"Everyone Has a Story" – Opening Plenary Town Hall with Dr. Brian Goldman

Hello everyone, I’m excited to welcome you all to the 5th Annual Alberta SPOR Patient-Oriented Research Institute. As with so many other things in 2020, we’re doing things differently this year, meeting virtually rather than in-person. But Drs. Marilynne Hebert, Dean Eurich, Diane Aubin and Kelli Buckreus have put together an excellent virtual experience for you that will just be as rich and engaging as our previous in-person Summer Institutes. I encourage you to participate in the live presentation and networking meetup sessions we have for you each week View the keynote videos, the session recordings and other materials shared in the event app Vote for the best poster and video abstract presentations. And take advantage of the many other opportunities and tools for virtual networking and interaction. The Virtual Institute will run over the next six weeks, and we’re kicking everything off today with an exciting live town hall led by CBC Radio’s Dr. Brian Goldman looking at storytelling and patient-oriented research Thanks for joining us for the Virtual Institute and thank you to CIHR and Alberta Innovates for sponsoring this initiative of the Alberta SPOR Support Unit. Enjoy your experience Thank you Dr. Finlay McAlister, our new Scientific Director for the Alberta SPOR SUPPORT Unit. I’m Diane Aubin, also with the Alberta SPOR Support Unit, and I’m very excited to be launching the Virtual Institute with this first session. The Virtual Institute, I have to say, is the brain child of Kelli Buckrues, and she and Donna Pressick have been working tirelessly to create this event, so thank you to you both So this first session is the town hall and it will be moderated by Dr. Brian Goldman. Many of you might know him already through his CBC Radio show “White Coat, Black Art”, and most recently he’s created a podcast called “The Dose”, which has been very helpful through the pandemic He’s also the author of several books, the most recent one being “The Power of Kindness: Why Empathy is Essential in Everyday Life”. Great read. And of course he’s also an ER Physician But before um we start with this session about storytelling and the connections with patient orient between patient-oriented research and storytelling, with a great panel of panelists who will weigh in on this topic… Before we get going, just a few housekeeping words. We recommend that you select the ‘speaker view’, so that is at the top right-hand corner of your screen, so click ‘speaker view’, that’s the best viewing option. And because there are so many of us we recommend that you turn off your video, so let’s turn off your video, which is down at the bottom left-hand corner, just click stop video. This will protect our privacy and also make the audio sound a little better. If you have any questions we have the the chat box for you to ask questions, and if you have technical difficulties that’s where you can ask us as well. We do recommend if you have any technical difficulties to the first thing to try to do if you’re really having trouble is to log out and log back in again, it’s the equivalent of turning your computer off and on again and magically things happen, so do that, but if you still have trouble just chat with us and we can try to help you out So, finally before we begin I’d like to acknowledge that even though we are virtual today, I do live in Treaty 6 territory and we all, each of us, live in the traditional lands of First Nations, Inuit and Metis. And I’d also like to add, in memory of Joyce Eshequan, may we all be treated with respect, compassion, and kindness whenever we’re in the healthcare system. So, over to you Brian And thank you Diane for that very sensitive and heartfelt introduction to to our session today As has already been said, I don’t want to belabour the point, but we are living in very interesting

times, very troubling times with COVID-19. But it’s really a miracle of technology and hard work from Kelli and Diane and everybody else that we are able to to meet together virtually today And I will just say what I always say at the end of my show on “White Coat, Black Art”, we are in this together. As we as we deal with COVID-19 and we hope and pray for a rapid resolution, scientifically-based, of course. So it is a great pleasure to host and moderate this town hall today, for the next hour so we’re going to explore storytelling and how that and reflection about stories can help us understand our unconscious biases while gaining an appreciation for the perspectives of others, and in order to strengthen relationships among clinicians, patients, and researchers, now we have a triangle of participants We want to improve outcomes and influence and support changes to the healthcare system There are some formal objections, uh objectives, not objections, I’m sure there’ll be formal objections in the chat, we’ll get to that in a moment There’s formal objectives to the town hall, they’re to help you understand how storytelling can foster more authentic outputs in patient- oriented research, and how these influence healthcare system transformation, and that research and research methodology tell a story that may not be the most pertinent story and how stakeholders who are engaged may be able to help shift the narrative to tell a story that’s more authentic, more true, and more representative of their point of view. I think we can all agree that stories help us understand each other, I certainly know that from 13 years says hosting “White Coat, Black Art”, helps us share our experiences and perspectives and confront and challenge biases with the aim of improving relationships in health research and healthcare settings. And in that way stories help patients, researchers, and clinicians better understand all of the issues, not just the issues of importance to researchers, but the issues of importance to to patients and their families, the challenges, the needs and priorities for whatever healthcare need you’re trying to address. So we have decided to to do this as a town hall in order to present a diverse range of issues and interaction on the role of stories in patient engagement, and to answer your questions. And so how it will work is that I’m going to introduce the panel and give each member an opportunity to let you know a bit about their perspectives by asking them a question And I will, as a housekeeping detail, you know, after that we’re going to have a more interactive session and in which I hope there’s going to be a lot of interaction between different members of the panel. Remember that it is of course virtual, which means that there’s a bit of a delay and that may be an issue with with interaction, but you know this is technology and we’ll deal with it. Towards the end in the last few minutes we’ll have time for questions, and if you do have questions type them in the chat, so click on chat at the bottom of your screen and and type in your questions and they will be curated and we’ll try to get to as many of those as we can. And let’s begin our fantastic panel. And I’m going to introduce our panel before we begin with the questions, we’re going to introduce each one in turn. Dr. Clare Gibson is the owner of the film production company Allegorical Alchemy, it aims to make real world positive change for patients and healthcare systems through the use of storytelling in film, specializing in short portrait films and interactive documentaries. Clare obtained a PhD in Health from the University of Sheffield in 2008, and a Master’s in Film in 2018. So, welcome to Clare Gibson. Sue Robins is a Vancouver-based author. She’s the mom of a young man with Down’s syndrome, and a recent breast cancer patient. She is a writer by profession has worked in healthcare She owns a health communication company called Bird Communications, her book “Bird’s Eye View: Stories of a Life Lived in Healthcare” is a great read, it was published in October 2019 Our next panelist is Dr. Richard Oster, he is currently a research associate at the University of Alberta he uses mixed-methods and community-based approaches All right. I’m back. How do I get back on mute? So, Diane, how many of our panelists did did everybody hear? — We lost you at Richard at the end. — Okay, great, so did you hear Richard’s introduction? — Yes part of it. —

