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Racial and Socioeconomic Disparities in the CLL Community Oncology Setting With Ira Zackon, MD

At the recent 2023 American Society of Hematology (ASH) Annual Meeting, Oncology Data Advisor sat down with Ira Zackon, MD, a Senior Medical Director with Ontada, to discuss his abstract and presentation about racial and socioeconomic disparities experienced by patients in the chronic lymphocytic leukemia (CLL) community oncology and hematology setting, how to combat these disparities, and his team's next steps.  

Oncology Data Advisor: Thank you so much for your time today and being here with us. Would you like to begin with introducing yourself and your research interests?

Ira Zackon, MD: I'm Dr. Ira Zackon, and I'm a Senior Medical Director with Ontada, doing retrospective electronic health record (EHR)-sourced real-world research, and I'm also a Practicing Hematologist in upstate New York.

Oncology Data Advisor: Incredible. To start, would you like to give an overview of your abstract and presentation?

Dr. Zackon: Yes. So, we were focusing on chronic lymphocytic leukemia (CLL) patients and looking at retrospective real-world data, with a particular focus in these patients based on any differences—based on race or socioeconomic factors that could influence optimal outcomes in the community oncology settings. So, as I mentioned, the data is sourced in an electronic health record called iKnowMed. It's used across the US Oncology Network. US Oncology is the largest aggregated group of community-based oncology practices across the geographic regions of the United States, and we identified over 12,000 patients to use in this data.

This was during the period of 2015 through mid-2023, so an eight-year period approximately of data, and we chose that because that was the time we began to change the way we treat CLL—the introduction of Bruton tyrosine kinase (BTK) inhibitors in 2014, and then BCL-2 inhibitors, and anti-CD20 antibodies, more moving away from chemotherapy paradigms. So, we wanted to capture what's happening in this era of CLL therapy.

In those 12,000 patients, when we looked at Black versus White versus other, 91% of the patients were White, 5% were Black, and 4% other. This reasonably aligns with what we expect for CLL, but looking within the population, we noted that there were some significant differences. Black people with CLL were a little bit younger on mean age—68 years old at diagnosis compared to 70. They also presented at more advanced stage; 55% had stage III and IV versus 45% in White patients.

The socioeconomic factors we looked at were both level of education and total household income, stratifying at less than $30,000 or more than $30,000. We were using what we call structured data. So, when a physician is taking care of a patient, there's a lot of narrative that's unstructured, but this is what's entered into easily extracted data for analysis. So, it's a more high-level look, but there were significant differences in Black patients having lower levels of overall income, and importantly, falling into the lower levels of total household income.

Then the primary outcome we looked at was overall survival, and this was measured not from their time of diagnosis, but from the time they entered their first visit with one of these practices. The death rate in the Black CLL population was 61%, versus only 43% in the White population. When we then go back and look at these different factors demographically and the social determinants that we looked at, and you adjust for them, once you adjusted for the socioeconomic factors in particular income, the Black race itself didn't remain statistically significant, although clinically and socially significant, I'd say. The household income less than $30,000 remain a statistically significant potential driver of this, even though we only captured that data in about 25% of the total population. So, even though there's significant missingness of that data entry, it still remains significant. It's painting a picture that I would say that most important is to recognize that there seems to be a significant difference in gap in overall survival and that social determinants of health may be playing a role in there that we need to understand more.

Oncology Data Advisor: What kind of intentional efforts do you think we need to be making to address these racial and socioeconomic disparities in the CLL setting?

Dr. Zackon: So, even for this kind of study, the next steps would be really to do a more in-depth analysis, where you have to get chart review and get to more details. We also still need to know that there are no differences in the nature of the disease. The prognosis factors besides stage, the care they actually got—was it the same care? Was it the same types of therapy? Was it the same duration of therapy? And then we'll get a more granular look.

I think we recognize that this is not just a CLL story, it's really across health, not just even malignancies, and that we need to look at different data sources that we have to get below this high-level look, right? So, we understand that there are real financial issues when it comes to the cost of care, copays. There are issues of accessing care. Do you depend on public transportation? How far are you from an office site? What is your social support? Are you on your own? Do you have someone, a partner, do you have a family, anyone that can help? And then there are also dimensions of our mental health and of spiritual health. We need to get at those details, and see what is, in a sense, actionable? What can we do? We know there are things we can do.

