Canadian donation and transportation research programs patient family and donor Research Forum.
This is a virtual version of what was planned to be a one day event in Kelowna British Columbia.
Even if we're not in person. We hope you feel welcome and ready to share your experiences and questions we'd like to thank our 12 supporters who helped promote the conference and the organ donation and transplantation collaborative for their cooperation.
If this is your first time with us, the Canadian donation and transplantation research program or the CDT RP
Has existed for seven years and has a patient family and donor research platform to support researchers with Recruiting, selecting the best patient family or donor research partner for their projects.
We work with close to 300 researchers across Canada and 40 patient family and donor research partners to
This event is dedicated to Canadian organ donation and Transportation Research and how patient family and donor for PhD.
research partners are helping the success of that research the involvement of patients, families and donors in our networks research projects is extremely valuable and it's helping improve the quality and relevance of the research questions and the work that our researchers
A few words to explain how this event will happen. Each time slot morning and afternoon has a dedicated thing to honor each PFD profile CD TMP works when
We kindly asked participants to mute your mics and turn off your videos. So our speakers can have our undivided attention throughout the event.
If you have a question or comment. There are three ways to ask if you're not familiar with zoom you can follow along with me now.
Number one, if you move your mouse to the bottom of your zoom screen you will see chat. Click on chat and you can type your question or comment and all attendees will see
Number two, if you look again to the bottom of your screen and click on participants on the list, you will see CDT RP Q AMP a as a participant click on that name and type your question privately.
Number three. If you would like to ask your question live. Click on the participants icon and click on raise hand on the right side of the screen in some talks, you might see the polling option pop up to get your feedback. All polls our
Registration will remain open throughout the event. So if there are others that you would like to invite to join us. You can still feel free to do so.
The topics have been carefully selected by the planning committee Heather bad not dumping ground rule main run. And so then my dad and forum co chairs crystal well and
We hope you enjoy what we have in store. Welcome, everyone.
Kristi Coldwell: Hello, everyone. Thank you. Patricia and thank you for that introduction. And those helpful reminders and welcome everyone to this morning. Some of you I guess it's a little bit later in the day, but
Kristi Coldwell: We are very delighted to have you all with us for the 2020 patient family donor Research Forum.
Kristi Coldwell: I'm Chris equal though I'm a Senior Advisor for transplant research advocacy it the transplant Research Foundation NBC
Kristi Coldwell: As well as a certified child life specialist on a more personal level, I am a heart transplant recipient of 20 years I received my transplant. When I was 17 years old, after
Kristi Coldwell: A long battle with congenital heart disease and numerous unsuccessful open heart surgeries, but I consider myself incredibly fortunate
Kristi Coldwell: Because not only have I been given an additional 20 years of life that I otherwise wouldn't have had
Kristi Coldwell: And I've actually witnessed firsthand the transformational impact that research has had on transplant medicine.
Kristi Coldwell: So although these maybe these advances may be small and incremental they have nevertheless had an important impact on my quality of life in my overall health.
Kristi Coldwell: And that is apparently why I'm so excited to be with you all today and to help bring you today's to day forum.
Kristi Coldwell: For me research is it what's what gives me hope. It really gives me hope for a better future for all of us, whether we're a recipient.
Kristi Coldwell: Or a family or caregiver or even a donor may that be deceased or living
Kristi Coldwell: And I hope that perhaps over the next two days that it might ignite a little bit of a spark in each of you for how you may want to get involved if that's something you choose.
Kristi Coldwell: So I know that my co chair hands moister is equally excited to be with you today and I will actually hand it over to hands right now to tell you a little bit more about himself. So welcome, once
Hans Vorster: Hold on.
Hans Vorster: I would show myself, except for the fact that it seems to be blocked.
Hans Vorster: Somebody is trying to sell me a new browser.
Hans Vorster: This is amazing. Of course it would happen now.
Hans Vorster: Okay.
Hans Vorster: Yeah, go.
Hans Vorster: There.
Hans Vorster: Nothing is happening every time I click it, it doesn't work. There we go. Magic of
Hans Vorster: Lucky when it doesn't work well.
Hans Vorster: Good morning. Yes, my name is Hans Forrester, and I'm a healthy and happy kidney transplant recipient.
Hans Vorster: My background medically speaking was
Hans Vorster: 20 years or so of chronic kidney disease, followed by almost five years of home haemodialysis and eventually some two and a half years ago came that magical life altering moment when I received a slightly used kidney from a deceased donor.
Hans Vorster: was apparently very similar to me because the match was and that is a terrific.
Hans Vorster: I've been a patient partner for now for a number of years starting in 2014 at Kingston General Hospital as a as a patient advisor.
Hans Vorster: However, my background, my professional background is in marketing strategic research and therefore gravitated to the research component of the health care system.
Hans Vorster: And within that I have several roles.
Hans Vorster: Co chair obviously of this this event. I'm also co Chair of
Hans Vorster: Canadian trials.
Hans Vorster: Canadian ufology Trials Network CMT and and
Hans Vorster: Work with our stuff as part of the patient. Governance Council of cancel see Katie and as well as number of other organizations or DTC the Kidney Foundation. And so, etc in various capacities and it's largely research that today and tomorrow is all about.
Hans Vorster: This conferences is wide, wide ranging and you will hear studies and discussions that cover a broad swath of the ODT landscape.
Hans Vorster: But while you're listening you considering the effects of what you're hearing might be missing.
Hans Vorster: Sorry what when you're listening.
Hans Vorster: Please consider what might be missing from this broad picture.
Hans Vorster: We
Hans Vorster: And what the research community could undertake in order to improve future transport your future research for the transport donor and and transplantation.
Hans Vorster: The last session of the conference late tomorrow.
Hans Vorster: Afternoon will deal with research in the future.
Hans Vorster: And this will give you an opportunity to voice your opinions and thoughts and ideas.
Hans Vorster: And they are definitely a great interest to us.
Hans Vorster: So please be prepared to help us out. And let me, let us know what you think.
Hans Vorster: So welcome, enjoy.
Hans Vorster: Back to you personally
Kristi Coldwell: Thank you. And thank you for that excellent overview. The next few days. So as you did hear a little bit not too long ago in our
Kristi Coldwell: Introduction by Patricia. So our two days will be divided into blocks, each with distinct content and today we are going to be hearing about caregivers and families as well as transplant recipients and tomorrow is going to cover
Kristi Coldwell: Sorry, living donation and future avenues for research. So we encourage you to ask questions to make comments.
Kristi Coldwell: Don't be shy. We really want to hear from you. We want to hear what's on your mind what you're thinking, what you're wondering
Kristi Coldwell: And I really think that's going to be how everyone's going to get the most out of these two days.
Kristi Coldwell: And but without any further ado, let's get things started, and I will actually pass it over to Savannah. But art, who is our master of ceremonies for this morning and Marie Chantelle for din
Kristi Coldwell: Who will be talking to you about what it means to be a patient and family and donor research partner. So it's so bad.
Sylvain Bédard: Thank you. Christy. Thank you, haunts. And I think I before I forget, because, uh,
Sylvain Bédard: You know that transplant recipients sometimes forget things I want to make sure that I think Hans Christie Chelsea Melanie Stephanie all the guys and the girls that I've worked really hard on what you've done and organized for that forum and now I will share my screen.
Sylvain Bédard: Are we there yet. Okay. And share and tell me if you see it, I should start with that.
Sylvain Bédard: Erica.
Sylvain Bédard: So I Maddie shot that you're there to, I guess,
Sylvain Bédard: I'm here soon. As I said, well, I'd like to present myself, maybe not. Ladies first. So maybe
Sylvain Bédard: Yeah, thank you.
Marie-Chantal Fortin: So I'm the service partner, not in a romantic way but in their research way. So I'm a transplant nephrologist
Marie-Chantal Fortin: In Montreal. I'm also a researcher interested in a patient partnership and also ethics and organ donation and transportation. So, and I'm glad to. I would like again to thank the organizer to to invite us today to speak and I'll let the survey my I always like to say that we are like
Marie-Chantal Fortin: Me the weeds. So I'm the brown part doll part and is the, you know, sugary part of the Mini Wheats
Sylvain Bédard: Oh, see, avoid saying yes, usually, she said the frosty part but we, it's okay. So see invented on a double heart transplant recipient. So I've heard the first time in my life. The, the, the world donation on hard donate a transplant. I was
Sylvain Bédard: About 1913 years old towards in 1980 We're barely the transplant heart transplant program was barely starting Canada.
Sylvain Bédard: It, it's amazing for me to be there here this morning because the forum this year has taken
Sylvain Bédard: A big expansion of going web and having more than I don't know how much we are, but I think over
Sylvain Bédard: 150 people registered for that. So it's really amazing for that. And when we go back to what is patient partnership, what is being a patient and transplant, what is being a family as caregiver, but as as also a family, a donor and a donor living donor.
Sylvain Bédard: I think CDT RP as this.
Sylvain Bédard: Special really special.
Sylvain Bédard: People that we are what I call before the transplant during the transplant and after the transplant, it's and it's always an honor for me to be with donors.
Sylvain Bédard: Either caregivers from donor family donors members or living donors, because for me there. We wouldn't be here today without them. So I have to say that that people knows me it's always like that, that I started, we wouldn't be there with you guys. So this is really important. So
Sylvain Bédard: Not to spend and not to lose any time we will start with our presentation. Many shout out and is so we are at the city, Turkey, we're taking care of the PFD so patient family donors platform.
Sylvain Bédard: And we would like to introduce you to what is patient partnership. So let's go and let's start so many Shanta it's it's your time.
Marie-Chantal Fortin: Okay, well, this is a willing, we get go next. It's
Marie-Chantal Fortin: An outline of the presentation. So, well, why we engaged patient as you may know 50% of the populations live with chronic disease.
Marie-Chantal Fortin: And living with chronic disease means that you develop expertise in your own care and you spend, you know, when people have chronic conditions like chronic kidney disease transplantation. They spend a very few
Marie-Chantal Fortin: Very small percentage of their care with healthcare professionals, most of them spend, you know, are taking care of themselves and develop expertise. So it's why we want to engage and partner with patient
Marie-Chantal Fortin: I just want to mention that in the presentation, I'll use the term patient in for question of time. But when I mean patient, it can end. It includes
Marie-Chantal Fortin: Donor caregiver family members. So just don't feel that I forget you. And I just focus on patient. It's not true. It's only just to be brief.