Excellent, okay. So, our final panelist is Dr Michael Marshall, he’s a psychiatrist with a special interest in transgender wellness. He leads the Gender Program at the University of Alberta and is the founder and Medical Director at the 2SLGBTQ+ Wellness Centre. Dr. Marshall started this new innovative program to provide comprehensive multi-disciplinary wrap around care to the transgender population. Welcome to all of you, and I’m so glad that you could be here today for our discussion and for our audience. So, welcome to our panel Now I’m going to begin with Clare. So, i’m going to give each member of the panel an opportunity to kind of give us a flavor of their point of view before we start the interactive session. and I’ll start with Clare. You use film to tell stories from the point-of-view of patients and healthcare workers. My question to you is, how do these stories impact health-system change, Clare? — Thanks, fine, just, I didn’t hear Richard’s introduction so when you get to Richard I’d love to hear about him So from my perspective, creating stories and films is all about having real-world impact for me. I think probably most people on the phone call today who are engaged in patient- oriented research do so because they want to make real world impact at the end. But traditionally a lot of the ways we disseminate information from academia doesn’t actually help get to that point, so presentation in papers or at conferences, kind of talking to the select in group rather than getting it to the people who can impact real-world change So that for me is really what storytelling is all about As an independent filmmaker unfortunately I don’t often get to know the scope of the impact but I have some anecdotal evidence of impacts that we’ve had with with films I’ve created recently So, for example, we created two films around pharmacist-led treatment of UIT, and the aim for the patient film was to let patients know what in fact they could go to their pharmacist for this treatment rather than going to a family doc or a walk-in centre. And someone actually contacted me who’d recently moved to a new area, they didn’t have a family doc, and they’d seen the film and they’re like ‘oh, wow, now I can do this, this is great’. So, like I’m not saying… I can’t extrapolate to a huge impact, but I know on an individual level we’re affecting real change in the way we want to. So that is totally awesome. So going back to kind of how it occurs, obviously everyone has an individual story to tell ,but at the basis of that there is some commonalities in theme which is obviously what we come to from research data And stories help make those abstract ideas and concepts into something that has meaning for the individual. Olsen described stories as facts wrapped in emotion and when emotion, when an audience is connected on an emotional level, they’re far more likely to remember it than when presented with data alone They’re less likely to argue a counterpoint And if it’s beyond the simple — (such as) you can now go to your pharmacist, something which is a more complex change in healthcare — when stories pair with a call to action it can be a start of discussion point or for further action. So, we’re slowly influencing change.  — Clare, that is a fantastic introduction to your point-of-view. And in the interests of making sure that everybody has their introduction and their identification as upfront to the beginning of the presentation as possible, Clare thanks for saying you didn’t hear it, the fourth panelist is Dr. Richard Oster, he’s currently a research associate at the University of Alberta. He uses mixed methods and community-based approaches to address Indigenous health concerns. He completed his PhD in Experimental Medicine in 2013 Our next panelist is Sue Robins, and my my first question to her: Part of your story, Sue, is your journey from working in the healthcare system to becoming a patient and coming to believe that change stems from individual action So my question to you is, what impact do you think you have made through telling your story of this journey. — Thanks Brian. I was thinking about the number of times I’ve told my story in various settings, and it’s probably dozens and dozens of times, starting in pediatric healthcare, talking about my son who was born with Down’s syndrome 17 years ago, and then three years ago I was

