Transcription:
Disrupting Cancer Health Disparities

Dr. John Leonard (Host): Welcome to Weill Cornell Medicine CancerCast, conversations about new developments in medicine, cancer care and research. I'm your host, Dr. John Leonard and today on the podcast, we will be discussing disparities in cancer care and in minority health and looking at what we can do as a community to combat them.

Our guest for this episode is Dr. Erica Phillips, who's an Internal Medicine Physician at Weill Cornell Medicine and NewYork-Presbyterian Hospital. Dr. Phillips is particularly interested in efforts to improve community and minority health. She currently serves as Associate Director of Community Outreach and Engagement at the Sandra and Edward Meyer Cancer Center, as well as Co-Associate Director of Community Engagement at the Cornell Center for Health Equity. Today, I'm looking forward to focusing our conversation on cancer care disparities.

Dr. Phillips, it's great to have you here today. I know we've collaborated on a few projects and I've learned a lot from you, so it's great to have you here, so our audience can learn a bit more about this important area and your work in this field. So thanks for joining us.

Erica Phillips, MD (Guest): Thank you Dr. Leonard, and I'm very excited to be here and to talk about a topic that I've been passionate about as it relates to healthcare disparities for some time.

(Host): So that's a great introduction. How did you get involved in working in this area? This is an area of medicine that is getting greater attention, but still needs more attention and work. And you've been really one of the pioneers at our center and even nationally in this area. So what drew you to this particular focus for your career activities?

Dr. Phillips: What brought me to Cornell actually was a Health Services Research Fellowship, we have had here for many years a master's in Clinical Epidemiology and Health Services Research. And for as far as I can remember, as a young child, when I knew that I wanted to become a doctor, I knew that I wanted to do more than just take care of patients on an individual level.

I had always thought about, how do you change communities? And I think, maybe naively then, I thought the way that you change communities and you improve the health of communities was through healthcare, what better way to do that than being a doctor? As time went on, I realized that that wasn't exactly true. Physicians are just one small piece of the puzzle, and it's why I needed to pursue further training as it related to understanding populations and how to intervene as it relates to healthcare services.

I still remember the day sitting in a conference room here at Weill Cornell, listening to a presentation by David Vlahov, someone well known in the field, as it relates to community engaged research. And at that time, a lot of his work was embedded in infectious diseases, in particular HIV, which at a time, was at the peak. And I sat there listening to his presentation and recognized I had finally found that person that was doing exactly the type of work that I wanted to do and then had the opportunity to be mentored by him, a few years later, doing work in Harlem at the New York Academy of Medicine where I found the field that I wanted to be in, which was learning how to do research from a community engaged perspective.

(Host): It seems like over the past several years, there's been an increasing focus on community outreach, minority health. Clearly there's much more work to do, lots of problems still to solve, but it seems like there's been a lot more attention to this area. Are people just coming to learn the importance of healthcare disparities in outcomes for patients? Or why do you think the community is paying so much more attention to this area?

Dr. Phillips: I don't think there's one simple answer. Over the years, you can't keep doing things the same way and expecting different results and what I've seen over the last two years is that narrative has changed significantly, because the general public witnessed the significant difference in terms of who became critically ill and died from COVID. And then the general public witnessed the murder of George Floyd on TV. And I'll share a testimony that a patient of mine actually shared with me, when she was finally able to see me in person. She said, “Before this time, I never understood what you were doing with the rest of your time, Dr. Phillips,” when my assistant would tell her that I was in my research office and when she asked the type of research I did, she's like, “I didn't understand what health disparities research meant. Witnessing what's happened, due to the COVID pandemic and seeing that people were disproportionately impacted by COVID finally allowed me to understand what it is that you actually do and why it is that you spend so much time doing it.”

While it is not a new area. And not one that hasn't been studied by many for decades. I think what really has changed is a better understanding in the general public regarding how our communities overall and the social determinants really are far more important and bigger predictors of general wellness than anything that the healthcare system itself can do.