Marie-Chantal Fortin: So why to partner with patients. Well, there's patients. Right. You know, and we are doing research on your condition. So it's normal that you're involved in the
Marie-Chantal Fortin: research will impact on your care. So you have a right to be involved. Also, there's an democratic argument, because in Canada researches public key funded. So you all
Marie-Chantal Fortin: For participate with your income taxes in the research. So you have a word to say. And also involving
Marie-Chantal Fortin: Patient as patient partner in research as impact on research in to improve the relevance of research that facilitate participant recruitment and knowledge transfer it's provide an anticipated research topics and I could
Marie-Chantal Fortin: I could testify that involving patients, you know, bring us new idea that you didn't anticipate it before and it didn't prove your grant. And it's also acknowledged your expertise.
Sylvain Bédard: Survive. Yeah.
Marie-Chantal Fortin: Well, we just wanted with those cartoons to just make the difference between research participant and research partners. So I assume that some of you have been
Marie-Chantal Fortin: Have been participated have been participating in the past in research as research participants, but you know being a patient partner in research is really different. You
Marie-Chantal Fortin: You're not participating as a research object, but you're part of the research team, you know, as other researchers, so it's completely different.
Marie-Chantal Fortin: I know. Maybe some of you who are who have been partnering in research and could understand that.
Marie-Chantal Fortin: When we think as a patient. Oh yeah, I really enthusiastic to be involved in research, I will, I will participate to new discoveries that would allow us to to cure the rejection well
Marie-Chantal Fortin: And to be involved in the lab with mice. I just want to, well, lower your expectations. You know, it being a patient partner is not like a being the in the lab and so on. So, but it's more like parts paid to a conference and zoom call with other researchers and I just also want to
Marie-Chantal Fortin: To make the expectations, you know, lower and care you know as a patient partner, you will be you'll be maybe invited to participate in writing grants.
Marie-Chantal Fortin: But, and you're very excited. And we're you're eager to participate. But just to to know that, you know, even if the grants is spectacular. You know that the chances are, well, low that it will be funded. So just to be clear, and also, although their research looks really exciting you know the
Marie-Chantal Fortin: It's possible that it will bring positive results and times between discovery and new medication, you know, could be many years. So just to
Marie-Chantal Fortin: Bring the expectations, a bit more. What is the reality of being involved in research. That being said, I don't want to remove your enthusiasts to participate because it's really fun to partner in research. So survey.
Sylvain Bédard: So I work at the center of excellence of patient partnership in public. And we've developed that some people called the Montreal model an expertise on developing patient partnership and I think it's important to
Sylvain Bédard: to to to to do understand that health professional are experts in disease. And when you look at
Sylvain Bédard: All the time that you spend so it's like a, I can't remember. I think it's like you see a doctor and the average only five hours a year.
Sylvain Bédard: But basically all the hours that you're spending at home, you're living with your disease or you're basically developing an expertise in being Hill and this is that expertise that we want to bring in as a patient, you have you have seen you have lived experience you have
Sylvain Bédard: Different experience and we want to merge those two things together to acknowledge it comes to you and they lack complementarity sorry that that that word is always hard for me and France.
Sylvain Bédard: Because we are collaborators as a patient. I'm not there to tell the L professional all to do his job and the professional always asked me, How do you do it. So I would say I know
Sylvain Bédard: I know how and the held professional will know. They know why, and the collaboration as patient partnership is basically sharing those expertise together.
Sylvain Bédard: In a round circle and not in just one way or the other. And basically, collaborating together and CO building and cold leadership and i i want to interface on coal building because if you're there. And the only thing you know you want to do is complain about the treatments that you had
Sylvain Bédard: You'll never did there. But if you collaborate and saying, Well, I've, I've lived through that and I would have loved or
Sylvain Bédard: This was missing or something like that. And then the health professional will understand what is the challenge in you and then we can collaborate on that. And so there's a lot of levels of patient partnership.
Sylvain Bédard: Yes, you can start by being consult
Sylvain Bédard: As Michelle said it could be reviewing a document for questionnaire and future questionnaire that will be sent to people. Yes, you can have a
Sylvain Bédard: Focus, but then you have other levels that you will be maybe more involved in the design of the project and bringing ideas and then the patient can involve or so you can also
Sylvain Bédard: Go all the way to the governance level, which is great. And it's a buildup of knowledge, experience and also how you
Sylvain Bédard: You were that extremely express your need, and how you can collaborate together that will also
Sylvain Bédard: Help you grow up being hung up or down. And it's not. It's all okay if you're
Sylvain Bédard: Just doing reviewing we need people to do that. You don't need to be at the top, all the time. It's doing your part and sharing in your own way and your experience to change or affect maybe a research project that you will learn with ons and Christy and the following days.
Sylvain Bédard: So it's really important. And I think one of the attitude that we have. If you for patient partnership. It's the willingness of going back of giving back. If you go there because you want to have a better interest or you expect to have maybe better treatments.
Sylvain Bédard: Don't go there and the willingness to collaborate
Sylvain Bédard: Taking a step back to your experience because you might have a lot of frustration, but
Sylvain Bédard: It's also bringing that experience as a constructive I'll keep pushing that word all the time, constructive way so everyone can share their story and bring up a good project. And I've also
Sylvain Bédard: As a good way of telling your experience that will bring and outcomes or ideas to do to the other ones. And I could talk about the other ones.
Sylvain Bédard: Issues but for me it's and it's okay if you're on a committee or something and you say something and then they don't take your idea.
Sylvain Bédard: This is the deal of working in collaboration, but maybe that idea that you didn't take took the took the meeting somewhere else. That will be even more interesting for the researchers or something like that. So there's a lot of involvement that we have to that we can
Sylvain Bédard: Have in research and Maddie shot that I'm leaving you the final slide.
Marie-Chantal Fortin: I just want to mention. Well, thank you so very, I think so. Very summarize. Well, and what is this to partner and there are winning condition for patient engagement. Well, as he said collaboration.
Marie-Chantal Fortin: As spending time and resources. It's for more for researcher to be involved as early as possible. You know, if you're involved at the beginning, it's easier to really develop a partnership, it's
Marie-Chantal Fortin: It's all like, you know, relationship in the rest of your life and you know with a research team, you have to develop a meaningful relationship that is based on respect.
Marie-Chantal Fortin: Collaboration and, you know, sometimes the surveys, sometimes time at the tender of research because it's trying to match.
Marie-Chantal Fortin: Researcher and patience and some time. It's not a good match sometime it's good but you know it takes time to develop relationship now.
Marie-Chantal Fortin: So you have to be patient and be involved a training is also a winning condition and also having clear expectation, what you want in this patient partnership.
Marie-Chantal Fortin: What are is your commitments, your times to be involved, and I, I just want to also go back to the pyramid that survey mention
Marie-Chantal Fortin: Just want to clarify that. It's not a year. Our key we you know it's okay to be at some time in your life you don't have so much time. So you want to review documents and
Marie-Chantal Fortin: You know later. You want to be more committed, you have more experience you want to be involved at the governance level.
Marie-Chantal Fortin: And then after a few months, you want to go back to a tactical level. So it's not a goal to be at the top of the pyramid, but it's not only a way to show the difference level that you could be involved. So, and
Marie-Chantal Fortin: That's it.
Marie-Chantal Fortin: I'm glad. They'll be glad to answer your question, I hope that we were not too much confused. So, yeah.
Sylvain Bédard: I'll manage it. Thank you. Manny. Shall I not changing my hat for the host
Sylvain Bédard: For the rest of the world. It's a morning kind of messy, messy shot. So, um,
Sylvain Bédard: As a host. I will not present the CV of everyone, because for me before even being a researcher are involved in research, they are great human beings that I've met and CD therapy so
CDTRP Q&A: Sorry. Sorry to interrupt. Before you go further, we just had one question from the chat your presentation. A question from Beth, where would patient initiated projects fall on the engagement pyramid.
Sylvain Bédard: Could you repeat that.
CDTRP Q&A: Where would
CDTRP Q&A: Where would patient initiated projects fall on the engagement pyramid.
Sylvain Bédard: I would say depends on how the patient initiated project starts
Sylvain Bédard: There's a lot of
Sylvain Bédard: For me its collaboration. So just if you start a project by your own as a patient for me if you talk about patient partnership, there is the missing part of collaborating with a researcher so
Sylvain Bédard: I don't know about the pyramid thing because you could design, which I've done with many shot that and many or things like that, but also you can bringing idea or document and say this is a problem or let's say talking about skin cancer for transplant recipient.
Sylvain Bédard: Here's an issue I want to do a research on that and then you reach for the people, so there's
Sylvain Bédard: I don't want to go specific on that. But I think it's important to reach for the good one and for the good people and going in collaboration with that and I'll let the Maddie Shanta keep going on that. Yeah.
Marie-Chantal Fortin: Yeah, I totally agree, within the IMO that there are some organizations where it's more like Patients Like Me, where they initiate research project. And after that, they find researchers to help them to conduct.
Marie-Chantal Fortin: But it's not or way within the city RP that we are doing partnership. It's really has Sylvia said co building code design so
Marie-Chantal Fortin: It depends what you mean by patient initiated the research project that's true that we have, you know, patients ideas.
Marie-Chantal Fortin: That that are shared with researchers and then become a research project developed by patient and researchers. I just, I'm thinking about the puzzle how which is a good
Marie-Chantal Fortin: Example, but so I would say we're really in the partnership and with the with the research community and the patient family donors community. So there's no we're not
Marie-Chantal Fortin: We're not favoring
Marie-Chantal Fortin: Only patients who want to push their research project on their own. So
Sylvain Bédard: Like we we like to have clinicians and the researcher when they reach for patient. This is great for us because we see that there's an interest of push and partnership. So I'm going forward, because I'm also the manager of that.
Sylvain Bédard: Talking about pleasure and so two great actually three great human beings. I will start with the
Sylvain Bédard: The younger ones MTC and Melanie Judy n is a return visit daddy NYAH Melanie is the CO is the boss of city tarp and an AMAZING LADY. And we have No not today.