diagnosed as breast cancer patient, so I started to talk about my story as a patient as well And in fact, tomorrow there’s a researcher from University of Ottawa that’s calling me that wants to know how COVID has affected our family, living with a son who has an intellectual disability. So, I have spoken to researchers a lot for their studies, and in fact my whole book “Bird’s Eye View” is a book of stories of patient and family stories, experiences in the healthcare system. And what impact I’ve had, I kind of sound a bit contrary but I actually have no idea what impact I’ve had. Often when you speak, if you’re standing behind a podium, you know, you can certainly get a sense from the audience about how your story has come across to them, but I normally don’t get a lot of feedback about how change has actually been made in healthcare settings or the research world after I tell my story, and I can tell you, a couple years ago, I kind of, I came to a bit of a brick wall thinking, like, what is the point of doing all this anyways if I don’t see that there’s actual impact. Sometimes I feel like it’s talking into a black hole. And with researchers, I would say, you know, sometimes I get interviewed for or I fill out a survey and I never hear back what happens with the research, so I think that feedback loop is often missing for storytellers So similar to Clare, I have some anecdotes that talk about, you know, this is kind of what keeps me going. I have a chapter called “About Dr. Darwish” in my book, which is a beautiful encounter with my son’s pediatrician, Dr. Darwish, and how she spoke to us after Aaron was diagnosed with Down’s syndrome, and I had one pediatrician contact me on twitter and say that she reads that particular story every time before she goes and talks to families to disclose a new diagnosis. So I thought that was a pretty good indicator that story spoke to her and maybe made a difference in how she practiced medicine. And I’m very pleased my “Bird’s Eye View” book has been picked up by a number of nursing professors and they’re using it to teach compassion to their students. So again, I don’t have any research about it, but I’ve got a couple anecdotals. So yeah, I don’t know for sure, Brian, that’s my answer about how my stories have made a difference. — Sue, thank you for that Can I ask you a quick follow-up? How many people who do tell their stories, you know, patients, family members who tell their stories, actually tell their story with an objective in mind that’s concrete, like they know this is what I want to happen as a result of telling my story? — Well, you know, when I worked at the Stollery Children’s Hospital (to) coach family speakers before they got up to speak at grand rounds , and one of the things I would ask them is their intention, their ‘why’ behind telling their story, and most people say ‘I want to make a difference, I want positive change in the healthcare world’, and what I really do is encourage people to think a bit deeper than that, because we all say that and that’s like a really lofty goal to make a difference, and that’s something I’ve been chasing for 17 years since my son was born. So I asked them to think about the specific reason why, and what they want their audience or their readers to take away from their story, and so for me I’ve realized when I talk about my son Aaron it’s because I want folks to think when a baby with Down’s syndrome is born to think ‘congratulations’ instead of ‘I’m sorry’. That’s kind of the main reason and all my messages are around that is celebrating people who are disabled as opposed to treating people like a tragedy. So narrowing it down is really really helpful I think when you’re doing your messaging for sharing your story, and maybe getting a bit more concrete as well about what you want as specific an ask as possible. — Thank you very much Sue Richard is our next panelist. Richard Oster, you do community-based health research with Indigenous partners and I know you’ve had a conversion, you’ve had an awakening as a direct result of that Can you tell us about the stories that have been told in Indigenous health research. — Yes, so, first I’d like to say thanks so much for having me, it really is an honour to be on this panel When I was first asked I thought ‘maybe someone made a mistake because I’m on a panel with such amazing people’. And also to let everyone know that’s watching, I had some technical difficulties before we got started, I wasn’t sure that my video was going to work and I’m really pleased that it has because I took a shower this morning and got dressed, out of my normal routine. So, yes I do Indigenous health research, and from what I can tell the vast majority of that research has been done without meaningful consultation or involvement of Indigenous communities and people And that research has told a story, and in my opinion, it’s one of deficit and one of disparity, a story that generally just tells us how sick Indigenous people are

And in my opinion, I don’t believe that’s really an accurate or unnecessarily helpful portrayal of Indigenous health. We know Indigenous people suffer disproportionately from a bunch of conditions, we don’t need to continue to tell that story anymore in my opinion. In fact, if we do, we might be doing harm, we might be perpetuating negative stereotypes, creating self-fulfilling prophecies, and so on So, I think there’s other stories that we can tell through research, health research, ones of strength and hope and resilience and opportunity and positivity. And I’ll end by saying there’s a an Indigenous author a storyteller named Thomas King, and one of his quotes always rings true to me and I keep it at the forefront of my work. He says that the truth about stories is, that’s all we are So it makes me think that we need to be really conscious about the stories we’re telling in research, especially as it relates to Indigenous health. — Thank you, Richard. If I can ask you a very quick follow-up question, how did you come to that conclusion, and how difficult was it, how challenging was it to be able to correct that record and tell the kinds of stories that you think should be told? — Well, it was a process over time. It’s not something that happened overnight. I was trained very biomedically, you know, spent a lot of time in a cell culture lab and learned a lot about biostatistics, and i don’t really do any of that anymore. So, it was kind of a slow unlearning and relearning. I consider myself a student when I go to the communities I work with So, I was one of those people that was, you know, you know, putting out a lot of deficit-focused research, and I wasn’t really seeing much of an impact as a result of that. And I was reading more of the emerging literature on the importance of building connections and community-based research, and all of that was massively reinforced when I started to actually go to communities, experience communities, meet people and hear their stories And you know, I have some stories about that that maybe I can tell when we have more time. — Thank you, Richard. And now Michael, we’re going to turn to you. You work with the 2SLGBTQ+ community and focus on stories of marginalization experiences. How can stories empower individuals and how can sharing unique individual stories impact research and and health-system change? — Thanks Brian. It’s difficult not to just repeat the good words that Richard has just spoken of. In fact, the trans community, the 2SLGBTQ+ community, but in particular trans persons of colour, are often spoken of as persons who are hugely disadvantaged persons who have had, who are struggling against a system that has no space for them. And stories that are largely negative. Now, as Richard said, these things are indeed true, but trans persons are individual people who have succeeded and who have resilience, and in the face of what a huge systemic barriers continue to be. So it is very important that the stories told reflect that. Reflect the resilience, the power, the strength, the carrying of the history of the 2SLGBTQ+ persons that that happens day-in day-out by by the population that I work for. So how is it, then, stories can impact research and change and health stories? Well, we need to tell the individual story. We need to look at the persons within the research. We need to see who it is we’re talking about. Rather than numbers and disadvantage, yes, the story being told is one of a truthful, partially, but incomplete because in all of that we have persons. And I think that’s… When all of you all of you said very important things and, like Richard, I’m not quite sure what I’m doing here because you are all great storytellers, and I’m a clinician who who hears stories but doesn’t necessarily do active research. But I feel that it’s important that the voice of the community be elevated, not the voice of who is seeing what Because that has been the history: ‘I see x and I say x’. Instead it should be ‘the community says this’ and this be the story. So I think it is, to answer the question, the hearing, the listening, and then the retelling of the accounts of

