S3E15: Decolonizing Medical Research

Margaux: No, thank you because they're . . .

Bushra: No, it says frozen.

Margaux: . . . going to get . . .

Harjit: No.

Margaux: . . . stuck in my teeth.

Bushra: Yes, it is. You just got it out of the freezer.

Margaux: Fridge.

Harjit: Fridge.

Bushra: Oh.

Margaux: Bushra.

Bushra: It looked . . . the bag looked frozen. I'm sorry.

Harjit: No.

Margaux: Because . . .

Bushra: I would like a mango, please. I love mangoes.

Margaux: Eat your mangoes so we can start or sit back.

Bushra: One second. Go ahead and start.

Margaux: Okay. Hey, everyone. Welcome to "Bundle Of Hers." Margaux in the studio here with Harjit and Bushra.

Harjit: Whoop. Whoop.

Bushra: Hi, guys.

Margaux: And, today, we're going to be talking about something that I have had a lot more time in fourth year to think about, and I think is really important, which is going to be about research and how research is colonized and how we can sort of decolonize. And those are some sort of big buzz words that, let's start out defining those. Let's start with colonize, and by the dictionary definition . . .

Harjit: We love . . .

Margaux: . . . it's . . .

Harjit: . . . dictionary definitions.

Margaux: Yeah. But, yeah, and it's, like, a standardization, which, in and of itself, you have to critically view through the lens of a colonizer, right? But . . . Okay. So this dictionary definition is for colonized: "To send, of a country or its citizens, a group of settlers to a place to establish political control or appropriation for its own use." So, examples, there are many, but I think a big example that stands out are the British settlers who came to the U.S. And when I think, even that name, the United States of America is a colonized name, in and of itself, right? When they came over and colonized the native and the indigenous people who were living on this land. Other Europeans sort of came over and colonized this land over here. Similarly, Europeans also went into Africa and colonized those lands and then people from, what is now the U.S., went to Africa and colonized for the slave trade. So those are just some big examples. Would you guys have anything . . . other examples to add?

Harjit: There is also the colonization of India by Great Britain as well. And also, a little bit, kind of going further, I think colonizing kind of seeps into an entire structure of a community. So when I think of colonization, I think of it more being like in our daily lives. Like, how things have been changed, the way we eat food, the foods we eat or things we see on TV. So there's also that seeping of colonization.

Bushra: Yeah. It creates a standard for living or a standard of what's appropriate based off of the people that have control, and in this case, it would be the colonizers, obviously. And so it sets that standard. And the standard is then upheld for, literally, centuries, until today. And so it kind of gives you the grasp of how much control there is. When people use the word colonizer, it's not a small thing, and it impacts pretty much every facet of life, in whatever area they're colonizing.

Margaux: I agree. And I think the key thing to take away is that colonizing is with the intent of appropriating, with the intent of taking over control, of taking political control for your own use, usually, because that other group that you're trying to colonize has a resource or something that you, as a colonizer, or a group, as a colonizer, wants. And then, just in a medical example, you can be colonized by bacteria. So that's interspecies colonization.

Harjit: Ooh, yes.

Bushra: Bringing it back to medicine.

Margaux: Like, I'm sure we're all colonized with MRSA, a multi-drug resistant.

Harjit: Yeah. Yeah. Yeah. For sure.

Margaux: Or a staph-resistant bacterium.

Harjit: That's so interesting to see that, like, kind of parallel because it is similar. It's, like, what do we think about colonization? It's, like, taking a part of our body, right?

Margaux: Right. Yeah. So . . .

Harjit: And that's really . . .

Margaux: . . . we can . . .

Harjit: . . . cool.

Margaux: . . . okay, even go to that. So then, let's talk about decolonizing. And so, literal meaning, given that we just talked about the definition of colonizing, is, "When a nation seeks to become free of their oppressors or the oppressing regime that had been imposed on them by a colonial power." And that can either be physically or legally, which would be legally by whose definitions, right? And that can be forcefully. It can be violently. It can be non-violently. It looks many different ways at any different time. It's a very fluid thing. So it can also be colonizers choosing to withdraw and leave from the lands or the peoples that they have been oppressing and colonizing. Ultimately, it's this transition of being oppressed and dependency to independent for those who have been colonized.

