KERCasts
KERCasts
Situational literacy and improving inclusion and diversity in care
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Join Dr. Victor Montori in conversation with Dr. Doreen Rabi, Professor in Medicine and the head of Endocrinology and Metabolism at the University of Calgary. Dr. Rabi is also actively involved in the development of clinical practice guidelines in Canada, where she advocates for the inclusion of patient-centered approaches and shared decision making. In today’s KERCast, Drs. Montori and Rabi discuss her own formative experiences as a patient, her work in evidence synthesis and guideline development, and the need to interrogate systems of power that obstruct the practice of inclusive care and health equity.
Good morning, it's time to start our KERcast, brought to you by the Knowledge and Evaluation Research unit. I'm Victor Montori transmitting from Mayo Clinic and today we have a outstanding episode thanks to the generosity of the always brilliant Dr. Doreen Rabi. So Dr. Rabi is Professor of Medicine and head of the Endocrinology and Metabolism division at the University of Calgary, she's an academic endocrinologist, a health services researcher and an ardent advocate for inclusive medicine. As a leader of the Canadian clinical practice guidelines, Dr. Rabi is focused on improving person-centered care and the practice of shared decision making through the development of situational literacy. But I have to say that Dr. Rabi is also a ardent advocate, not only for patients for, but for the inclusion, equity and diversity in medicine and healthcare. Doreen, welcome to the KERcast.
Doreen Rabi:Oh, thank you. Well, thank you so much for welcoming me and and it's gonna be a pleasure.
Victor Montori:Absolutely. And so Doreen we always start our conversations here by asking you, how does one become Doreen Rabi?
Doreen Rabi:Um, so, yeah, I, I think like many people, I've, I've, I've had, it's been a journey. And having watched the KERcast before, I know, you always like to talk about how much of it was, you know, sort of purposeful and strategic, and how much of it was serendipitous. And, and I think, in my case, there was, it was, it was largely serendipitous, and, and mostly, mostly, I have been very, very fortunate, very, very lucky, but I've also you know, I've had a few less lucky moments. But I think when I, when I reflect on what were the most formative experiences in terms of bringing me to this point in my life, I think the, the first experience was certainly being a patient myself. And so when I was 15, I was diagnosed with anorexia. And at the time, it was a very severe case. And, and I was, I was about 5'6'' at the time, and I weighed about 75 pounds, so I was very emaciated. I looked very ill. I required a lot of, a lot of care, I was in and out of hospital for my, my sophomore and junior years of high school, I was in and out of care, but it was I was often hospitalized for months at a time. And, you know, that experience was, in lots of ways, extraordinarily hard. I mean, I think it's a, mental illness is something that's very isolating, it's very painful, not only to the persons experiencing it, but to their families. Because I looked very ill, I had the experience of sometimes being met with significant compassion, where people would be like, Oh, my goodness, like, you know, they'd be, they'd be worried I had some sort of terrible consumptive illness, and, you know, and then there would sort of be a flip when they realized I was actually mentally ill, and then they'd be like, Oh, my God, what's wrong with her. So having that sort of those, and then my parents also experiencing that, like, sometimes these moments of like, grave concern, and these other moments of judgment, and, and so I think, you know, sort of having that experience of, of, you know, feeling, feeling very different, feeling a bit marginalized. You know, I, that sits with me, to this day, I was also extremely fortunate to have a wonderful care team. And, and as I was, you know, as I think about the experience now, I was also receiving care at a time before evidence based medicine was really a thing. So, I had this care team that wasn't constrained necessarily, by some of the clinical guidance that they might have now. And I was very fortunate that my care team really was just very committed to working with me and being patient, and trying to navigate through things together, in particular, my pediatric team. And so it was, in retrospect, one of my first very positive experiences with, to some extent, shared decision making in a time before it was really formalized. I just had this very loving team that especially my nurses, that, that went out of their way to just really see the person in me and welcomed me into spaces that I don't think many patients often get to see. I remember very fondly, you know, not being able to sleep at night and the nurses letting me sit around the nursing station with them and having a cup of tea and just chatting, and, and just feeling very, very welcome and very normal and, and you know very connected. And I think that that was a very powerful thing in terms of my healing.
Victor Montori:So. So it's interesting that as you start to tell us about your trajectory, of becoming you, the first experiences, of course, this challenge of being a patient, a chronically ill patient, and chronically ill patient with a mental illness, but also one of these formative experiences is to encounter a caring team that finds way of bringing you in. So these are, these are substantial formative experiences.
Doreen Rabi:Oh, incredibly, and then I think that because it was so long, of course, I had a variety of experiences, I think the first ones were, were very, very, were incredibly compassionate. Um, but then as I aged out of pediatric care, and went into adult care, it was a very different paradigm. And it was also very interesting in terms of, like I mentioned this to you before that I, at times, it felt very, like I almost was on an anthropological study that I was like, sort of, like, especially as an adolescent patient on a general medical, general medical unit for, like, literally two months. You know, I saw a lot of stuff, a lot of medicine, a lot of, you know, I just had a lot of exposure to, you know, to, to, you know, to how things operate in, you know, the medical industrial complex. And so that was also, you know, a very, very informative experience and I think the other thing that it gave me, early education on was social determinants. And so, especially on a general medical unit, when I was there for as long as I was a number of roommates, a number of roommates that had a variety of complex chronic conditions. And, and, you know, really remarkable that, you know, some of the things that stand out is, you know, sort of the social status and social situations of younger patients that were there with complex disease relative to, to patients that, you know, presented more older with similar conditions. And so, yeah, so it was, it was a remarkable, remarkable time for me for sure. And I think that...
