Disparities in Lupus Care: Part 2 With Drs Alfred Kim, Ashira Blazer, and Jillian Rose-Smith

In part 2 of this podcast, Drs Alfred Kim, from the Washington University Lupus Clinic, and Drs Ashira Blazer and Jillian Rose-Smith, from the Hospital for Special Surgery, continue their discussion about the factors that create disparities in accessing care for lupus among patients due to race, sexual orientation or identity, socioeconomic status, and ethnicity.

For part 1 of this podcast, click here.

Alfred Kim, MD, is an assistant professor of medicine at Washington University School of Medicine in St Louis, Missouri, where he founded and codirects the Lupus Clinic. Ashira Blazer, MD, is an assistant attending physician and assistant professor of medicine at Weil Cornell Medical College and the Hospital for Special Surgery. Jillian Rose-Smith, PhD, MPH, is director of Community Engagement, Diversity & Research at the Hospital for Special Surgery.

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TRANSCRIPT:

Speaker 1:
Welcome to part two of this podcast on health disparities among patients with lupus with doctors Alfred Kim of Washington University and Doctors Ashira Blazer and Jillian Rose-Smith from the Hospital for Special Surgery in New York.

Dr. Alfred Kim:
So I think this is a good point to segue into what Dr. Rose-Smith brought up earlier, this critical point of the reversible nature of these, and Dr. Blazer, you brought up this really important point that we need to be asking questions about ourselves, about questions to our patients that honors their needs and their backgrounds. I guess ways to help facilitate that, starting today, as we continue to build our understanding of what the origins of disparities are for our patients and how to better narrow them in order to then come up with more specific solutions. I guess for the average provider that's out there that may not be thinking about this on a daily basis, what should they be doing in order to be able to build that type of bridge that allows them to better understand their patients' experiences?

Dr. Ashira Blazer:
I think reframing the conversation around disparities in social inequality rather than biology. I think our cardiology colleagues do a really good job of understanding how social determinants of health influence their disease pathogenesis. They think, "Okay, well if you live in a food desert, you're not eating well, you're smoking, you have higher stress. All these things are going to influence your cardiovascular risk or your blood pressure."

I think in autoimmunity and particularly lupus, when we see differences across race, the first thing we say is, "Oh, what's the biology? What cell populations are different? What genetics are different?" And I think that that kind of thinking has a place, but when we're talking about healthcare disparities, it negates the obvious, which is that social inequalities are driving differences across races.

And so I think that we as rheumatologists as a whole need to start thinking how is racism producing this difference rather than how is some other molecular mechanism producing this difference, and I think with eyes open, we have more opportunities to make changes because we're thinking of solutions that can actually affect the root cause.

Dr. Alfred Kim:
Yes, I think that's a wonderful way of looking at it. And I know, Dr. Rose-Smith, your work really has focused on that macro level, even on neighborhood level type of ways able to disseminate, implement these type of solutions. I guess from your perspective, what needs to happen in order to better facilitate these type of actions that Dr. Blazer has talked about?

Dr. Jillian Rose-Smith:
Absolutely. So I'll talk about a couple of things. We've implemented a couple of national and international programs for people with lupus and their loved ones: Charla de Lupus, LupusLine, and Lupus Asian Network, the LANtern program. Those programs are focused on providing support and education to our patients by using a peer health education model. So we ask lupus patients what's important to them in places where they live, work and play that will help them to better manage their illness and how would they like to bring us into that space? Again, it's about that, "How can we partner with you to help to optimize your care?"

It's all good and well when we sit in the exam room and we see our patients and we have that 10 to 15 minute appointment and we make the best recommendation, we prescribe the best medicines, the best biologics, and then it falls apart because my pharmacy doesn't open until nine o'clock when I go to work at 5:00 and it closes at four o'clock when I come home at 6:00.
And so I encourage our clinicians to make their patients their partner, and people always ask me, "How can I assess social determinants of health? I'm so busy." In healthcare, we're seeing patients and we're expected to do more, but there's some simple questions that people can ask, and this doesn't have to be cumbersome or what some might think of this is an additional burden for me.

I think asking questions in, for example, people have different goals and concerns. "As you think about your options, what's important to you for your care?" And that leads to a conversation about what choices that person would make. "Do you want to think about this decision with anyone else? Someone might be affected by this decision in your household. Do you have a partner, a spouse, a child who I should be sharing this information with?" So that you can build caregiver capacity, and really, that allows for better adherence with patients if they have a partner, if they have someone else who's holding them accountable for their treatment plan.