Sylvain Bédard: And the big guy. So bet you want to know at what level, we can prevent people and what is initiated by patient look at La is an old sold
Sylvain Bédard: Was Isla Melanie yet.
Mélanie Dieudé: I'm going to try to share my screen, which is always something
Mélanie Dieudé: Thank you so much for the introduction, we're really, really excited to to talk about pleasure, a hot today. Um, do you see my screen.
Sylvain Bédard: Yes, you do.
Mélanie Dieudé: Excellent. So before introducing a LAN and aloha who are really the heart, the inspiration of this project. So I'm just, just talking
Mélanie Dieudé: Let me, let me ask a little bit about you. We want to know who's, who's in the room. So I'll ask, Can we can we pull. Can we pull so
Mélanie Dieudé: Do you identify yourself as a transplant recipient and living donor of family caregiver a clinician researcher or other
Mélanie Dieudé: You have a little time to answer please click. If you see the pole.
Mélanie Dieudé: Nice. Music
Mélanie Dieudé: While we're answering that, that question I would like to thank the team. I'm honored as the executive director of TV tip to work with an amazing team.
Mélanie Dieudé: Kudos theme so 30% 34% transplant recipient living donors 5% family caregiver 50% researchers 20 and others 25 guys I will, thank you so much for joining. I think we have a very nice crowd and
Mélanie Dieudé: We have another question for you. So push it has another question for you a little bit more
Mélanie Dieudé: On the trigger on on dogs and cats and pets, can we have that pull
Mélanie Dieudé: Up, please.
Mélanie Dieudé: OK. So again what best describes do immunosuppressed immunocompromised, or a member of your family is and you own a pet. This is the first one.
Mélanie Dieudé: Are you immunosuppressive and no compromise or someone in your family is and you wish you could hold a bed.
Mélanie Dieudé: Are you immunosuppressed and don't own a bit
Mélanie Dieudé: And do you have quote unquote normal immune system, own a bed. Wish you could own a bed or don't own a pet.
Mélanie Dieudé: Take your time, and then
Mélanie Dieudé: In the meantime, Ellen and I'm
Mélanie Dieudé: Getting ready
Mélanie Dieudé: Thanks for the music.
Mélanie Dieudé: Okay 25% of the people. How are immunosuppressive no compromise and own it back 4% would love to have a bed at 10% don't own that bet a lot of the normal immune system. People have a pet.
Mélanie Dieudé: And and 21% on hold. Within thank you so much and and think about this situation because we're going to bring you in the world of push it. Uh huh. And I'm going to go directly to a land to share
Mélanie Dieudé: What her idea is I think this project is really a good example of patient donor and family initiated project so ln
Helene Tessier: Hi.
Helene Tessier: I don't see
Helene Tessier: Okay. Hi, my name is a lengthy see I am a veterinarian and
Helene Tessier: Also, the mother of
Mélanie Dieudé: Two Boys.
Helene Tessier: Today I'm here with Melanie
Helene Tessier: Judy and my son, Laura.
Helene Tessier: To talk about our project came about and how it's progressing.
Helene Tessier: Project was born out of the recognition that people need to have the comfort of their pets around them, even when they are immunocompromised
Helene Tessier: In addition, the project or first the medical community a chance to discuss the many benefits of contact with bits. And finally, promotes the work and collaboration of several branches of researcher to find acceptable and safe solution.
Helene Tessier: Now, a bit of why I personally am involved in Brazil over at age of then my youngest son was diagnosed with liver cancer.
Helene Tessier: Yonder went several surgery chemo radiation treatment and finally a liver transplant as a result of having a new liver
Helene Tessier: Lara will have to take immunosuppressant for the rest of his life and being events. Animals are part of our life.
Helene Tessier: Given the VA has immuno compromised immune system. The general attitude, even in cameo of the medical community was that this could potentially be dangerous for Laura, we don't have so much information.
Helene Tessier: So after spending several years in and out of the hospital life as return to a new normal. And I finally have time to read the journal of the vet medicine.
Helene Tessier: And our new slogan. Cool. So teams moon, I will translate for the World Health
Helene Tessier: Which means that finally vestments in human medicine and other proficient will work together to improve quality of life for both human and animals.
Helene Tessier: I was so excited I decided to phone the Dean of the Faculty at this moment. Dr. Cathy, to congratulate him on this initiative.
Helene Tessier: We had a wonderful discussion about the importance of having animal companions in our life and the lack of clear information on the impact bets are on our well being and how we might find solution without asking too many question.
Helene Tessier: Doctor, can hear her in my message and begin to put the wheels in motion.
Helene Tessier: You had a discussion with researcher Dr de Paris delicious at the Faculty of Medicine and Melanie Judy of the CD tarp.
Helene Tessier: And from the beginning until now project law has counted on many collaborators and we continue to add new ones. I would like to mentions
Helene Tessier: That and medicine students, researchers students and your researcher like is a better way. Can you do therapy process Levi counter apology Michelle shiny red specialists and communications silverback our equation partner at see the tarp Stephanie and I
Helene Tessier: Were to make our project as accessible to haul with their beautiful image and amazing with website. What a team. I can express
Helene Tessier: Are proud I am I am grateful for all the people, people that are getting involved in the pleasure. It really touched me. And now I will tell you how is sped up to him to his challenges.
Helene Tessier: Hello. So my name is the horn and I'm a great 10 students. I've I'm a really active boy I've always of science and new technology. I've always been really active I enjoy sports and pushing myself to the limit
Helene Tessier: But unfortunately in September of 2014 when I was 10 years old my life I could say took a totally different turn
Helene Tessier: One night I had a terrible stomachache. But everyone's simply thought I had eaten too much ice cream. The night before.
Helene Tessier: Because I was at a family during you know when you're at your grandparents. Let's say that you eat a lot
Helene Tessier: But the next morning I still have that terrible stomach ache and it was, it was just getting worse and worse and it was draining my energy
Helene Tessier: So that night I decided to go to bed, very early, and I was lying in bed. My dad notice to lump on my stomach. That's when he decided to go to the ER.
Helene Tessier: After a blood test and ultrasound scan basically all the tests you can possibly imagine the diagnosis finally felt liver cancer.
Helene Tessier: With diagnosis, came the announcement that I would have to undergo aggressive chemotherapy, though, is going to be any chance of doing surgery.
Helene Tessier: It was very hard. I couldn't even eat. I was fed through to bomb in my nose and I was just lying in bed. The whole whole day cuz I just couldn't do anything at the end of my first Alex chemo, the tumor was still not operable so the only option left was a liver transplant.
Helene Tessier: On Christmas Eve is finally going home for the night in the first time in many months to spend a day at home, but when my mother got a phone call a compatible liver was finally available. I can't say that I was disappointed by that.
Helene Tessier: By that news because that was probably the best use I could ever get on Christmas, but at the same time, I was kind of sad that also meant that I wouldn't be able to get back home to see my pets since and been month that I haven't seen them.
Helene Tessier: That's when my dad decided he knew that I really need to go see my pets because you know
Helene Tessier: I was really kind of stressing out from seeing the that huge surgery that was coming up ahead. So he said, all right, we're gonna since we're already halfway there which is going to go back home pet the the
Helene Tessier: Pet the animals a minute or two and then go straight back to the hospital. And that's what we did. I would say that after, after I sped it. I have to I pet my cat my dog. I was ready to face that challenge. I was heading up ahead.
Helene Tessier: Just to give you a little example before my transplant at say I were about 100 pounds soaking wet. But after my surgery, thanks to quit to zone at weight easily 175 pounds.
Helene Tessier: But even through all these changes, I'd say my cat and my dog and now if my pets would look at me the same way with the same look honestly they didn't even see anything different.
Helene Tessier: In the spring of 2015 everything was going well. I had we started my physical activities. Now, everything was my life was time to come back to a new normal.
Helene Tessier: But after the beginning of the summer after routine scanning my doctor Suki had bad news for us the cancer was back at this time in my lungs.
Helene Tessier: So I needed to go but so I needed to have surgery to remove remove the novel from my left lung. But first, I had to go through another round of chemo to progress the control the progression of the disease.
Helene Tessier: I was weak very weak. I had many secondary effect. So I spend another Christmas at the hospital after all of that I had to get myself back into shape, but just to walk around my bed to call my strength.
Helene Tessier: For a long time. I've asked my parents for a dog and that's when they finally accepted.
Helene Tessier: I had to take a lot of professions because of my illness, but it was because of him that get out of bed. Put on my boots and take a walk outside almost every day because I knew that he needed it just as much as I did.
Helene Tessier: In the spring of 2016 I was doing better and better. But there was still something of normal my right lung that couldn't be removed by surgery. So that's when Dr. My Suki suggested experimental treatment now coach genomic called targeted therapy. It has a lot less side effects and conventional
Helene Tessier: Chemotherapy I was just going outside going back to school and I only had the only thing I need to take was one pill a day. The only pretty much big side effects that it had with muscular cramps and that's pretty much it.
Helene Tessier: To top it off, I also had radiotherapy to be sure that everything was gone.
Helene Tessier: At that point, my nursing my Dr Murray's my nurse Murray's in my doctors were worried about my mental health.
Helene Tessier: So that's when it is that when they thought they decide they want me to see up psychologist at the hospital.
Helene Tessier: I simply told them that I didn't need any because I already had to waiting for me at home, of course, I met my pets. For all these reasons, and many more. I like all immunocompromised patient to benefit from the unconditional love of the annual campaign, just like I did.
Mélanie Dieudé: You want to you want to present sushi.
Helene Tessier: Yeah, so
Helene Tessier: As you probably see from the image is a border collie. So we can say that he's a little hyperactive.
Helene Tessier: So making sit on the couch is pretty hard, but
Helene Tessier: Yeah, but
Helene Tessier: That's
Why
Helene Tessier: And then, then we have my cat that's just a lazy boy chilling on the couch, but
Helene Tessier: There you go.
Helene Tessier: We have the cat and the dog with
Helene Tessier: There you go.
Mélanie Dieudé: Thanks so much.
Mélanie Dieudé: For
Mélanie Dieudé: For this
Mélanie Dieudé: very touching again testimony and your experience and how you can build on that experience to create the research projects. So you guys
Mélanie Dieudé: Identify a need
Mélanie Dieudé: And when and really the mission of plush aloha is to really look at the risk benefit of owning a pet for chronically immunosuppressed immuno
Mélanie Dieudé: Compromised patient, and in particular the graph recipient.