Victor Montori:So hold on, so you could see, you could see this social extraction showing up in some sort of, did I get it right, did you get, did you perceive a, like a hierarchy within the hospitalized patients that...
Doreen Rabi:Oh, absolutely. Like I think, you know, it's, even for myself, like I even on the pediatric unit, I, I adored my care team. But you know, I roomed with a couple of other teenagers that had mental health challenges and came from slightly different backgrounds. And as much as I love my team, I'd like to say that maybe we were treated the same. I don't, not sure we were.
Victor Montori:We are talking about Canada here, right? I mean, south of the border, the Canadian border, we see Canada as a more equal country, perhaps, than the United States. But you, you were able to perceive this in that microcosm of your hospitalization?
Doreen Rabi:Yeah, I was. And I think that there was, and, you know, and again, I think that the, you know, perhaps what I perceived as a little less patience with, you know, families that came from a different background than I did. You know, I think that I have the, I have the knowledge now that sometimes that frustration may not have been directed at the patient may be directed to the situation, may have been directed at the family, may have been directed at sort of just a, you know, a sort of a, you know, my care team or the care providers on the floor, may have just, you know, felt that a lot of their efforts, or a lot of their intervention was sort of futile, because of the, the, the lack of winning conditions on the patient side. I don't know, but I definitely could see that there was, there was a differential application of compassion and understanding at times. At least, that was my perception then. But the other thing that was quite clear is that at the time was that just, that the severity of some of these chronic conditions certainly seemed to run across, you know, at the time, like, even at that time, I could sort of see that they cut across socio economic lines.
Victor Montori:Yeah. I would have thought that, that periods of time where one is sick, one becomes self absorbed, but the prolong stay, allowed you to probably get out of your own situation and look around and you probably had already the wherewithal to begin to analyze what's going on. Right?
Doreen Rabi:I think the nature of my illness was that I didn't think I was so sick, right. And that I, you know, it was, I was pretty, like, I thought I was fine. So I think that, while there were a number of traumas that led me to behave in that way and led, you know, me to, you know, to perpetually hurt myself, in terms of just, you know, not, not providing myself with the sustenance that I needed. I was also, I think a big part of my identity was a learner, I was a good student. And that's, that's how I was known. And so I think that there was this part of me that just felt it was my obligation, I'm in this new environment, and I need to absorb it. And I wanted to go into medicine. I knew at that time, I wanted to be a physician.
Victor Montori:You knew it already?
Doreen Rabi:I already knew it. And I think that so, I think that I, I don't think I was conscious about the fact that this was a, you know, potential, you know, learning opportunity. But I as it turns out, that's how I, I did, I did observe, I did observe a lot. And I did, I did take away a ton from that experience beyond just what I needed to, to get myself on a path to wellness.
Victor Montori:Do you remember when, when you chose to go into medicine?
Doreen Rabi:Yeah, actually, I was. I was younger, I was actually 10. And there was a couple of things...
Victor Montori:I'm thinking I'm gonna be an astronaut, or, you know, fire, you know, is that...
Doreen Rabi:Yeah, no, I'll tell you, like I said, Yeah, I mean, it's good to get some insights into probably like, sort of the how my brain works, but I, so as a, as a little one, like I was I, my mum went back to work when I was in grade two. And, and I thought that was the most amazing thing. Like, I was just so proud of her, she'd gone back to school, and she trained and she went back into work and I was just like, I was, I was, I was like, this cheerleader for my mom in a way that I think she found rather annoying. She's just like, shhh its not that big of a deal, just shh, but I was just like, I was like, telling everybody at school and I just thought it was amazing that she was, she was a working mom. And and, and I think at the time I was, I remember being asked, like, what do you want to do when you grow up? And I had all of these, you know, I really thought that this, the choice of career opportunities was very limited. And I gave very traditional gendered kind of professional, professions as my response to those questions. And then I had a neighbor that was a nurse, and I just thought she was like, I was really, I was really fascinated by her work. And, and I always wanted to talk to her about her work. And I said, I think I want to be a nurse. And she's like, you know, I, I'll tell you during, like, I think you'd be happier being a physician. And then I was like, okay, and that was, that was just, it was interesting that, you know, I just, I never even thought of that until she had some sort of suggested it. And then, and then just sort of, on the heels of that the other experience I had was one of my best friend's mother was diagnosed with breast cancer. And so and then sort of watching, watching what that did to her family was something that was incredibly impactful and to the point that I actually did a grade five project on cancer. So that also speaks to like, the kind of kid I was, I was pretty serious. So I was pretty, pretty focused.