You can say something like, "Sometimes things in medicine aren't as clear as most people think. Let's work together so that we can come up with the decision that's right for you." Again, that helps to invite the patient. "I see you've been late to the last three appointments. Is there anything else that we should look at in terms of changing, has something changed for you, and how can we accommodate that change? Should you get a earlier or later appointment?"

I think all those questions really allow you to bring the patients' actual lives into the exam room and do things that are in your control to help to support the patient and where they actually live, work, and play and how they can be engaged in their medical care instead of having the patient walk away and say, "Yes, yes, yes, I can do everything," when they face many barriers.
Additionally, I think it's important for us to practice from a place where a lot of people say, "Well, I don't see color," and color blindness really leads to greater discrimination, racism and bias. And so being able to educate yourself about the origins of these issues and coming to the medical space and the care space armed with that information, I think it's invaluable.

I think additionally, looking at opportunities to collect information. This is a soapbox that I'm on, and I think it's important for people to collect gender identity information, sexual orientation information, and the pronouns that people use. We know that we live in a world with a gender diverse population, and being able to dignify them by referring to them with their name and their pronouns is incredibly important, especially for a minority cross-section of people who identify as gender diverse and experience additional prejudices, discrimination, and racism throughout their healthcare encounters.

And lastly, I would say, and I would encourage, partnering with our communities. I think something that has gone away from medical care is seeing more of our clinicians as normal people. I think when a clinician shows up to a community center meeting or they show up to a community event or they may chaperone something at a high school, when they're able to show up where people see you in that human space, they're able to better connect with you, and that connection builds trust equity. And that trust equity transfer into the opportunity for them to better listen to you, respect you and follow their treatment plan as you're recommending it because they not only see you as the physician, the talking head, but they see you as the person. They see you as the person who cares for community and who cares for them as people.

So we do hold a lot of power as clinicians in just showing up for our community and being visible. So those are a few things I recommend that I think are in the reach of our clinicians in helping to change and shift the culture of disparities as well.

Dr. Alfred Kim:
Well, I could hear the two of you just talk about this for hours, and we may need to do a part three as we continue to break down these topics because they're so broad, they're complex, and this is something that I think the listeners, they need to hear people talking about this and using a language that allows them to intelligently discuss disparities.

So just to recap what we discussed, disparities are certainly broad in origins, certainly rooted in privilege as Dr. Blazer had pointed out. It takes many, many different forms, including colorblindness that Dr. Rose-Smith had brought up. You both had brought up the issue about we really need to be more introspective. We need to be more empathic with our patients' experiences, build that trust equity, as Dr. Rose-Smith had brought, reframe how we ask questions about disparities with our patients. What's important to your care? Being able to help with participation in programs that allows for peer health education models, for example.

And then I think this point you brought up, Dr. Rose-Smith, about research participation, this force field of fears really a major, major issue. And being able to figure out ways to overcome that, not only just with broader funding sources and mechanisms, but also to be able to use what you had just discussed in order to get their experiences marked down onto the tablet and become actionable. So with that, if you both could just offer one final comment on this. I'll start with Dr. Blazer.

Dr. Ashira Blazer:
Yeah, I think my final comment is that we have to be able to bring the humanity back to medicine, and I think that's what this is all about, right? It's about understanding the totality of the patient, their experience, what they're bringing to the interaction, and how you can facilitate their care by also bringing your own humanity to the interaction.

Dr. Alfred Kim:
And Dr. Rose-Smith.

Dr. Jillian Rose-Smith:
Absolutely. I think it's important that we understand that our role in our patients' lives is to inspire the hope to live. We can do that or we can maximize the suffering of their reality. And I think we have a pivotal opportunity to shift the way that our patients experience life and their opportunities to be able to live and experience optimal healthcare, which is needed for all aspects of everything that we want to do. No one passes up being cared for and having optimal healthcare, so I think we need to keep that as the centerpiece. We can actually be the linchpin in our patients' lives to provide them with hope for a future and for their families, and that's really at the core of what I like to think about when I practice.

Dr. Alfred Kim:
That's brilliant. So with that, I want to thank you for listening to this podcast on health disparities and their effects on patients with lupus. Again, my name's Dr. Al Kim and I again want to thank Dr. Blazer and Dr. Rose-Smith for this incredible discussion. I hope everyone has a great day. Take care.

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