Mélanie Dieudé: So,
Mélanie Dieudé: To
Mélanie Dieudé: To we need to acknowledge the idea and the inspiration of Aloha and 11 and the rapid involvement of Michelle caddy
Mélanie Dieudé: The Dean that Ellen was talking about before that really started, you know, talking about this potential project to his colleagues Christopher project Chris Perez villages was a new investigator at the vet school and he jumped on this project as well. Michelle bit by President of the
Mélanie Dieudé: Is also part of our team I and you'll see the website, very soon. And we're excited is is key. She's a an awesome scientific graphical designer and illustrator.
Mélanie Dieudé: So this is the best part of the thing, but because we wanted to look at the risk benefit and to really tie the human and and that's medicine.
Mélanie Dieudé: That's when I came along. I mean, the monologist from University of Miami and then we have of course our National City, maybe a dog and I there to present Shelly beta our city official CD therapy patients support.
Mélanie Dieudé: He's a bad day came on board. Oh, it's totally there Alicia, Alicia.
Mélanie Dieudé: She's a star user very Kinesiology so sociology and mental health specialists, she'll be she'll be talking this afternoon of one side of a pleasure behind coven
Mélanie Dieudé: A young and dynamic researcher so proud to involve her metadata for today. Of course, you saw her before she's also involved. We have an entire biologists on the team.
Mélanie Dieudé: If classes live egg from your amazing Stephanie Latif yes and Natalie Bezos, and our research associate that are doing an amazing job for this project.
Mélanie Dieudé: But this was not enough. So we had enter politics MDM acknowledges that this is growing. This is growing even more.
Mélanie Dieudé: So because it has such an impact on mental health and that we really strongly believe that looking at the health of patient also involved, of course, physical health, but also mental health.
Mélanie Dieudé: And and and so we we reached out and got an amazing response from a from people like Susan Abby psychiatry is a psychiatrist in chief at UNH and
Mélanie Dieudé: People with physical activity and mental health people that are the expert in mixed method in rural health in exercise and well being.
Mélanie Dieudé: nephrologist that are working on patient reported outcome and and Carol isn't a medical that anthropologist particularly looking at the perspective of First Nation and matey broke
Mélanie Dieudé: It in that question as well. So, I wish to thank all those collaborate with just jumped on on the idea and to help line and Ellen answer their question that I think many of you share as well.
Mélanie Dieudé: Of course, I have to mention our amazing trainees, I give their time and their energy and are so active in and being part and so excited, of being part of this project as well.
Mélanie Dieudé: So in a nutshell, because I see time flying really what we want to do is determine current evidence based knowledge really identify the gaps in knowledge, what's there and there's very little for him and depressed recipients, I have to say.
Mélanie Dieudé: Then we needed to inform patients finally condition that's general population. And this starts today. This starts when we talk, but this starts with our new website that I'm going to launch
Mélanie Dieudé: With the team later on. And I have to say that some people from the team are also on the online right now and I wish to thank them.
Mélanie Dieudé: We need to identify those no knowledge gap perform research, we have started, we have many subsection of research and I'll tell you a little bit after we wants to, of course, improve practice and improve patient quality of life.
Mélanie Dieudé: What's so special about this pleasure.
Mélanie Dieudé: First, it's a patient and family and caregiver identified knowledge gap.
Mélanie Dieudé: We're very brilliant as researchers, at least we think we are, but we never thought about looking at that and that's very important. I think as researcher, we absolutely need to be
Mélanie Dieudé: Aware and looking and getting ideas from patient donor and family to make significant and meaningful research.
Mélanie Dieudé: It's a patient partner researchers co creation advice 11 lucha there.
Mélanie Dieudé: They're involved and other people actually other Members are also involved in designing prioritizing and and really directing the research of course as researcher, we bring our
Mélanie Dieudé: Expertise and in our little world but patient partners are key. It is highly multidisciplinary like I showed you. You didn't uniting vets vets human medicine mental health and the geology anthropology and more
Mélanie Dieudé: And it's improving health in a holistic approach thinking about physical, mental and quality of life.
Mélanie Dieudé: So now it's a very exciting moment for us because we're launching officially
Mélanie Dieudé: The website and I just want to show it to you very briefly.
Mélanie Dieudé: I'm going to re share my screen. I think
Mélanie Dieudé: Do you see it.
Mélanie Dieudé: You guys
CDTRP Tech: See it, yes.
Mélanie Dieudé: Allah. Allah. This is we're very proud. So you can go to closure.org there's a French and an English version on this website you find a description of the project. The team.
Mélanie Dieudé: As you can see, and even more important, probably some information on zone noses on immunosuppression you're going to find a lot. Everything we find all their lips review that we bring up. We are going to put on the website.
Mélanie Dieudé: And for example, the explanation about a mineral deficiencies.
Mélanie Dieudé: And of course, we're going to talk about research. So this is an example of a project that is a bed a little present this afternoon, the impact of covert 90 but I make on immunosuppressed population and the relative
Mélanie Dieudé: And and you're going to see. So keep on going on pledge at AHAVA org. We're going to keep this website active and we will make sure that you get all information about research project and we're, we, you can write to us as well.
Mélanie Dieudé: And we're very hot. Looking forward to get your input and your ideas and we hope that we're going to be meaningful for a lot of people
Mélanie Dieudé: So I think now it's time for some questions.
Sylvain Bédard: Missy Melanie, so we have, I would say five minutes. Question session I'm Samantha Samantha. Yeah. If you have questions or if people have questions and we will take five minutes and then we keep going on with our regular program, any questions anyone
Sylvain Bédard: Yeah.
CDTRP Q&A: Yes.
CDTRP Q&A: So we had a question from Julian.
CDTRP Q&A: In the chat. I'll read that out.
CDTRP Q&A: She says my younger brother.
CDTRP Q&A: Miles Lynch became the first Canadian to have three double lung transplants. He received his first transplant at 17 the second transplant at 19 and his third transplant at 22 years old.
CDTRP Q&A: Where can young patients and young caregivers, like myself, have our voices included and have our insights into the transplant experience shared with researchers, if we are deeply interested in pursuing research for patient advocacy. What are some resources to get started.
Mélanie Dieudé: Yeah, I think I can probably answer that advice. Do you want to go for it or
Sylvain Bédard: No, you go. I've talked enough
Mélanie Dieudé: I did too.
Mélanie Dieudé: So one thing you can do is reach out to citizen, actually.
Mélanie Dieudé: At the CV tarp platform were always looking for patient that want to be involved in research. Now, I think it's very important to make differences be
Mélanie Dieudé: The big difference between advocacy and research. This is a very different process. So there are groups that are
Mélanie Dieudé: And we have a lot of partners that that are really good for advocacy ended. This is really important and feel and I understand that for CDT RP, it's more to be involved in research project provide ideas and guide research.
Mélanie Dieudé: And if that's what you want to do, or, in any case, you can reach out to the CTR platform will be happy to direct you to the right place and and to also
Mélanie Dieudé: Really get a feel of what type of you know what type of implication, you're looking for what type of project you're looking for.
Mélanie Dieudé: And and we're, we're, you know, really matchmakers and Sydney love to do matchmaking, so that's what he does, he's he's doing the matchmaker between researchers and patients.
Sylvain Bédard: And
Mélanie Dieudé: A question.
Sylvain Bédard: And if I can go with
Sylvain Bédard: That I think that there's a lot so if you want to have the patient boards. There's a lot of if you go on Facebook. There's a lot like they are CTA, there's all the Kidney Foundation depends on where you coming liver foundation. So there's a lot of
Sylvain Bédard: Places.
Sylvain Bédard: That fibrosis.
Mélanie Dieudé: Cystic fibrosis and
Sylvain Bédard: There's also donation sites and all that. So there's the advocacy thing.
Sylvain Bédard: That is there and choose the good ones, like the ones that are pertinent you know that you can pick everything on Facebook, but it doesn't mean that it's good if it's on Facebook. So I'm just saying that
Sylvain Bédard: And I keep learning that law. You should learn that it's not because it's on.
Sylvain Bédard: It's on the web that it's a good reason or it's a good thing.
Sylvain Bédard: Okay. Just remember that. Okay.
Sylvain Bédard: And for sure. We have great involvement and possibilities for for patient partners or wants to be a PFD
Sylvain Bédard: Like donor is also like family that want to get involved in
Sylvain Bédard: In our projects. And yes, you can reach for me and you can go onto a
Mélanie Dieudé: Website of
Sylvain Bédard: CDC RPM or and they will they will tell you. Any other questions before we switch to actually
Mélanie Dieudé: Another great night we
Mélanie Dieudé: Busy I see a question from Sam to LA. Ha. We can you meet yourself. So did you have to deal with depression and panic attack and did sushi admin is a whole help
Mélanie Dieudé: He imagined and how so
Helene Tessier: Um, I mean, I can't really say that I've been through depression, precisely, but at the same time, you know, when you're in an environment like the hospital where you're just getting
Helene Tessier: constantly getting medicines and getting things that use like you don't really necessarily understand all of them, you know, and you just
Helene Tessier: Kind of don't really know what sort of happens, you know, a kind of really can get stressful but at the same time. I've never been through a point that I've had any panic attacks.
Helene Tessier: Because majorly I'd say cuz I always have my cats are there for me but I
Helene Tessier: I don't know if the outcome would have been probably similar if I wouldn't have my dogs are my cat that had been there. I can't tell, but I'm I know that my cats and my dog.
Helene Tessier: Have been very much there for me. I've been always there for me when you know I've started to get really stressed and I was like,
Helene Tessier: The mainly main. The main thing that I really got me stressed is when I had to get back into the hospital.
Helene Tessier: When I was, you know, thing was trying to get back to normal. And when I really the that there was a news that I have to go back for
Helene Tessier: Pretty much almost another year in the hospital and just thought I was going to get out that really, you know, it's, it gets me
Helene Tessier: It gets me really stressed and he just, it's not something that's easy to you know the deal with. So I just
Helene Tessier: I said that my cat really helped me read there and and just say, Come on. I'm going to get through this. And after that, that's going to be the last thing I'm gonna do and I'm going to be good. After that, and if there's going to be another problem.