Harjit: Often, when I think of the word decolonizing, I think of unlearning. So, for you to unlearn something, you have to learn new things, similar to critical thinking. So it's ideas that might have been formed throughout your life due to a lot of influences, may it be education, media, what my parents told me, and then thinking about them like, is this the real knowledge or is this something skewed or biased?

Bushra: Critically thinking about all of the input that you've received for a long time.

Harjit: Right. So, for me, the word decolonization encompasses a lot. And just, like, colonization seeps into every facet of our life, decolonizing also seeps into every facet of our life. And it's a lifelong process.

Bushra: The way that I think about it is, like, decolonizing your mind. I also want to put the caveat that not necessarily everybody does this, but it's like a first step into, like, figuring out, if you're a country, if you're a nation that has just been decolonized, okay, what is this new nation going to be and what is it going to look like? And what things do we want to keep and what things do we want to reject? And it's, like, it's a process.

Margaux: And like you were saying, too, Harjit, colonization seeps into every facet of life, and I think you can have multiple people or things that colonize you, right? Like, it can be a relationship with another person, who is . . . that relationship has colonized you or impacted you in a very negative way. It can be a system that has colonized you, or it can be a whole country and government and systems. So I think it's important to unlearn and really think through a critical lens of, like, "If I have an emotion that comes up . . ." For me, right now, it's really important to understand, well, how was I socialized to think about the way I feel about this specific emotion in this moment? And, like, why am I feeling this way, and what are the contributing factors that play into it? To sort of start to deconstruct and understand the ways in which I benefit from colonization, from a history, you know, I am white, and I own a very colonizer history, right? And so, like, how . . . In ways that I benefit from that and then in ways that I am colonized, too, by the system.

So while we could probably have a whole podcast series about decolonization, and, indeed, there are many that exist, today's episode is going to focus on a very micro level topic, specifically, how medical literature and research is colonized and what it looks like to decolonize that and break it down.

Harjit: So this school, and I think a lot of academic institutions, really push the idea of evidence-based medicine, right?

Margaux: Well, I mean, the whole basis of a academic institution is driven by research.

Harjit: Right. Correct. So research is the systemic investigation into a study of materials and sources in order to establish facts and reach new conclusions. It's the extension of boundaries of knowledge. So kind of going into this unchartered territory and how those new source of knowledge somehow changes outcomes that exists, right? So that's what research means to me. I love thinking that way as well. Like, having a research mindset, you know. Push the boundaries of knowledge. Like, that's what I view research as. So when I think of evidence-based medicine, it's using research, so these new ideas and applying them to understand diagnoses and treatments.

Margaux: I agree with those definitions, Harjit. And I think there's two sides to it, right? Having it be . . . research be standardized. You know, I think from elementary school, we're taught "the scientific method" and this very protocolized way of thinking about science and doing research, right? Having a hypothesis and testing it and being able to reproduce it and all these sort of rules. But, in and of itself, that can create a very limited/oppressed box, right? Of what research can fit into.

One of the key examples I have been thinking about when considering how research is colonized and how to decolonize it is acupuncture, in which comes from very ancient Chinese medicine, right? And how they probably didn't have the standardization and protocols that we have in place for research now and the quality assurance and all this stuff that you have to go through. But, somehow, they figured out all these points on your body to put the needles in and have a very effective outcome. But it wasn't until recently that it became "evidence-based" because now, there were research papers to support those outcomes that had been known for years and years, like, thousands of years. Is that even right, thousands, or many . . .

Bushra: Probably longer . . .

Margaux: For many . . .

Bushra: . . . than that.

Margaux: Like, for . . .

Bushra: You know,

Margaux: . . . forever, right? So that's something that I have been thinking about as, like, a traditional medicine that has worked for so long is only now being recognized . . .

Harjit: Recognized.

Margaux: . . . as an evidence-based. Yeah.

Bushra: And I think people have a hard time accepting things that they can't explain. And I think that happens with a lot of, acupuncture is probably just one example, but a lot of other various methods that people from non-western countries use. And so we tend to not take it as evidence-based medicine because it doesn't have that, you know, double peer-reviewed, reproduced a million times in a container.

