FARMER, an engineer, an international government and corporate investment banker, I have evaluated the economics of hundreds of projects in over 30 countries. I am the extreme case of a numbers nerd who cannot stop asking questions. And this is one of my mantras.
Thomas Murray Wilson: You know, you're going to get the oatmeal version of Murray today. If you want to flag waving waving version, you get my contact deal to details from
Thomas Murray Wilson: Christie during my weightless period, which is, as many of you know and extremely stressful period. I was asked if I would wish to participate in the organics research program.
Thomas Murray Wilson: For profusion of Oregon Oregon donations, headed by Dr. Shapiro at you obey. I agree to that.
Thomas Murray Wilson: In my case, it was unnecessary to utilize the ergonomics equipment. However, my roommate was the first patient in North America to so do
Thomas Murray Wilson: And swing. Dr. Sparrow some months later came across trance a transportation of the equipment issue in Edmonton, I called my friends, the founders of stars, the eMERGE the emergency how helicopter ambulance organization for Western Canada.
Thomas Murray Wilson: Founded by Dr. Greg and Linda Paul and with the additional assistance of Lori west. The problem was addressed.
Thomas Murray Wilson: Next slide please. We ended up several months later banding together with a number of community and healthcare professionals to address the issue that Albert is very low donation rate, as evidenced by this slide that was presented earlier by Linda
Thomas Murray Wilson: We add a big Alberta organization group are not satisfied with this performance for either our province or for for Canada we, you know, I think all of us think we're, we have one of the best health systems in the world in Canada.
Thomas Murray Wilson: But you know in this area of donations. We really don't
Thomas Murray Wilson: So we took an under we undertook a review of organ donation and transportation systems across Canada and around the world.
Thomas Murray Wilson: This economic slides. It's clear that there are many different approaches to these matters, including important ethical and legal considerations.
Thomas Murray Wilson: But we have found that in addition to life saving and quality of life issues that are strong economic imperatives to move ahead with increased donation.
Thomas Murray Wilson: The slide that has been on the screen summarizes our modeling analytics around the situation in Alberta.
Thomas Murray Wilson: It as well understood that each individual kidney transplant pays back in cash to our system within 18 to 24 months.
Thomas Murray Wilson: As a result of savings and kidney dialysis. So this is driving really strong economic reason on the kidney side.
Thomas Murray Wilson: So based upon this, we decided to take a broader look at the cash economics and macroeconomics of the complete kidney dialysis kidney transplant and other solid organ transplantation system in Alberta.
Thomas Murray Wilson: We've run thousands of cases across hundreds of scenarios with a wide range of sensitivities around the key variables and we have continually updated.
Thomas Murray Wilson: Our partners at Alberta health, which is the ministry and Alberta health services, which is the $22 billion a year system that delivers health services in Alberta. The slide in the screen is an attempt to illustrate the book ends of the economics over 10 years
Thomas Murray Wilson: Starting from the left of the status quo that is donation rates of transportation costs stays static
Thomas Murray Wilson: But through both population growth and increase demand for end of life kidney disease treatment either dialysis of transplantation that's I continue scrolling about 6% a year, which is
Thomas Murray Wilson: A Kidney Foundation forecasts that we've used with the aspiration case that's our most optimistic case on the right hand side, Alberta reaches world level donations per million of population per year of 45
Thomas Murray Wilson: Alberta Alberta currently has approximately 2600 people on dialysis. The red line.
Thomas Murray Wilson: Shows that instead of having 4500 people on the on dialysis in 10 years we will reduce that number by 5000 to 3500 through increased donation.
Thomas Murray Wilson: As shown on the bat black line, including the organs other organs, we would increase the number of transplants by around 2700
Thomas Murray Wilson: In the blue line this program could save Alberta, the health care systems and province through taxation around $300 million over the 10 year period.
Thomas Murray Wilson: The green line includes the macro economics, which includes the impact on families and and value of life. It's one and a half to $2 BILLION OVER A 10 year period. So we're maybe a bit tab on
Thomas Murray Wilson: Optimistic in what we've presented here in this in this slide, we show on a gazillion other cases to the province.
Thomas Murray Wilson: But there's a huge potential on the economic side and the quantity of life value of life issues if we become a global performer.
Thomas Murray Wilson: We think this applies for the rest of Canada, even though, in particular, Ontario and BC are up there at 25 DPM
Thomas Murray Wilson: There's a lot of lives and a lot of money to be moved around in the next 10 years if we have a more efficient donation side of the system. We all know that organ donation or transplantation saves lives and improves quality of life this Community initiative evolved from a key question.
Thomas Murray Wilson: We all ask, you know, what can we do to improve this and we think, where we have a vote the imperative to consider the strong potential economic advantage to this question.
Thomas Murray Wilson: For the decision makers or do you, Linda.
Linda Powell: Thanks.
Linda Powell: For we do our hearts. Christy and Chelsea, we have time to do the poll
Kristi Coldwell: I believe we do. Can we get the pull up a Chelsea. Excellent.
Linda Powell: Okay, so here's the first question, do you believe that more community awareness and education would make a positive difference in organ donation rates and transplantation success, yes or no.
Linda Powell: And if you could put in your response right away. We have a second question as well and will collate the results here quite quickly.
Linda Powell: wait five more seconds, and then the next question.
Linda Powell: Hundred percent. Whoa.
Linda Powell: Okay, second question.
Linda Powell: Do you believe that more active engagement involvement by the community would make additional positive differences in organ donation rates and transplantation success wait about 10 seconds to put in your answers.
Linda Powell: And there was, oh, it's coming shortly.
Linda Powell: We have some results Chelsea Christie. Now we can move on. There we go. Yes. Okay. Fantastic. Thank you so much.
Linda Powell: And now we will go to the next slide.
Linda Powell: So as we've seen,
Linda Powell: The power of many voices coming together support research initiatives be game changing for patients and contribute to the scientific knowledge base and save dollars.
Linda Powell: And sometimes the question questions from families and patients are key questions that need to come forward and perhaps we all have some more now.
Linda Powell: We started with a simple question. And this led to incredible networking with many players and hopefully will help move the bar.
Linda Powell: It's exciting to be involved, and we hope our initiative has provided an example of what a community coming together can do
Linda Powell: We've seen a lot of that already. Today, we can all participate in some way with our experiences skills and ask those really important questions. The why the, why not
Linda Powell: Who knows the answer, who can help effect positive change. And as we started at the very beginning. How can I help. So again, thank you so much for the opportunity. And I don't know if this time for questions, crispy.
Kristi Coldwell: Sorry, I wasn't, I was muted. There's actually time for perhaps one question.
Kristi Coldwell: Let me just look back where it was. So when you're trying to influence policymakers. What happens when there's changing government
Linda Powell: You keep on working on it.
Linda Powell: That we've been involved in many different situations where governments have changed multiple times over a period of a long time. And, you know, we started in 2012 and 14 get getting
Linda Powell: Involved and it just requires persistence and patience and we often talk about passion and purpose. Just keep going and it involves re educating a whole new group of people and ensuring that we try to find those champions and leaders who will help move the bar forward.
Kristi Coldwell: Right, thank you so much. Linda and Marie and really I think it was an enlightening discussion hearing how when you see a need and you can actually take some action towards addressing that. So thank you for sharing.
Kristi Coldwell: And that actually leads us to our next presentation, which is on transplant recipients. So transfers to be a focus and it features Brenda brown and Donna heart and licious who are going to be discussing with you that role of physical exercise in transplant health
Liz Schick: Summit, nah, not know
Kristi Coldwell: Liz. Thanks, Liz. So Liz
Kristi Coldwell: I will actually, I suppose, hand it
Kristi Coldwell: Over to you. I just saw you unmute so very good timing and I know that your panel is going to explore some of the history of mental evidence as well as offer some examples for have sports and
Kristi Coldwell: Physical activity can improve transplant health. So I will now hand it over to you to start your panel.
Liz Schick: Hello there. I'm just trying to get my husband to turn the TV off because it's actually nine o'clock in the evening here in Switzerland.
Liz Schick: So, Brenda. Have you got control of the screen, you do
Brenda Brown: I did. I'm just going to make it start at the beginning of the slideshow for us.
Liz Schick: Fabulous.
Brenda Brown: Just get it up there for you, Liz.
Liz Schick: So, oh thank god. We've got you Brenda
Brenda Brown: Here I've got your back, lady. I got your back.
Liz Schick: Thank you, darling. Okay, so I'm even being told you. I am so that will help. So as you can see. Good evening everybody or good afternoon to you all.
Liz Schick: My name is Liz shake and I'm a mother of two quite elderly children who are at median THEIR 30s and I'd be married to my husband ran a since 1984 and living in Switzerland.
Liz Schick: I've done all sorts of things in my life. Dress designer fitness instructor I on a sport shop and our on our hospitality business and I also work, the Swiss transplant, which is the National
Liz Schick: Foundation for organ donation and transplantation in Switzerland. I created Tucker's that some of you may have heard of which is a transplanted venture camp for kids, kids.
Liz Schick: And I'm a board member of the world transplant games Federation since 2011 and currently their money, Penny. The honoree Secretary
Liz Schick: So in 1998 I had a liver transplant and I've been competing in summer and winter games since 2001 and I organize the with my colleagues here in Switzerland, the Winter Games in 2012 and 2018
Liz Schick: So,
Liz Schick: I'm here to give you a quick tour actually of the world transplant games Federation.
Liz Schick: And here we have some wonderful vintage photos. This is a Dr. Morris slap back the founding president of the World transplant games Federation.
Liz Schick: Morris was actually a transplant surgeon and a great sportsman. And as you can see from this photo from his personal album from 1977
Liz Schick: It was running with a patient that gave him the idea of organizing championships for transplant recipients when he realized that this policeman here.
Liz Schick: Could actually run as fast as he could. The second photo is the second transplant games that Maurice organized and as you can see there was already a Team Canada and you can see them there in the crowd. Okay, Brandon, we could move on.
Liz Schick: Our current President, Mr Chris Thomas often refers to our world transplant games as our red Ferrari that we only take out of the garage every two years.
Liz Schick: But we actually do more than that. We have a mission, which is more transplant recipients more active more often and there on the screen, you can see the world health organizations recommendations for physical activity for normal people.
Liz Schick: Most people. I mean, speaking of the general public here do not do as much physical activity as up on that screen.
Liz Schick: We at the federation are concentrating on what we call our pyramid, which you can see on the right there.
Liz Schick: We're looking to help newly transplanted recipients. Get moving as soon as possible to help them regain
Liz Schick: their full potential to benefit as much as possible and for as long as possible from this amazing gift of life that they have received
Liz Schick: And we would like to help as many recipients as possible to move up that pyramid. Hopefully ending at the top at their national or at the World transplant gains.
