Social Determinants of Health - Patient-Provider Relationships, Culture and Communication

Social Determinants of Health in Cancer Care

This episode was originally released June 9, 2021

In this Social Determinants of Health (SDOH) episode, Dr. Randy Vince (University of Michigan) moderates a talk with Dr. Robert Winn (VCU Massey Cancer Center) and technology innovator and cancer survivor, Sylvie Leotin (Equify Health) on solutions for rebuilding patient-provider trust and communications, with insights from the clinician and patient perspective.

TRANSCRIPT

LORI PIERCE: Hi. I'm Dr. Lori Pierce, president of the American Society of Clinical Oncology. Thank you for tuning in to this discussion on social determinants of health and their impact on cancer care. The purpose of this podcast is to educate and inform. It is not a substitute for medical care, and it is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experiences, and conclusions. These discussions should not be construed as an ASCO position or endorsement. For this series on social determinants of health, we invite guests with a wide range of views and perspectives. Some of these conversations may be provocative, and some even uncomfortable. But ASCO is committed to advancing equitable cancer care for all individuals, every patient, every day, everywhere. I have dedicated this vision to my term as ASCO president.

These conversations bring many voices to the table, voices that we need to hear in order to move forward and find solutions. We hope you learned new ways of thinking about these issues, and we invite you to join us in working toward a world in which every person with cancer, no matter where they live or what they look like, receives high-quality, equitable cancer care. Thank you.

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RANDY VINCE, JR.: Hello, and welcome to the sixth episode of the ASCO Social Determinants of Health series. I'm Dr. Randy Vince, Jr., a fellow of urologic oncology at the University of Michigan. Today, I'm joined by Dr. Robert Winn, the director of the Virginia Commonwealth University Massey Cancer Center, and Dr. Sylvie Leotin, who is a technology innovator, cancer survivor, and a recent recipient of a $750,000 Health Equity Innovation Award.

This series is part of a new initiative proposed by ASCO president Dr. Lori Pierce, focused on increasing oncologists' understanding of social determinants of health, its impact on patients, and modifiable risk factors for cancer, inspired by Dr. Pierce's presidential theme of equity, every patient, every day, everywhere. During the fifth episode of this series hosted by Dr. Smith-Graziani, there was a deep dive into the impact of structural racism on medicine, both historically and contemporarily.

As a country, we find ourselves at a point of inflection. Many citizens and health care providers are starting to grapple with the fact that both interpersonal and structural racism impacts various aspects of our daily lives. As health care providers, it is imperative that we understand this history and how this affects our patient-provider interactions. To build on episode five, we will discuss the importance of patient-provider relationships and eliminating cancer disparities.

So the first question goes to you, Dr. Winn. I know you have made community engagement an essential pillar at the Massey Cancer Center with the goal of reducing and ultimately eliminating cancer disparities. This initiative is a critical step. But many times when we discuss social determinants of health, we talk about factors outside of the health system. But I'm wondering if you can comment on how patient-provider communication influences cancer disparities.

ROBERT WINN: No, absolutely, and thank you for that. And I think that the work that's happening at the ASCO right now is just outstanding. I wanted to actually also go back to making sure that we don't conflate individual needs with social determinants of health, because there sometimes is muddying of individual needs with social determinants.

And I want to make sure that as we talk about it, and through the lens of social determinants, that we understand that that's built on structure. And part of that structure is the doctor-patient communication, but also the medical community's communication to communities, which is frequently very one direction.

And even when we talk about being patient centered, frequently we don't have the patient at the center of our discussions. It becomes almost this very colonial-like— but benevolent colonialism, right? It starts from a good place. But it becomes this very benevolent, colonial flavor to it where we're talking for people, we're talking at people, but we're not talking with folks, nor with communities.

And so I think that to keep my answers short, we are going to have to, as a health profession, have a little bit of grace and a little bit, just a touch more of humility to understand that where we have— although well meaning, and certainly we're armed with knowledge, but they are too in communities.