The thing is that I don't think that necessarily would stop people from going to an acupuncturist because it does work. Even though we can't explain it, for whatever reason, it does work. And so I think now that people are starting to take interest in these kind of approaches and starting to put down onto paper, like, the documentation and being able to reproduce the results, it's being more widely accepted. But, I also think that it is important to investigate and to do research on these things because while we don't have all the answers now, I think it's important to navigate these unchartered therapies and to figure out which things actually work and which things that are not working.

Margaux: I agree, Bushra, because I think there is a place for it to serve as a safety standard for people. Because way back when, in the 1800s, before, you know, the FDA existed, people were selling tinctures of mercury and iron and lead and, like, people were eating them and getting sick and dying. And so there has to be some sort of validation. But this is where I think the meat of our conversation gets to, is, like, what research is being left out of the structured box that we consider evidence-based medicine?

Margaux: And who has access to conduct those studies?

Harjit: Right. And the thing is research is so important, and in theory, evidence-based medicine is amazing. But the problem is that, because it's colonized, a lot of our views are tainted and skewed. Like, who's getting funding for this research?

Bushra: Ooh, funding.

Harjit: Who . . .

Bushra: That's a huge topic.

Harjit: Whose research is being pushed more than other research, right? And then, the most important, and I think this is one thing that irks me, is, who's getting the credit this research, right? Like, acupuncture existed thousands of years before. This is just an example, but I always wonder sometimes when I read a paper, "Is this really this person's idea or is it just being adopted and then they're going to get credit for it," you know? So when I think of how research is colonized is, it's more complicated than just reading a paper. And I think that's something great scientists have taught me in my, like, you know, "science career" as, like, an undergrad in bioengineering, is, every research article we read, every research article that is published, it's very important for us to be even critical of that, right?

Bushra: Yeah. I mean, that's the whole basis of science, though. You have to be critical on every piece of information that you intake. You're not supposed to just take it for fact, right? Which is why being peer-reviewed is actually pretty important and to have reproducible results because a one-off thing is just a one-off thing, but if you can reproduce it many times and . . .

Harjit: Even after its published . . .

Bushra: . . . and by many . . .

Harjit: . . . question it.

Bushra: . . . and by many people and then looking at the data that's presented to you and figuring out, "Okay, has this data been skewed to look a certain way?" Because people do do that.

Margaux: No. And I think it's important to question the validity of it, and we're taught that, like, validity means, can that one study be applied to the population at large? But that is such a complex question because then it's, like, what population are you trying to apply this to? And most often, research studies recruit white men, and that's historically been the trend. Although now, they're better about making sure to include women. However, different genetic ethnicities and races and diversity is still at paucity. We can get into the whole reasons as to why that exists, whether that's institutionalized racism or mistrust of the system given historical and generational trauma from the system on different populations. I think you really have to question, can this one study about a blood pressure medication really be applied to every patient?

Harjit: And I think that's the biggest focus, right? Sometimes you can see a patient, and they'll surprise you like crazy. They'll present with something that doesn't seem like the typical presentation, but they might have that condition, right?

Bushra: Come first.

Harjit: Yeah. And so I think that's what's so important to realize that practicing evidence-based medicine, you're using research. So even at that time, also use a research mindset. Just don't take that evidence for what it is.

Bushra: And how it applies to your specific patient, right?

Harjit: Right.

Margaux: Mm-hmm. And so that moves us into something that I've just learned about, which is called research justice, an area of research that is a framework that's meant more to shift, like we've been talking about, the control and the power and the drive of the research into the communities that should be doing it, that are most affected by what needs to be researched. I think medicine has traditionally left out narrative, or even all of science, like, narrative and anecdotes, historically, have not had a place in research as being a valid form of data, right? We're always looking for objective numbers and values that you can reproduce.

But when we're trying to understand how different people are affected, because, ultimately, our patients are people, we're people, narrative should have an important role in understanding what's going on. And I think, right now, where I learned about this term research justice is by reading a book about the black maternal health epidemic right now and the huge morbidity and mortality well above white women giving birth, well above any developing country's rate of maternal mortality. So this book is a basically a publication called "Battling Over Birth: Black Women and the Maternal Health Care Crisis," and it is a collection, not only of objective data, like we're used to seeing in evidence-based medicine, but also a collection of narrative-driven research.