Victor Montori:So then then, you know, you became a physician. And, and, and then you became nationally active on guidelines. And...
Doreen Rabi:Yeah
Victor Montori:How does that, how does that happen?
Doreen Rabi:So? Well, I think that was, again, just luck. I think I, I've just been very, very fortunate to connect with some, some really incredible people that have just been kind enough to give me opportunities. And so the guidelines work really came out of that was a colleague of mine, Nadia Khan, who is a wonderful mentor, and she's a general internist in British Columbia. And she was she, she, she was a she actually just stepped down as president of hypertension Canada, where she was the chair at the time when she invited me on to the guideline panel as a reviewer. And so that was in 2010. And so yeah, I was just one of the things that I was, I guess, I, I was always quite good in data synthesis methods and so it was a natural fit and and I really liked the, I really liked the community, got lots of academic opportunities, in terms of writing, got lots of networking opportunities, it was just a really lovely, you know, professional experience and, and then I was asked to chair the methods review committee and then chair the guidelines committee and I became Chair of the guidelines committee in 2016. And so yeah, that was just an, let's just say for for any of the medical learners out there, you know, I went into the guidelines at a stage in my career in my mid career, early mid career, which is often a very difficult time. You know, it's, you know, it's, it's, it's a, you know, when you come on stuff, as an early, as a young academic, you know, you're seen as this person with all this promise, you know, you're starting to get awards, and, you know, people are celebrating you, and you're like, oh, you're a rising star. And then, I think, I think it's quite common I think, for women in particular, when they sort of transition to mid career, that you start to feel like you're a person that had promise. And, and that can be a very crushing time, I think, and because, you know, you're sort of, you know, and you start to have this anxiety about what am I going to do next. And, and, and, and it's a bit of a, like, I think academia does this weird thing to one's mind, in terms of really, really, really, really nurturing a lot of self doubt. And I think because of how the hierarchies and the meritocracy of medicine work, there are people that do get consistently left out and do get consistently left behind and through, not through any reason related to the quality of their work, but but purely related to, to who they are, and how our institute's are, are structured. And so the guidelines was a wonderful experience for me, because it was, it was something outside my institution, it was a, it was very, like I was, I was, I was being validated in this, this other environment, which was, I think, for me, something that bouyed me and kept me going at a time when I think that my home institution was making me wonder about, you know, sort of my value and my future a little bit. And I have to be like, I'm very, very grateful for my, my environment here at the University of Calgary. But I think that, that, that, you know, with where, the way our world works and with our annual reporting, and with our, with the pressure to produce, there is a, there's an ambient culture of what have you done for me lately, that can get a little hard, I think on the spirit at times. So, so that was a wonderful experience that way, but I think, where the guidelines, you know, it's interesting, where it's brought me now is, is that, you know, reflecting back on my experience as a patient, you know, in a time where, you know, it was in 87, it was sort of before, you know, evidence based medicine had really become a thing. Before guidelines were really there. And and I wonder at times, if, again, if there had been that structure around, you know, what my care team thought should happen, and, and what they were being told, well, this is, if you're a good physician, this is what you'll do, how that may have changed the experience. And I sometimes, I sometimes think would be less caring if that was the case.
Victor Montori:That was the second time you, you implied that in this conversation that, that, that there's an association that you're making between evidence based practice and rigidity or less caring approaches? Am I getting that right?
Doreen Rabi:Yeah, I, and I think it's, at times, having been in the guideline space for so long, and I'm still in the guideline space. But it's an interesting space to be in right now because I think we're all realized that we've got to shift a little bit. And I think that sort of the, the, the shared decision making discussions have gained enough momentum and enough visibility now that we really need to realize we have to make guidelines, you know, work in a slightly different way. And we need to translate them in a different way. But I do think for some time, that it was never conceived to be this and I think David Sackett, never intended for evidence and clinical guidance tools to dictate or overly prescribe care and, and he had even written an editorial in the BMJ in 1995, about, about, you know, care should be evidence based, not evidence burdened. And I think that, particularly recently, when you look at sort of, sort of how much clinical guidance is out there, I think we may have tipped over into that evidence burdened zone where we, I think physicians, clinicians feel very bound to evidence. Our quality indicators are very bound to evidence. And so the frameworks we have to give feedback on is your care effective, is your care high quality, all tied to evidence and don't tie enough to the patient experience or the caring experience. So, So I worry at times that that this this, this, this tool that was intended to create a unified standard of care and ensure equity, in its own way ensure equity, in terms of the care experience, actually may have went sideways a little bit and created more distance between clinicians and patients. And, and, and, yeah, so that is where I kind of sit now.