(Host): I agree. It seems like the COVID epidemic really brought many of these issues to the forefront, perhaps because everything became so severe and significant and came to a head so acutely for so many people, but particularly, those communities who have been suffering, and dealing with disparities for a long time. There have been, historically, disparities in many medical conditions as we look at diabetes, heart disease, but let's focus a bit on cancers. And maybe you could give us a little bit of an overview of what are some of the disparities in the United States among different communities with respect to cancer risk and cancer outcomes.

Dr. Phillips: At least within the United States, what's very much interesting is that we can look at various risk factors. And I think the most important of those risk factors is actually poverty. While many talk about cancer risk factors based on the social construct of race, race is really tied to people's incomes, access to education, access to where they live. It determines where someone lives in many cities and states. It determines where someone goes to school in most cities and states, determines where someone works in most cities and states and all of that really ties back to differences in wealth. And so while we probably have spent a lot of time in healthcare talking about differences based on race and calling race a risk factor, really the risk is tied to differences in wealth. Here in New York, neighborhoods that have the lowest incomes, often are neighborhoods that are more highly populated by those who would self-identify as being racial, ethnic minorities, or even immigrant groups and closely tied to that, is those are also the neighborhoods with the highest rates of often unfortunately the cancers that we can detect early.

So, more commonly we see higher rates of lung cancer, breast cancer, colon cancer, prostate cancer and cervical cancer in those populations, in spite of those being cancers that when detected early, we have relatively, good, effective treatments for them.

(Host): So from the standpoint of the issue of poverty and those cancers, does it come down to risk factors? Is it screening? Is it access to care? What are, some of the areas or the reasons that contribute to disparities and outcomes based on poverty and then all of the connected factors that you mentioned?

Dr. Phillips: I would say it's all of the above. Most recently in the last few years, our office has had a lot of great dialogue with communities that are highly impacted by cancer. And if I put it in their words, the top three reasons that are making it more difficult to find cancer early and increasing their risk, the first is finances. Finances from the perspective of taking time off from work, often from low-income jobs that don't afford you the ability to take time off to go to the doctor or to go to a screening test. For example, with colon cancer, most colonoscopies require that someone picks you up from that exam. So, now not only have you asked for the individual to take time off, you've also now impacted potentially their friend or family member who has to pick that person up from that appointment. So I'd say finances as it relates to its impact on work, but also finances as it relates to access to care. Copays, even for the working-class adult, has increased over the years. Many people are paying more for access to care than they ever did before for. So, our communities have told us that economic instability is the number one reason.

The second is low health literacy. Again, your income determines where it is that you go to school often and the education that you receive. Now, we know that health literacy is not necessarily tied to education, but exposure and knowledge and sharing of health information is. And so lower health literacy communities are not knowledgeable enough and don't have the language they need to have the types of conversations, that need to happen in order to gain access to cure, to ask for the right test and to be your own advocate.

And then the third, interestingly, is kind of twofold, but it has to do with the social fabric of communities that has really changed, in terms of increasing social isolation, less social support. For some communities it's very much taboo to talk about illness and to share information within families, as it relates to someone's risks or someone's history of cancer. If you don't know that your grandmother had colon cancer, how would you know that you're potentially at greater risk because it wasn't talked about in your family? But one other thing that community shared with us most recently is the experience of discrimination within the healthcare system in it of itself.

And so that last piece, that social and cultural context is pretty complex. And probably the one that we've heard more recently in our community dialogues, to play a significant role in gaining access to the early detection of cancer.

(Host): It sounds like one could think about this in two parts: the before one gets into the medical system or before the barriers that prevent someone from getting care. And then the barriers that occur once one is already connected and has a physician or a provider, but needs to navigate that. So how do we address the first part? I think that the medical system can do certain things better once someone comes to our clinic to support them through their journey with cancer. But what do you do about the issues that prevent someone from even getting to the clinic in the first place, either knowing that they need to be screened or that they're at risk or the social challenges?