Liz Schick: And before we go on, take a note, please have my friend Steve sitting there in a wheelchair because will come across them a little later on. Okay, Brenda
Liz Schick: But the Federation is not at all, all about competition and like I hate doing competitions. It makes me have sweaty hands.
Liz Schick: We want to help people get moving and keep them moving. So as part of this plan. We have devised the fit for life transplant ambassadors who came on board to help us promote our message in their respective countries acting, not only as ambassadors, but also as transplant bodies.
Liz Schick: We also created after we've gone on to slides to father
Liz Schick: went missing one, nevermind.
Liz Schick: We've also gone on to create the billion steps challenge which you can find on our website with the view of walking there we go to the moon and back.
Liz Schick: This challenge is on now and goes on until the 13th of December, so please go online, on the federation website and sign up and get more steps going to the moon and back.
Liz Schick: We also created the refit for life for the people at the bottom of our pyramid, but we will be actually diversifying with new videos and programs for a wider audience.
Liz Schick: So we could go on. Please.
Liz Schick: In fact, that the photo I wanted to show you before was the images of our worldwide worldwide transplant community.
Liz Schick: So before we saw that a lot of people did less exercise during lockdown. We actually did much more and
Liz Schick: Thirdly, we go back to the one with all the different photos. Those are people all around the world, all different ages different active activities and it was really wonderful during lockdown to see
Liz Schick: To be able to sort of keep in touch with everyone and the fact that we had zoom and all these different platforms made it very easy everyone could stay connected and feel included
Liz Schick: So we could move forwards, we still continue collaborating with national and international organizations such as the transplantation society and your wonderful organization.
Liz Schick: To help the advance of research in this area opening doors and networking for all of us. And everyone. Well, I think we're all open to ideas for collaboration and more research.
Liz Schick: We're working on a research institute and putting together a library of publications on physical activity and transplantation are also in the process of collating
Liz Schick: A lot of medical papers that we have managed to get together over a long period of time. And these are being looked at by our medical committee.
Liz Schick: So my last message to you is they say, a journey of 1000 Miles starts with a single step. And here again. Yeah, it's my friend Steve and there you can see he certainly changed.
Liz Schick: He even has pink Han out the Summer Games in Newcastle. Some of you might recognize him. So finally, I would just like to say, wherever we are in our journey. Let's think of Steve. Let's keep going forwards. Let's aspire together to be fit for life. Thank you.
Thanks, Liz.
Brenda Brown: OK, so now I'll move on to a little bit about my story and vendor brown. I'm from Vancouver, BC. I'm a mother of three and a grandmother of three.
Brenda Brown: I'm project manager for IBM. I'm also recently certified yoga instructor. I actually just added to my certification this past week with an additional 50 hours of yoga.
Brenda Brown: I'm also a kidney transplant recipient through the parent exchange program. My daughter donated through that in 2013
Brenda Brown: And I'm the President and the Canadian trust fund Association. I was the project manager of the Vancouver Canadian transplant gains in 2018 and we recently hosted the 2020 world Winter Games in bounce and I competed in both
Brenda Brown: So more to my story start I was diagnosed with Idina property in the in my early 40s.
Brenda Brown: Who would have known that in 1989 when I had that beautiful little girl over there in that picture that she would actually be the one that saved my life.
Brenda Brown: But my kidney diseases undiagnosed for years as the symptoms were disguised through most of my pregnancies through different symptoms.
Brenda Brown: At the same time in 2009 I left my husband and I was a single parent. I had one son with special needs. And I went back to school and decided to finish my degree.
Brenda Brown: All at the same time I started dialysis and so all I think underneath all of that stress, I might health was the reason it started to decline.
Brenda Brown: And so my ability to do sports that I love so much like swimming and baseball were denied.
Brenda Brown: But my daughter at 22 stepped up to donate her kidney. And so even though she wasn't a direct match. Like I said, we were able to get go through the exchange program.
Brenda Brown: And get that much needed transplant in 2013 so the recovery was long and it was slow. Do you do an infection as it kept me in and out of the hospital for over seven months.
Brenda Brown: But when I was finally well enough. I am the first thing I wanted to do, aside from having a shower. Once all the tubes came out.
Brenda Brown: Was get back to playing baseball and going swimming. So getting back to activity. I started baseball with my kids. Both of them are on my mix team.
Brenda Brown: And I started back in the in the lake with sup paddleboarding and yoga and I also decided to start a 20 2015 and 2016 ladies mozzarella competition up at Whistler, which was a 10 K
Brenda Brown: Nothing like going bigger go home. Let's do a 10 K obstacle course.
Brenda Brown: But let me get back go back just to stop the same year that I had my transplant. My uncle also had a lung transplant earlier that year. In February 2013
Brenda Brown: We would be the third and fourth transplants in our family and he's actually the person that introduced me to the CTA he started sending me links to the games and the transplant trots saying, hey, wouldn't it be cool if we did this together, but I never thought it was for me.
Brenda Brown: I kept telling myself I was not really an athlete. I wasn't fitter good enough, but I could do a walk. So we decided to put a family.
Brenda Brown: transplant team together or transplant together in the spring of 2018 we called it the team can be Kyla, who's my daughter and Mike and Brenda and you can see us there in the middle with my little baby grandson on her chest.
Brenda Brown: So we thought we had to give back to the transplant community in some way and that's what the transplant charts became part of our family.
Brenda Brown: And then I started and attended a CTA chapter meeting and that that meeting was when I found out more about the games.
Brenda Brown: And that they were coming to Vancouver. So what can be easier than competing in our own backyard.
Brenda Brown: And at that meeting, I found out that they needed to games manager while I'm a project manager by trade, so I stuck my hand and next thing you knew I was running those games and competing
Brenda Brown: In my own backyard. Even though self doubt was insane. At the time, but I dusted off my tennis racket and I want to gold me gold medal in my age group. I also want to gold medal in shock quit and a silver medal in ball throws so baseball paid off.
Brenda Brown: After the success of those games. I decided to put my hat in the ring SBC director because Margot Benson. He was a double lung transplant decided to step down.
Brenda Brown: And a couple months later I throw my hat in the ring for president, not realizing that I'd be selected. It's been a whirlwind, and an honor these last few years to be a part of the CTA
Brenda Brown: And before I knew it, we were also throwing their hat in the rings. As for the world. Winter Games and started focusing on putting on a world
Brenda Brown: A world transplant games as they were all 17 countries were coming to Canada. Before I knew it, and I'd only been part of
Brenda Brown: The CTA for a couple of years at that point in time, and I started decide, well, I better dust off the skis. I hadn't skied since before the transplant.
Brenda Brown: And I'd never raced before and it was racing against Liz who lived on a scale, so that was fun. I didn't win any medals and downhill skiing, but I didn't come in last either. So I was super proud of myself.
Brenda Brown: I also curled but I hadn't curled since I was in high school I did win a medal and bronze so
Brenda Brown: It was a interesting opportunity in these to be a part of these games.
Brenda Brown: But this summer, we were supposed to put on the Winnipeg Summer Games, we never were able to do that, due to coven so we hosted our first ever virtual games, I played tennis and did my first ever three kilometer race walk
Brenda Brown: The virtual game ends for not the same, but it keeps us moving and it keeps train the forefront and also encourage the community to get out and exercise more and share videos, photos and connects with connect with each other in a time. I think we really needed to connect
Brenda Brown: It was really an uplifting experience for many of our community and enjoyed seeing all of the participation, the CTA also completed this past weekend over Thanksgiving are moving with thanks challenge there is a lot of participation and we can compete completed over 1900 kilometers.
Brenda Brown: With everybody participating aiming for 2000 my
Donna Hart: Talk is on like two minutes.
Brenda Brown: Okay. Thank you Donna
Brenda Brown: And
Brenda Brown: Later this month and I can CTA is participating in the Scotiabank virtual marathon. I'll be competing the five kilometer and the 10 kilometer events.
Brenda Brown: We hope to coordinate a winter virtual event in February. I'm also putting a family team together to compete in the billion steps challenge that was already mentioned.
Brenda Brown: But it's more than just the games of the CTA, it's about the community and the kids and the families and the donors and the donor families.
Brenda Brown: And the support at the games where everyone everybody cheered for everybody from the four year olds to the 92 year olds and it's the support and the celebration of the lives being lived
Brenda Brown: Everyone is there because they wouldn't be here without the gift of life from everyone else. It's the beautiful and the special things to participate and watch the five year old jumping the cross that finish line.
Brenda Brown: I encourage you to volunteer and decrease it to dissipate. If you ever get the chance. Thank you.
Thanks.
Donna Hart: Oh, thanks. Brenda. Hi, my name is Donna and I was diagnosed with heart failure in December 2014 I was listed in January 2015 and received the gift of life.
Donna Hart: And new heart in May and I've competed in three transplant games at Toronto and 2016 Vancouver in 2018 and the world transplant games in 2019
Donna Hart: Next slide.
Donna Hart: My first transplant games were seeing my post transplant. When I was home recovering and my insight was that it's easier to go from 10 to 11
Donna Hart: Then from zero to one. The lesson I learned is that if you can dream it, you can do it for each event I entered I've studied the existing times and set my side on it.
Donna Hart: I post the times on the fridge and taped to the back of the bedroom door this small strategy helped me with my focus I measure everything how fast I'm swimming each length, how many meters I swim in the same with cycling.
Donna Hart: I am not a gifted athlete, at times, it felt like I was crawling out of the dark well. And my hands with knuckle
Donna Hart: Sometimes I would pure over the edge of the well and I could see the light only to slip back need to regain my foothold.
Donna Hart: I started back in the pool in September 2575 meters. It was at a brown and dizzy and hanging on to the lane ropes to keep my balance.
Donna Hart: My swim coach would follow me up and down the lane, just in case like died. Well, it was swimming and his advice was no set X and some days. That's an easier goal to accomplish than others, but it is good advice for transparently next screen.
Donna Hart: Next,
Donna Hart: The Secret visualization is really important. I visualized every aspect of my race of visualize myself standing on the podium and that's what I got.
Donna Hart: When I visualized myself only winning the gold. That's what I got put out what you want in the universe will hear you. When I'm not writing or cycling. I listened to music that is about winning. I had a playlist and I listened to those songs daily
Donna Hart: And especially before I went to the pool or I hopped on my bike, I would play the soundtrack over my head while I was training. I don't profess to know how this work, I can just tell you
Donna Hart: On what, to me, I changed my mindset for maybe
Donna Hart: Two. I can do this. I have social anxiety and I get really nervous before a race. This is not where I want to spend my energy. I work hard to keep myself calm by listening to meditation tapes.
Donna Hart: Leading up to the race. If I have time in between swimming races. I will listen. Then, as well. I'm chasing the feeling I get when I dive in and everything is still and calm, quiet.
Donna Hart: Every stroke every movement is deliberate and I can feel with each kick and pull that I'm moving forward. I am ready the races against myself.