Helene Tessier: Is I'm going to go through it and then it's going to be over. And then I'll just live life like any other one so I say that my cat really helped me to just go through these moments in my dog when I had it. Um, but I've never went through a depression but yeah
Sylvain Bédard: I can add some
Sylvain Bédard: Specific on
Sylvain Bédard: You know, when we are when we talk about pets Charlie has helped me a lot to move. So when you're a transplant recipient and brand new transplant recipient, then you're encoded. And there's a pep
Sylvain Bédard: An Australian Shepherd, that tells you, at eight o'clock around every evening a big guy. You have to go for it. We have to go for a walk.
Sylvain Bédard: There's, it's the risk of having a pad, but the benefit of having a pad that will force you.
Sylvain Bédard: To go out and having a walk. Take doing it. You're the size. We do know, we don't have to go over that we do know that it has been if it for mental health and support and i know i think you would agree.
Helene Tessier: Like I kind of said in my, in my text. Yeah, right. When I got through the my second transplant and my second round of chemo.
Helene Tessier: I was barely able to move. Just go. I couldn't even pick up to go to my house. There's a couple of stairs.
Helene Tessier: The first time I came back to my house. I couldn't even go up these three stairs to get to my house.
Helene Tessier: So that was really, really likes and seven really painful moment. So that's when you know I really, when I chose my dog. I didn't want a dog that's lay around all day.
Helene Tessier: I want to duck that would, you know, he forced me to go outside. He'd say, I really need to go outside. So, go with me. So that's why I went for my dog.
Helene Tessier: That's a border cool the that's the most energetic dog. I've ever seen in my entire life. So yeah, he really really really helped me to say, all right, I have to go for a walk.
Helene Tessier: Today is or else I'm just going to stay in bed and I won't get stronger, so he really, I can say that as well. If you really, really helped me get active. Yeah.
Sylvain Bédard: So messy lava, you're a great guy, you know, and masculine messin any. We're now going to take a break of five minutes. So let's come back at 1206 I used to be a stage manager before so 1206 everyone. We're taking a break and then we keep going with more amazing people to meet
Sylvain Bédard: And five minutes, so have a break. Thank you.
Sylvain Bédard: Hope that everyone had the time to either check if they take their pills.
Sylvain Bédard: Because it's important. I just forgot them. So I just went to take mine. And so the next presenter is a is a researcher is an intensive this, but most of all I want to say an amazing human being. And this is why he's doing.
Sylvain Bédard: Such a great job.
Sylvain Bédard: And I will let him present and this is another completely other point of view on how to collaborate with donors, because I said you have the donor thing that is so important for me and Sonny has done a great job. So
Sylvain Bédard: Your time Sonny.
sonny dhanani, researcher ottawa: Okay, thank you. I was hoping you would say, and most of all, he's a great friend because I think that over many years. The most important part has been the friendships that we've developed and and and they're ever lasting and i think that's that's most most important
sonny dhanani, researcher ottawa: And I think you'll, you'll see that coming up. I really appreciate the opportunity to present and I'm going to try to share my slides here. I think it should work. You see that
Sylvain Bédard: Yes. Wait. Okay.
sonny dhanani, researcher ottawa: It seems that I can't go to full screen.
sonny dhanani, researcher ottawa: It doesn't matter. I'll leave it like this, if that's okay.
Oh no, oh no, you don't want to see that. Sorry, guys. I'm here.
sonny dhanani, researcher ottawa: Can you still see this now.
Sylvain Bédard: Perfect.
sonny dhanani, researcher ottawa: Okay, thanks so much.
sonny dhanani, researcher ottawa: Thanks so much.
sonny dhanani, researcher ottawa: I want to tell you our, our journey through through this experience of working with CDT RP patients and families in our partnerships and, you know, I really want to tell you about a project, but not focus on that.
sonny dhanani, researcher ottawa: This, this has been an important part of my life. And we think we're going to make an impact for donation transplantation in a big way. We're all here because we know there's a shortage of organs and many people need transplants and we're hoping that we get transplants for life.
sonny dhanani, researcher ottawa: We all show are here because we respect the patients who are donors and their families who have struggled through something
sonny dhanani, researcher ottawa: Terrible and in comprehensible and
sonny dhanani, researcher ottawa: And and still we see the strength in these people to support us through this need and we know organ donation is increasing every year and transplants are better every year, but they're still not enough. And part of the reason is, people are still nervous about the process of organ donation.
sonny dhanani, researcher ottawa: This came out on CBC, a few years ago. And even though we were represented there are community.
sonny dhanani, researcher ottawa: The spirit of it was that the system was taking organs from people who weren't dead.
sonny dhanani, researcher ottawa: Or nearly dead and we realized that there was a real gap in knowledge and if we wanted our systems to work. We need to make sure that there was trust in the system and this would allow patients and people to go on doing a registries. This would allow people to accept.
sonny dhanani, researcher ottawa: Donation at the time of grief, it would allow our medical community to advocate for donation at end of life care and all these things have happened. And we think we're helping them.
sonny dhanani, researcher ottawa: What we decided to do or we needed to do is in the process of donation understand how people die and to do that.
sonny dhanani, researcher ottawa: Change the practice and add trust to the practice of Oregon recovery. When someone dies in intensive care unit, they are declared dead by brain death criteria and you hear that in the news or after their heart stops.
sonny dhanani, researcher ottawa: And only after we are confirming that the hardest stopped and no more circulation than organ recovery can occur. So you need to be dead to donate
sonny dhanani, researcher ottawa: And that's what we call the dead donor rule. And so we wanted to verify our standard of waiting five minutes before donation would occur. And so to do this, we had to go into intensive care units and monitor people as they were dying. Keep monitors on
sonny dhanani, researcher ottawa: This is a very personal experience. And here we were collecting data, sending it to an Amazon server.
sonny dhanani, researcher ottawa: downloading it and have people review the vital signs that changed how things stopped and if they restarted people were worried about this concept called auto resuscitation. And so we created this study. This is my core group there and some really important people.
sonny dhanani, researcher ottawa: supported this including CDT RP
sonny dhanani, researcher ottawa: Right from the beginning.
sonny dhanani, researcher ottawa: And so we wanted to ask this question does auto resuscitation really occur. The idea that once you're dead. Can you come back to life and you must admit, you've heard stories in newspapers on 60 minutes
sonny dhanani, researcher ottawa: Are these real is this the situation that we should worry about in the event of an organ donor.
sonny dhanani, researcher ottawa: And so we created this system of monitoring blood pressures and hard activity and breathing during the dying process so controversial no healthcare worker wanted to do it no physician wanted to do it and we suspected no family was very keen on it.
sonny dhanani, researcher ottawa: Everything changed when we met, Heather.
sonny dhanani, researcher ottawa: Heather Talbot had gone through an experience with with her own son as a donor and gone through the end of life process within an intensive care unit gone through that grief and it wasn't until she came along and we discussed this study with her.
sonny dhanani, researcher ottawa: You know, after collaborating right at the beginning with CDT RP maybe one of the first patient family partners.
sonny dhanani, researcher ottawa: And she
sonny dhanani, researcher ottawa: She understood we brought her brought her and her daughter to Ottawa.
sonny dhanani, researcher ottawa: We had a an afternoon meeting. We sat, we got to know each other, we went for dinner. And I remember those moments. Specifically, one of the greatest parts of our research so far not the results, but the bonds we created over the years.
sonny dhanani, researcher ottawa: And I remember, Heather. At first it was all phone calls and then slowly. It was emails and now at zoom calls
sonny dhanani, researcher ottawa: It's amazing the way we've progressed, she helped us with our protocol. She said, we're doing the right thing. We're asking the right questions. She helped us with our consent forms. She helped us with our
sonny dhanani, researcher ottawa: Our protocol actually so that the ethics board would understand it. She guided us on what was okay. And what was not. And in fact,
sonny dhanani, researcher ottawa: 93% of the families. We asked to participate in this study 93% said yes that consent rate in a research study in general is double what it usually is. And we think that's because of Heather's input.
sonny dhanani, researcher ottawa: We learned a lot. Heather wrote a paper with our team. And again, thanks to the CD tarp for helping us here for IBM Marissa shauntel so then himself really guided us into developing how we should do this.
sonny dhanani, researcher ottawa: What what what what Heather needed to learn what did we need to learn so that we could work together.
sonny dhanani, researcher ottawa: challenges faced that we realized in this paper well people's time and money were important.
sonny dhanani, researcher ottawa: Communication how we did it normally through, you know, quick long, lengthy emails was difficult for us. And of course, the emotional stress of participating in these difficult conversations was hard for both sides.
sonny dhanani, researcher ottawa: So many positives. We change how we did our research and we saw the success event and from there we motivated to doing new research that I think we saw in the last presentation.
sonny dhanani, researcher ottawa: Are not driven by the medical community and what we need to answer that's important too, so that we can get our
sonny dhanani, researcher ottawa: Ship straight but answer. What's important to the donor families and the transplant recipients and their families so that we're answering the right questions in the long run, and we can work together.
sonny dhanani, researcher ottawa: We realized that this was feasible and I think from their CDT RP other research organization, especially in intensive care and transplant domains realize, not only can it be done.
sonny dhanani, researcher ottawa: This is the better way to do it. It was transformational. And I think that was really important. We couldn't get enough of Heather. So we asked dawn and Patty bring Khloe Dawn got a heart transplant.
sonny dhanani, researcher ottawa: Several years ago and he joined our team so that we got different perspectives.
sonny dhanani, researcher ottawa: From dawn on the transplant side and Patty, his wife as a family member.
sonny dhanani, researcher ottawa: Looking at things from a different perspective. And again, we've moved forward, not only to review our protocol that we have already made to having these three individuals start and be part of the initial conversations when we form the ideas so that they're there for the entire process.
sonny dhanani, researcher ottawa: This was a meeting we had in Trump law. And as you can see right at the right at the front are three key members of Heather done and Patty joining our research team to take
sonny dhanani, researcher ottawa: Art research, but take things for it so that this is a true collaboration and we're really, really proud of it. Our next study is something called a donation advisor, where we think that we can better help in real time learning what we've learned so far, how
sonny dhanani, researcher ottawa: Who and and and at what timing someone at the end of life can be a donor so that we could help eventually families make decisions.
sonny dhanani, researcher ottawa: That coordinators make decisions, the transplant team make decisions. So, we can have more transparency in the donation process. And again, these three collaborators have been key to the development of this what looks like complicated science.
sonny dhanani, researcher ottawa: So again, thanks, everybody, for listening to my short story. I think you'll hear more from Heather.
sonny dhanani, researcher ottawa: But really our study really is is appreciating the collaboration we have with CDT RP the individuals and their families that consented. And then our patient and family partners. And you can see this picture. It really does look like a family.
sonny dhanani, researcher ottawa: family portrait that is to me.
sonny dhanani, researcher ottawa: And and it really feels like that way so thank you for your time. I'll happy to take any questions.