Dr. Phillips: So I definitely agree that it is two separate aspects. There is the aspect once you're in the door and there's the aspect outside of the door. But I would say that as individuals working in healthcare, our advocacy hat is what really begins to address that first aspect, which is thinking and being more proactive and involved in programs that can address what's happening in more local communities, thinking and being more involved in policy, agenda items, in voting, in expressing, who we vote for and the programs that we vote for are important to changing the fabric of communities.

If we know that wealth and the difference in wealth as it relates to what allows communities to be less exposed to environmental risks, allows young children to have better access to education, how we vote as it relates to who we place in office, how we utilize our own dollars as it relates to buying power, all play into the health of a community.

And so I think there are ways as physicians, and those in healthcare being more engaged and involved in that process of thinking about those things. At least from much of the work that our office is doing, as it relates to community outreach and engagement, there's also ways of expanding the healthcare workforce, and the utilization of individuals who are lay health educators, lay health advisors.

There are many different names that these individuals are called, community health workers, patient navigators, but what uniformly ties them together is that these are individuals who are more intimately familiar with communities that are being impacted potentially by for example, increased rates of cancer because they themselves are from those communities.

They themselves have potentially experienced similar disparities as it relates to having a health issue, whether it be diagnosed or treated and therefore become a connector for individuals to the healthcare system. It's a workforce that a healthcare system, could easily benefit by expanding. And so those are ways to think about how to address these issues outside of the healthcare system, but also being able to create that pipeline into the healthcare system.

(Host): One of the things that I've learned from you in some of our collaboration is the importance of coming to the community and reaching people where they are, and really speaking with them in ways that resonate with their beliefs and their priorities. Can you talk a little bit about that aspect of the community outreach programs that you lead and what's been successful and perhaps what's less successful when one thinks about these strategies to connect with individuals in their communities?

Dr. Phillips: The most important aspect of community outreach and engagement is spending a lot of time listening, not acting. And that takes years of patience. And it takes years of building trust with particular, whether it be organizations, individuals, community leaders, however it is that you're defining community, obviously community is a very broad term. And so, I'll be more specific in terms of when I think about communities, as it relates to the cancer care that our institution is trying to deliver, we first had to identify where are there pockets within those neighborhoods that generally utilize the services of Weill Cornell and NewYork-Presbyterian? Who are the community leaders that are trusted in those communities? Who are the organizations that are doing work, as it relates to the most important factors that really help to determine health as it relates to housing and immigration and education and childcare, and beginning to sit and talk with those individuals about what they envision, what they see are truly the needs, but also the assets that are available as well as the barriers.

And I think that's where you first start. And that's where we've spent a lot of time beginning to try to gain that understanding before trying to act in any way, shape or form. I would say at this point, as I gave an example earlier, when we engaged in those dialogues the three barriers that many of the neighborhoods that we are working with identified as barriers to cancer care and its treatment, we've developed programming that revolves around that and is responsive to those three areas. I think that's the most important thing, which is being responsive to the voice of the community when they are telling you this is what the barriers are, and this is how we would actually solve it because they've also given us solutions. So it's building programming around the solutions that they have provided.

(Host): Let's talk a little bit about once patients are in the medical system, you alluded earlier to some of the challenges and frankly, some of the discrimination that occurs, in some situations. Tell us about some of the barriers once patients have found their way to a care provider, to a hospital, to a physician, that may make it even harder to get good care.

Dr. Phillips: There's no one easy answer. But the barriers that we've seen and that patients talk about, I think first and foremost is just navigating a very complex healthcare system. I think it's why patient navigators were developed in the first place. Harold Freeman, a breast surgeon at Harlem Hospital, recognized that Black women were dying of breast cancer at a much higher rate than other populations, in terms of their counterparts.

But what was happening was delays from when they entered the healthcare system, in terms of that first abnormal mammogram to when they actually ended up getting treated. And it was really in those early days of introduction of patient navigation that helped to close that gap to narrow the amount of time between the abnormal mammogram, to then having a biopsy, to then potentially having surgery, to then potentially having chemotherapy, and the multiple providers that you would have to see included in that care plan. And so we've made healthcare very complex with many different providers involved in the treatment of cancer.