And I'll end with saying that while we also talk about our patient-centered approaches and communities as being illiterate— health delivery system illiterate or scientifically illiterate, they'll remind you that we are, too, illiterate. And so trying to talk at people in this unidirectional way will give us some results, but not the best results. And I think there's many more, much more productive results to come if we have a little bit more humility of making sure that we are not just engaging but involving community.

RANDY VINCE, JR.: So the next question I'll pose to you, Dr. Leotin. First, I'll say this. You have an impressive background that spans multiple disciplines. And so I have a two-part question for you. First, with your expertise as an innovator and your personal experience as a cancer survivor, I wonder if you can share your thoughts about what can be done broadly to improve cross-cultural patient-provider interactions.

And the second part of the question is, you were recently awarded a large grant to collaborate with Emory School of Medicine. Can you share some information about your project and the innovative solutions you're developing to help reduce cancer disparities?

SYLVIE LEOTIN: Thank you for your question, Dr. Vince. First, I would like to stress, [INAUDIBLE] the patient first, that cross-cultural patient-provider communication is worse than many health providers imagine. And this directly affects disparities. There was a recent study, as an example from Genentech, that showed that 50% of Black, Latinx, and LGBT patients have delayed or discontinued their care because they didn't feel understood by their providers.

So second, to answer your question, I agree with Dr. Winn, and I applaud your leadership in transforming community engagement. As you said, I think that it's also part of the solution. I think that another part of the solution is really improving patient-provider relationship inside the hospital. And I see that a lot of providers are not looking at this when, as a patient, I can tell you that it is really an essential component of reducing disparities. And I'm going to try to unpack that.

So we talk about trust, we talk about mistrust, and we talk about patients needing to trust the health care system. But we have to realize that trust is a two-sided process. And it's not incumbent upon the patient to trust the health care system if the health care system keeps perpetuating mistrust. So my position is really that providers need to step up.

As Dr. Vince was so eloquently saying, they need to step up to inspire trust. And more than inspire trust, they have to stop fueling and perpetuating mistrust in their day-to-day interactions with patients. So I think that the providers are not equipped today to build trust and have good relationships with cross-cultural or racially discordant patients. I don't see this taught in medical school, and I don't see it in continuing education today.

So people will tell me that now we are starting to see anti-bias trainings and why this is a positive thing. I do not think that these trainings are sufficient to really have an impact on the patient experience of Black and Brown patients. I think that we need something that is a lot more practical, a lot more pragmatic, experiential, and, as Dr. Winn was saying, patient centered to really transform cross-cultural patient-provider relationships, which leads me to my grant.

So I'm happy to share that I recently won a $750,000 Health Equity Innovation Grant from Genentech in collaboration with Emory School of Medicine. And the grant is going to fund some research with Black patients and oncology providers at Emory Winship Cancer center, but also at the Grady Hospital in Atlanta. And we are also going to pilot an innovative training, which I designed, which is going to help improve cross-cultural patient-provider communication.

This training is coming from my background as a multicultural cancer patient, but I also have 20 years of experience in innovation and in human-centered design. And before I got cancer, I developed a model that is really the underpinning innovation about this training that will really give providers an experiential understanding of what it's like to be a Black patient in the health care system. So I'm not going to take the whole time.

RANDY VINCE, JR.: No, that's amazing. That's amazing. Thank you. And I'm looking forward to seeing the research that comes out of this and really provide some useful techniques for providers to implement in their daily interactions with patients. So I'm definitely going to be looking out for that, Dr. Leotin.

For my next question, I'm going to pose it first to you, Dr. Winn. And then, Dr. Leotin, you can weigh in on this as well. So we know that the history of structural and interpersonal racism can influence these patient-provider interactions. And so I wonder if you can provide thoughts on how, specifically, providers can establish a trusting relationship with their patients of color, given that this history we just discussed is so ingrained in so many of our daily interactions.