Victor Montori:I suspect tha this self doubt that you were t lking about that academia and medical training offers to pe ple, and then is selecting in some ways to people who then g t trained to please and, and not disappoint and, and not be fo nd out that perhaps they' e not as, they don't belong, hat they're, they're, these mposter syndrome, you know, j st flourishes in that spac. And then you have a guidel ne that comes, that comes aro nd and says, if you practice thi way, you can sneak by, you now, you may not be found, rig t, and so, people might actually find it to be a good crutch and a good way of feeling, like, ou're competent, simply beca se, if nothing else, the ot er, the other signs that you' e doing well might not be as s rong in an environment in w ich you don't have much continu ty with patients or much time w th them to realize whethe you're actually doing any good o them in the long run, becaus there is no long run, particul rly me, you and I have s ecialty practices and someti es, you know, continuity of ca e and longitudinal relationshi s are hard to come by. I mean, t e cardiologists, I ease the cardiologists, I tell them that they don't practic evidence based medicine, th y, they're suffering from eviden e tyranny, you know, because any any trial comes out, you know, is better than B, then every ody has to give A. So how do you go from there to now, I me n, anybody that's been following on, on social media, will, wil see that you've, you've come o be an international lead r in equity, diversity and inclu ion, how the hell does, how ha that transition taken plac? Or maybe there's no transi ion its always been there but it s just become known as part f your persona more recentl
Doreen Rabi:Yeah, I, I think, I mean, I think equity has always been a principle that's, that's driven, what I do and who I am. Like, I think even in my, even as I started my practice, and some of this relates to, again, sort of my own experience as a patient that I had this awareness that there's just like, the, you have to really, really examine the clinician patient relationship carefully to avoid it becoming inequitable, it's stacked to be an inequitable relationship. And there were things that just bothered me in terms of you know, I'd be, you know, we, you know, we, you know, we advise patients to, you know, to do a lot of work to look after themselves with diabetes. And I think that, when I started my practice, I had very little children and I remember once, you know, talking to another, another young mom, who was a pumper and you know, I was sort of saying, I think we have to do some basal checks and this was back before CGM and so that that just meant she couldn't eat and she'd have to test her blood sugar's hourly. And I, and I just remember saying, if I were in her position with, with little kids, and then someone told me to do some basal checks, I would just cry. And, and I think it was, I remember that conversation, in particular, just being something that just made me just really, really think about what it is that I'm asking patients on a regular basis. And, and then sort of looking at how we, how we construct medicine, right. And that, you know, that, you know, there's this this, this, this crazy unfairness of, you know, sort of saying that, you know, patients come in for, for assessment and for, for advice and for guidance and for care and they often leave with homework, and you know, and then if they have any challenges with their homework, there's very limited channels through which they can access you, they can only access you during certain hours, they can only call one number, and, you know, and often, you know, there's this assumption that they have to call you by your title, but you can call them by their name, and, and there's all these things that just just, you know, kind of make clinicians often unapproachable. And so early on, I just, I just sort of, I just was uncomfortable with that. So, you know, I've always been patients are, I've always wanted them to call me by my first name I've always wanted, like, I've always given my email I've always given my cell like, it's just like, if, you know, you shouldn't be riding this alone, if you're having challenges, like, give me a ring, and, you know, we'll work it out together. And, and, you know, interestingly, people often, you know, are kind of surprised that I do that. And then they're often very tentative about, about, about using those resources, but I just think on principle I should make them available and then I also feel it's really unfair that I get to ask them all sorts of personal questions and they don't get to know anything about me. So I think people over the years I've, you know, I've, I've always been very open if people want to ask me about my life, like they should, and they can, and I don't think that, like that, that my practice or my care is, is, is worse off for that, like, I think it's actually I'd say, I think it's better for that I, I, I'd say better I and I, I have to say it's, it's in terms of my own professional experience, it's gratifying. And and very, very fulfilling, you know, when patients come and ask about my kids, or, you know, remember when my birthday was, or it's just I'm very touched? Yeah, its, I'm very, so it's just, I think, I think cares just so much better. And as you say, we have the good fortune of these longitudinal relationships, I, I get to meet people, when they're teenagers, and I get to see them have their children and I get to see them, you know, through their lives and to the good and the bad. And it's, it's, it's a, it's a, it's such a, such a gift to be able to, to ride shotgun in people's lives like that. So, but that's where the equity came in, I think is mostly that I just feel that there's so much about people that we interact with, that we don't take the time to understand or learn about. And there's these, these hidden aspects of people's lives that when we take the time to, you know, kind of ask and learn. It, can, you know, it can take you in very, very unexpected, but also extraordinarily rewarding directions.
Victor Montori:When, when, so equity as a guiding value of your career. In, in our unit, we have three principles that we go by, you know, patient centeredness, integrity, and generosity, any of this ring particularly strongly with you?
Doreen Rabi:Yeah, generosity, for sure, for sure. And I think I've been very fortunate to have many generous mentors, through my, you know, through, through my, through my career. You know, I mentioned Nadia Khan and, and my co chair at the guidelines, Stella Daskalopoulou, she's just a lovely, lovely person who's extraordinarily generous with, you know, with her time, and her knowledge I, my partner, Bill is, is a big bottle of generous leadership, you know, the interactions that we've had, I've, you know, always always, always struck by, you know, by, by people and, and again, Bill's a great example of this who's who's just, yeah, just just, you know, he's someone that goes out there and, and is, he's an extrovert to begin with, but, but just, you know, there's, never puts a limit on time, never puts a limit on, on, on what he's willing to give to, to, you know, and elevate another person and boost another person. And so I've, I've benefited from that kind of mentorship. And I tried to, I tried to, you know, sort of take that approach and, and, you know, sort of, you know, just, just pass the love forward, so to speak.