individual persons will radically change how we do the research we do and the results we get. — Thank you Michael. If I can ask you a very quick follow-up. Since you focus on stories of marginalization, do you think telling those stories moves people from the margins, more into the mainstream? — I think telling, just i think telling the story of the whole person certainly does When we have a picture of a group, people see a group. Whereas, when we tell individual stories of success in the face of systems that exist to disempower or result in disempowering, then we move persons from a group, from the margins, from disadvantage, to individual people who have moved with the community, yes, but moved all the same. So, yes, it is important, as you put it yes. — Great, thank you Michael. Now we’re going to have a little bit more of interaction and and here we really have to take off our Canadian politeness, and I’m going to ask the panelists, if you want to cut in you may, you may cut in at any time, we’ll make room for you, subject of course to the amount of time we have left So now this is more of an interactive session and I’m going to begin with Clare Many researchers’ and clinicians’ comfort zones are in presenting facts based on empirical evidence You know, we’ve all heard the phrase, ‘that the plural of anecdote is not data’, so why should they be telling stories as well Clare? — That’s a really tricky balance I think Brian, and I’m not going to read the whole quote because it’s quite long, but Davidson a few years ago looked at this phenomenon, particularly taking information from scientists to policymakers and, he said, with it somehow a corruption factor forcing scientists to dirty their hands tailoring their message in order to have influence over policy. And I feel as though not all researchers feel that definitely, but some people do feel as though they’ve created this really scientific rigorous data based on process, and then we’re somehow watering it down with story And so it’s a really tricky balance to get right. And the question you asked me before I kind of went over, some of the reasons why story does work, people have done research on it and how emotion is more emotionally engaging, and if you can use metaphor to use to convey data then it has meaning to people. So, even knowing all that I feel as though sometimes people still have that disconnect even when you present the facts, which just goes to show how important story is really So what I found more recently is when people, academics and clinicians, have used story successfully and then tell their peers in a story, then that that is actually more convincing than all this academic data. I could tell you about how story affects the brain and all the studies that have been done. So yeah, story really beats story, I think. — And Claire you know one of the things that I think that some people believe, and I think you might, is that it’s not a question of a researcher asking for soliciting stories from patients and families but collaborating with them on stories. Can you speak to that collaboration, is that stronger than simply asking somebody to tell their stories? — Yeah, for sure. The process I follow is very much a collaborative endeavour. Obviously the researcher has information what they want to give to whoever their target audience is to cause some kind of change, but those people need to receive the information in a way that’s meaningful to them and they have certain criteria for how that information is delivered or what’s important to them. And so, just pushing the information out, that’s still one person’s perspective of what is important. So in my process I engage all the stakeholders to be involved in identifying both the key messages and the audience learning needs. I think someone on the chat before asked whether it’s consult or collaborate, and that’s a good point. When I was doing my Master’s I created this really collaborative process where everyone will be super engaged at all points in time, and then the group of people I ended up working with were people who were on the conservative kidney management pathway as opposed to renal dialysis for chronic kidney disease and they were all mid 80 year olds and they had a limitation of how much they actually wanted to engage

Like, they felt that was a good amount without me pushing all these extra areas where they could truly collaborate. And at the time that was kind of disappointing to me, but I looked in the literature and certainly other people who engage in collaborative filmmaking or filmmaking to change have identified what is kind of setting the stage so people are allowed to collaborate to the level what they want to rather than making them input more than what they want to ,which could then be perceived as a burden. So I’ve had quite a range. A film I created recently around mental health access for young people, the mum actually even wanted to look at all the transcripts and kind of identify key phrases she really wanted to be in the film, and I worked with her and the researchers to ensure that. So collaboration is definitely key. — Clare you tell lots of stories. Is there such a thing as a template for telling stories? — Yes and no The film literature will tell you what ideally you want some kind of hook at the start, which is a an intense short overview of what the film is going to be about so people know straight away whether they’re interested in it, and then I’ll see some kind of rising tension, and some kind of resolve, and if possible I like to end on them slightly more positive hopeful note. Sometimes that’s not possible! Like, it’s kind of the least, the least bad. So, that’s the kind of template, but every story is very much individual within that, I would say. — Thanks Clare. Sue, I want to bring you in now How do you react to what Clare has been saying? — Well, so funny, I really feel in healthcare that stories are underrepresented and sometimes not respected, and I don’t think it’s a matter of taking away data and replacing it with stories I just think things are very imbalanced. That’s how I feel as a person who tells stories, and really my definition of stories, or how as lay people talk about ourselves. Like, I pulled up my pathology report from my cancer and I don’t call myself like a grade one estrogen positive invasive ductal carcinoma in my left breast, that’s not how I talk about myself. You know, I’m a wife and a mother and a friend and a writer, and I think what Clare said about stories, like we love movies, we we love reading books, there’s so much of the arts that are important to us in real life. And I wonder, you know, in healthcare, I’ve had so many friends, I’ve got kids in who are older in their 20s, who said to me, you know, I’ll pay for my kid’s science degree but I’m not going to pay for their arts degree. And so when we start talking about storytelling and narratives and the humanities as soft skills, I think that really degrades the importance of stories and in fact that’s how we’ve connected together as human beings since the beginning of time is through storytelling. So I think it’s really unrepresented and I think as Clare alluded to, if we, you know, touch hearts we will change minds I really really believe that that’s true. And I’ve, just timely wise, like covered, you know, every time the public health messaging talks about the cases and the deaths, it just like makes the hair stand up in the back, you know, of my arm because patients are not points on a data graph, and I think healthcare numbs themselves by using data and forgetting about the real true authentic patient story. And you know, hospitals either want good news stories only for foundation and fundraising, or they don’t want to hear your stories at all unless they happen to give you a survey. And then, as Richard, said, research often wants to know about burdens and their deficit base. So for my son I have been involved in many research studies, and really they’re trying to decide what the burden of my disabled child is to our family. And you know, if you ask families, if you ask them what that the research question should be, it’s not about the burden of my son, it’s the burden of society and systems and how that affects families. But you know, I think research often looks for the negative because they’re looking for the problem to solve, and I’d like to see some research about how awesome my son is. That’s something that nobody’s ever really done research about before. So, I think the good, the bad, and the ugly is not necessarily told in healthcare. Either good stories are told or bad stories, but there’s so much grey in between. And thinking about how patient stories are represented, you know, I appreciate being the patient on this panel and I always say I don’t represent anybody except for myself but, there’s only one of me here. There’s many, many conferences that happen that do not have patient stories in them at all. You know, how often are patients invited to submit a story to an academic journal, right? Like, there’s so much that happens in research