ROBERT WINN: Yeah, I think on the practical [INAUDIBLE] patience matters. And I mean that. So I think this is where, sometimes, well-meaning physicians get very frustrated, that they will say, well, I've been decent to you, and I've been pleasant to you, and I'm not getting your trust. Martin Luther King once said it best when he says, let's not get decency confused with equality.

And there is a level where just because you're decent, doesn't mean that you're building trust. Decency should be expected as a health profession. So I'm sometimes confused when people say, well, I've been nice, and I'm trying to be nicer. What does that mean? So it goes beyond just decency.

So trust is built up over time, number one. And I think I heard it once best from one of my mentors who says, trust is gained drop by drop by drop. But trust is lost, and when it's lost, it's lost in buckets. And I'll say that there's been reasons why we need to have more patience as health professions to understand that just because you've been good to someone for a year or two years, doesn't gain their trust. It may actually gain you some decency back, but that's not the same as trust.

So I'm going to say that people want me to give them a protocol because, as academics, everything is protocolized, right? And they want me to give them a protocol for, how do I build trust? And I'm going to tell you the following, that your mom and your grandmother probably taught you this a way long time ago.

Be nice. Have grace, have humility, and patience. Show up and show out every time. And do it whether there's— whether you feel that there's being trust built or not. Do it anyways. And if you do it anyways just because it's the right thing, over time you'll get people and communities' trust.

RANDY VINCE, JR.: Dr. Leotin, your thoughts?

SYLVIE LEOTIN: So I really love this answer. I would like to add my perspective because in the training that I'm developing, and I will be piloting at Emory University, we are addressing some of this from a different vantage point. I'm a patient. I'm an innovator. I'm not an MD, so I think differently.

And my belief is that in addition to what you were describing, Dr. Winn, there is an element of empathy and cross-cultural empathy that is often missing. And this is not about the health care industry. This is our society at large. And I think this is happening because we have a hard time taking the perspective of someone else without projecting our own projections, filters, biased assumptions on top of them and thinking, oh, this is what I would do if I were them, instead of really what it's like to be someone else.

And I love this quote from Harper Lee that said, you never really understand a person until you consider things from their point of view, until you crawl under their skin and walk around in it. So I developed a training to actually do this in a simulated environment. What I'm seeking to do is to give this really groundbreaking perspective to providers on what it is like.

What does it feel like at the visceral level to be a Black patient in health care undergoing and constantly facing biased interaction? And I think that until we really understand what it's like, it's hard for us to fix it, because racism and bias— they operate below the level of our consciousness, many times. And yes, I'll stop here. I'll say more later.

RANDY VINCE, JR.: Yeah, yeah, but I'd like to build on that a little bit. Because I know many of you have spoken prior to recording this podcast, and you said that in your interaction with many other Black oncology patients, there was often a feeling of being unheard or feeling dismissed by their providers.

We often talk— and Dr. Winn mentioned this earlier— about illiteracy when it comes to health care information. And often, people cite health insurance as a barrier to health equity. But we know that a lot of these disparities exist even in insured, educated patients. And so I wonder if you can share some thoughts on why you think this disparity exists, again, even when Black patients are insured and well educated, like yourself.

SYLVIE LEOTIN: Yes, I'm glad that we're making this point today. I personally interviewed several— many— Black patients with cancer. And I have to tell you that all those people had insurance. Many had great insurance. Many were educated. And they were still experiencing disparities in cancer care. And I would like to give you some concrete examples.

So there was a woman that I spoke to with stage II cancer. She stopped to take a hormone therapy drug because she didn't know what it was for, and the side effects were bothersome. The oncologist had not even explained what this drug was for, and he had been so disrespectful in their interaction that she never wanted to speak to him again. What happened a few years later is her cancer metastasized.