Donna Hart: My time is the only time that matters. And I want to be faster than my last race. I want to finish the race with nothing left.
Donna Hart: So much so that getting out of the pool is difficult. I'm not worried about what's coming next, I'm ready. I've trained for it. And if I've met that goal. I'm satisfied.
Donna Hart: It goes without saying that winning can be fun and my top 10 tips for winning outside of dedicated training schedule is to enter events that everyone else in your age group is afraid to enter. And now that competition feel down right at the start.
Donna Hart: My final tip is to join a club make connections with people who are equally as passionate about sport as you are join a cycling club during the masters Swim Club or a bowling league, they will be your cheerleaders.
Donna Hart: My final slide is if you can dream it, you can probably do it. So, dream big. Thank you.
Kristi Coldwell: Excellent, thank you so much to the three of you. That was a really, I think, encouraging and enlightening conversation. I can see from the converse air from the chat box that everyone has a lot of really fun memories.
Kristi Coldwell: About the game. So thank you. And we do have one question, wondering about, if there's any funding available for structured physical rehabilitation post transplant and if anyone knows if it's happening anywhere.
Liz Schick: Lives here. It depends what country are in of course you're all in Canada, but I'm in. I'm in Switzerland, there is funding for certain things, but I couldn't say for Canada and I suppose it's different in different areas.
Kristi Coldwell: But Brenda you're muted.
Kristi Coldwell: Brenda, can you unmute yourself.
Brenda Brown: Sorry, I did in one spot and then it wasn't in the other. There isn't specific funding available on a national wide basis. I know for the games. There's often some fundraising that goes on in individual provinces.
Brenda Brown: For this specific to get to the Games. I know that as part of our mandate for CTA, we are looking at other ways to help
Brenda Brown: With fundraising and looking at trying to build a bursary funding for sport in our, in our coming mandates and planning.
Brenda Brown: It's ongoing right now and we're looking at being able to present something in our AGM next year as two ways that we're looking to the future for doing that because we realize it's really lacking in the country.
Donna Hart: If you're a cardiac patient, you probably in your area have access to cardiac rehab and that is really where like, I started with cardiac rehab and they set guidelines for me as to what I could do. Um, and that was really helpful when I was starting out.
Kristi Coldwell: Great, thank you. Um, that leads me to the last question on and this is more a little bit about the pre transplant. Was there any special physical activity or exercises that you did to help you prepare for transplant.
Donna Hart: Well, I got in trouble doing that. So that is quite funny, because I was waiting impatient. All I could do was walk but I thought I would get in shape by doing push ups and was told.
Donna Hart: That that was a no go.
Kristi Coldwell: Okay. Um, and they see that still van. Can you hear me, I know you said you just messaged me saying that you might have an answer. I don't know if you wanted to.
Kristi Coldwell: chime in.
Kristi Coldwell: Okay.
Sylvain Bédard: I know that
Sylvain Bédard: Yeah so Montreal Heart Institute has a
Sylvain Bédard: Training Center affiliated with and all transplant recipient that has have free access on special hours to be trained with someone that is surprise surprise supervising them.
Sylvain Bédard: So I am courage you, I encourage everyone to reach for their team and telling them that they're actually saving money. So going back to marry Marie saving money sending you for free access because it helps you a lot and getting better and healthier. So, this is it. And yeah, that's a
Kristi Coldwell: Great. Thank you so much. And again, I encourage you all. If you haven't been to just take a look at the chat box. There's some really great dialogue going on in there and some sharing of resources.
Kristi Coldwell: So thank you again to our amazing panel and that now leads us to our next panel which will feature Murray or not. Murray. Sorry, guys. It's late in the day.
Kristi Coldwell: Features Larry or folk Shelby gielan and Dr. Leon stalker who are going to share with you their experience in research and how that pertains to peer review knowledge translation as well as training. So I will hand it over to Leanne to begin with introductions.
Leanne Stalker: Hello everybody. And for those of you who don't know me, my name is Dr. Leon stalker, and I'm a research manager with the sea chirpy
Leanne Stalker: I'm really happy to be here today to help moderate this session on training knowledge translation and peer review and to introduce you to two amazing
Leanne Stalker: Patient family and donor research partners who today are going to discuss their roles and research and how their own knowledge base has grown through their experiences.
Leanne Stalker: Working in research program. So with that, I'd like to introduce our two fantastic analysts today and give them the opportunity to introduce themselves to you. So we're going to start with Larry
Larry Worfolk: Good afternoon, everyone. My name is Larry Woolfolk I live just outside Vancouver in DC. I was born with cystic fibrosis genetic disease affecting my lungs and digestive system when my lungs completely failed. I was fortunate enough to receive a double lung transplant 12 years ago.
Leanne Stalker: Okay, and Shelby
Shelby Gielen: everybody. My name is Shelby feelin I'm a two time liver transplant recipient I received one at age of 14 and my second one at the age of 27
Shelby Gielen: And I recently found out I'm in chronic rejection and I'm going to need a third liver transplant. At some point, if I'm lucky enough
Shelby Gielen: I live in Maple Ridge near Vancouver, BC and I've been involved with patient oriented research the past three years on many different levels. When you pass it. So I'm really excited to be here today.
Leanne Stalker: Awesome, thank you so much to both of you for being here today to speak to our audience. So I'm going to pose a couple of questions to our panelists today so we can get an idea of their experience.
Leanne Stalker: So the first question is how did you first become involved with research and what training. Did you have to have or were you provided with to build your capacity as a patient partner.
Leanne Stalker: Larry, we'll start with you again.
Larry Worfolk: Well over my life I've been the subject of quite a few research projects and I was amazed to learn that as a patient partner, I could actually be a part of research without being the subject of the research.
Larry Worfolk: I've been able to sit and talk with researchers and found the contrary to my image of big heads and white lab coats their normal people just like us and welcome our input.
Larry Worfolk: As a patient partner, we can collaborate with researchers and be a part of the process, which for me is pretty exciting when we can do that we can help to make sure that research is meaningful to us and the results are translated in a form that we can understand and use
Larry Worfolk: I first became aware of patient and family partnerships. When I was invited to a day long training session called patient oriented research.
Larry Worfolk: Which was led by the BC Support Unit and sponsored by the transfer Research Foundation of BC wasn't too long after that that I did more training with the CD tarp and then because I
Larry Worfolk: I wouldn't say I love training, but I do like to really get a good grasp on what I'm doing. Before I start doing it. So from there I went on to further training with the patient voices network here in DC, and also did some onboarding training in peer review for funding grant applications.
Leanne Stalker: Excellent. And surely, can you give us an idea of how you got started on your journey and research. Yeah.
Shelby Gielen: Sure. I was actually forced asked to be a part of a grant review panel for the transplant Research Foundation in BC here. And that was my I jumped right in that was my first experience and I had such a great time that I jumped in and did
Shelby Gielen: A workshop with the BC Support Unit. And that's actually where I met Larry and I learned how to be involved and how to get more involved with the research process, how to become part of more in depth.
Shelby Gielen: With the peer review process with
Shelby Gielen: Transferring
Shelby Gielen: The knowledge gained from research into
Shelby Gielen: You know, people helping people put that into practice and just learning how to get a little bit more involved and
Shelby Gielen: Communicate, you know what, what I could do as a patient with my knowledge. How to kind of help communicate that into research for those doing the actual research so
Shelby Gielen: I did some training there. I learned how to get involved in more opportunities that were available and where to find those opportunities and
Shelby Gielen: Basically just using my knowledge to help improve research being done and and that training really increased my capacity in learning how to do that. So it was a great experience and from doing that. I was able to
Shelby Gielen: You know, then become involved within a number of health authorities in in BC and just in different projects within our province and nationally and from there you just kind of learn as you go. And that training was continued and it just really helped out with everything.
Leanne Stalker: Before we move to our second question. I think we're going to launch our first poll question to the audience. So we could launch that
Leanne Stalker: Excellent. We just wanted to see if anybody in the audience has any involvement or experience of being involved in research before we move to our second question.
Leanne Stalker: All right, you guys have a little bit more time to answer the
Leanne Stalker: Questions. Perfect.
Shelby Gielen: Interesting to see
Leanne Stalker: So it looks like some people on our call have a patient partner on a research project, which is amazing 21% have not participated yet so hopefully this
Leanne Stalker: section will
Leanne Stalker: To move you towards participating in the future. Okay.
Leanne Stalker: All right. This brings us to our second question.
Leanne Stalker: Which is that I would really like to hear more about exactly what types of projects, the two of you have worked on that have involved the concepts of peer review and knowledge translation.
Leanne Stalker: Before we actually get to the question. I'm just going to do a really brief explanation for the audience about what those terms mean. Since we are familiar with the fact that they may not be familiar to you.
Leanne Stalker: So the first thing that I'm going to ask about is Larry's experience with peer to peer review. So the definition peer review is
Leanne Stalker: A scientific concept or a research project being reviewed by our peers or by a community.
Leanne Stalker: For its effectiveness and for its ability to actually be accurate and representation. So this is really important in science and it's really important that patients, families and donors participate in this process.
Leanne Stalker: So Larry is going to give us a brief rundown of his experience with peer review.
Larry Worfolk: Well, I think it was specific to to peer review I I worked doing peer review on grant proposals for the Vancouver coastal Health Research Institute, as well as the transplant.
Larry Worfolk: Research Foundation of BCS adventure grounds. They were very interesting
Larry Worfolk: I find it fascinating to read the things that that researchers have thought of to to go forward with their research.
Larry Worfolk: I enjoyed being part of the process. It's. Let me give a bit of a patient's perspective to
Larry Worfolk: To the reviews.
Larry Worfolk: Knowledge Translation as well.
Larry Worfolk: Some people are writing their grant reviews. They say that their knowledge translation is going to be publication in a in a peer reviewed journal
Larry Worfolk: Well, that's fine. But what does that mean to me as a patient how if you just publish their how quickly is that going to get through to my care team and
Larry Worfolk: And how else can we can we distribute that information that is important to patients do we need to to do some sort of informational pamphlet be given out to patients or something in electronic form.
Larry Worfolk: Another
Larry Worfolk: Project that I'm involved in is a pharmacogenomics project, which I find really fascinating. It is involving the examination of drug response based on a patient's DNA profile.
Larry Worfolk: And again from being a patient partner, I can contribute to
Larry Worfolk: How how people are going to be right into that study what what questions are you going to give to to a patient that will excite them about being part of this. How are you going to describe the benefits to them.
Larry Worfolk: How are you going to distribute that information. Once, once the results are in. And is it possible to to then translate what you've learned from that project into into other drugs and
Larry Worfolk: DNA profiles. So I find those things really interesting
Larry Worfolk: I am I'm part of some other work. I'm on a patient advisory panel on the prom project.