Harjit: Oh, that's cool.

Margaux: Yeah. And so it really helps to understand and asks the question, why do we have such high maternal, black maternal death rate in this country? And so research justice is defined by, this is from the datacenter.org, which used to be a nonprofit organization that tried to foster this idea of research justice and has since disseminated into other nonprofit organizations. But, basically, "It's a strategic framework that seeks to achieve self-determination for marginalized communities." So, like you are saying Bushra, who gets the power? Who gets to say what is being researched and why and has access to that funding?

And so research justice centralizes community voices and leadership in an effort to facilitate genuine, lasting social change, or essentially, decolonization or removing oppressive barriers for that group of people. It's giving the control and the capacity in resources for communities to produce their own research in a meaningful way to them and share it in a valid way for all of us to then use to interact that community.

Harjit: Which I think it's beautiful because if you are a part of a community, you have so much knowledge just by being there. Really, it can go in the directions that would be super helpful coming back to the community because a person in a part of a community cares about that community the most. So I think that's, like, a strong place to do research.

Margaux: And I think you don't know what you don't know, right? As a white woman, I might never know what the Somali community is really needing to understand and research about what's going on in their community here in Salt Lake, and that may be very different than their community in Minnesota. And so giving the opportunities and the capacities and the control to people within their own communities really helps then when I read and or digest that research, I can understand what I didn't even know.

Harjit: Yeah, and another term that comes up when we talk about this is community-based participatory research. I did a lot of global health work as an undergraduate and this framework that I'm mentioning, it really takes the people that are both doing the research and "the research is being done on" as kind of like a partnership rather than more of a "I'm coming in, and I'm doing research on you, and then I'm leaving." But it's . . .

Bushra: Taking, yeah . . .

Harjit: . . . through . . .

Bushra: . . . the data and the information back to the United States, for example.

Harjit: Right. Really shifting the way you even think of conducting research, and I think a lot of that kind of starts from before doing the research. And I think that's . . . concepts that really, again, taint the data, you know, and kind of our conclusions that we draw from it.

Margaux: And I don't think we're trying to say that there's no place for evidence-based medicine because I think . . .

Harjit: Oh, we definitely are not saying that.

Margaux: Yeah, we all agree that it is helpful to have a standardization and a structure to understand the positive outcomes to expand our boundaries and our knowledge. But I think it's so important to always question whose voice is not represented by the research that we have and that are using to standardize things and why.

Harjit: Yeah. And how does this work for our patients or does not work for our patients? Right? I think that's the biggest thing and that's kind of what I take away. When I leave this place, I want to make sure I understand research in that way and not just take what's given to me. Because then, what's the point of us all being doctors, right, if we aren't treating our patients differently? Or everyone's treating the patient the same way, how is one person ever going to have different treatments for something? Do you know what I mean?

Bushra: Yeah.

Margaux: And even along those lines, too, it's, like, you may use the same antibiotic as another physician would because that's what's been proven and it might work for that patient, but the way you interact with that patient on other levels and other facets in explaining how the antibiotic is working and the importance of taking that antibiotic, from what we understand to be true about antibiotic resistance and whatever, it can be totally different than a different physician and make a huge difference in your rapport with that patient, and which I believe connects to that person's healing.

Harjit: I love . . .

Bushra: And I think . . .

Harjit: . . . that you . . .

Bushra: So . . .

Harjit: . . . said that. Sorry, but you can go.

Bushra: Like, we live in the United States, obviously, but even the way that medicine is practiced from, for example, the West Coast to the East Coast to the Midwest is completely different depending on the institution that you live in. So we even see the same "evidence-based medicine" being utilized differently to treat patients differently based off of the populations that they serve. The populations in each different area is going to be different. And so we take in the information, but the way that we practice medicine can be different, and that's okay.

Harjit: And I think that's the whole thing about decolonizing medicine, right? It's being critical and being a critical thinker and thinking of all facets. I also want to mention, maybe this is a side note, but I think an important note is that research should be able to be explained so simply to our patients, like you said, so that they feel included in the conversation. And that's I think another way where research sometimes is so oppressive because people feel like it's unattainable, right? And then they feel like, "I don't understand what you're saying. Like, can you tell me what this disease means? Can you tell me what this treatment means?" It should be in a form that it can be communicated to another person, right?