The treatments of cancers have become more complex. While there are good things that have come out of that complexity in that people are living longer and cancer's more of a chronic disease in many cases now than it was before, the complexity of understanding the treatment algorithms for patients, especially someone who may be of a low health literacy is difficult.

And then the part about implicit biases that we all have, and how those play out in the interaction with patients, is important. In healthcare we tend to unfortunately sometimes use the word non-adherent to describe why a patient may or may not have shown up for an appointment or taken a medication as prescribed or, potentially follow through on a treatment plan.

And we use that word, not recognizing all of the other things that potentially have impacted the patient's ability to carry through with the plan. And so the first thing is to place it on the patient rather than to think about what are the obstacles that our healthcare system has put in place that doesn't allow that person to pursue the plan that we believe is going to be beneficial to them. I think it's a complex issue as it relates to communication in healthcare. I don't think we've gotten to a point where we have fully addressed or understood how complex communication is, especially in a city where it's not just communicating in English, it's communicating in multiple languages.

We are very diverse linguistically and culturally, as it relates to the patients that come into our doors, and that makes communicating a complex disease even more difficult.

(Host): I want to touch on the issue of clinical trials and the disparities that occur in participation in clinical trials, as far as access to clinical trials and potentially education around clinical trials. What is your sense? And I know part of your work, at the Meyer Cancer Center, is involved with trying to expand outreach and education in that regard.

Dr. Phillips: Clinical trials, we know, are critically important to helping to close the gap as it relates to differences in cancer outcomes. I do think that we, as a healthcare system, have often placed the greatest burden of the lower enrollment of those who self-identify as racial or ethnic minorities, or those who are of lower income on the patients.

However, I do think, hopefully, as more and more literature evolves, that there is a better understanding that low enrollment is not all on the burden of the patient, but again, really stems from a complex healthcare system that does not take into account all of the obstacles as it relates to enrollment on clinical trials.

While historically there have been mistreatments of certain race and ethnic groups as it relates to clinical research. Interestingly, if you were to ask the average adult currently, they could not tell you what the Tuskegee trials were about, what happened during that time. Many of our biases as it relates to healthcare providers is a concern about lack of trust around clinical trials, but that's one small piece. And a lot of it stems back to economic instability. Participating in a clinical trial may mean more appointments needed in terms of attending a center in order to be reevaluated as you're on that trial.

And so unless that trial is able to help financially support those additional appointments, that may not just be realistic for a patient. Cancer continues to be one of the most financially toxic health conditions as it relates to treatment for patients and financial toxicity in and of itself, the inability to really afford the care, and the fact that there are patients and adults throughout the United States who, literally because of their cancer care, go bankrupt; it is an area that is overlooked as it relates to the barrier, to the involvement of a diverse group of patients on clinical trials.

(Host): We've been working together with a program, that is supported by the Leukemia & Lymphoma Society and the Genentech Foundation. We call it BRIDGE. The umbrella term for this program is the Impact Program. Tell us a little bit about that program and also other initiatives that you've been leading in the Meyer Cancer Center. How are we in our programs, trying to address at least some of these issues for the communities that we serve?

Dr. Phillips: I'm glad that you brought up BRIDGE. BRIDGE is I think a perfect example of spending time listening to target neighborhoods in Brooklyn and Queens in which we are providing support to our regional hospitals, at New York Presbyterian Brooklyn Methodist and New York Presbyterian Queens, where first and foremost, we've added to the workforce by having patient navigators who are representative of the communities being serviced by those hospitals, who are getting more specialized education and treatment around clinical trials, something that not all navigators are trained on.

And so, training patient navigators in particular about how to have more open conversations from the very beginning about clinical research and its importance, especially in cancers, like blood cancers, where the treatment and even the diagnosis of blood cancer is something that's far less understood in communities because of their rarity, you tend to find an adult may have had a friend or colleague or a family member diagnosed with breast cancer or lung cancer or prostate cancer and so their networks have talked about it. You find far less people talking about blood cancers. And so the implementation of patient navigators has been very important in this area in terms of the treatment of blood cancers, but also the support provided by the Leukemia & Lymphoma Society and Genentech who have provided, financial support as part of their grant to help patients support transportation if they agree to participate in a clinical trial, provide them with childcare if need be, or whatever services and assistance that they need as it relates to gaining access to medications, that they may not be able to afford as part of the trial or after the clinical trial.