Victor Montori:It's pretty evident to anybody that has interacted with you that generosity is, is like in a Star Wars type of way will be generosity is strong in you like the force, what's, what's been your favorite collaboration?
Doreen Rabi:Oh, I think, um, yeah, I've had, again, very fortunate to have many, I think, I mean, my, my kids are a huge part of my life and the best part of my life. And I think my family has been a lifelong collaboration. And I've learned so much from, from, you know, my, my parents and my brothers and but my children are, like, I mean, I'm obviously biased, but I think they're amazing young people. And I think I've, it's this anthropologist in me, I think sometimes I took sort of a bit of an anthropological approach to my kids as well. And just, you know, always, like, we just always wanted to observe them and just sort of really understand that people that they were and try to create environments, you know, that were, that were personal to them, that allowed them to succeed. And, and I think that I've, I've, you know, I've always, like my family probably, you know people often sort of say, you know, like, everything, you know, democracy is great, but families, families, it's not so, you know, it's not necessarily so much of a democracy and parents get to get to have some authority. I'm not sure that my house runs that way my kids have a bit of like they've, they've, they have a fair bit of, a fair bit of direction and a fair bit of authority over me at times, but I quite like that. I think my, I've learned a lot from my kids. They I'm amazed at how equity minded they, they naturally are. I'm also struck by and really sort of, you know, very, very heartened by how politically active they are. And I, they, and they, you know, like, as all teenagers, they, they, they're really good at keeping your parents humble, and I think that they've been pretty vocal about the things that they feel that, you know, their, you know, their grandparents generation, that our generation, you know, didn't, didn't do terribly well. And, and I see this in my students as well, that, you know, I think youth often get dismissed as being unwise or being, you know, a bit too sentimental. And, you know, and the truth is, is that passion and that heart are such lovely, lovely things. And I think the students I've worked with, in particular, are remarkable organizers. And, you know, they can, they, their voices are incredibly powerful, but they're not often heard. And I think this is another thing that sort of pushed me to where I am now is, is, is, you know, you know, some frustration, that, that these, that these young voices that are brilliant, and, and hopeful, but also pained at times, don't always, don't get, don't get the attention that they should get. And, and I think that, especially in medicine, our, the way we're structured and the hierarchies we have, that those student voices are, are often are just, you know, often quelled. And I just think that it's a, it's a shame, like there's just I've, students have, have really inspired and transformed the way I think, and as my kids have and so I just, I think, I think that my young collaborators are, you know, definitely, you know, hold a spot in my heart for sure.
Victor Montori:It's interesting, because you did, you've done what might be a couple of head fakes in that one, because on the one hand, as you were saying, my household might not be might not appear like a democracy. And then I was, I was thinking that what will follow is that you will be some sort of tyrant, but it's actually your kids running you. That was the first head fake. And then the second one is that you're, that you're finding your best collaborations in people that perhaps if I were to ask them their, they will be describing themselves as looking up to you or learning and learning from, from you, admiring you and so forth. They may not see you as a collaborator, but you pretty much see them as teaching you and helping you be better. Did I get that? Right?
Doreen Rabi:Oh, absolutely. And I think, I think that, and my patients as well, I shouldn't say my patients, they're not, I don't, I try not to use possessive language, because but, but, the patients that I work with. Similarly, I think that, you know, I have learned so much, and there's and again, this is the generosity, right is that, is that all patients that come and are, you know, trust you, and are like, are comfortable enough with you to, to lay out some pretty personal, some pretty personal and intimate stuff. I mean, that's extraordinarily generous. And then, and so and again, I think that I've been struck by, by how that generosity has, has, has truly been transformative in how I think and how I do things.
Victor Montori:When you think about thinking now about your academic work, as a, as a physician, as a researcher, as an academic leader, what do you think has, is the meaning of the work that you're doing?