I spoke to another Black woman who complained of migraines and headaches for two years. The doctor dismissed her and said that, it must be stress. Your work is stressful. It became really bad, and one day she had a colleague at work who told her, did you get the blood test? So she went to get the blood test, and she found out that she had advanced melanoma spread to multiple spots in her body.

There was a Black woman that had, also, breast cancer, who was given a choice between a lumpectomy and a mastectomy. But she wasn't able to get the pros and cons from her surgeon, who was really rushing her to make a decision without information. She decided to take a mastectomy because she was thinking, oh, I'm going to be done faster, and I won't get to do chemo.

Well, after she got a mastectomy, she went to see a medical oncologist. And the medical oncologist ordered an Oncotype DX type test. And it turned out that she had to do chemo. So she was really mad at herself for not answering her question and rushing her into surgery. She felt that if she had been a white patient, she wouldn't have been treated that way.

Fast forward several months, she goes into chemo treatment, and she had many problems. She told me that they didn't want to give her a port for chemo. They said that she had good veins and she didn't need a port. She kept complaining, and nobody listened to her. Those are the stories that are happening. I had my fair share myself.

I'm an Ivy League-educated Black woman. I have four degrees. And I had an instance, I had a core breast biopsy. I was miserably butchered by a barbaric radiologist. He took so many, so many, an insane number of samples on me. And it was the equivalent of getting a lumpectomy without anesthesia. I had horrible post-surgery complications, and many other stories I will share in my book, which I'm finishing and should be published at the end of this year. But as you can see, it's not pretty.

RANDY VINCE, JR.: Yeah, thank you for sharing those experiences because these stories need to be told more because we can learn from them. And really, these stories constantly need to be promoted so we can make progress. So in closing, Dr. Winn, I'm going to post this last question to you. And I just wonder if you can provide your thoughts on how, collectively, a combination of better patient-provider interactions as well as community outreach can help reduce cancer and other health disparities.

ROBERT WINN: Yep, just quickly, I think, again, all data, great and small, is valued in my world. Why community? Because I think that the community— by being honest, by having the humility, by actually doing things differently, we'll be able to better serve our communities because they will give us some better information to help us literally refine our approaches and maybe even refine our questions.

The other thing I would actually add is that we have an obligation to not just— to really serve the community. It also means we should be thinking about, how do we actually have them not at the table but gainfully employed if we want to build trust?

So how do we do it? I think by totally, really engaging with the grace and humility that I know we're capable of, I think we will move the next 50 years— as we have the first 50 years as NCI-designated cancer centers, the next 50 years, I think, we'll do even better because we'll take the community along with us on the ride. As opposed to actually doing things to them, we'll start doing things with them.

RANDY VINCE, JR.: Absolutely. That was a great answer.

SYLVIE LEOTIN: Can I just add something?

RANDY VINCE, JR.: Sure, really quickly.

SYLVIE LEOTIN: Yes, I think that in addition to— in collaboration with talking to the community, I believe that the training that I'm building is going to equip doctors to be a lot more efficient in their conversation with communities. So it's both inside and outside the hospital.

RANDY VINCE, JR.: Great. Thank you. So this conversation has been incredibly enlightening. I want to thank both Dr. Winn and Dr. Leotin for being with us today. So as we conclude, I think it's important to say that while conversations like this are vital to impacting change, words alone won't bring about a kind of change that's needed. So it's of the utmost importance that we all back our words with actions and really engage the community and engage with our patients.

So I want to thank everyone for joining us on this episode of the ASCO Social Determinants of Health series. To keep up with the latest episodes, please click Subscribe below. Let us know what you think about the series by leaving a review or emailing us at [e-mail]. That's all one word. And again, it's [e-mail]. Also, to access any sources mentioned on the show or to read on Dr. Leotin's recent grant and her company, Equify Health, please check out the show resources.

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LORI PIERCE: Thank you for listening to this week's episode of the ASCO e-learning weekly podcast. To make us part of your weekly routine, click Subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive e-learning center at elearning.asco.org.