that we’re left out of, I believe, and I think that has to do with how people respect stories, and sometimes storytellers aren’t treated with respect either. I’ve been heckled at a health conference before for talking about kindness. And you know, really I think sometimes people forget when we tell our personal stories, it is a real honour to bear witness to that and that does get forgotten, too. So, and my last point, I promise, it refers to what how, what Michael said, is like I’m going to shoot myself in the foot here, but often at these conferences you will see women like me telling their story So, I am a white, middle-class, middle-aged woman We tend to be the ones, when you’re partnering with patients, you will find us around the boardroom table. And so what I really want to ask is, whose story is not being told? — And thank you very much, Sue, for that. And I know that Michael is dying to jump in, I know he wanted to respond to Clare, he might also want to make some comments on what you’ve just said as well. So take it away. — Thank you I think an important point that both Clare and Sue have raised is the importance of the whole person. so Clare uses a form of filmmaking that’s interactive and allows the story to evolve and you see, you could you see a person at the end of it rather than snippets that have been put to — not that snippets put together aren’t a story — but you see it evolve as the person goes. And I think that’s a remarkable way of telling a story. But I think it’s correct what Sue said about the whole person, and who are whole people. You are right You are a whole person, when you are invited But who is not considered whole here? The BIPOC trans person is the least whole person involved in any data. They are the least seen, that community is at least talked about, and certainly not at the table. So the BIPOC trans person is a number in data, is an unhappy mentally disordered, when in fact these are folk who again are whole people who have families and communities and thrive in spite and despite systems that are created without them in mind Now, I think it’s hugely, hugely important that we remember that in all of this, we, too are patients actually. And when we go up and we talk about our numbers, and we talk about, we, too, have stories that we are suppressing. And why is that? Why is it that the data we’ve created is more important than the stories that we are. That are. Why are people not people, and they are patients, and numbers, and n equals x in a data set? We need to rethink how we do research, rethink who’s involved in it, rethink the power imbalances, rethink who, what it is we’re trying to do We’re trying to tell stories, actually, this is what we’re trying to do with data Because, yeah, science moves us It keeps us alive. It gets us from a to b But the stories that we are keep us whole. — Thank you Michael. How, if i can ask you a follow-up question about that, because the disadvantages and the barriers that you have talked about so eloquently are are real How can you use stories, how do you think you can use stories or how would you suggest that stories be used to try to present a fairer representation of gender diversity in research? — I think there are two things, actually. The person, again. The sense of personhood that is lost in gender diversity research is perhaps necessary to separate the numbers from the people, and that’s something that we as clinicians feel we must do, so we remove people. But what I’m saying, but I think by putting it back together we could then look at what is it in this system that needs to be researched to make it better for the BIPOC trans person Because it isn’t the person who is at fault or has problems. These are people. It is the system. So were we to look at the person instead to drive data and gender diversity, to talking about gender diversity, we would then be more willing to fix the systems that disadvantage the individuals Because then we’re looking at the stories and what the stories are, rather than (for example) 67% percent have depression. These aren’t, these aren’t things that will change systems

What will change systems is a story of an eight-year-old who has been rejected and who has had disadvantage, and has waited years to get interventions, and who has had to deal with the societal structures. When we hear that story, it is only then we could look at the systems that make it better. — Thanks Michael. I want to bring Richard in at this point Following up on what you were saying before, can you give some examples on how you’ve tried to tell a different story through your research with Indigenous communities? — I can, and there’s so much I wish I could respond to about what’s been said so far. I wish we had hours, but — If you want to respond to, if you want to respond to what you’ve heard first very quickly, go ahead. — Well, I think I’ll try and get to that in to answer your question actually. So, in the work that I do I spend a lot of time building hopefully authentic and trusting and intimate and personal relationships with community partners in the Indigenous communities I work with. For us that’s the foundation, for a level, respectful place for their stories to be heard. So that takes a lot of time. I think it takes humility, like realizing that our point-of-view isn’t necessarily the only point-of-view or the most accurate point-of- view. It requires giving up power, which is something I found researchers aren’t very used to, we’re used to holding all that power. So, I’m getting used to those things. So, once we have that relationship in place, and it can take years, it took years for me From there, we’re able to work in a good way to bring to life community-derived, community-led strategies to improve health and well-being for us We focus on pregnant women and their partners in fostering healthy pregnancies. So, you know, it’s not ivory tower research. It can’t be Richard sitting at the university reading some papers and saying, wow, there’s lots of diabetes in this community, I know what to do. I have to hear from the people in the community, they’re the experts in their own context in their own communities, and attempts to solve their problems without understanding it from their point – of-view to me is ludicrous and destined to fail And I’ve seen that fail. So, we work together on a level playing field and I’ve used the term strengths-based research, that’s where we work from. So instead of focusing on, you know, how sick people are, we can say, for instance, men are really important or partners are really important in the pregnancy, right, they’re usually the most important support for the pregnant person or woman. So in the communities I work in there’s a lot of really good dads that are doing great and are really involved, so let’s hear their story. Why are they able to be good supportive fathers? Rather than focusing on the men that are struggling. So then we can learn what was in place for them to be able to be supportive partners and then try and put that in place for others that may not. — Thanks Richard I have a question for Clare. I can recall a time, old enough certainly to recall a time, when a patient’s story in a research article usually meant a patient vignette in an indented paragraph at the top of the paper. This is the 21st century, you’re a filmmaker. What tools for high impact storytelling are at your disposal today? — I think it’s important to recognize where at the time the vignettes at the start of the paper were pushing the boundaries. That’s what we did in like 2010, that’s not that long ago But I think now, as a society, the way we consume media in general has changed quite a lot, and so academics still read articles, obviously, that’s a large part of their job. But for the rest of this society people do read for pleasure, but the way we get news and everything else is is visually, and so not not doing that in academia and health research and knowledge translation seems wrong to me somewhat. So, I feel that film is one way to go. There are others, obviously, like I know you’re a podcaster and it’s about meeting however people want to receive the information. So, for the stories I’m telling I feel like the short films I created are good, but for a younger generation maybe that’s TikTok, maybe that’s Instagram. Like, things are constantly evolving, and I think academia needs to to keep moving forwards with how they tell stories to get to the people that want to affect change. — Sue, you have a strong presence on on Twitter,