Larry Worfolk: I'm working on a patient and caregiver advisory board that's developing a patient resource portal to use nationwide. We all know that.
Larry Worfolk: When we reach out, especially in the early days trying to find information is a bit spotty and knowing where look and hopefully this resource portal will be will be a first and last stop because it'll be quite comprehensive
Larry Worfolk: Yeah, just just lot of interesting things I think through my experiences I've learned that if you want to get involved. You can how deeply you become involved is solely up to you. And I find it a great experience.
Leanne Stalker: Excellent, thank you so much for your comments. We're going to move forward to the second part of our of our question.
Leanne Stalker: Which is going to be to ask Shelby, she can share her direct experiences with knowledge translation. So Larry touched on the topic of Larry of knowledge translation as well.
Leanne Stalker: But just to define this quickly. For the rest of the audience we consider knowledge translation. The idea of how we communicate research, science to the average person.
Leanne Stalker: Or to the normal community. So this includes the patient family and donor community, but it also just includes everybody who doesn't happen to be a clinician or a scientist so Shelby, take it away.
Shelby Gielen: Sure, um, you know, when it comes to knowledge translation and just kind of moving that knowledge of the research from that lab into kind of the people who can can use that knowledge in a practical sense
Shelby Gielen: Anytime. I've been involved in projects or even, even when it comes to reviewing grants and giving that feedback.
Shelby Gielen: It's been really interesting in giving, giving that feedback from a patient lens. Because it, it kind of helps expand the knowledge in a way that is accessible and
Shelby Gielen: more relatable in a way that can get that knowledge across to all populations, you know the the research kind of side of things, but also to
Shelby Gielen: You know, say for example the transplant population or the population that's going to be affected by it. So it helps ensure that the info is shared kind of
Shelby Gielen: From you know the communities that are actually being studied. And we can kind of be the bridge between the researchers and the community that's being studied. So
Shelby Gielen: I think that's really important. And that's, that's such an incredible thing to realize for, you know, especially for patients that
Shelby Gielen: Or the people that are watching right now who have not been involved in in research and that are really thinking about getting involved is
Shelby Gielen: You can be that bridge and it's really important to realize that as we have the knowledge from our lived experience to help
Shelby Gielen: bring that forward from from our communities of being that lived experience to be that bridge and use our experience to do so because we're already within those groups.
Shelby Gielen: We know the important places where that knowledge from those research projects can be dispersed to really quickly, we know where we can get that knowledge to where we can translate that knowledge to and get the information out quickly. You know, for example, social media groups.
Shelby Gielen: An example of knowledge translation that I would give in terms of feedback if I was doing a peer review would be suggesting
Shelby Gielen: Perhaps a
Shelby Gielen: Patient event A or doing setting up a committee where we could have a you know a patient on board to help give that lens and that sort of perspective.
Shelby Gielen: For knowledge translation event for patients in order to spread the information and get that out to to a population so
Shelby Gielen: You know that those who are doing a research project incredible and they've got all they've done all the work, but in order to get that information to
Shelby Gielen: To everybody and all of those populations, they, they need. They need our help they need us in order to get it to all the places it's required. So that's why it's so important to get involved.
Shelby Gielen: In especially in that knowledge translation piece. It's kind of the final piece to the puzzle.
Shelby Gielen: That's what I'd have to say, well, knowledge translation.
Leanne Stalker: Excellent. Thank you so much. And I just wanted to say that your quote you can be the bridge or we can be the bridge. That's my quote of the day for today.
Shelby Gielen: Yeah.
Leanne Stalker: Yeah, I think it's so important for patients and families and donors to recognize the importance of their role in research and that they really are the experts that the researchers counter counter counter can't account for
Leanne Stalker: And so with that, just before we have a really quick Q AMP a session. I think we're going to launch our second poll. Which is going to ask the audience what they'd like to learn more about which will help us to gauge. Some of our future perspectives and future communications.
Leanne Stalker: A couple more seconds.
Leanne Stalker: Well, everybody is answering the poll. If you do have any questions for Larry or Shelby about their experiences, please feel free to put them in the chat.
Larry Worfolk: Box.
Leanne Stalker: Or to raise your hand.
Leanne Stalker: Alright, looks like people are interested in all of these categories partnering in a research project did did pull ahead to be the winner in this horse race with 41% of voters.
Leanne Stalker: But 29% are interested in knowledge translation and 15% in training and peer review and important to note, you could be interested in more than one of these categories as well.
Leanne Stalker: Alright, I'm going to leave it to Christie to moderate the questions. Thank you so much for joining us for this session and just my thanks to Shelby and Larry for their for their help running the session.
Leanne Stalker: They planned a session all on their own. And it's been fantastic like to be a part of it. So thank you so much.
Kristi Coldwell: Thank you so much. You guys on of course you're my fellow pizza here in BC. So thank you for being with us.
Kristi Coldwell: But I do 8am for sharing that first hand account of what it can look like actually to be a patient partner in research. So thank you for that.
Kristi Coldwell: We do have a question. What would you say has been the most difficult part of actually getting started in research as a patient partner or family member or, you know, living donor. We never limit it to just the patient partner. But what would you say has been the most difficult part
Shelby Gielen: You know, I can take that. I would say it was just trying to figure out where to get started.
Shelby Gielen: For me it was a little bit. I'll be honest, it was a little intimidating at first I didn't quite know how to get involved. So for me it was
Shelby Gielen: Just caught making that initial call and making that first contact with my provincial. It was the BC Support Unit in BC. So every province, I believe, has a similar equivalent patient oriented research.
Shelby Gielen: Organization. So I would encourage you to maybe reach out
Shelby Gielen: One of us can can help you get in touch. If your province does not have that reach out to us and we can help you get in touch because it's just such an important
Shelby Gielen: Thing to to get involved when we're with and we can certainly help you if your product doesn't have that. But just making that initial that initial step was probably the big one for me.
Kristi Coldwell: And Larry Do you have any tips.
Larry Worfolk: No, I think it's a you know i i do agree.
Larry Worfolk: To reach out and try to find if your province has
Larry Worfolk: Has a support units.
Larry Worfolk: They give really really good training. I was very impressed with
Larry Worfolk: With everything that I've been involved with with them, which is
Larry Worfolk: A few different things now. And if you're involved with the training. I think that you know way automatically leads to other opportunities.
Larry Worfolk: The training that I had researchers were there as well as potential patient family donors. So you get to, you know, to meet them and and have a chat, find out what they're interested in.
Larry Worfolk: That's how I first became involved as a as a patient partner NBC was with a researcher that I met during one of those training sessions and then it's kind of spread from there and
Larry Worfolk: Of course, being involved with the CD tmp is really important. They do great work. And there are loads of opportunities through the CD therapy.
Larry Worfolk: Just make it known that
Larry Worfolk: That you want to kill the old
Shelby Gielen: Yeah, the CD tmp. You can always get in touch. They're very they've got a lot. They're always willing to get you engaged with research nationally as well.
Kristi Coldwell: Okay, perfect. Thank you guys and that will conclude our session on patient engagement and research. So thank you so much to each one of you and
Kristi Coldwell: So I know that probably a lot of a lot of us here are getting a little bit stiffener seeds. We've been sitting for a while now. So it's a perfect opportunity to actually introduce to you our can restore panel.
Kristi Coldwell: featuring Dr Sunita Mathur, Dr. Tanya john notice Ferrara, and sorry I'm Manila for raw and I am so sorry. Because I know I completely bungled your name, so please forgive me.
Kristi Coldwell: But you are going to get us moving and just feel a little bit more active as well as share a little bit about your project. So I will hand it over to you to take it away.
Sunita Mathur: Great, thanks. Kristi. I will get started. I'm just going to share a couple of slides and then yes, we're going to get you guys up and moving get everyone up and moving
Sunita Mathur: So thanks for having us join the forum. Today we are can restore and we're a network dedicated to physical activity and exercise for organ transplant recipients candidates and living donors.
Sunita Mathur: Today we're going to host an active break for you so you can get up and moving and experience a different type of exercise.
Sunita Mathur: My name is to meet a matter. I'm an associate professor and the physical therapist. I work at the University of Toronto and I'm the co Chair of can restore
Sunita Mathur: My co chair is Tanja notice for HANA and she's an assistant professor in physical therapy at McGill University for 2010 he cannot join us today.
Sunita Mathur: And lastly, I want to welcome Anguilla de pollo for Hannah, who is a postdoctoral research fellow at the University of Toronto and she's going to be leading the dance today.
Sunita Mathur: Before we get you up and moving, we're going to tell you a little bit about our network.
Sunita Mathur: So can restore our mission is to work towards
Sunita Mathur: Getting you healthy and active through physical activity and exercise, you can see a lot about what we do on our website can restore.ca so encourage you to go there and check it out. I'm just going to tell you a few of the things that we do that you might be interested in.
Sunita Mathur: So the first is we put together the best evidence for exercise training. So the research that comes out about exercise and physical activity.
Sunita Mathur: Tammy and I conduct a lot of this research, but we also put together a synthesis of all the literature and recently we put together a big
Sunita Mathur: position statement that summarizes the literature that supports why exercise is so important, before and after solid organ transplantation. So you can see a copy of this article on our website. And we also have some
Sunita Mathur: More plain language. Some reason available to make it a little bit easier to understand.
Sunita Mathur: We also host events for transplant candidates recipients living donors and families so
Sunita Mathur: A couple of events that we've done in the past were educational events about nutrition and exercise and physical activity sports training.
Sunita Mathur: We also partnered with the world transplant games Federation's fit for life movement to help us launch events in both Toronto and Montreal and we have lecture recordings of our talks from these events available on our website.
Sunita Mathur: And finally, you'll also find out our website exercise tips and exercise videos so home programs, things that you can do it on your own, that you can follow along and we're hoping to add more videos to our website, so please do check out our video. Video resources.
Sunita Mathur: I'm now going to pass it over to Mandela, who's going to talk to you a little bit about what home base camp exercise. It's all about why it's beneficial and then she's going to lead you through the exercise itself.
Manoela de Paula Ferreira: Hello everyone, I am. I know the policy here and we're going to talk about the home base then exercise for salt organ transplant candidates recipients and leaving box.
Manoela de Paula Ferreira: So exercise training has the potential to improve exercise capacity is trying flexibility balance in quality of life.
Manoela de Paula Ferreira: Installed organ transplant candidates and recipients and we're over the exercise properly can help leaving donors recovering process after transplant.
Manoela de Paula Ferreira: Especially for the year functional mobility include abdominal back and pelvic pelvic muscles.
Manoela de Paula Ferreira: People in this whole organ transplant candidates and recipients group all engage in low levels of physical activity facing barriers to being physically active.
Manoela de Paula Ferreira: Two different reasons, including travel challenging access to rehabilitation centuries therapy schedules and the costs related to do it.