Doreen Rabi:What I hope, I think if, if, you know, it's sorry, just like, I'm going to tangent a little bit, but I promise I'll come back. But I think, I think, you know, again, sort of thinking about sort of this mid, early to mid career experience or sort of that transition from early career to mid career where, where, again, you're sort of, you know, you've had an early career investigator award and, you know, you're, you're sort of validated that, okay, you've got some good ideas, kid, let's see what she can do. And then in that mid career, we're, you know, you're you're trying to really establish yourself and, you know, you've often finished a first program of work and you're trying to figure out how to reinvent yourself and, and this is when, you know, more awards and things like that become really important in terms of, you know, kind of giving you opportunities and, and at that time I you know, I struggled a little bit and I still I think again, with medicine, we are pleasers, we are looking to make sure that we're doing the right thing. And we've set up a system where we're, we're quite dependent on those, those external, you know, those, those, those regular boluses of external validation. And it's, it's, and I was struck that, you know, year after year I was, again, the sort of my, my, you know, my confidence in myself and, and my joy and work was being eroded, knowing that I was needing those things, and I think I've gotten to a place in my career and partly it was, you know, I think just sort of just serendipitous connection with a couple of, you know, of really important mentors, that, you know, just sort of made me really challenge, like, why, like, why why, like why are those things important? And, and, you know, really, at the end of the day, like, what is what is it that I want to do? And what is it that is meaningful? And, and do I need those, those, those things to tell me that those things are good? And I think that I'm very grateful to, to those people that have made me see that I think that if I were to say at the like, what do I want my work to accomplish? What's the meaning of my work? Is actually, I'd like to, I'd like to, you know, be someone who nudges major culture shift. And, and I, I'd like to, you know, kind of, kind of think that's that some of the work that we're doing right now might really challenge how we're thinking about how things are structured, and how our structures are actually contributing to a lot of harm. And I think harm for patients in terms of again, we've got these, these hierarchies that that are very oppressive, that continue to harm patients, that continue to erode relationships between patients and clinicians. I think that within academia, we have an educational system, the medical education system in particular is also quite oppressive. And not equally so it's generally oppressive, but particularly oppressive to, to, to racialized learners. And so, I think, I think, you know, it just sort of my, I hope that the lens of equity that I bring to the work that I do, and my my genuine commitment to equity, will, will, will start to, again, sort of, you know, start some of these more challenging discussions about do we really, do we really want to continue this? Do we really, you know, and, you know, do we really want to continue engaging in preventable harm, when we can be so much better?
Victor Montori:Help us understand what you mean by oppression?
Doreen Rabi:Well, I think, you know, when I, when I use the word I, I use it as a, you know, I think that there's, I think I basically want to communicate that there are times when people are really left without freedom or choice. And there is, it's a, it's a combination of there's a, there's a, there's a removal of, of choice, there's a removal of autonomy. And there's a, I think that the people who are experiencing oppression often feel that there's, there's just a, you know, there's, there's a lack of control in those situations, and, and unfortunately, with that, a lack of hope. So, I think it's a combination of all of those things, I think it's a, it's a withdrawal of hope, it's a withdrawal of dignity. And it's, and it's a sense that, that, that there's, there's, there's little choice and little option for, for them and, and the only path forward is the, is the path that someone who they perceive has control over them is telling them to take. And I think that...no sorry go ahead
Victor Montori:So I was just drawing a parallel, you know, so you go into healthcare, as a patient you get care and you describe ways in which care can be cruel to people when it for instance, fails to capture understand what's going on or where it throws in addition to care, throw stigma into the picture. As you know, you, you discussed that shift between Oh, you, you must be very sick, you know, maybe you have uncontrolled diabetes or tuberculosis, Oh, it is mental illness okay, that's a different story. Right. So, so that shift, that's cruel. And but now you describe in education a parallel syndrome in the sense that, or a parallel phenomenon in the sense that, you know, Amartya Sen and Martha Nussbaum, for instance, talked about people having capacity. And, and what a just society, what it does is it looks to remove all the barriers for people to flourish and manifest that capacity and manifest their potential. And I'm thinking of Malala Yousafzai, you know, so being in, in, being shot because she wanted to go to school and learn, and the patriarchy where she was growing up, you know, would not tolerate a girl having those types of ambitions. How, but that seems very extreme, you know, getting shot in the face, because you want to learn, that seems very extreme, very in your face form of oppression, how does it manifest in medical education you think? Because, again, you, you go there trying to, to flourish and then you're telling me no, no, no, there is a mechanism of oppression that is preventing that exact thing from happening? How, give me an example how that, that, that ends up happening?