as do many patient advocates. I want to ask you what role do you think healthcare social media can play in promoting or detracting from the use of patient stories in clinical research? — Oh yeah, that’s a good one! I have a love- hate relationship with Twitter. I’m off of it and on it at different times depending on my trolls. I recently did get back on and I am thankful for it because I think it is a great equalizer in some ways for some patients who have access to Twitter, are active on it, of course. So, again, that’s only a very small subset of people, probably a lot of people like me who look like me. But what I think is, what I’ve heard from physicians who follow me is that they learn a lot about the patient experience by following patients and they’re getting information and our stories in a way that they would never get through the health- care system, through the hospital, because they’re hearing it from us directly. And I just wanted to jump onto something that Clare said, and I think sometimes we don’t allow people to tell their stories themselves. And I know, like, people love Dr. Oliver Sacks and his work, but the fact is he told patient stories. He took those stories and made them his own He didn’t hand the microphone to patients And I think hearing directly from patients is really, really important, as Michael said, the individual story comes out that way. But we need to think bigger, beyond standing behind a podium, because there’s only so many people that are comfortable doing that, that want to do that, that have childcare to show up for a conference, right And so you’ll never get diversity if all you think about stories is someone who can write one or stand behind a podium. But thinking about storytelling and healthcare as art or music or photographs, right? Like, what are the other ways that patients can tell their stories beyond the standing behind the podium. I think that’s that’s a great way, if you if you think outside that and blow it up, that patients can tell more of their stories and not limit themselves by folks who can sit in a boardroom or comfortable with public speaking. — Thanks, Sue. I have a question for Dr. Marshall Dr. Marshall makes an excellent observation about the intersectionalities among patients and researchers. Perhaps this awareness could provide a sustainable foundation for all patient-oriented research? What do you think, Dr. Marshall? What do you think, Mike? — I think intersectionality, when that word was coined in 1989 by Kimberle Crenshaw there was this question about what could this be, and when when it became a word in the dictionary there was a large furor that such a word such a weighted word could get into the dictionary. But intersectionality is important The lay… The whole… Again, we come back to the whole person The layered self and its multiple interactions inform every aspect of every interaction, and I think all patient-oriented research has to be this, this has to be born in mind Every interaction that I have is going to be very different from one that Clare has, which is going to be different from one that Sue has and Richard and you Brian and every one of the 171 people who are with us, because we each have intersectionalities and each one is different. And again, while the whole person, a review of the whole person who take that in mind. So when doctors say they’re hugely surprised by patient experiences on Twitter that Sue describes and take the emotional labour that is involved in, free emotional labour, in telling researchers and doctors about the the the weight of being a person in care, we are lying to ourselves as physicians because we know patient stories, because we are people too We know patient stories because we can ask these questions in our interactions they don’t have to be on Twitter. We have time with persons who seek our care, and so there is no reason why we cannot do both. So the question is how, yes it can inform every aspect of patient-oriented research, but also inform every aspect of patient-oriented contact. We must remember as clinicians that are seeing a person, the next person coming in to us, just as Sue says, is a person, is a person who has intersectionalities with families, with loved ones, who perhaps are street involved, who are doing, who may well be engaged in survival sex, or just somebody who has slipped

out of the office to hurry into the appointment, doesn’t matter. They’re people coming into the appointment, and if we can remember that, that will have huge, huge impacts in the way we do work Thanks Michael. Richard, I’m going to aim this question at you, so I want you to make sure that you’re focusing on it’s. It’s also in the comments in the chat section, but I think it has particular relevance to some of the things you had to say: Dr. Goldman’s reference to concrete objectives earlier and to templates as contexts of patient stories, researchers largely start their work with some predetermined assumptions (theories?) about both. My question is, what happens when diverse stories identify anomalies in those assumptions? Richard, I think that’s something that you can speak to Well, you know I’ve tried really hard to go in without any assumptions. I tried to just leave everything at the door so I don’t run into that sort of situation. It’s really important for me to do that because I think a lot of the stories I was told growing up as a white Canadian kid in this country about Indigenous people were really, really inaccurate. They were stories that perhaps our government wanted us to hear, and the true stories were being hidden from us. And that’s led to obviously a lot of ignorance and discrimination and stereotypes and racism So, when I was ready to embark on a community-based research with communities, I tried to leave all of that at the door. When I came in and, just like I said, consider myself a student, you know, just because I have a phd doesn’t mean I’m an expert. I could never be an expert in Indigenous health. The elders and the community members are the experts So that was the way I deal with that, is just going in as a student, and I still feel that way. Every time I go to the community I learn something new. — Thanks Richard. There’s a thread in some of the chat questions that I want to pick up on, and that is: Should researchers tell their story? Should health professionals tell their stories? And I guess that’s a great open-ended question to ask, but the the follow-up question would be, you know, how do we prevent researchers who tell their stories from having a greater currency than a patient who’s telling their story. So, for instance, you know, a patient and a researcher might both have that horrible condition glioblastoma multiforme, GBM Would the public, would the readers or would the purveyors of research, that the people who fund research, would they be more impressed by a researcher who talks about their own story of having GBM? Would that have greater weight and currency than a patient telling their stories? And how can we prevent that from happening? And I don’t know who wants to pick up on that. — I could talk about that Brian. Just being a mom who wrote a book of stories about healthcare and knowing how many times I’ve been dismissed as writing a “mom book”, right, like, I’m not a physician, I’ve got my BA in English And I think if I was a physician, you know, my book would have gotten higher recognition than it has because I am just a patient and just one a mom and just a woman And I hope I’m not saying that too bitterly, I just think that that is the reality. And certainly in the patient world, certain patients get picked over other patients to tell their stories, right, like, if you’re eloquent, you get picked, you know, if you tell your story in a certain way. But I just want to go back to what Richard said and when he said about leaving his biases at the door and what he had realized when he went to school and learning about Indigenous people I think all researchers and clinicians need to understand their own personal stories about why they went into healthcare, and that’s when you understand your own values, what’s important to you, so that you don’t bring those biases into your research. So, I think understanding your own individual story is important. It’s kind of two different things But yes, I would say if a physician wrote a book that I wrote, it would have a different standing, I think, in the world than if only a patient or only a mom or only a woman wrote the story. So, you know, there is a real pecking order that way, and if we say everybody’s stories matter, that’s the name of this panel, then everybody’s stories should matter, including not only mine because I’ve worked in healthcare and I know how to speak to healthcare professionals, and that also leads into, you know, being more creative and asking people to tell their stories in different ways, right. Like I said through arts or photographs, there’s there’s lots and lots of different ways to do it. — It’s interesting you say that, too, because the good point that, I