Manoela de Paula Ferreira: As solution for this challenges is their home base an exercise program. Don't be a covert 19 pandemic, the opportunity of using your tool means to deliver home basic exercise has proven itself as a solid alternative to bringing well being without leaving home.
Manoela de Paula Ferreira: The home base of this exercise program can be an option for salt organ transplant candidates recipients and leaving dollars.
Manoela de Paula Ferreira: This is enjoyable and as exercise involves music constant postural changing challenging body movements improvement on creativity.
Manoela de Paula Ferreira: And can be done for all people with different levels of physical activity and presence or absence of disease.
Manoela de Paula Ferreira: The desk excellent exercise proposal here does not required prior dancing experience this type of exercise increase participation in monthly levels of physical activity in the comfort of the patient home.
Manoela de Paula Ferreira: Making this exercise accessible anytime and anywhere without the barriers of having to go to the rehabilitation century.
Manoela de Paula Ferreira: So now I do like to invite you to dance with me. You only need that chair without wheels. Please follow me through all the movements. The first dance. We are going to perform on the sitting position. And then on the second one we will dance in the standing position.
Manoela de Paula Ferreira: That you think action on your brief thing and respect to your limits. If you need to rest, please just sit down and relax. I hope you enjoy and I do like to invite you to turn on your camera. So all of us will be able to see each other and dance together.
Sunita Mathur: Man Well it's gonna get set up. We just have a quick polling question.
Sunita Mathur: I think Chelsea, or the end if you could bring that up. We just wanted to see how many of you already do dance for fun or exercise if you can go ahead and answer.
Sunita Mathur: Okay, so it's almost half and half split. So this will be a new experience for some of you,
Sunita Mathur: Mentioned, a lot of this exercise is going to be done, sitting so if you have a chair with no wheels. That's great. If your chair has to be able to just be a little bit careful and then we'll do a little bit in standing as well. So I'll let Mandela, take it away.
Manoela de Paula Ferreira: So let's enjoy the music and we'll be back.
Thank you.
Manoela de Paula Ferreira: Thank you so much for dancing with me, that was so beautiful to see things here.
Sunita Mathur: Thank you everyone.
Sunita Mathur: And we have one more polling question as well for you. And we're also going to share the link where you can find some more dances. So I'll let Chelsea early and bring up the polling question and I'll just share our, our links.
Sunita Mathur: So you can find. I'm glad to see many people enjoy. That's great. So Allah has three other longer dance programs available through our YouTube channel. You can find them here. I've also tweeted it out.
Sunita Mathur: Under the hashtag for this forum. You can also connect with Canvas store on our website or Facebook or follow me on Twitter and we hope that you'll be able to get in being more manual. And did you want to say anything else. Oh, I just want to say thank
Manoela de Paula Ferreira: You was a pleasure for me to dance with you and I am looking forward to do it again.
Manoela de Paula Ferreira: And in our YouTube videos, we have a little survey. So we will love to get your feedback about our home base fitness exercise program. What do you think, how is it was and we went to improve it for our patients. So thank you so much.
Kristi Coldwell: Thank you both. That was really enjoyable and I know it definitely got our hearts pumping and some BLOOD FLOWING AGAIN, which is excellent so sincere thank you to both you
Kristi Coldwell: And we are now going to switch gears a little bit. For our next panel. So our next panel presentation is
Kristi Coldwell: On our opt out system on presumed consent Canada's vantage point, it's something that is particularly pertinent right now in society, as I'm sure you've all been hearing a lot about it in the news.
Kristi Coldwell: Perhaps a little bit more pre coven but nevertheless, with everything that's been going on with Nova Scotia. It's been in the news a lot lately, so we are delighted to have a panel with us today.
Kristi Coldwell: To talk more about what that really means and also where Canada sits in relation to other countries in relation to presumed consent, but I will actually hand it over now to Dr. Matthew Weiss. To start off with a round of introductions.
Matthew Weiss: Thanks, Kristi. So yeah, first of all, I appreciate the opportunity to be here today. And I think this is a great program at City tip has been able to organize
Matthew Weiss: As I tell people, often the the patient. The patient and family partners are really one of the strengths of the CD tmp. And this is
Matthew Weiss: Just going to make it an even stronger partnership. So anyway, with that out of the way. I'm here with Hans Forrester and Alessandra macro Marconi, excuse me.
Matthew Weiss: Who are going to be joining me on the panel, we are all part of the, the leader initiative, which is the legislation legislative evaluation, the assessment of deceased donation reform.
Matthew Weiss: Which is looking at the hard to act which came into well as was passed on April 12 of last year. And as mentioned by Christy
Matthew Weiss: It reformed, a lot of aspects of the donation and transport system in Nova Scotia.
Matthew Weiss: But the key aspect and the one that gets the most press is what they call deemed to consent, also known as opt out consent or presumed consent. So anyway, that's, that's the basics of why we're here. Hands and Alessandra let you guys introduce yourself. Oh, wow.
Hans Vorster: Well, thank you very much. I'm still trying to catch my breath from from the dance. It's a actually married to a dancer who was with the National Ballet shoes, you're going to be delighted. But the fact that I'm getting back into shape to do old dancing with her.
Hans Vorster: But basically, I'm, as I said, yet this morning. I'm a
Hans Vorster: Transplant kidney transplant recipient and I am obviously there for particularly interested in
Hans Vorster: This particular project, which
Hans Vorster: Will would have helped possibly in reducing my wait time for for a transplant.
Hans Vorster: In what two and a half years ago, I was on for about a year and a half, which is long enough. Thank you very much. Very stressful time
Hans Vorster: I wrote
Hans Vorster: A password on through Alessandro
Alessandro Marcon: Everybody should be nice to be with you all today I'll be at virtually
Alessandro Marcon: My name is I'll send them are Conan research associate at the Health Law Institute, which is housed in the Faculty of Law at the University of Alberta our research director is Professor Timothy afield who some of you might know he's in the media quite a bit.
Alessandro Marcon: Talking about all kinds of different issues, which is kind of what we do to help our institute, we look at a lot of legal issues, but also media news and public perceptions and
Alessandro Marcon: How those all kind of intertwined into policy. So we're really excited and happy to be a part of this project.
Alessandro Marcon: And to work on exactly the outline that Matthews was talking about what I do at the institute is I kind of lead the media angle. So looking at public perceptions and how information moves to the media how information is accessible kind of information out there and how that changes.
Matthew Weiss: Fantastic. Thanks, guys. And we do have a few poll questions. I'm the first one was just a I put it as a joke to see if the technology work, although I've seen over the course. The afternoon that it has been working Chelsea, if you want to. Yeah, there we go.
Matthew Weiss: Feel free to vote that's way too long for that one. But it looks like and
Matthew Weiss: Okay, yeah, that's it's pretty close. Game of Thrones and breaking better right there, neck and neck but but anyway, you could go to the second question, which I'm curious. Before we present anything
Matthew Weiss: What people's thoughts, where
Matthew Weiss: We're going to see first of all just who everybody was on the line, make sure we understand
Matthew Weiss: Who we are presenting to
Matthew Weiss: You, but he's a given the responses.
Matthew Weiss: Move on to
Matthew Weiss: The results there.
Matthew Weiss: Okay, so
Matthew Weiss: Good in a lot of transplant recipients or family member of a donor. And one last question before we, before we get started.
Yes, this is a
Matthew Weiss: Really, I'd like to understand where everybody was thinking before your
Matthew Weiss: Before we go before we go.
Matthew Weiss: Oh, sorry. Yeah, people are asking me which one is my favorite. Yeah, it was. Breaking Bad, just by just by a hair. I just, it's a game of thrones just kind of fell apart there and lead seasons.
Matthew Weiss: Anyway, so
Matthew Weiss: The seas. Most people would think of increased. Okay. So I think that one of the things to talk about is both what is presumed consent and
Matthew Weiss: In general, and then what it is, is going to be specifically in Nova Scotia. What that legislation is and then I'm going to give it just a
Matthew Weiss: Very brief overview of what the literature has taught us about presumed consent before I hand it over to Hans and Alessandra to talk more about what we know about other aspects of how people feel about it so
Matthew Weiss: And its most basic level deemed consent is where if the four members of the population who are considered to be competent before their injury.
Matthew Weiss: Are considered to have considered to have given consent for donation if they have not registered otherwise. And there are a lot of nuances and how those systems can be constructed in one of the biggest divisions in our system or a
Matthew Weiss: Dean consent system will be judged on how hard or soft it is hard being
Matthew Weiss: If the if the patient who has potential donor has not express something they're going to the, the system would push relatively forcefully to enforce that deemed consent decision.
Matthew Weiss: Whereas a soft consent is that there is going to be approach of the family to confirm and if a family member says, No, no, look, I know he never
Matthew Weiss: Registered a No, but I'm sure my husband. We talked about it a couple weeks ago. He just didn't have time to register and he would not want it to be a donor. And that decision would have been respected respected based on the just the
Matthew Weiss: Verbally express wishes of the family.
Matthew Weiss: The, the consent model in Nova Scotia and in most of the world, frankly, is more towards a soft presumed consent, and that includes Spain.
Matthew Weiss: Which is often held up as a model of how a presumed consent model and can be effective when you actually speak to the Spanish
Matthew Weiss: Administrators of their system. We just had a roundtable with Beatrice dimming is Gil. A couple weeks ago and she was very clear that
Matthew Weiss: She doesn't even consider Spain to be a presumed consent country, and she doesn't
Matthew Weiss: Consider Spain to be presumed consent, because their approach is so far on the spectrum of a soft presumed consent that they're going to ask the family, the family doesn't have to produce any documents proving that the police person.
Matthew Weiss: Expressed any kind of reservations around the nation. They just take the know if a family expresses a know
Matthew Weiss: So I think that's a that's an important aspect and in on that call, which had members from from several different countries and a lot of different input.
Matthew Weiss: None of the none of the people on the call said that they would have overwritten a family at the bedside.
Matthew Weiss: If there was a true hard know from the family to the point that they would have had to, you know, say call security and take the family out of the room and then take the patient up to the operating room.
Matthew Weiss: Essentially, they said if we were not able to get a consensus with the family, the family would be respected, whether they are working in. And when a presumed consent or
Matthew Weiss: What is often referred to as an explicit consent model, which is the model in the rest of Canada, including Nova Scotia. Now, since the
Matthew Weiss: law doesn't come into effect until January so last couple things just to say in terms of effectiveness. There is a lot of debate in the literature around the effectiveness of the of a presumed versus explicit consent model.
Matthew Weiss: With even last year, they were conflicting literature reviews on one suggesting that a that this alone does impact the rate of donation and transportation another. That was a registry review.