Sylvain Bédard: So we'll take that question after that to others because Heather will be there, by the way. So Heather kit might answer the question that that were asked to her.
Sylvain Bédard: But thanks thanks Sonny. This is a it's always touching for me to see how much you guys I've worked together, and especially Heather with you so, so I'll stop doing that because you know I feel with donors.
Sylvain Bédard: And okay next person that I want to present as Sarah pools Sarah works with cement antone there two great
Sylvain Bédard: People that are are working and pediatric with the prompts patient reported outcomes outpatient feel and caregiver and all that thing. So thank you, Sarah and
Sylvain Bédard: Have fun.
Sylvain Bédard: You can go yeah
Sarah Pol: Okay, I'm just going to put it to presentation mode.
Sarah Pol: So hi, everyone. My name is Sarah pole and I'm a research coordinator in the Anthony lab at the Hospital for Sick Children.
Sarah Pol: And I wanted to thank the CD tarp for the invitation to share my experiences today at the Forum and also more broadly, for being a wonderful resource for our team.
Sarah Pol: Helping to connect us with patient family and donor research partners with pediatric transplantation centers across Canada coordinating research meetings supporting grant applications, the list goes on. We're very grateful for their support.
Sylvain Bédard: Trying to go forward. Yeah.
So,
Sarah Pol: I'll be discussing
Sarah Pol: The importance and impact of family and caregiver involvement from my own
Sarah Pol: From my own perspective and some of the lessons learned program. So in the Anthony lab our research is very patient driven and all the questions that we have are coming from the patients and families themselves.
Sarah Pol: And the main topic of the research is about patient reported outcome measures and this project is about understanding how patient reported outcome measures can be best integrated into clinic.
Sarah Pol: So some of you may have filled out patient reported outcome measures yourself and there are essentially
Sarah Pol: Any report coming from
Sarah Pol: The patient or caregivers that respond to how the patient is feeling. And as we like to say in our lab capturing the patient voice.
Sarah Pol: So patients and family members and caregivers were involved in different ways throughout the project, but I'll be focusing on how they were involved in the second phase, which was interviewing 22 caregivers 20 p
Sarah Pol: Health care providers to learn about their perspectives and suggestions for how patient reported on full impact. So there are two ways that I worked alongside family and caregivers during this project.
Sarah Pol: So the first way was for family and caregivers as research participants. So we asked them what clinic was like how prompts can be most meaningfully
Sarah Pol: Integrated what prompts would be best to ask patients and caregivers to complete. What are some various facilitators and the fact that we received greatly impacted
Sarah Pol: Our current stage of research. So I'm going to present some of the lessons learned in the form of quotes
Sarah Pol: So, one can you ever said filling it out before would be better. You can do it at your own leisure right as clinic is so rushed
Sarah Pol: Another caregiver said I would love it for, for it to be online because there's too many papers to fill out to put a tablet in front of a kid, they will get excited about that.
Sarah Pol: And another caregiver said, we do a lot of questionnaires. You give it back. And then nothing you kind of just ask yourself.
Sarah Pol: Why are they asking this. So I think the three lessons learned, even from those three quotes as that prompts are could be best reported
Sarah Pol: Pre clinic also electronic and that for caregivers and patients alike, it's important to have that follow up.
Sarah Pol: So the impact of this is as researchers, we're really learning about how this project would work in the real world, or other how prompts could be integrated in the real world.
Sarah Pol: And it makes the results, a lot more meaningful and I think this also highlights just kind of the importance of hearing from families and caregivers on projects such as this.
Sarah Pol: We also had families and caregivers involved.
Sarah Pol: In reviewing drafts of manuscripts and documents prior to submission for knowledge translation and knowledge dissemination. So in this city. We're asking in carriers. Was it easy to understand.
Sarah Pol: You know, are there any kind of concerns that they may have an the lesson learned here is really, I think, the importance of accountability and asking if we're representing the caregiver voice correctly. And again, just highlighting how important the caregiver and Family Voices
Sarah Pol: But of course it's not all rainbows as Sonny also mentioned, there are some challenges, sometimes and I was able to receive some feedback with regards to family and caregiver engagement and one one lesson learned was really around communication and that
Sarah Pol: Communication should be clear and
Sarah Pol: Interested family and caregivers should know how they can follow up.
Sarah Pol: And and be involved in the research and then also another point of feedback around just kind of, in general, you know, timing and time commitment. So in the example of the interview that might be a one hour interview.
Sarah Pol: Versus a longer commitment as a collaborator might be over a more significant period of time, but have a more variable amount of time commitment.
Sarah Pol: Some final thoughts. I just want to emphasize how important and how much as researchers, we value the engagement of family and caregivers and how important it is for
Sarah Pol: The final the final outcome. And of course, early on as well, kind of guiding the research and
Sarah Pol: Being able to answer questions that are important to patients, families and caregivers.
Sarah Pol: Of course, where there's a big team.
Sarah Pol: Of investigators partners lab members different institutions as well.
Sarah Pol: And I wanted to finish on this quote. So the quote is families obviously very important to quality of life and I included this quote, both as lessons learned about the importance of recognizing how significant family is in
Sarah Pol: A patient's life. But I think also more broadly about how you and I could be approaching the work that we do. Thank you very much for your time.
Sylvain Bédard: Messy so much Sarah. And as I said, I see questions going by. Keep your question, we will have a block of questions for everyone and
Sylvain Bédard: So without further ado,
Sylvain Bédard: I want to present you one hell of an amazing woman, Heather. TALBOT And so are there. Are you ready. So we have Heather Talbot was a
Sylvain Bédard: A MOM.
Sylvain Bédard: That lost her son, but she has become an example for me and I'm always Touch it. Touch when I present, Heather. Sorry.
Sylvain Bédard: I'm a double heart transplant. So I know, I know the meaning of that and I have four or five sons, and I know what would be the feeling of I.
Sylvain Bédard: Know, I can't imagine what would be the feeling of losing one. So this is for me. Really important to present you, Heather. And I also want to present Joanna. JOANNA
Sylvain Bédard: Is a mom of a heart transplant recipient and she has all her issues, but she has she had also to be strong, cuz I was a kid. Once I didn't have a heart transplant that I was sick, and I was a nightmare for my mom and my dad. So Heather and Joanna. Go ahead. We're listening to you. Yeah.
Heather Talbot: Okay, so my name is Joanna starting, I
Joanna Mitchell: Heard, if you like.
Joanna Mitchell: Yeah.
Heather Talbot: Thank you Anna.
Joanna Mitchell: Hi everyone. So as still being mentioned MY DAUGHTER RILEY had a heart transplant.
Joanna Mitchell: And you may have seen on Facebook. There's a meme. It says that a worried mother does better research than the FBI, and I would certainly agree with that.
Joanna Mitchell: WHEN MY DAUGHTER RILEY was first diagnosed at two months old as being in heart failure and we were told that she was going to need a heart transplant. I started reading everything that I could
Joanna Mitchell: I was going to be making decisions that would affect her for the rest of her life. So I wanted to know what were the current treatments.
Joanna Mitchell: And what kind of research was out there that was going to help to improve things in her future
Joanna Mitchell: Also her heart Jeanette her heart disease was genetic in our family. So I wanted to know how that was going to affect her family and future decisions we made. So to me, research, whether formal or informal was important to our family right from diagnosis day
Joanna Mitchell: When I started becoming involved in research as a patient caregiver. I had three goals in mind.
Joanna Mitchell: One of the first one was I wanted to look at ways of making life better, both now and in the future for Riley and for any of our other affected family members.
Joanna Mitchell: The second one was to ensure that when the time came, if she needed a second transplant an Oregon was going to be available for her and my third focus was
Joanna Mitchell: To also provide better mental health supports, not just for her, but also for our family as a whole.
Joanna Mitchell: Often the research is focused on the individual patient but Riley was actually too young to remember any of her transplant experience.
Joanna Mitchell: And what she went through, but as her parents. It was a very traumatic experience and the trauma and stress that we experienced this chronic like it still happens today and 15 years later, she's almost 15 years post transplant and we needed to find ways to help to manage this.
Joanna Mitchell: So to accomplish these goals. There was a few initial ways that our family became involved in research.
Joanna Mitchell: The first one, my goal of making her life better. Well we accepted Riley being enrolled in various research studies herself as long as it wouldn't affect her ability to enjoy her life or the quality of life.
Joanna Mitchell: She I signed on the line. Some of them I think she's still in those studies. Today I can even tell you what they are, but I know that in the end. Those are going to benefit her and other transplant patients.
Joanna Mitchell: The second thing was we wanted to bring awareness to the benefits of organ donation. A lot of this included advocacy sharing Riley story with the public, but it also looked at researching ways that we could bring greater awareness to the importance of being an organ donor.
Joanna Mitchell: And the last area was the mental health supports in formerly our family connected with other transplant families in the community and supported one another.
Joanna Mitchell: But I also had had many conversations with Samantha Anthony who's we've mentioned Sarah mentioned in her talk
Joanna Mitchell: Samantha was actually our social worker at the time of Riley's transplant and we had many conversations between ourselves about areas that were lacking and things that can be improved.
Joanna Mitchell: So with these goals in mind I became more formerly involved in three different research projects. Some of these were through CD tarp.
Joanna Mitchell: And there was some through other organizations. So the first one was called Register now. And this was actually looking at ways of increasing organ donor registration by utilizing family doctors offices.
Joanna Mitchell: I became involved in this one purely by accident, friend of mine who's not connected to organ donation had an old University friend that was looking for.
