Podcast: Why Diversity in Rheumatology Matters

Full Transcript:
Released 2/13/2024

PODCAST OPEN:            
You’re listening to the Live Yes! With Arthritis podcast, created by the Arthritis Foundation to help people with arthritis — and the people who love them — live their best lives. If you’re dealing with chronic pain, this podcast is for you. You may have arthritis, but it doesn’t have you. Here, learn how you can take control of arthritis with tips and ideas from our hosts and guest experts. 

MUSIC BRIDGE 

Stephanie Rosado, MSW, CWHC: 
Hello. welcome to the Live Yes! With Arthritis podcast. I'm Stephanie Rosado, and I'll be your guest host for this episode. Today we're talking about diversity among rheumatologists, including what that means, but more importantly, how it affects health outcomes for patients with arthritis. 

I'm a social work researcher and osteoarthritis warrior. I was diagnosed with osteoarthritis, or OA, in young adulthood, and I've been living with it for well over a decade now. I'm currently a PhD candidate at the University of South Florida School of Social Work and a research and evaluation associate for the Foundation for a Healthy St. Petersburg here in sunny Southern Florida. These roles afford me the opportunity of blending my passions for research, health and wellness, and advocating for equity for marginalized populations. Since 2021, I've been involved with the Arthritis Foundation in various capacities, including being a guest on one of last year's episodes of this podcast, which was titled, “How to Make Yourself Heard.” I'm excited to be back on this show, as a host this time, and engaging with our guest expert on diversity among rheumatologists. 

Black Americans, Hispanic Americans and other people of color in the United States are less likely to get timely, effective health care and more likely to have poorer health outcomes than white Americans. Many Black Americans especially distrust the health care system due to a history of negligence and mistreatment. And while the number of Black, Hispanic and other arthritis patients is growing, most rheumatologists, doctors who specialize in arthritis, are white. 

In this episode of the Live Yes! With Arthritis podcast, we will discuss the disparity in health care in the U.S., especially as it relates to arthritis; why it's important to build and nurture more diverse rheumatology networks; how patients and physicians can benefit; and what is being done to fill this gap by the Arthritis Foundation and other organizations. Joining us for this discussion is Dr. Angela Chun. Dr. Chun, welcome to the podcast. Can you tell us about yourself and your background? 

Angela C. Chun, MD: 
Hi, Stephanie. Thank you so much for having me on this episode. I'm a pediatric rheumatologist working in Chicago, Illinois. Before I fell into the world of rheumatology, I spent almost a decade within the realm of global health. And after my experiences abroad, I wanted to bring these skills home to advocate for pediatric rheumatology, which as we know is a small field that's not well understood, and consequently, in my opinion, underrepresented, underfunded and under-served. 

My experiences abroad also really opened my eyes to the fact that education really is one of the most sustainable forms of patient advocacy. So, during my pediatric rheumatology fellowship, I pursued my Master’s of Education degree because I'm passionate about creating educational tools to not only help other health care providers understand rheumatic diseases, but also to help patients and patient families better understand our complex diseases. 

Along with my co-PI (principal investigator), Dr. Andrea Ramirez, I was awarded the Arthritis Foundation Curriculum Development Solutions to Growing the Diversity in the Rheumatology Workforce Grant, which is a mouthful. We are so grateful for the support from the Arthritis Foundation. 

Stephanie Rosado, MSW, CWHC: 
Awesome. That is a wide variety of valuable experience and expertise that you bring. When we say diversity in the context of rheumatologists or rheumatology, what exactly are we talking about here? 

Angela C. Chun, MD: 
I think that as we have more thoughtful conversations about diversity, the more ways we're able to define it. So, diversity has historically been defined by characteristics that we can translate into checkboxes on forms, like biological sex, gender identity, race, ethnicity, age, level of education, religious affiliation. But I don't think a person is defined by the sum of these parts. It's much more complex when you look at it through the lens of society and how we use those identifiers to feel more like the sum and more different from others. 

Overall, I think that diversity represents the different viewpoints and ideas that we bring to a group based on our own experiences, which may be shaped by the labels given to us by society. So, when we translate that into the context of the health care system, diversity means having a workforce that represents as many different combinations of identifiers as possible so that patients can find ways to relate to their rheumatologists, both inside and outside of the patient-physician relationship. 