Matthew Weiss: Looked at the performance of different systems and said,
Matthew Weiss: presumed consent alone didn't seem to make much of an impact, but it certainly was a component of high performance of several high
Matthew Weiss: Performing systems, but it was also a component of several low performing systems. So there was a lot more to it than then then just presumed consent. So with that, that being said, I think I will turn it over to Alessandra just because you see where the next person. I see up top.
Matthew Weiss: And the screen and let's talk about he's done some some very interesting work analyzing the social media response and the the internet response to the passage of the law, no discussion.
Alessandro Marcon: Now, great. Thanks, Matt. Just before I get going here. I think I've got a couple of survey questions as well to ask everyone
Alessandro Marcon: And we get put put those up one after the other.
Alessandro Marcon: Yes. Very interesting. So what we see, you know, there's been some talk that maybe people are going to abandon different social media sites or
Alessandro Marcon: They're going to reject them or reject using them as often. But basically the trends that we see around the world are people are using them and using more of them and using them more often. So that's interesting. We'll see. The second one here.
Alessandro Marcon: I think I have three actually
Alessandro Marcon: Yeah, very interesting. So this is again the trend that we're seeing is that social media, again, and it's
Alessandro Marcon: earlier stages of development was seen very much as a way to connect with friends and and with family and share different kind of entertainment based topics but we're seeing a lot more people using it for multiple uses including learning information will various topics.
Alessandro Marcon: The third one.
Alessandro Marcon: Do you worry about the accuracy that you're getting extreme a lot a little
Alessandro Marcon: See what we get here.
Alessandro Marcon: Okay, yeah. So kind of right in the middle there lots of people worried a little bit and a good chunk of people worried a lot as well. I think we've seen
Alessandro Marcon: Some of the social media use been exacerbated by perhaps what's going on, south of the border there and kind of this dissolution of facts.
Alessandro Marcon: And clarity around facts. So yeah, we're maybe we're seeing some of that creeping up here.
Alessandro Marcon: What our work is doing typically is looking at how information moves through people. So this could be in the popular press as well as social media, but the lines are obviously blurred between these now and
Alessandro Marcon: The easiest example to see a little. This is the fact that there's comments sections that exist on articles. So people are not only reading the article that's
Alessandro Marcon: That's published by the by the news source, but people are having extensive comments sometimes beneath it and research to show that the way that people read these comments affects how they then perceive
Alessandro Marcon: The article in the information that's in the article. So as much as we'd like to dismiss sometimes those comment boards is just crazy people screaming into the Internet.
Alessandro Marcon: It does have an influence on how we understand the material and then how we understand a topic more broadly.
Alessandro Marcon: And we know that media generally influences how people think about healthcare topics. And so the medium matters and the discourse matters.
Alessandro Marcon: That exists out there as well as with the rise of social media. It's very difficult. But we see the way that reporting is done and more popularized media change a little bit, you know,
Alessandro Marcon: Popularized media is on social media. So they might adopt their headlines to be
Alessandro Marcon: more conducive to having traction on a site like Twitter, or on Facebook or more grabbing kind of images that go along with content, which again can influence how that that contents absorb
Alessandro Marcon: So specifically, in this context, what we did is we looked at to CBC articles that were published in April of 2019. So the first article is April 2
Alessandro Marcon: And this is the announcement of the presumed consent measure that Matthew was talking about. And two days later they published an article talking about how there was a mixed reception.
Alessandro Marcon: And what we did with these articles as we basically looked at all of the comments so we saw how many people were commenting and the kinds of ways that they were talking about this new measure put forth by Nova Scotia.
Alessandro Marcon: In total, we had 512 unique people participating in these discussions, of course, we did not analyze any of the people here we respected the privacy of all of the users, lots of them are anonymous names. Anyway, but of course we didn't analyze the actual names of the people.
Alessandro Marcon: And what we saw as around 20 to 2600 total comments so around 600 initial comments follow up by 1200 replies.
Alessandro Marcon: And what we saw was a lot of kind of heated discussion and a lot of mixed interpretations of how this presumed consent can roll out. That's what we saw kind of service.
Alessandro Marcon: But when we looked in a little closer. We saw that a lot of the negative commentary was put forth by small pockets of people who are very
Alessandro Marcon: Adamant, or they contributed a lot to some of those negative sentiments. So it kind of suede or skewed how people might might be perceiving this
Alessandro Marcon: Again, these kinds of numbers are not to be seen as a bowl of a of a general population. We can't generalize these studies to say, oh, the population, things like this. It's just one tool that we have combined with surveys and combined with focus groups to get a sense of how people feel
Alessandro Marcon: The major issues that people brought up was the idea of government taking away their choice. So the government is removing some kind of autonomy that you have
Alessandro Marcon: To make a choice for yourself. Of course, the rebuttal to this would be that you have the option to opt out. And so, how easy is it to opt out. Is it
Alessandro Marcon: Something that you can do in a matter of seconds or is a laborious task. Is it a difficult task to do would be some of the information that you'd want to get out for some of these critiques.
Alessandro Marcon: There were some critiques around the ownership of the body that you know this is big government who's kind of taking over ownership and you lose the autonomy of your own body.
Alessandro Marcon: And very interesting about what Matt just mentioned, is this idea of our family. So people were very concerned and they were expressing the critique that
Alessandro Marcon: The government's going to act against your family's wishes, as, as Matt Matthew just mentioned, this is not the case. This is on the softer end of the spectrum, but this was a concern that people have, which will be a good issue to address through education and PR campaigns, etc.
Alessandro Marcon: There was also some concerns about the legality of it.
Alessandro Marcon: The if there was legal issues against the charter or the individual rights of freedoms.
Alessandro Marcon: So those were kind of the predominant negative messages that we saw and the positive messages were from advocates who are saying
Alessandro Marcon: You know this is going to save a lot of lives. It's very altruistic. It's a chance for you to offer up
Alessandro Marcon: Health benefits for other people it's a way of strengthen your community. They were lots of sentiment about being proud of Nova Scotia and that they were proud that their province was taking the lead on this and that they'd like other provinces to follow suit.
Alessandro Marcon: And that this system maintains choice because you have the choice if you don't want to
Alessandro Marcon: Donate that you don't have to. So this kind of gives us. It gives tools to increase education to help more people understand
Alessandro Marcon: What some of the issues are and how to kind of work on some of these issues so that we increase trust amongst populations and this also gives us a tool to conduct more studies like this in the future, to see if
Alessandro Marcon: A different sites or different discussions are similar to what we see here or different
Alessandro Marcon: Yeah, that's, that's it for me.
Matthew Weiss: At
Matthew Weiss: Once
Yeah, I'm
Hans Vorster: As as the patient representative on this particular panel. I just want to reinforce the fact that I think that this isn't a very important study for for patients. It's written in order to increase or
Hans Vorster: improve access to
Hans Vorster: Two.
Hans Vorster: Organs for patients who are waiting for them.
Hans Vorster: It the process does not necessarily guarantee success for that because, as shown in other countries, there can be some very mixed results in
Hans Vorster: Depending on the circumstances within those countries and, as Matt said that we're no different to approaches to to deemed consent or opt in and opt out in that
Hans Vorster: Some of these things are based on obviously on cultural considerations and and health care plans and other such things, but certainly one of the major factors is
Hans Vorster: That comes into play is the family override issue.
Hans Vorster: To for I think for many patients.
Hans Vorster: That is very important issue, the
Hans Vorster: As it stands now, I gather from from the
Hans Vorster: From the legislation as it is being interpreted is that the family override will continue to be a major factor in
Hans Vorster: in Nova Scotia, although if you did read
Hans Vorster: One chunk of the legislation, starting with chapter 11 which actually talks about the various options and
Hans Vorster: There seems to be an option.
Hans Vorster: still an option available in Nova Scotia after this particular legislation is inactive for
Hans Vorster: Somebody who was wants to be a donor to actually assert that fact and and
Hans Vorster: Make a declaration as a positive donor. I want to be a kidney donor and further honest says that if there is a positive
Hans Vorster: If there is such a positive
Hans Vorster: Declaration, that in fact the patient's
Hans Vorster: Wishes will be accepted as as the final term. Now, if I'm not sure how that is going to be enacted in it, or actually used in in what is
Hans Vorster: Considered to be a soft approach because it isn't a soft approach, it means I said I, and yet the family doesn't
Hans Vorster: Have the right to override me it is when it is only deemed consent that are the issues that the issue arises. And under those circumstances.
Hans Vorster: The family has to come to some kind of an agreement, because there is a designated decision maker who ultimately speaks on behalf of that disease patient who will be asked to make the final decision now that in itself is still a fairly major factor and I
Hans Vorster: Think that there will be
Hans Vorster: A number of patients from
Hans Vorster: People who were clearly interested in fighting their their their their organs, after death, whose wishes will not be accepted for whatever reason, because some person in the family does not want to have the
Hans Vorster: The, the product or whatever. And there is a fact that I'm there is a
Hans Vorster: Poll I have if that can be
Hans Vorster: Shown now it's a good time to try and raising
Hans Vorster: Do you believe your family has the right to override your decision on organ donation after your death.
Hans Vorster: Let's wait for the results on this one should
Hans Vorster: Know that
Hans Vorster: Well, that's a fairly strong result.
Hans Vorster: I think that
Hans Vorster: Seems to have been
Hans Vorster: Very anecdotal.
Hans Vorster: The, the result, I would have expected the
Hans Vorster: I'm not sure, to what extent that will have an impact on the way the legislation is ultimately interpreted in used because there's always flexibility in those things, but it's it's for for
Hans Vorster: Me and I think for a lot of other patients I major issue, not only as a recipient. But I think that other people such as I am now also
Hans Vorster: Signed my donor card and Ontario. I am a donor for the things that I can still donate, which had my age is becoming fewer on the by the day. But nonetheless, I would be very upset if somebody in my family said no way
Hans Vorster: I'm gonna come back to haunt them.
Hans Vorster: Anyway, that's my other than that, I think this is a wonderful piece of work. Thank you for the to the Nova Scotia government for for having the guts to actually do it.
Hans Vorster: And being the first first jurisdiction and and kind of the in fact in North America to take that step. And what we find out in this leader project.
Hans Vorster: Will I think inform the decisions and a great deal of other jurisdictions, certainly in Canada, and we hope that the Americans will look north and see that we actually can actually contribute to the healthcare world, in spite of our socialistic tendencies. Thank you.
Matthew Weiss: Well, thank you very much ons and elizondo I think those were both
Matthew Weiss: You know covered big aspects of it. We are a little short on time so Christy, I'll let you prep the next question. I'm just going to respond rapidly to the two last ones that I see in the text box.
Matthew Weiss: To Anna family we use family as a shorthand, but we should be using substitute the decision maker and that person may be a legally defined it's whoever the next of kin is and legal sense that gets to make the decision.
Matthew Weiss: Families often used as a shorthand. The other question around the impact of education.