think the main point that I’m trying, that I was trying to make and you said it very eloquently, it’s not necessarily researchers telling their stories, but researchers knowing their stories So having known, knowing is the biggest thrust necessary to leave behind one’s biases and then come back with a little bit more honesty. So why is it I did, I entered psychiatry, for instance, why not something else? Why not neurosurgery? Or even, what are my biases, what me as a black immigrant male, what are my biases compared to anybody else, and why do i ask the questions that i ask? So, yes, knowing one’s story. And it’s important, too, about the the different ways in which research or stories are told rather, because you mentioned a good, you mentioned a very important point here. Had you been just a dad, your book would have been different, too What we need now is a weaving in of ‘patients aren’t patients’ and ‘researchers aren’t researchers’; we are people looking to answer questions, and there should be an intermingling and a weaving of these stories like Richard describes, a sort of understanding of the of the group we’re talking about and being part of it, so that when your book is written it is weaved in with clinicians and your stories, and it doesn’t, it isn’t a separation or just a moment, it is everybody telling the story. — Yeah, what Michael just said feeds into what I was thinking. In many cases academics or researchers or professionals, as I’m telling here, everyone’s a professional, but people either side on the patient or the the clinician or academic side, many academics are scared to tell their story because it makes them appear to have a vulnerability, whereas it’s expected where people who are wearing the patient hat have that vulnerability and share. And it’s something I struggle with as an individual, like, I have a chronic condition, but when I go out to be a filmmaker I’m not telling people that because that’s the role we’re playing at the time. But we need to, like Michael says, kind of blur those lines a lot more so we’re not just one thing, and we’re all just people. — Clare, that’s a great ending note. I’m sorry to tell you that that we’re out of time. I’m so sorry about that, just getting really warmed up But this is great. Clare Gibson, owner of the film production company Allegorical Alchemy. Richard Oster is a research associate with the University of Alberta. Dr. Michael Marshall’s a psychiatrist with a special interest in transgender wellness And Sue Robins is mom to a young man with Down’s syndrome and recent breast cancer patient and the author of a great book. And I’ll turn it over to Diane Aubin to wrap up. — Well, thank you so much, Brian, and to all our panelists I think that could have been much longer, but thank you everyone for staying with us And just a reminder to go to the Whova app to select your sessions for next week, and also reiterate that there are two keynote presentations that are pre-recorded that you have access to by Dr. Brian Goldman and Sue Robins Very, very moving presentations, and we’re getting a lot of good feedback from our our participants now Thank you so much and we’ll see you next week Thank you, thank you, thank you. Thanks to everybody, it was a great, great discussion Will we turn into pumpkins? — Can we get a copy of the chat, is that possible? We’re talking about feedback, right. Like it’s interesting to see what people said I don’t think she could hear me. — Yes, I can hear you, I’m just waiting for a number of people to leave We still have a number of participants and chats going on so, that’s good though. Christina, I’m just reading yours now: If a patient has taken a huge leap of faith by bearing our souls, toiled through the details, there’s an underlying expectation that something of note should come from it. I feel a sense of responsibility for researcher and healthcare professionals to take our story forward and help create the change that was needed. — That’s without a doubt, I think the… oh sorry, Sue. —

No, I was just gonna type back. I totally agree, hang on, instead of audiences or readers, right, like I think they should be accountable and could actually do something with the wisdom that they pick up from stories to change practice Like I can’t do that, but they have to go do that. — Yes, yes and that’s what I was trying to allude to when I talked about the emotional labour, the free emotional labour of engaging and telling one’s story for little gain. There has to be gain at the end And I think if there is a separation between physician and physician, researcher and patient, I still don’t think there should be, but should there be one, it should be that which is ‘Thank you, I’m honoured to hear your story, here’s what I will do with it’ Because I can, I have the power, I have the opportunity, I have the space to and you don’t So this is how I elevate your voice. Rather than, ‘Thank you for the story. Next, please’. — I think early on, I don’t think Nancy is still on, but she said, Sue, she said that she’s often not told why her story was requested but she’s going to do that from now on. So there you go Okay, oh, the chat is still going. And yes, we will have the recording available and Kelli we we can have a copy of the chat as well, is that correct? — That’s right, I’m recording it so we’ll have a text file available of the chat. — There are quite a few. — I love all the back channeling and that goes on in the chat. — Yeah, a ripple effect We still got people going, it’s I think that’s a great testament I think how interested everyone is in the uh — That’s the standing ovation! — How did you feel about it everyone? — Was short, hey? — Yeah, really short. — Yeah, really quick. — Could have gone for another hour. — Easily. I think it’s important you know, I said this before that in doing our work it’s very, very easy, and you know this Brian, very easy to just see pathology and not see the person, you know. And oftentimes people get, even simple things, like people getting worried about taking their clothes off in front of a doctor, for instance, and a doctor saying ‘I don’t even see the person, I’m looking at the pathology here’. That should… The way in which we train should be changed to reflect seeing a person rather than pathology, you know. — It’s like, when I speak to med students or nursing students, health faculty students, that’s my biggest hope, right, like that we say something that clicks in their head, like, you know, I was talking about knocking on the door and introducing yourself and describing what you’re going to do and slowing down when you go in, like, I teach this little acronym. And I always think if they can remember that one thing, right, that that helps remind them that the person is human. And it’s good to talk about them, too, like to say, you know, before you walk into a clinic room, close your eyes and take a breath for yourself so that you’re centered and you’re fully there for the patient And so, I think it goes both ways, right, because our relationships are mutual with health professionals. — I try to give a similar story when I talk to students as well, I work a lot with nutrition students that end up being dietitians, and I went through that program myself so I know how impersonal the training is. Yes, they’re taught to not develop a relationship at all with their patients. And the ones that I’ve seen that have been most successful in the communities I work with are the ones that throw that handbook kind of out the window and and do develop authentic relationships with their patients and allow themselves to be vulnerable as well. I think even researchers need to learn how to be vulnerable with the people they’re working with, too. — It’s interesting you say that because as a psychiatrist my job is to be a mirror I trained in Europe where my job is to not be involved at all on a personal level, but to mirror. And so the way in which I do things now would not certainly pass my exams 20 years ago. But you know, but the people we see give us so much, you know. And we should, we should better, really, really we should, especially when we