I think that health care providers who are empathetic can build a therapeutic alliance with patients of any and every background. But I also think that patients just innately feel a stronger sense of trust when they have a physician who walks through the door and not only looks at them, but also looks like them, whether that be on the basis of race, ethnicity, sex, age or another identifier. 

Stephanie Rosado, MSW, CWHC: 
Wow. I so resonate with so much you said there, especially that idea of like not fitting into a box. I'm a Latina, and even when you think about how the census has changed, how they're talking about race and ethnicity, and that whole conversation that's going on right now, how do we include folks and make them feel comfortable with the “boxes” they have to check? You know, I identify as Latina: What do I check? Black? White? And those boxes can get a little muddy. Can you talk more about why these types of initiatives are so important to improving the rheumatology workforce and more about those benefits that come with it? 

Angela C. Chun, MD: 
Diversity, equity and inclusion: They're not interchangeable terms. And we really need to shine the light on all three when we're caring for our patients. Diversity refers to having different voices within a group. Inclusion means handing the microphone to both those who want it and those who need it. And equity means increasing the volume of the mic for the voices who need it the most due to inherent disadvantages. So, when all of these values are upheld, I do think that all patients benefit, which is why there's been increased funding to create pipelines for health care providers who are interested in rheumatology and may be underrepresented within the field of medicine. 

Because, especially on the pediatric side, these mentorship opportunities are critical. The American College of Rheumatology, or the ACR, they published an article this past July that said that currently there are only about 350 pediatric rheumatologists practicing in the United States. But there's approximately 300,000 children in the United States living with some form of juvenile arthritis. 

Stephanie Rosado, MSW, CWHC: 
Wow. 

Angela C. Chun, MD: 
We not only want to recruit others into our field, but we also want to inspire the next generation rheumatologists to not only provide excellent clinical care, but also to be cognizant and proactive about health equity within our field. So, there's also been a lot of initiatives to fund research dedicated to really identifying patient issues related to DEI and for initiatives dedicated to creative solutions. Working towards health equity in society really requires that every aspect of society is involved in order to address these inequalities between social groups. 

Our physical health is impacted by our genetics, but also it's impacted by our mental health, our environment, our access to clean water, access to fresh groceries, safe green space for physical activity, access to education, transportation, access to health care. But also even our trust in health care and how our perceptions might be colored by our own cultural or spiritual beliefs. So, we have to take all of these factors into account when caring for patients. And we also need to take all of these factors into account when we try to analyze the health outcomes. 

Just to kind of give an example: Let's say that I have a pediatric patient who starts to no-show for appointments with me in clinic, and our nurses aren't able to reach the parents on the phone to ask them why. On the medical chart, they might be labeled as kind of “non-compliant,” or the patient might be labeled as “loss of follow-up.” 

It's really important to be cognizant of what your words actually mean, right? Because every subsequent health care provider who reads those words in the medical chart, they might form a bias, whether it's implicit or explicit, and that's going to color every future interaction with this patient's family. So, you know, the cynical interpretation of it might be, “Well, they don't care enough about their child's health to take action, so why should I?” 

But there's a lot of things behind the scenes, right? Maybe the parents didn't understand the therapy plan at the end of our visit because there's a language barrier. Or maybe I just used a bunch of medical jargon that's hard to understand if you don't have a medical background. Or maybe they can't afford the medications that I prescribed or the labs that I ordered, and they're embarrassed to say. Or maybe they just didn't think it was worth bringing up because they don't think that anyone can actually assist them with medical costs. 

Maybe they don't have access to reliable transportation. Maybe they're not picking up the phone when my nurses call because they're working all day, right? And they have a job where they're not allowed to use their cell phone, or maybe they don't even have a cell phone. And then maybe they also just didn't trust me as a provider, or they felt that there's some disconnect in the way that I listened to their problems. There are so many things behind the scenes that can be at play, but all of those nuances get lost as soon as I type the words “non-compliant.” 

So, that's really to say that, on top of kind of everything that we've discussed about social justice and health equity, I really want to emphasize that words matter, and two-way conversations matter. And having a therapeutic alliance matters between the patient and the physician. 

Stephanie Rosado, MSW, CWHC: 
Yeah, that was so powerful. And you're right, words do matter. 