Matthew Weiss: On the public, and I think this is a this is a key aspect because if you're, if we can educate the public to make sure that your substitute decision maker.
Matthew Weiss: Usually your family knows what you would have wanted at the time of your death. Then all of these issues are moot.
Matthew Weiss: They're not going to override because they know how important it is for you. And so making sure that's why you know a transplant Quebec, our recent publicity campaign has been around.
Matthew Weiss: You know, whichever way you want to make your wishes known doing that's that's what's a key. So anyway, I will Christy, I'll give it over to you to moderate the rest of the questions.
Matthew Weiss: Like they're pouring in. So thank you.
Kristi Coldwell: So have you been able to differentiate between the public's reaction and views and the reaction of the decision makers are policymakers.
Matthew Weiss: Alessandro. I don't know if that came up in your analysis.
Alessandro Marcon: So it was trying to
Alessandro Marcon: Basically, in short, know we're looking at public comments. And as I said, we respected the anonymity of who's making those comments so
Alessandro Marcon: What's important about the work that we do is that we're looking at natural language environments where people aren't inhibited by the parameters of a survey or
Alessandro Marcon: People knowing who they are, you know, people, lots of people making comments online so that work would have to be backed up by more formal survey work or for focus groups in that regard. Yes.
Matthew Weiss: Yeah, and those surveys, specifically those populations are being are going to be a part of one of the activities of our
Kristi Coldwell: Thank you. Are there any places in the world that in practice don't allow family members to override a loved ones wishes.
Matthew Weiss: So in in France, they have made it more difficult. We in 2017 they re formed there are they, they updated their legislation to actually require written a test station by family members and then signed by a witness if they were going to override a previously registered consent.
Matthew Weiss: Speaking to they haven't really published the results of that sense and I've been trying to reach out to some French colleagues to see how that has gone over and the initial responses that I've gotten or that clinicians at the bedside have a really hard time
Matthew Weiss: Trying to enact that you know you're asking a clinician to be the police have a grieving family and and go against their wishes is a really big ask for a physician at the bedside, who has a therapeutic relationship with that family so
Kristi Coldwell: For sure. I mean, how did the medical or chief medical officer stance, have a major influence on the decision making.
Matthew Weiss: Maria chief medical officers at the hospitals or who exactly are you referring to there.
Thomas Murray Wilson: I think the chief medical officer Nova Scotia said he would not support.
Thomas Murray Wilson: Him consent. If the budget wasn't there to do some other
Matthew Weiss: Front End work on. Yes. Oh, I see. Okay. Yes, yes, yes. You have to have the organ donation.
Matthew Weiss: Organization. Yeah, absolutely. So because you know Steve bead you know as the head of the medical lead at Legacy life and Halifax.
Matthew Weiss: He knows this issue quite well and knew that to get the presumed consent aspect of it, which is what the premier wanted. He really wanted to make sure that other aspects such as donor physicians public outreach.
Matthew Weiss: Quality Control funding for quality control systems, all of those other things that we know, make a big difference and donation performance were included in the reform. So yeah, that definitely was a big part of it. Good point. Right.
Thomas Murray Wilson: Thank you.
Kristi Coldwell: All right, we have one for Ellis Andro. Do you think that social
Kristi Coldwell: Media amplifies the strongest views on whether they're positive or negative. Does it perhaps also silence, the more moderate views.
Alessandro Marcon: Yeah, it's, it seems to go that way. I mean, it depends a lot on the specific site that you're on. But a lot of the algorithms that run these sites are guarded by attention and a lot of what
Alessandro Marcon: Creates attention is sensationalistic news news that taps into our emotions of not only negative emotions, but positive emotions that we have
Alessandro Marcon: The case I'm thinking of a Corona Corona of ours, where I'm picturing the image of Venice, where they had all these dolphins floating down
Alessandro Marcon: To canals of Venice. Nice and all the animals are coming back and you know this great field constraints fake totally fake you know if everyone's nodding along their head to
Alessandro Marcon: To seeing that image. That's a good case of how something completely false.
Alessandro Marcon: To uplift rate through social media. So yes, that is an issue and that that's huge concern that they're the makers of the algorithms and the runnings of the sites are going to have to continue to deal with and deal with to be completely Frank in a better way than they do right now.
Kristi Coldwell: All right, great. Thank you. I know there's a couple more questions. But we actually
Kristi Coldwell: Run out of time. So, but please everyone in the audience, keep your questions coming because, as was noted earlier, these questions will be recorded and can potentially be addressed at a later time.
Kristi Coldwell: So thank you very much to the three of you on your panel, no doubt, really help expand. I think a lot of our thinking around this topic. So we are grateful for that. So thank you very much.
Kristi Coldwell: And that now brings us to our final panel of the day, certainly last but not least, and this panel is an introduction to health Canada's OTC collaborative and the patient advocate and advisory committee.
Kristi Coldwell: So we have been very delighted and proud to partner with health Canada's organ donation and transplant collaborative for this two day forum.
Kristi Coldwell: And we welcome Cindy Moriarity with us to speak a little bit about what this collaborative collaborative is all about, as well as Lydia Lauder and Randy Spence lead to talk more about the patient advocate and advisory committee. So Cindy, I'll hand it over to you. Thanks.
Cindy Moriarty: Can you actually hear me.
Kristi Coldwell: Um, I think so. Pretty good. Yeah.
Cindy Moriarty: Okay, sorry, I'm having of all days to have technical difficulties so Hi, everyone. Thanks so much for this opportunity. I'm not sure, whose brilliant idea was to
Cindy Moriarty: Finish the day with a bureaucrat droning on and on. So I will try to keep it very short and and sweet.
Cindy Moriarty: Some of you may be aware of it, perhaps not all of you that we form something called the organ donation and transplantation collaborative. A couple of years ago.
Cindy Moriarty: Health Canada is playing a facilitator and secretariat role.
Cindy Moriarty: This is a temporary initiative that we expect will sort of, you know, be underway for a number of years. But, you know, not something that's going to be here forever.
Cindy Moriarty: And basically it came out of a number of conversations we were having back in 2017 2018 realizing that there are so many disparate activities going on in the space but
Cindy Moriarty: That we didn't seem to be getting the traction that we should for the level of effort. I mean, just for listening today sort of think about all just focused on research and all of the activities and all of the effort.
Cindy Moriarty: And sort of looking at. And I'm not talking about research, specifically, but just as an example, you look at all of the activity across the country.
Cindy Moriarty: And definitely making some progress. But we, you know, we thought we'd all like to be making a lot more progress and a lot faster. So what we did is
Cindy Moriarty: We did some pretty intense consultations to identify priorities we invited some organizations.
Cindy Moriarty: To participate who hasn't traditionally been part of the organ donation and transportation community.
Cindy Moriarty: And what we tried to do is get everybody or as many people as we could in in a room together now on a zoom screen.
Cindy Moriarty: Together, because I think what was happening before is that everybody was kind of doing their own thing and sort of, you know, moving ahead, inch by inch
Cindy Moriarty: But we thought if we all pooled our efforts, we might have a better opportunity in terms of really, really changing things. So we've been focused on a number of priorities.
Cindy Moriarty: One that relates to pan Canadian governance, we realized that one of the, one of the challenges we have is nobody's in charge.
Cindy Moriarty: Of the Canadian or national or pen Canadian approach to organ donation and transplantation each provincial government does its own thing. You know there's there's
Cindy Moriarty: Research Network does you know has a finger. There's nobody that says this is what the priority is for Canada and how we should all work together.
Cindy Moriarty: And and that's not unusual in the health system because province, it's a it's a provincial jurisdiction.
Cindy Moriarty: But with as you know better than anyone with organ donation of transplantation, the resources are so huge and so precious
Cindy Moriarty: There isn't a single province that can go it alone. Even the big ones like Ontario and BC are dependent on or Quebec are dependent on other provinces.
Cindy Moriarty: And the other thing that we've been looking at is, is data, you know, sort of trying again to collect on a national scale. So everybody has access to different data pools is making their own interpretations
Cindy Moriarty: But we don't have that information on a Canadian scale that can feed back to us and say, well, where are the gaps where the problems. How can we
Cindy Moriarty: How can we improve and then obviously a third priority area is inter provincial Organ Sharing and really
Cindy Moriarty: Working with provincial governments and organ donation organizations to really sort of better understand how are these decisions made
Cindy Moriarty: How do we have confidence that the right Oregon is going to the right person at the right at the right time. So that's a very sort of, you know, superficial touch on some of the priorities.
Cindy Moriarty: Just to give you an idea, one of the projects that that we've been working on is for living kidney donors.
Cindy Moriarty: To change the practice. So the common practice becomes instead of the donor having to move to wherever the transplantation is is going to happen.
Cindy Moriarty: That the kidney gets shipped. So the donor can have the their kidney extracted in in their hometown, with the support of their family.
Cindy Moriarty: And then, and then the kidney travels by by courier to wherever it needs to go.
Cindy Moriarty: And I think with a pandemic. We've seen sort of more opportunity for this but you know we're working on protocols and procedures so that we can make this a much more common practice.
Cindy Moriarty: So through all of this, what's been really critical is the patient engagement and representation. And I want to thank Christie and Hans, in particular for
Cindy Moriarty: The advice and counsel that we've been given. I've had many a conversation with Christy where she when we used to get together physically
Cindy Moriarty: So, you know, Cindy. Like, this is great, but you know what would really help and in hindsight.
Cindy Moriarty: Christy as soon as you've said something to me, I think, well, yeah that's that's so obvious.
Cindy Moriarty: But we hadn't really thought about it, I think. I think governments and a lot of organizations are still really learning about how to engage patients in a meaningful way.
Cindy Moriarty: Today and tomorrow you're talking about how that plays out in the research domain, we need to figure out how that works better for developing policies.
Cindy Moriarty: And and practice. So, you know, I feel like we're in this hand in hand. We've been learning a lot. We rely very health very heavily on our patient advisory
Cindy Moriarty: Patient and advocate advisory committee and trying to make sure that you've got the resources and the support so that you could play an effective role so I'm
Cindy Moriarty: Very happy to be here. It's been fascinating to hear all the stories and the discussion throughout the day.
Cindy Moriarty: And I'm looking forward to what my co panelists have to say. And any questions or comments you might have. So I think I'll stop there and give the microphone to to others who are more worthy. Thank you.
Lydia Lauder: Thanks CD, I wouldn't say that I'm more worthy, but it's an absolute honor to be here with you and Randy and Christy and all the other wonderful participants as part of the pack.
Lydia Lauder: So you'll hear the word pack a little bit of the acronym. Pick a little bit. And it's been a wonderful addition to the collaborative
Lydia Lauder: Where we have been joined by patients and families and patient advocates, such as myself to work together and to make sure that the patient voices really heard loudly and clearly throughout the collaborative in changing the policies in changing the way that
Lydia Lauder: People connect. And so we really value that opportunity and I know a number of you already involved in research and we've been quite fortunate in that we've received some funding for a a research.