Joanna Mitchell: Some people involved in the organ donation community for this project and she recommended me so this fell under my goal of increasing organ donor registration to ensure that there are organs available if Riley ever needs another one.
Joanna Mitchell: The next two projects that I became involved with were through some Anthony and those conversations that we had had long ago.
Joanna Mitchell: So Sarah had touched on the the proms projects. And for me this research project.
Joanna Mitchell: Looks at recording how the patient is feeling, both physically and mentally on a day to day basis and incorporating that into their treatment plan.
Joanna Mitchell: So this doesn't just look at their lab results in those few hours that they're in clinic, but it
Joanna Mitchell: Looks at the whole picture. So for me this was looking at how do we make life better for Riley, she becomes older and takes more responsibility for her own health. This is another way of assisting in doing that.
Joanna Mitchell: And the last project that I'm involved in was Mindfulness Based Stress Reduction retreat. So this was a project that was looking at
Joanna Mitchell: Teaching moms of heart transplant children ways of managing their stress, the reality is we all experienced some sort of mental health illness living through this trauma with our child.
Joanna Mitchell: But if we can learn ways of managing our stress, not only do we feel better and cope better but that also reflects down to our child and how well that they will do
Joanna Mitchell: So this project touched on a couple of my initial goals, not only of making life better for Riley, because I felt better but also like the overall mental health of the family.
Joanna Mitchell: So for me, becoming more formally involved in transplant research has sort of been a progression, you know, starting with my own
Joanna Mitchell: Reading and then becoming more formerly involved through CDT RP but
Joanna Mitchell: Being part of this has made me to help feel like I have some control over the progress and the direction that the research is taking living the transplant life 24 seven is very different.
Joanna Mitchell: Than the outside reach researchers who are looking in, and not living that life. So this these types of projects they give me hope for Riley's future to be long and healthy and also as a caregiver.
Joanna Mitchell: Being involved. It brings more, I find that it brings more focus to pediatric issues as well. A lot of times the focuses on adult recipients and pediatric issues can be very different.
Joanna Mitchell: Like I said, Riley didn't even remember her transplant, but so the issues for her are going to be different than an adult.
Joanna Mitchell: So I would just like to encourage anybody that is not already involved in research that they that this has been a very rewarding experience. And I would highly encourage people to become involved and have a say in the direction of these projects.
Joanna Mitchell: And I will pass it over to you, Heather.
Okay.
Heather Talbot: So am I going to be on the screen now. I don't know.
Sylvain Bédard: This is a mirror.
Heather Talbot: I need to do.
Heather Talbot: Can you see me.
Sylvain Bédard: Yes, we can see you. You can go. Go ahead. We're
Heather Talbot: Okay, either.
Heather Talbot: Give me a little tiny corner there. I don't
Heather Talbot: Think so. I mean screen.
Heather Talbot: Okay. Well, I just want to thank you for your kind words. It makes me always so emotional and sunny.
Heather Talbot: I really bonded so much with the tea party with you and Laura and Amanda Nathan and this is so sad to me not to be seeing you guys in person, but at least
Heather Talbot: We do have zoom. Anyway, I just I written speech because I need to keep it together. I was very triggering for my grief Phil 11 years down the road. So I'm going to read my speech, which is five minutes long.
Heather Talbot: So I became a patient partner with the CB tarp five years ago after implementing a recruitment meeting here in my hometown of Toronto.
Heather Talbot: When the idea of patient partners was brand new, at first I was reluctant to attend the meeting because I am not a transplant patient
Heather Talbot: I'm the mother of a diseased organ donor, my son Jonathan with a 22 year old university student in 2009 when he was the passenger in the fatal car crash.
Heather Talbot: He suffered a traumatic head injury and was on life support at Sunnybrook Hospital. My family was asked if Jonathan has signed his organ donor card.
Heather Talbot: I didn't know my band 21 year old daughter Emily said that he had signed his card and that they had discussed organ donation. I was hesitant to give my consent.
Heather Talbot: To donate Johnson's Oregon. I thought that it would be against my religion I call the rabbi who said that it would be a good thing. The best seats saving lives.
Heather Talbot: I did consent, even though organ donation has never been on my mind before I am so glad that I respected Jonathan's wishes.
Heather Talbot: He died a hero saving, at least for live so he did not die in vain. And I was given a purpose in my life to raise organ donation awareness, which is my way to honor him and keep his memory alive.
Heather Talbot: Trillium gift of life network. Asked Me to Tell Jonathan story mostly to Jewish groups like the National Council of Jewish Women and at best said synagogue, my family held an annual Memorial table tennis tournament for organ donation awareness for eight years.
Heather Talbot: We have attended for Canadian transplant games as well as an American 2019 where we really saw the huge impact of the gift of life on Oregon recipients and their families.
Heather Talbot: We were also chosen to ride the Rocky Mountain near train for heroes, along with transplant families from many English speaking countries we have become very connected to the transplant.
Joanna Mitchell: Community.
Heather Talbot: So becoming involved with transplant research was the next logical step for me. I was contacted by the de parte team who invited my daughter and me to a meeting and Ottawa.
Heather Talbot: Sun needs a nanny Laura Hornby Amanda Van. Van him and made some sales were at that meeting. They were very warm welcoming and sensitive to us.
Heather Talbot: They were doing research on PCP, which is donation after circulatory death. I had never heard of DCD before but realized that this was how Jonathan donated his organs.
Heather Talbot: After circulatory death, rather than the more common way of donation after neurological death.
Heather Talbot: My son did have brain death, but his head injuries Richie severe to do the test to prove it. So after the ventilator was removed.
Heather Talbot: They had to wait five minutes after his heart finally stopped eating before they could take a Jordan.
Heather Talbot: The CD only started being done in 2063 years before john or death it now accounts for almost one third of cases.
Heather Talbot: The deeper team wanted my help designing a pamphlet to be given to the families were facing what I have faced being asked to donate their loved ones, Oregon.
Heather Talbot: The families would also be asked to allow data from the machines monitoring potential organ donors to be for research.
Heather Talbot: I answered questions about my experience in the ICU to help with the wording of the pamphlet in order to be sensitive to the feelings of people for about to lose a loved one. This is the conflict.
Heather Talbot: I feel that my perspective was appreciated and over 600 families who were subsequently approach to using some of my recommendation consented to be part of the research project.
Heather Talbot: Amanda again venom made a poster, but my involvement in the research which we presented it a CVT RP conference to show the importance of creation partnership.
Heather Talbot: She also wrote an article about my being a patient partner, which was published in the Canadian Journal of anesthesia. I was a co author on the article, there's, there's a copy of the article.
Heather Talbot: Article
Heather Talbot: The acronym de parte means death prediction and physiology after removal of therapy. The team applied for research grant for their donation advisor tool and asked me to write a supporting letter, which I did. And this is the letter.
Heather Talbot: K have submitted an article to the New England Journal of Medicine about the donation advisor, of which I am a co author and we are hoping that it will be published.
Heather Talbot: That donation advisor tool is a way to predict how soon a patient will pass away once life support is remove this is important because time is of the essence.
Heather Talbot: If the prediction is more than two hours than the organs will no longer be acceptable for transplant.
Heather Talbot: Knowing that the family would not have to be put through the emotional roller coaster of being asked to consent to donation, only to find out that their loved one cannot be a donor after all.
Heather Talbot: For those families for her lips turns out to be a reality. It is a huge disappointment or made this altruistic decision, only to be let down at a very devastating time
Heather Talbot: They lose the chance to have something good come from something bad.
Heather Talbot: I know that I am very proud to be the mother of an order and organ donor and proud to honor Jonathan's memory by being a patient partner and research for the CD CRP
Heather Talbot: I hope that my experience and participation will continue to inform transplant doctor or scientist over there me search for
Heather Talbot: Any question.
Sylvain Bédard: Thank you. Thank you. Thank you, Heather and Joanna. So it's now.
Sylvain Bédard: Q AMP a questions so
Sylvain Bédard: I know that there was one. But Heather, said the answer. So, I will. Did you meet sunny, you said it all, Heather.
Thank you for
Sylvain Bédard: The other one that I think was for sunny.
Sylvain Bédard: Out, did you approach communication with language barriers.
Sylvain Bédard: I know that there's a language thing of medical terms and not. And so how did you deal with that Sonny and probably Heather and Joanna also that it's always a challenge for you.
Sylvain Bédard: Who wants to
sonny dhanani, researcher ottawa: Get sure I can start there, you know, first of all, you know, two different meanings for me language barrier, you know, one is in in cultural languages but but you know what we struggled with. To be honest, was the medicalized language that we choose to use
sonny dhanani, researcher ottawa: Unnecessarily a lot i i'm in awe of how clearly Heather described
sonny dhanani, researcher ottawa: The process of donation just there, and in less than a minute that we would take paragraphs and paragraphs to write with long words and and difficult to understand. And so, you know, what we did is just spent a lot of time.
sonny dhanani, researcher ottawa: Talking to each other. That was really, really a big part of it to learn each other's language what we knew and what we didn't know and Heather was so good and others have been too. I'm sure you found in this group.
sonny dhanani, researcher ottawa: Once you build a relationship, it's okay for them to say, or I'm hoping she felt okay but she did, said, I don't know what you're saying.
sonny dhanani, researcher ottawa: That doesn't make sense. What, what is that, and you know, we've gotten to the point where, you know, Heather. Reads, our protocols, start to finish, which are for scientific ethics boards, but changing the language here in there has made things so much easier. And we've developed this language.
sonny dhanani, researcher ottawa: Of of donation transplant and the process. You know how we have meetings.
sonny dhanani, researcher ottawa: You know, and we working with fab een and Sylvan
sonny dhanani, researcher ottawa: You know, how do we get together, the group. What's the process. How do these presentations occur. You know how, you know, what are you going to expect in a slideshow with 30 people presenting all these things where
sonny dhanani, researcher ottawa: We're, we're new and and and it's about the relationship, trying to figure it out so that we, we could anticipate and have meetings before meetings and meetings after meetings to brief and debrief and all these things, I think, really strengthened how we do things.
Sylvain Bédard: Sarah. Did you have challenge or Heather or join with that or you're fine with Sonny's question answer.