Margaux: Mm-hmm.

Bushra: Well, that's like the thing, though. Research is an elite thing, right? You have to be an educated person not only to have access but to be able to interpret it, and if you don't have that education, then you don't have access to that information. And, basically, your doctor should be the one that gives you the reasoning behind everything. I mean, I wish research was more easily accessible for people to understand in a layman's term what exactly it is that they're studying, who they studied, what the outcomes were. But it's not . . .

Harjit: But it should.

Bushra: . . . available.

Harjit: It should be, and it can be. You know, it actually can be.

Margaux: A problem with that is then people rely on news sources and media . . .

Harjit: They'll Google.

Margaux: . . . article . . . No, but not . . . Even, like, a news article might say, "Oh, new research says drinking five cups of coffee a day will prevent you from getting cancer," when, you know, if you have the tools and the privilege to be able to read that study, you'll find out that it was, like, only five people were studied and the chances of them not having cancer was maybe like 0.02%. Because it is so inaccessible right now, people rely on other sources, and it's sort of, like, this game of telephone. But, like, you were, Harjit, it can be different.

Harjit: You can't say that this person doesn't know. Obviously, they don't know if you don't tell them, right? I think it's really unfair to look at your patient and be like, "They won't understand this." You know, XYZ. We're conducting this research for people, and if people can't even understand it, what's the point?

Margaux: And something that I want to point out, too, that you said, don't look at your patient and say, "Oh, they can't understand it." I think that there are very, very few doctors that actually have that overt dialogue. It's an implicit bias that we're almost sort of . . .

Harjit: For sure.

Margaux: . . . educated and socialized. And so I think it's important to be aware of, like, the conversation you have with one patient and then, you might go into another room and know that that patient is actually a doctor themselves and understand how you change your conversation. And, like, obviously, you're going to change based on, like, having a rhetoric with them, but understand what information you withheld from that other patient that wasn't the doctor that you did give to that doctor. And so just being aware of your own implicit bias of what information you have the privilege to own and how you're sharing it.

And on a final note, too, I want to discuss that, while there are a lot of things we've learned in medical school, research, in and of itself, is fluid. We may learn something that we understand to be true right now, but then in, like, five, ten years, new research might actually uncover that it's very harmful and not the right thing to be doing.

Harjit: This is correct.

Margaux: And I think the initial reaction when you learn that something you know and have been practicing to be wrong is to get defensive and to resist it. And so I think it's super important to have a fluid understanding of, like, things change, and maybe you weren't doing the best thing, but now you know what it is. And to be open to saying . . .

Harjit: Changing your practice and . . .

Margaux: Changing your practice.

Harjit: . . . just changing your understanding of things.

Margaux: Admitting that you were wrong, and your understanding was not right.

Harjit: Yeah, and I think that's where intellectual humility comes in, right?

Margaux: Yes.

Harjit: And it's really important for us. I hope that everything we've discussed in this podcast, or even, specifically, this episode, people understand that it's our way of being more open and understanding that things are more complex than they seem at first stance. This is maybe a whole other podcast topic, but I think it's really important to understand that even social justice advocacy has kind of taken the shape and form for some people that kind of doesn't serve the people it was kind of created for in the first place. Does that make sense?

Bushra: Mm-hmm.

Harjit: So when we talk about these topics, I hope that we are all being critical but also to understand that we also can make mistakes.

Bushra: Yeah, there is room for mistake within each one of us and everybody else, for that matter. And so I think the most important thing and something that we try to kind of convey with our podcast is that everything should be up for a discussion. And I think that's how people garner trust with each other and how we actually learn to listen to each other. A lot of the times, I think my frustration is that it becomes kind of an arena for attacking people versus trying to understand people, and that's what we're trying to deconstruct a little bit.

Margaux: Exactly, Bushra. As our listeners, we encourage you to question us, to challenge us on anything we have said not only in this episode but in all of our episodes and share with us your own stories and perspectives and narratives on our Instagram page at bundleofhers or on Facebook at "Bundle of Hers" podcast. So until next time . . .

Harjit: Bye-bye.