Doreen Rabi:Well, I think in medicine, it's, it's, it's a, what's most sinister about how it happens in medicine is extremely, it's invisible, like you actually have to really look for it. And I think in terms of, you know, I, there's more, there's been quite a bit discussed, thanks to sort of the work of, you know, several leaders in this area, you know, I, you know, Esther Choo and Ar havan Salles, like, there's, th re's a number of very, very nota le women that have been out there talking about sort of the gender gap in pay and gender gap in opportunity. And we see it in, you know, we see i in academia, we, you know, we' l even see it in clinical o tcomes. And I spent, you know I started my career loo ing at gender differences in s x differences in, in cardiova cular care in women with diabet s, many women with diabetes. But so, so we see this, we see these subtle biases play out, in terms of, you know, like, women's, l ke, how women are engaged in ter s of clinical decision making, how women are perceived when the present with symptoms, there i there's that again, these these, these biases that ju t continue to play out, a d, I think as clinicians that re, that are, that are trained n science, we believe that we re, we're not prone to making those, those, those systematic e rors. And so, you know, that's nd that's the tricky thing is, is that we've convinced ourselv s that we are not creatures o bias that we are creatures o science and, and, and so, it's a fascinating thing, that hen you start revealing these these, these systematic er ors, that you know, that that the, the, you know, that, yo know, nearly half of all wome that present with ischemic heart disease aren't recogn zed as having ischemic heart d sease, at the first pre entation, are dismissed as s mething else, when you look at the, the, you know, sort of the epresentation of black indigen us or, or, or students of co or in medical school, in medica school, it's significantly lo er than it is in the popul tion, we make systematic e rors, we just aren't very good t recognizing them or acknowled ing them. So, and then his plays out throughout peop e's education out through thei careers, and it plays out, ou know, for, for, you know, f r for several patients as they interact with the healthcare sy tem. There's, there's an expe ience of, you know, these, these, these, these, all thes interactions with healthca e system that leave them feeli g disbelieved or feeling, leav them feeling invalidated, you k ow, that adds up, and it leads to, you know, very well earned d strust of the medical system. An I think for, for stud nts that have experience those, those experience, you kn w, which, you know, which, y u know, maybe maybe ov rt, you know, aggressive acts of interpersonal sexism or racis, or they may be, may be ve y subtle, you know, exclusions nd omissions. But, you kn w, over, over several years a d over, over, over decades, it leads to, you know, quite sign ficant trauma and quite signifi ant hurt and, and, and, and, as ou mentioned, like, just, you know, uh, you know, a ragic loss of opportunity, nd, you know, that, that ultimat ly, you know, is, is, is somethi g we all, you know, you know, we all suffer from, it is,
Victor Montori:So this series is about care that fits and the efforts that clinicians in the office make with patients when they work together to try to craft programs of care that makes intellectual, emotional, and practical sense to people and of course, there work people will then have to do at home, or in their life to try to make that care program, you know, fit with all the other demands and routines of their life. How does this lens that you bring work in to make care fit better?
Doreen Rabi:Well, I think, you know, I just submitted, we just submitted a grant on situational literacy, and situational literacy is this construct that, you know, kind of as our team kind of developed, and it's this idea that it's, it's, um, it's the recognition that every person is going to, you know, come to the table with, you know, a certain degree of medical complexity and a certain degree of life complexity, and situational literacy is that, that understanding of, of how those two things interact in this person. And it's, we wanted to use the term literacy, because it's not just a competency, it's not just a set of skills, it's a, it's, it's this enhanced understanding, it's his ability to communicate, to to truly understand to be fluent in, in the lived experience, essentially. And, and I think that, since submitting the grant and sort of thinking about sort of, you know, your book and the language that we use in the patient revolution, it's really a different way of approaching sort of seeing someone in high definition. And I think that, you know, we, when I, when we were sort of trying to come up with this construct of situational literacy, and thinking about situational literacy, and the importance of it in shared decision making, I was left with, again, this idea that, you know, when you have a clinician patient duo, and I'm not gonna say they're partners yet, because I think that partnership is something that's earned. It's not something that's a given. And the way we develop that partnership is, you know, trying to close the gap that naturally will exist between a patient and a clinician, again, our, our structures, bring these two people together, in a way that's, that's not entirely voluntary. You know, they're often they're, you know, a patient is assigned through some sort of central access and triage process, there's no, you know, and at least in Canada, that's how that's how it happens. And then patients, you know, arer there, you know, not because they necessarily, often because they don't want to be there, they're, they have a diagnosis they have, they have, you know, they have pain, they have, they have unwanted disability, they, they have, you know, unwanted symptoms. And so they're sitting there with this imposed, with this imposed state, and, you know, physicians come in with a very chosen state, in my case chosen at age 10. And so it's, it's just, it's, it's a very, very, very unequal playing field. And, and I think that my, like, I think our hypothesis is, is that if, if, you know, physicians, clinicians, you know, it's, it's, you know, to make that, to make that environment more comfortable, more safe, for shared decision making to ensure that the trust is there so that that process will go well, because, again, physicians often think we're doing something that we do all the time, we think we're, we think we're really good at shared decision making, but the data would suggest we don't do it very often, and we don't necessarily do it fairly well, we don't necessarily do it really well. And I think again, because we, again, we're we're we're sort of caught up in the process, and we're caught up in the method. And, and we sort of kind of forget that, that, that, that a key part of shared decision making is really, really, really understanding the experience of the person in front of you. And, and, you know, and getting them comfortable and getting them, you know, to trust and I think that the way that patients trust, especially patients who've experienced trauma, who've had adverse experiences in the past, is, is, you know, for you to take that time to take that effort to, to become fluent in their lived experience. And, and, and the physician needs to be the learner in that that scenario, to get to that point of partnership.
Victor Montori:In this discussion, you've taken us through two kinds of challenges, I think in, in seeing the patient in high definition. Initially, I think the challenge of stigmatized conditions, conditions that perhaps are not fully understood, that really strain the ability of whoever is called to care professionally, a clinician or, or a friend or family that comes comes to the side of the of, the of, the of the sufferer. There's the ability to, to act with compassion towards someone that's going through something that you perhaps have difficulty fully understanding or capturing. And that's almost on the biological side, and then you're bringing up an additional level of complexity, which is fully understanding the biographical and historical challenges that a person is going through. Caring for people is hard. If one has to do all these things, right?