Sylvain Bédard: Yeah, I think one of the issues is also how much well the understand for researchers and
Sylvain Bédard: As an experienced patient. We've heard it all if it wasn't face to face. We hear what you're saying. So don't be afraid of saying the right words, even if it might hurt. We're
Sylvain Bédard: Probably more prepared to have to take them than you think. And this is transparency for me. And I think one of the issues that we had was also an it
Sylvain Bédard: Manager was a manager was, he said, you know, finally, it's fun to have patient on the panels because finally between scientists, we understand what they're talking about, because nobody wants to wants to say no no scientist or researcher wants to say, I don't understand the immune system.
Sylvain Bédard: The patient will give up there and we'll end up there and and this is a big difference for all sort of everyone and that's amazing. Um, I have a I add one comment, and I think from Beth that mental health support is a big issue.
Sylvain Bédard: But yes, and we all know. And the good news is that Samantha is doing something about that is it's van is doing. And the more we go now, there's more.
Sylvain Bédard: Research and projects that are touching that really important thing because, for me it's 50% of the result of the out of the better outcomes of patients. So stay tuned because on Friday, there's more.
Sylvain Bédard: Thing about mental support and things like that so bad I do hear what you want to bring up. And do we have any question. Any more question question.
Sylvain Bédard: Okay. Is that is that the owner advisory after application currently being used in the the hospital across Canada.
sonny dhanani, researcher ottawa: Know,
sonny dhanani, researcher ottawa: This is a project that's supported by Health Canada and the Health Canada collaborative. I think that's on your agenda in a couple of days been very supportive in a national structure. And so we we got delayed with coven and donations slowing down and
sonny dhanani, researcher ottawa: Ethics and teams being burdened by so many other things going on that we've delayed by six months, and we think in the next month or two that we're going to start implementing it. And this project is important. It'll be a few years because this is really about taking
sonny dhanani, researcher ottawa: Feedback on this and what what people at the bedside and transplant teams are going to want and how they want to see it. So we're still in the initial phases of implementation, but we hope you'll be hearing a lot more about it as it as, as we carry on lots of opportunities to share
Sylvain Bédard: Yes. See, sunny and I want to bring up. There's a lot about mental health support for patients and we've talked about it and I think someone is working about that, but I'm seeing donors.
Sylvain Bédard: living donors. Also, and we think, and I think some people are starting to think about it, but also there's issues and these guys needs as much support as transplant recipient. So we need to work on that and hopefully it will happen, mental health, support for long term, especially
Sylvain Bédard: Either ever heard from the recipient. This is a curious person.
Heather Talbot: Oh, yeah.
Heather Talbot: So Trillium gift of life gave me the opportunity to write letters anonymously to the recipient. They were for recipient each kidney, the liver and the lung.
Heather Talbot: Not to the heart valves though that's issued you don't do that, and I heard back from three of the recipients
Heather Talbot: Unfortunately, I did hear that the liver recipient passed away almost two years after the transplant and he never
Heather Talbot: DID CONTACT ME WHEN I sent a Christmas card 3 trillion anonymously. I was told that all the others were given their Christmas cards but
Heather Talbot: He had passed so they weren't passing that on to the family and the letters from the recipients from the three recipients were great.
Heather Talbot: It was actually the wives of the recipients who wrote to me, mostly and when recipient wrote a few times, the wife wrote to me, and unfortunately he passed from cancer unrelated business kidney transplant. We got
Heather Talbot: A soft GL client cancer and passed away. But in the meantime, those several years that he didn't have witnessed new kidney. He travels he met his brand new brand new grandchildren and he was able to have a wonderful life that he would not have had otherwise extra years in time and
Heather Talbot: You know,
Heather Talbot: You know, a valuable life rather than just this big life. So anyway, those are very precious to me the letters that I received from those deployments. I keep those in my memory box I take them when I give speeches and people always want to see those letters so
Sylvain Bédard: Thanks a lot. Hi there. Thanks a lot, everyone.
Sylvain Bédard: With time is going by so going back. No, no, dying bit in time is moving forward. I don't know the time photo with Allah
Sylvain Bédard: Thanks a lot. We will now switch to
Sylvain Bédard: A young trainee. Well, I don't know if she's young. I never see or but I will say, I'll be politically correct and I'll say she's a young researcher a trainee and Anna Horton. I hope you are ready.
Sylvain Bédard: And
Sylvain Bédard: Yeah, you are. Okay. So Hannah.
Sylvain Bédard: It's your time.
Anna Horton: Me screen.
Anna Horton: Screen shared
Sylvain Bédard: Not yet.
Anna Horton: No. Okay. One second.
Sylvain Bédard: That's perfect. Yeah, your screen. Yeah.
Sylvain Bédard: That's good.
Anna Horton: Okay. Well hi everybody, and thank you very much to all the presenters so far and the presentations have been wonderful. And thank you also to the organizers of this forum for the opportunity to be involved.
Anna Horton: My name is Anna Horton, and I'm a training with the CD tarp and qualitative researcher at the research institutes of the McGill University Health Center here in Montreal.
Anna Horton: And anyone not familiar with the term qualitative research. This is a type of research that most often tries to generate answers to problems by exploring what people think and what people do.
Anna Horton: So this is done, usually by talking to people about their experiences and opinions or by observing their behaviors or by a combination of both.
Anna Horton: So today I would like to talk about an upcoming qualitative research project and this project is still in its very beginning stages. I'm really hoping to use these 10 minutes to sort of briefly introduce the project.
Anna Horton: And then leave plenty of time for questions advice and inputs and also opportunities to connect with anyone who might want to be involved.
Anna Horton: So I'll quickly mentioned that this study is part of a larger research project seen in the title of the slide here before the colon.
Anna Horton: Which broadly will be investigating changes to transplant activity worldwide as the covert 19 pandemic continues to unfold.
Anna Horton: But the part of the qualitative research study. I'm going to talk about which I am the research coordinator has been designed in response to the rapid changes and disruptions to transplant activity organ donation and care that have occurred from the outset of the mid 19 pandemic.
Anna Horton: In recent months, there's been significant reductions to transplant activity worldwide. Many transplants, as well as living donations that can cancel.
Anna Horton: This is because of concerns about infection for both patients and healthcare workers fewer resources and changing priorities in health care during the pandemic.
Anna Horton: As well as decreases in transplant activity patient cares also changed in response code 19 pandemic. So care is increasingly being provided using telemedicine and that is using online tools or telephone appointments instead of conducting in face appointments
Anna Horton: And these changes to transport activity and changes patient care of having very quickly and, in this context, there have been some concerns that in the rush to introduce new policies and new strategies consulting with patients as well as caregivers and donors has largely been missed
Anna Horton: So this study has been designed to understand the transplant populations experiences of illness and care during the pandemic get perspectives on the changes that have occurred and sort of find meaningful ways to share these stories.
Anna Horton: And because of the potential for changing patient care in the future. We're particularly interested to hear what patients donors and family caregivers. Think about telemedicine.
Anna Horton: So in order to understand the experiences and perspectives of patients, families and donors were hoping to conduct interviews with approximately 60 people
Anna Horton: 15 people who were waiting for transplant. When the pandemic started 15 people who had received a transplant 15 people who are planning to donate as living donors.
Anna Horton: And 15 family members to provide assistance or support for someone waiting for or having received a transplant.
Anna Horton: And these interviews will be designed so that introduces can really tell a story of their experiences as the pandemic unfolded.
Anna Horton: And then we'll have some more specific questions about what information they received about changes to care and what they think about changes to care in particular where they think about using elements.
Anna Horton: And the interview guides that will be used during these interviews will be made with the input of patient partners.
Anna Horton: Afterwards we plan to analyze the interviews to look for common themes as well as key differences which might help to inform changes to patient care in ways that prioritize the needs of the transplant population.
Anna Horton: As well as analyzing these interviews to look for ways to develop better care. We also have to use them to create short paragraph long accounts which described individual experiences during the pandemic.
Anna Horton: And after being put together from the words of the missing words of interviewees from the interviews, these narratives will be sent to interviewees individually to review in order to ensure that we stay true to their experiences and perspective.
Anna Horton: And what's finalize the plan is that these narratives will be published anonymously on the CD TMP website.
Anna Horton: And the idea of these appliances, really, to create a way to tell people's stories from the pandemic.
Anna Horton: We hope that these narratives will raise awareness of the effects of the pandemic attack for the transplant community as well as foster solidarity understanding and mutual support.
Anna Horton: Now we publicly available so they can be read by lots of different people. It might be interested to know more about the effects of the pandemic on transplant patients, families and donuts and we hope that they also might be used to guide future research and care.
Anna Horton: So thanks very much for listening to this very brief overview of our study, and I'd like to open up space now for questions as well as for ideas and advice and Chelsea, I think, has a pole.
Anna Horton: So I'd be very interested particularly to know opinions about the idea of these these narratives
Anna Horton: Additionally, I'd love to hear from anybody would be interested in participating in this study as an interviewee or as a patient partner.
Anna Horton: And my email address should be on the screen. So please do get in touch. If you want to be involved or if you have any advice or questions that you think Lisa Thank you very much.
Sylvain Bédard: So thanks a lot.
Sylvain Bédard: And I hope so. There's a question. So if you want to take the time to answer. What do you think about the idea
Sylvain Bédard: About the idea of patient family and Dorner narrative. So I leave you a couple of seconds to answer it.
To
Do
Sylvain Bédard: Thank you. So this is it for this morning and I think I, I don't want to go over time, but we still have three minutes to go.
Sylvain Bédard: We presented. What is more or less the levels and all of different ways of of partnership and research and I seen you seem like a great
Sylvain Bédard: Great path great map of what how much and how great it could be with donation with I would come up with better terminology with the so I would like to thank all the presenters for the great job that they've done.
Sylvain Bédard: And the great projects that they're running for sure.
Sylvain Bédard: thanks especially to all the donors. I know it's all for me always special for me. And thanks for being there and we will see you back at
Sylvain Bédard: Two o'clock. I don't know if there's anyone from the manager thing that had a fat manager team that has something to say. But thanks everyone for participating and we'll see you at
Sylvain Bédard: Four at two o'clock so 14
Sylvain Bédard: Two o'clock Eastern time, and thanks a lot for being there Massey