And so these are all things that we're actually measuring and following as we have the navigators track how the number of barriers that patients have and the number of barriers that needed to be overcome in order for them to participate in a clinical trial, but also how those direct funds in supporting them, potentially allow them to consider a trial, if it were something that they could not do prior to those discussions.

(Host): One of the more dramatic moments at the American Society of Hematology meetings last year was at the plenary session when there was a presentation on CAR T-cell therapy and how it's improving survival for patients with recurrent aggressive lymphoma. And, Dr. Ruemu Birhiray, who is a friend, who is a Black physician who lives in Indianapolis got up and asked the question how many people of color had participated in this study and was asking a bit about the demographics and the background.

And it was really a moment that kind of crystalized the fact that very few patients, from underrepresented backgrounds were in that particular trial, like many other trials, unfortunately, as you've alluded to. And, it really highlighted the fact that only some patients benefited from the trial, from having the opportunity to participate, but that as we interpret the trial, it's difficult to know how those findings translate to the broader population.

So it highlights the issue there and he's gone on to have some ideas about should trials have representatives and diversity champions that are reporting on the patient population and are contributing to efforts to make the population more diverse. It seems like those types of initiatives are certainly worthy of thought as well, in addition to some of the more practical aspects of things.

Dr. Phillips: Yeah, it's interesting that one of the things it would seem would need to change about how trials are conducted is that that trial was permitted to come to a full completion, with lack of diversity in the patient population and then, reported on those findings, after the trials had for the most part been completed. And so we've sort of done an injustice to the data, and never really interrogated it throughout the process. While it's not surprising that you will then see an improved survival from this treatment in the population that was engaged in the trial, in the first place, but we really have no ability to know, is it going to change the lives of those who, truly had probably from the beginning, a higher mortality rate than the very people who received the treatment in the first place.

(Host): Well, I want to thank you for a great discussion today. This is an exceedingly important topic and you're doing great work. It's great to collaborate with you. Any last bits of advice for either practitioners or patients, who are dealing with some of the issues we've talked about today, as far as trying to make things better in this regard and move things forward?

Dr. Phillips: I would say probably the one key point for patients in particular, and this was actually from a cancer survivor's voice, that was really important in terms of recognizing that the power of being able to ask questions, and to question treatment, and to really gain a better understanding of what are all of my options. I would say that currently one of the navigators on our team, has been instrumental in really helping patients navigate the decision process around cancer treatment. We are now at a time where many patients approach cancer as soon as they find out that they have cancer, if they don't act in that second, in that minute, their fear is delay and, and rightfully so, will potentially hasten a negative result. But it's also important to think about getting as many opinions from other health professionals in the field. This is not opinions necessarily by Googling. I'm not saying that. This is getting second and third opinions from other professionals who are experts in the area, to really ensure that you're making a decision about your treatment plan that is consistent with your values, first and foremost, but ensures that you have exhausted the understanding of what are all of your treatment options that are out there, inclusive of clinical trials. And unfortunately, many patients stop at that first decision of, well, this is the treatment that I've been told, and this is the treatment that I'm going to go with and never really have the opportunity to fully understand all of the various treatment options.

And so I would say that is an area that as a healthcare system, that we need to make patients feel more comfortable in that it's okay to get second and third opinions to be able to make a fully informed decision.

(Host): Well, thank you very much, Dr. Phillips. Great advice and great programs and projects that you're working on. Thanks for your work.

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We also encourage you to write to us at cancercast@med.cornell.edu with questions, comments, and topics you'd like to see us cover more in depth in the future. That's it for CancerCast, conversations about new developments in medicine, cancer care and research. I'm Dr. John Leonard. Thanks for tuning in.

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