Lydia Lauder: project that we're working on called improving engagement and empowering patients on their transplant journey.
Lydia Lauder: So one of the things that we are fiercely proud of because particular project is that has been truly patient driven and patient, led by people such as Randy and Christy and hands and others and
Lydia Lauder: What we've really tried to do and prove is that patients can really
Lydia Lauder: Influence the organ donation and transplantation landscape. And we've been doing that fire engaging with them.
Lydia Lauder: And so we really want to get more knowledge and more understanding of the transplant journey, how it's affected people and how to optimize that role.
Lydia Lauder: And feed it back to the collaborative and then feed it back to the policymakers to really enable that change with that strong patient voice.
Lydia Lauder: And the collaboration is how to this important work and patients and families have been integral in this. And I won't go through all these in great detail because I know we don't have that much time and
Lydia Lauder: You don't want to hear from me. I'm sure you want to hear from Randy much more than myself, but basically they have been
Lydia Lauder: Affirming the importance of the research question. They've helped co design the project survey. We're now at the stage that we will shortly be recruiting
Lydia Lauder: For people to help with the survey and focus groups.
Lydia Lauder: We've made sure that everything has been done in an ethical and culturally safe manner and including minority groups and and peoples whose voices may not otherwise be heard.
Lydia Lauder: And we, at the end of the project really look forward to actively disseminating the results. So really proud of this work. I'm really proud of the
Lydia Lauder: Number of pack members that have made it here today. I'm not going to name you all individually, but it's so nice to see so many familiar faces and names up there on the screen.
Lydia Lauder: But I'll stop talking now and I'll hand it over to Randy who can talk to his experiences about being a patient as part of this collaborative
Randy Spensley: So much as you can see, my name is Randy Spence Lee, pardon me, I'm a thriving kidney recipient. I had a I was on PD for four years. And luckily, got the gift of life from a business colleague over eight years ago. And that was a an amazing experience.
Randy Spensley: I'm also as Lydia alluded to that I'm on the pack, as well as etc, which is an honor and a privilege.
Randy Spensley: Being there sharing my voice.
Randy Spensley: For not just me, but all our other pack committee members as well as all the other patients across Canada coast to coast.
Randy Spensley: I'm honored and privileged to be there and and I can tell you, when I first joined. It was very intimidating sitting in room with a lot of people who
Randy Spensley: Have a lot more knowledge in their different fields that I certainly do. But I can tell you that my voice is heard my voice is welcomed and I'm honored to be part of of this particular committee.
Kristi Coldwell: Excellent. Thank you, guys. I'm just hearing you talk, I do have a question for you. So I'm wondering
Kristi Coldwell: At what have you found to be some of the biggest challenges, but also some of the biggest rewards to having that patient family and donor lens really embedded throughout this initiative.
Kristi Coldwell: And I can go to any of you.
Well,
Cindy Moriarty: I think you know for from health Canada's perspective, I think it has kept us really grounded. I mean,
Cindy Moriarty: You know, government is famous for, you know, Health Canada, like, you know, this is for all Canadians and we're trying to improve the health of Canadians and what do I say well, which ones, and where are they, and
Cindy Moriarty: Where it's, you know, we're so removed, usually from from this kind of partnership. So it's been tremendously helpful for us, like in terms of the advice, the real life experience. But also, you know,
Cindy Moriarty: Randy, I was smiling when you talked about being intimidated dislike, I feel that way every time I walk into an organ donation room. I mean, like we're talking with literally brain surgeons, you know, and
Cindy Moriarty: It's we're not we're not experts in in all of these things. So we all have something to to contribute. And I just, I just think the mix of patients in organizations has been tremendously valuable.
Kristi Coldwell: And Randy. Is there anything you'd like to add just because you can, you've been living it you've been living the challenges the successes.
Kristi Coldwell: Yeah.
Randy Spensley: Thank you. One of the things that we in Canada have is we have great care from coast coast and we have the majority of the health care professionals.
Randy Spensley: Have given us great great treatment, but one thing that is missing is the fact that they have not, they have not been able to
Randy Spensley: see or feel what it is like to have a living experience going through a transplant.
Randy Spensley: The ups and downs. The east to west and north, the south.
Randy Spensley: You know, many of us are lucky enough to have patients that are family networks that support us along the way.
Randy Spensley: We're very lucky with the pack committee in the respect that we as a, as a group, or committee ourselves where we are spread out through the different working groups throughout the OT, etc.
Randy Spensley: And you mentioned the working living donation and that's part of my working group that I attended. I have been fascinated
Randy Spensley: From a patient point of view, to see what goes on behind the scenes with the aspect of, you know, shipping the Oregon rather than the patient and it makes total sense.
Randy Spensley: And these things are common sense and it's amazing that they haven't been done before, but I'm really, really grateful that I could be part of that in a very small way with a patient voice that's listened to and and without any biased or any kind of
Randy Spensley: How should I say
Randy Spensley: Doubt that
Randy Spensley: You know, we're important and in you know the the model that I always sort of carry along that I learned from BC renal was you know nothing about us without us.
Randy Spensley: And it's very important to as we go through our journeys with whatever we're dealing with from a transplant point of view, to be included in those discussions.
Kristi Coldwell: Thank you, Randy, maybe, did you want to add anything to that.
Lydia Lauder: Yeah, thanks. Kristi. And I think what we're hearing is echoed across all the working groups and what we hear as Co chairs of the pack is that the
Lydia Lauder: The chairs and the other members of the working groups have been very inclusive with the patients and advocate representatives on the groups.
Lydia Lauder: They've been able to have their voice heard, they've been able to speak up and I've noticed and Christy. You could also speak to this just the confidence in the
Lydia Lauder: Pack members of participating in those working groups and and taking part and sharing their stories and actually
Lydia Lauder: Having that really strong voice at the table so it's it's for me personally, it's been wonderful to see the growth of the patient advocates throughout the journey and I look forward to seeing how much more they BLOSSOM AND GROW as well through this piece.
Kristi Coldwell: Definitely no Mets hundred percent every Lydia and I do see a question, wondering about if the organ donation transplant collaborative actually has an idea of what you would like to kind of achieve in regards to
Kristi Coldwell: DPM statistics which I I'm interpreting is donors per million. So if I'm wrong, correct me, but we'll go with that. So Cindy, perhaps you could address that one.
Cindy Moriarty: Well, first of all, thank you for telling me what DPM meant because I was reading that on the on the chat. So there's my expertise, Randy.
Cindy Moriarty: Right and full, full frontal we haven't got a target. I mean, I think our target is that we want enough donors to meet the transplant needs.
Cindy Moriarty: So, you know, we're not. And really, we're looking at it from
Cindy Moriarty: A system point of view, sort of, what are the things that are not working in the system that are preventing us from getting more donors or from sharing information or having access to that information.
Cindy Moriarty: And you sort of what are the what are the policies or legislation or practices that needs to change to improve that. So we're not driving to a particular number if others have advice on that I'd be very open to hearing it.
Kristi Coldwell: Excellent. Thank you, and one, one more question for you all, and it'd be for each of you. So what would you say are you most excited about coming out of this collaborative
Randy Spensley: I'll speak.
Randy Spensley: I think
Randy Spensley: It's long overdue that the patient voice is being heard.
Randy Spensley: You know, we take our medical health professionals word
Randy Spensley: For granted we look up, just as we did as people sitting going to primary school or teacher knew everything, and
Randy Spensley: They knew every you know they had all the answers and and I think going forward. I'm really, really happy to see and I really applaud all of the patient partners.
Randy Spensley: And and all the other people that have been on this forum today sharing their stories because it's really empowering.
Randy Spensley: To hear that you do have a voice. It is listen to and I think for me, going forward is that I hope that this particular chapter of my journey with
Randy Spensley: Kidney Disease will benefit me as well as others down the road, because we're just building blocks and eventually we'll we may never hit the target of those building blocks, but we're working on it for future patients.
Thank you.
Kristi Coldwell: And Cindy.
Cindy Moriarty: I guess for me. My
Cindy Moriarty: My number one expectation or hope is that we have a large coherent approach to organ donation and transplantation in this
Cindy Moriarty: In this country, like I talked about the need for a governance model. We don't know what that's going to look like.
Cindy Moriarty: But, you know, I'm hoping that that will be more clear at the end of the collaborative and that whatever that structure or body or combination of bodies turns out to be
Cindy Moriarty: That they're going to have a clear mandate and the resources they need to keep going because this, this is never going to be over in terms of continuous improvement and I think for me, it goes without saying that patients are part of that, you know, in a very meaningful way.
Kristi Coldwell: Thank you, maybe a new you have the last word.
Lydia Lauder: Thank you. Yes. I think it's just for me. I really do want to see those significant changes where people are
Lydia Lauder: There is a difference in the organ donation and transplantation, that is meeting the needs of patients out there and and making sure that
Lydia Lauder: As Cindy said things improve constantly that there is a quality improvement initially of it and it continues to improve for the patients and their families out there.
Lydia Lauder: And also, importantly, I just wanted to note, just how important it is to have that patient voice heard, to what Randy and Cindy have both said just
Lydia Lauder: Just to feel that the patients have been part of this, and any changes that are taking place, which are starting to be real and tangible now that
Lydia Lauder: We've seen the changes with things such as living donation already that those patients have really
Lydia Lauder: being heard and and changing the landscape moving forward for us or
Kristi Coldwell: Like plan. Thanks. Thank you so much to each of you.
Kristi Coldwell: I know that I'm sure audience greatly appreciate it. Appreciate learning a little bit more about what's going on behind the scenes in our organ donation transplant community. So thank you for bringing that perspective.
Kristi Coldwell: But that actually wraps up the end of
Kristi Coldwell: Our day we've had a pretty jam packed day. So I do want to express a sincere thank you to everybody to all of our panelists.
Kristi Coldwell: for taking time out of their busy schedules to join us. So thank you for that. And to all of our audience members for being with us. Thank you so much.
Kristi Coldwell: I hope you found today, you know, enlightening and useful and you gained some new knowledge. So we hope that you will be able to come back with us tomorrow. We have another great day of programming our morning starts at 11am
Kristi Coldwell: Eastern Time. So 8am Pacific time. So a little bit earlier press out west and that will have our coffee. So if you want to. It's and it starts with living donation.
Kristi Coldwell: And in the afternoon the future avenues for research will be
Kristi Coldwell: Block. So please have a look at this CD TMP website. If you'd like to see the program. It is can be found at TD tarp.ca. So again, thank you, everyone, and have a great evening or early afternoon, wherever you are.
Kristi Coldwell: Hi everyone, and I don't think admin has anything further to say doesn't look that way. So we're great so everyone take care and we'll see you tomorrow.