Doreen Rabi:It is, it's really rewarding, though, I think with anything, like, it's just, it's it's that, you know, you, you know, you, it becomes, um, and I, you know, I've, I think the concept of love has been discussed, you know, a lot in this in this KERcast. And, and I think that, you know, love doesn't come easy, you've got to, you know, you do have to work at it, and, and, you know, relationships, take work and, and take time, and, and, and, and take dedication. And so I think, yeah, I think that, and this is again, where we have to look at our structures, we don't value that currently, in how we've structured care, there's, you know, it becomes too easy to not take the time.
Victor Montori:Check the box, do the guideline. A student that is trying to get, that is trying to be like you and, and work well in healthcare, finds those structures, you described them as oppressive, restrictive, limiting, channeling, perhaps you you know, what you're, you stay on your lane, so to speak, is your advice to a student to, you know, stay in your lane and conform and get it through and once you get to my level, then you speak out? Or? Or do you set them out to fail, so to speak, because they become the troublemaker and the and the person that is uncomfortable and trying to raise the issues, you're raising but at the point where they have, as you pointed out before, nobody's listening to their voice, they have no power and they're desperately trying to fit in. So what should a young person to do in that sort of situation?
Doreen Rabi:Yeah, I mean, I think that I've like, this is something I actually think a lot about, because I think that particularly, you know, one of, one of the things when you're doing, when you're when you spend a lot of time in the equity, diversity and inclusive space, and you're trying to figure out how can we, you know, how do we, we, you know, we desperately need to be a more diverse clinician community. There's so much evidence from the corporate world in particular, that the more inclusive we are in terms of, you know, just having good representation from, you know, from, you know, from the, you know, from the disabled community, from, you know, from, you know, the LGBTQ+ community, you know, from, from racialized communities, like, the more representation we have, the more diversity of life experience we have, the more views we have, the, the better we are, you know, we just are, we just, we just think more creatively, we think more compassionately, we, we problem solve in such a better way. It is, it is there's just so many reasons to be inclusive, beyond just that it's, it's, it's, it's morally important to be inclusive. But, but I think the thing is, is that when you have these existing structures that we know are harmful, you have to, you know, you, you want to, you know, we feel this urgency to, to, to be as inclusive and diverse as possible. But we have to make sure we're doing the work on the other side, to ensure that we're actively knocking down those things that are going to hurt people, if we, you know, we don't have we, right now are systems and out structures, you know, are oppressive, they are hurtful, and, and we need to be actively knocking those things down and challenging those things to ensure that we don't hurt this, this, this diverse community that we're trying to grow. And so along those lines is again, sort of how do we, how do we coach students? And, and what's our responsibility to keep those students safe? And, and, and give them an environment where they can thrive? And I think that's really tricky.
Victor Montori:Do you recommend your colleagues and other teachers that are in contact with those students to foster those challenges? How do you create an environment for students to be able to kind of open up their wings and, and show us a different trajectory than the one that we set up for them?
Doreen Rabi:I'm hopeful at this point that we've got, there's, like, I think that Yeah, I don't know. I, you know, I mean, I'm very fortunate right now that I'm in a position where I, like I, I have a leadership position within my, you know, within my medical school so I can, I can start, you know, sort of busting some things up and, and, and, and, you know, work with students to rebuild them, you know, in a way that's that's far better and healthier. I mean, I have leadership in a, you know, in a compartment in a bigger, you know, in a bigger organization. So sort of busting through all of those other, those other walls is is something that's a work in progress. I mean, I am very grateful to be at the University of Calgary right now, because I do think we have leadership that at a variety of levels that's really quite open to, to some serious, you know, some serious, you know, demolition and reconstruction. That's, that's, that's inclusive and healthy and loving. So, yeah, so it's an exciting time. And I think I mentioned because I think, I recently was given a new position where I have a little bit more, a little, a few more opportunities to bust some things up and do some things differently. And, and was a little surprised that I, that I, that I was offered the position, but at the same time really, you know, heartened that people know, you know, people know, what I like to do, and, and, you know, as, as, you know, sort of going back to the very beginning of the discussion sort of I have been fortunate enough to be able to, you know, get the opportunity to do it. So, yeah, I think that it, there needs to be a commitment from leadership, you know, to, to restructuring things. And I think it's very, very, very difficult to make those changes, unless you've got, you know, sort of leaders that that are willing to say, okay, we don't really, we're a little uncertain at what the next phase will look like. But we trust that, you know, you'll you'll take us in the right direction. And I have to say like, it's just like, it's, it's something that still continues to move me that, that, that I might be someone who can help with that. That shift towards something that's, that's, that's, that's healthier.
Victor Montori:If they say that the arch of history bends towards justice, it's probably because of people like you that's pulling it down. So you're pulling it in that direction. Doreen it has been a wonderful gift to have you in the KERcast and to see your clarity and your courage and your, your commitment to students, commitment to young people, and to create a better world. And it's been a pleasure to have you, to have you with us. Thank you for joining us.
Doreen Rabi:Well, thank you so much for having me.
Victor Montori:Excellent. Thanks everyone else for joining us. Please join us for our next KERcast brought to you by the KERunit and please take care