PROMO: 
Over the past seven decades, the Arthritis Foundation has invested over $500 million into scientific research, advancing arthritis treatments while pursuing a cure. Progress is being made every day, thanks to the contributions of people like you. Learn more about our research initiatives at arthritis.org/science. 

Stephanie Rosado, MSW, CWHC: 
What does the research tell us about diversity in rheumatology? 

Angela C. Chun, MD: 
I would say really over the past like 15 years, it started in the adult rheumatology literature, and it's really starting to pick up within the pediatric rheumatology literature. But looking at the adult side, there have been a growing number of publications that do report worse outcomes for patients of color, particularly in rheumatoid arthritis and lupus. And when researchers try to kind of analyze the data based on race, ethnicity and socioeconomic status, the take-home points seem to be largely, one: Historically, research in large clinical trials have kind of predominantly focused on Caucasian populations, which makes it hard to extrapolate that data when you're caring for racial minority patients. And this may be because historically marginalized people and groups may feel mistrust towards medical research. But it also may be because large trials tend to occur at large academic medical centers, right? Which may not be equally accessible to all populations. 

So, currently there's a huge push from the medical community to really be mindful and increase the diversity of patients included in research, because this is really critical to provide evidence-based medicine for all of our patients. And then secondly: The evidence is mounting that the differences in medical outcomes observed between racial groups can be attributed to non-biological factors. 

There's a ton of research going into better understanding what social factors are playing, in effect, and how we can try to level that field for our patients. So, in autoimmune diseases, we know that a longer time to diagnosis can lead to increased risk for both morbidity and mortality. A lot of my own patients, they kind of describe very long, arduous medical journeys of kind of being bounced from ER to ER, or a subspecialist to subspecialist before they really finally make their way to rheumatology. And that's probably multifactorial. 

Most medical professionals don't receive extensive rheumatology training in medical school or residency. Rheumatic diseases may not be on the top of a general practitioner's list just because they haven't had a lot of exposure or experience. Or maybe there just isn't a local rheumatologist who's available to see them. When I trained in Texas, I would sometimes have patients travel over 10 hours to see me in clinic just because there was no other pediatric rheumatologist closer to home. But we do know that there may be other factors kind of specific to race and ethnicity that also are coming into play. 

Stephanie Rosado, MSW, CWHC: 
Dr. Chun, can you please just share with us some personal anecdotes from your rheumatology experience about diversity in the workforce? 
 
Angela C. Chun, MD: 
When I was in fellowship, I distinctly remember that one time I was talking to another doctor in the emergency room, and they're telling me about this patient that was in the ER, and they're kind of going over their physical exam over the phone. And I remember that they said that they saw a rash on this child's hands. The location made them think of a rheumatic rash. But they specifically said, “It doesn't really look like the red rash that I really learned about in pictures in medical school.” And that was really striking to me. 

Because ultimately, when I did see that kid, they did have that autoimmune rash. So, to me, that showed that there's a disconnect between what we're learning in medical school and what we're seeing kind of every day in the diversity of our patients. When I looked into the literature, it showed that almost the majority of images included in medical texts, they predominantly feature rashes in Caucasian patients. 73% of rashes were featured on very light skin tone. 

And then there was another study that looked at over 1,400 images of lupus rashes in medical sources published between 2014 and 2019. And they found that 56% of these rashes were on very light skin tone. But we know that these visual diagnoses, they look different in darker complexions, right? And so, providers must feel comfortable and confident in recognizing these nuances so that we can make timely diagnoses for all of our patients. And we're being very purposeful in including photos of how these physical exam findings will look different in children of all races and ethnicities, to really kind of highlight the fact that it's going to look different based on the patients' complexions. 

Stephanie Rosado, MSW, CWHC: 
Yeah. What really stood out to me: There are a variety of social determinants that may affect outcomes for rheumatology patients. But even more than that, what kind of education is being provided to rheumatology professionals and it not being equitable enough for rheumatologists to provide that equitable care? 

We say health equity and outcomes, but let's trace it back. And what's causing that inequity? If someone is not being taught enough about a particular higher melanin content in the skin and what that rash looks like, or how they can identify it, then how could they diagnose it? You know? So, there's a lot to uncover and peel back there and why that's a systemic issue in health care. 