talk about communication. In the UK, for instance, communication is a huge part of training for physicians. In fact it’s scoffed at nowadays because they do so much, you know, the talk is that you do so much communications that you barely do any medicine. But you know what? We could look up the medicine. You can’t look up the communication after you spoiled it. — They call it soft stuff, but it’s actually the hardest. — It’s the biggest stuff. — Yeah yeah. — I just think that’s the huge challenge, like obviously I’m I’m not a medic or any kind of health professional, but so many people want to go into medicine and the way people are interviewed and selected is based upon their academic skills but really it should be so much more about their their person interpersonal skills. But that’s so hard to assess in, like, a interview process People who are book smart and very focused on the pathology and not necessarily… — So, they just look at the data the numbers, right, they don’t ask for people’s stories right at the very beginning. — When you think of who goes into medicine, really, I mean no physician any disrespect, but who goes into medicine, the quiet, bookish, not for, you know, the person, they’re, you know, this is not this is a large generalization. But Clare is right, it’s a person… — You don’t fit that, with that at all! — But is the person focused on a task, who becomes a surgeon? So we come in with our skills that get the job done, yes, and that is important. But in 2020 there’s more to it now, and that is the skill to get the job done. It’s there already, we can nurture that, yes, we need to now nurture the other part which is the communication and the engagement and the seeing of people. — I think we need to get to know you, too, and I don’t mean by being, I don’t want to be your Facebook friend, right, like it’s not about that. It’s about stepping behind that wall that is professionalism. And you know, my best doctors, I know how many kids they have, like I know, you know, a little tiny bit about them so that we can connect as human beings And, you know, my oncologist, I saw her for three years and I don’t know anything about her. She never allowed me to peek into her heart, not even a little bit because it makes her feel vulnerable But us patients are already so vulnerable, and it’s so imbalanced that way, unless you allow us to see you as a human being. — So it’s important to say that, and I’m sorry to be, um, I’m sure somebody else has something else to say, I swear I’ll stop after this, well, not really! But um when I speak with patients, and again I don’t, patients is not a word I use often, I talk to persons. I generally don’t say the word patients in my day-to-day parlance, right But anyway, when I speak to persons in psychiatry it’s a conversation. Yes, it’s an information gathering conversation, but you know yesterday I spoke with somebody, not yesterday actually it was this morning, this morning’s clinic I spoke with somebody at length about time. And you know, we talked about the fact that they’re that my friend did a philosophy degree on time, and how do you write a hundred thousand words on time And then, you know, the fact that she says there’s no future, no past, but in fact we have today, because today is actually the future already and it is also the past. And we talked about stuff like that and we do that often. But now you don’t This person does not know how many kids I have, doesn’t know where I live, but they know a little bit about me. We talked about Arsenal Football Club, for instance, oh good gosh, the fact that I’m wasting my life away supporting Arsenal! But still, so there are ways in which we can be human without being exposed, because you know, psychiatry is a risky business. But you know, we can be human with the people we care for without necessarily saying how many kids we have, for instance. I am, you know, we talked about theology a few weeks ago and the three books, you know, all of that is is good stuff, is human Not that saying how many kids you have is a bad thing, of course. I’m just saying that there are ways there when people are worried about being exposed, you can still be human and not necessarily be the exposed that people are often worried about. — Yeah, in my talk I’ve talked about this idea about ‘see you, know you, like you, trust you’, and you know, first you see someone, that’s how you build a relationship. But then you have to get to know them a little bit, and unless you know them, you’re not going to know if you like them or not, and you’ll never get to the point of trust unless that you know them. And the only way you can know each other is through connection And, no, it doesn’t have to be number of kids I said that because that’s how I would normally think about my female GP, my family doctors, right. But you know, anything, like I remember my son

once wearing an Oilers t-shirt the, Edmonton people like this, in Vancouver and he went and talked to a bunch of med students, my son with Down’s syndrome, and afterwards a couple med students came up to him, said “hey are you an oilers fan?”, you know, and they were fist bumping him and stuff. And I could tell they were really trying to connect with him, right, like they didn’t need to know, they didn’t say a bunch of stuff about their lives or anything, but just even commenting on his t-shirt, something as simple as that, talking about the weather. Like, it doesn’t need to be very much, right, to create these connections. — Mind you, you know, he, as an Oilers fan, not everyone is perfect! So everyone, this is… we can keep going, I’m happy to just keep listening I don’t know if we’re imposing on any of you? — Yeah, I do have to do rounds, I suppose This was great. Thank you, thank you everyone Thank you, thank you everyone. Thanks so much