How specifically does a more diverse rheumatology workforce improve patient outcomes, especially among those under-served populations? And what does diversity look like among rheumatologists historically? 

Angela C. Chun, MD: 
It all goes back to being able to have a better patient-physician relationship, right? And kind of really being able to understand where somebody's coming from. During this past year's American College of Rheumatology national conference (ACR Convergence), I do remember an education initiative that provided rheumatoid arthritis training for local providers in the Navajo Nation. And what the project leaders found was that — when patients with rheumatoid arthritis were asked if they would rather be cared for an expert in rheumatoid arthritis who was outside of their community, versus by a primary care physician within their community — the resounding answer that they got was that they wanted to stay within the community. 

So, I think that speaks volumes to the inherent trust a patient can feel for a physician, that they are able to identify similarities, too. Which again points to the importance of kind of increasing diversity within our workforce to match the diversity of our patients. In terms of your second question of: Historically, what has the diversity among rheumatologists looked like? Historically, the medical field in general has been dominated by Caucasian men. Only a small fraction of the physician workforce are not white. 17% identified as Asian, 5.8% as Hispanic and only 5% as Black or African American. 

PROMO: 
Whenever you need help, the Arthritis Foundation’s Helpline is here for you. Whether it’s about insurance coverage, a provider you need help from or something else, get in touch with us by phone toll-free at 800-283-7800. Or send us a message at arthritis.org/helpline. 

Stephanie Rosado, MSW, CWHC: 
You have to diversify everywhere in order to really increase equity and diversity. You alluded to some initiatives and funding opportunities and research opportunities in the beginning of this episode that really aim to improve diversity in the rheumatology workforce and health care. Do you know of any other initiatives or programming that is being undertaken or being carried out? 

Angela C. Chun, MD: 
The Arthritis Foundation itself has a lot of funding dedicated towards a lot of different DEI initiatives. We need to build these pipelines early on to recruit a more diverse workforce, right? I would say the majority of pediatric rheumatologists became a rheumatologist either because they themselves have an autoimmune disease, or somebody in their family has an autoimmune disease, or they just happened to have a chance encounter with rheumatology. And then, if they hadn't been exposed to rheumatology early on, it wouldn't be on their radar at all to consider for a career. 

Kind of building off of that idea, the Arthritis Foundation is funding a variety of programs that are really trying to reach out to these underrepresented in medicine kind of candidates. Whether it's in residency or medical school, to help fund and provide these opportunities not only to work clinically in a hospital, but also to kind of form that kind of personal mentorship with a rheumatologist to really see what it's like to be in the field. And hopefully, we're able to recruit a more diverse workforce in the future. 

And then with our own grant, Dr. Ramirez and I are doing the same thing for pediatrics. We are opening it up to medical students and pediatrics and med peds residents all across the country who identify as underrepresented in medicine, defined by the NIH. The opportunity to come rotate with a large institution that has pediatric rheumatology so that you can kind of get your feet wet and know early on if that's a career that you might be interested in. 

Stephanie Rosado, MSW, CWHC: 
Wow, those sound like some really great opportunities for underrepresented groups. Is there anything patients can do to help move the needle in the right direction to diversify rheumatology care? 

Angela C. Chun, MD: 
I think it all comes down to educate and advocate, right? So, as a patient, you should educate yourself and ask questions to your provider. If you don't understand medical jargon, then you should ask them to explain it in a different way. And then you should always ask for an interpreter if English is not your native language. The more that you can educate yourself about your own health, the more effective of an advocate you're going to be, both on a personal level, but also looking kind of at your community. So, I also think it's really important for patients to join local advocacy groups. 

Stephanie Rosado, MSW, CWHC: 
Dr. Chun, before each episode, we post a question on social media. For this particular episode, we asked: “How has the diversity or lack of diversity among your health care providers affected you and your health outcomes?” And we're going to go through a couple of responses that we got and kind of reflect on those. Sound good? 

Angela C. Chun, MD: 
Yep. 

Stephanie Rosado, MSW, CWHC: 
All right. So, the first one: “All my doctors are either Black or Hispanic. Most people of color are marginalized when it comes to receiving adequate health care, being heard and taken seriously. Doctors are taught to dismiss the pain of Black people, especially Black women.” 

Angela C. Chun, MD: 
When I was in medical school, there was dedicated training towards implicit bias, right? Because I don't think any physician is mindfully saying, “Oh, I don’t believe you.” Or “Oh, I don’t want to give you pain medications because I don’t believe your level of pain.” But maybe there is something implicit in terms of how receptive we are to what our patients are telling us, and how seriously we take those comments. 

Stephanie Rosado, MSW, CWHC: 
The next comment we see here is from Butterfly Warrior. "Thank you for attempting to address such a touchy topic. Despite the lack of support and understanding that I expected, I still feel seen and heard for a change." 

Angela C. Chun, MD:  
Just having these conversations are important, right? I think it's hard to come up with immediate solutions to these problems that we're identifying. But the more we talk about it and the more voices and perspectives that we bring into it, the more helpful of a conversation I think it is. Not only for potentially finding solutions, but also just making sure that our patients feel seen and heard.  

Stephanie Rosado, MSW, CWHC: 
Thank you. The next comment I have here is from Tessa. "I have found that female doctors have a lot more sympathy and understanding of pain level than male doctors do. On more than one occasion, I've had to ‘prove’ my level of pain by diving into my medical history to be taken seriously. The only exception to this has been my primary care doctor, who suggested to me that I have fibromyalgia." 

Angela C. Chun, MD: 
Tessa, I'm really sorry to hear that you've had that experience. Nobody should ever have to prove that they're in pain. And no one should have to prove that their perception of pain is as bad as somebody else's perception of pain. When you have a better relationship with your physician, and that is based on trust built from different connections and similarities, I think that will benefit everyone. If there's a miscommunication or a misunderstanding, and you feel like, ultimately, you might have a better relationship with somebody else, then find another doctor who will listen to what you're saying and advocate for what you're saying. 

Stephanie Rosado, MSW, CWHC: 
Dr. Chun, I think you hit the nail on the head with that. The health care system and providers should be our biggest advocates, right? I've had to change providers myself when I wasn't feeling heard or seen as an arthritis warrior. 

PROMO: 
Your voice matters. You have the power to make arthritis a higher priority in American health care. Influence state and federal policies, health care laws and research funding … and bring arthritis out of the shadows. Go to arthritis.org/advocate and sign up. 

Stephanie Rosado, MSW, CWHC: 
Dr. Chun, we like to end each podcast with the top three takeaways from the episode. So, what are your top three takeaways from today's discussion? 

Angela C. Chun, MD: 
I think first and foremost, diversity and representation matters. Whether that is from the doctor that walks into your clinic visit, to the patients included in clinical trials, to the images included in medical textbooks, and even to the faces we look up to in medical leadership. All of those impact patient care. I think my second takeaway point is: I still stand by my own passionate belief that education is one of the most important forms of patient advocacy. And then lastly, kind of what we just talked about when we're touching on Tessa's topic: Patients should advocate for themselves. You should always feel like you're having a two-way conversation with your health care provider. You should feel empowered to ask to switch to a different provider, right? No hard feelings. 

Stephanie Rosado, MSW, CWHC: 
I think my takeaways are that we still have a lot of work to do in health equity in terms of arthritis and rheumatology. So, that's one. Number two is that social determinants of health can look very different for a variety of groups, and we have to take each individual as they come in order to address and care for particular patients for the current situation that they're in. And then third, that self-advocacy piece. Take your wellness and your health care into your own hands, and don't let the trajectory of your health and your happiness and your well-being land in the hands of someone else. If it's not working, advocate for yourself. And like you said, Dr. Chun, no hard feelings, right? I'm just doing what's best for me or my family or my loved one. 

Dr. Chun, I just want to say thank you for joining us on the podcast episode today, sharing your expertise in the field of rheumatology and what diversity means in this field. And we'd also like to thank our listeners and our audience on social media who provided insightful comments for this show. 
 
Angela C. Chun, MD: 
Thank you, Stephanie, for having me on the show and for having such an important conversation about topics that really impact every single one of our patients. 

PODCAST CLOSE: 
The Live Yes! With Arthritis podcast is independently produced by the Arthritis Foundation. This podcast aims to help people living with arthritis and chronic pain live their best life. People like you. For a transcript and show notes, go to arthritis.org/ podcast. Subscribe and rate us wherever you get your podcasts. And stay in touch!