So, in our database within this US Oncology Network, we've incorporated into the EHR what's called the National Comprehensive Cancer Network® (NCCN®) Distress Thermometer. It'll become like a vital sign, not every visit, but patients can enter their elements that give us a thermometer look at how much distress they have. Importantly, when you look underneath that, it is financial. There is information about social support or social stress, emotional health, transportation issues. Even things that may change. I am under stress at this point because of this. I may not be at the same level of stress at different times, but that could point the way, hopefully. Data-wise, it's population health. What are the main drivers? And if these really stand out consistently, what are the solutions that are being brought? What else can be done?

And then, of course, you have to go back and look at, well, what's the impact of that from a patient-care perspective within utilizing, let's say, this tool of the NCCN Distress Thermometer? Certain things would then trigger a social work engagement identification of what the issue is. We also are using a software program that would, based on their residential zip code, identify potential community resources, depending on what the sector of their social health or social determinants of health are. So, there are practical things to start doing. They make sense, but you still ultimately have to go back to population systems and say, okay, have we moved the needle? Are we closing gaps that are important?

Oncology Data Advisor: How do we create a more comfortable setting to accrue a more diverse accrual?

Dr. Zackon: I think there are multiple facets to that. The sites of care that we provide are hopefully closer to communities where they live. I mean, that's the nature of community-based oncology; they are meant to be closer, but it's not always true depending on where you live. There are also rural versus urban settings that come into play. But the culture of the practice—what is it like to walk in there? How do people feel across differences? Who do they see as employees? And then I think there are issues of trust sometimes. Are you entering into the health care system and not feeling faith in that encounter, or will you be listened to? Will you be seen for who you are?

But then when it comes to particular important health aspects, I think there needs to be not just education in the way we talk about it generally, but community advocates. Let's say for cancers or hematologic disease, Black patients who've have had that disease and they experience it, if they can be advocates in their own community, that may have a much greater resonance and impact to enter into getting your health checked if you're not feeling well or even preventatively.

So, I think there are multiple levels, but we can't assume that just getting educational materials out, whether electronically or otherwise, is necessarily going to make the impact that an individual can that's from a community.

Oncology Data Advisor: How would you say clinicians could begin to address their unconscious bias in this issue?

Dr. Zackon: Yes. I mean, I think it takes a team to care for people. I think as physicians, one of the gifts to us is the diversity of patients that you get to see. You get to enter people's lives in a very intimate way when you're caring for them, especially over time. You have to build a level of trust in that relationship. You can't care for someone if they're not trusting your guidance or your opinion. So, I think we have to be aware of, if we are not developing that level, you have to really. But I think it has to get below the differences to the very human level.

That's how we can connect with each other and embrace the fact that we have differences. We grow up somewhere else. We have a different community, a different family, and all the things that go into making each of us who we are, but it also takes a team. It's the culture of an institution or a practice in making sure that we see each person as an individual and want to open up conversations, because you can't really care for someone if you don't understand who they are and what their issues may be.

As I said, it's a team, so it's not just a physician, because physicians are also busy, and they move from patient to patient. So, having extenders like nurse practitioners and physician assistants who act by scheduling in nature have more time. Have a team that includes social workers. Nurses are critical. Nurses spend a lot of time with patients, whether it's on the phone or whether it's in the office or in an infusion suite, if they're getting active therapy. That level of relationship and dialogue and coming back to the physician with things that they see that are important to feedback, so that it can be brought into the discussion when you're seeing the patient. So, I see it as a team can play a role together with everyone. Listen, it just has to be focused on the right thing, which is the best care for an individual patient regardless of who they are, regardless of their insurance, regardless of their background. THen if you're focused on giving the highest, the best patient care, it's not just the what we do, it's the how we do it that really makes a difference.

Oncology Data Advisor: Yes, exactly, and I know you talked about the limitations that you experienced in this study already, but I wanted to ask if you and your team have a plan in the upcoming year to continue this conversation?

Dr. Zackon: Well, we certainly would like to. I think, just as you saw some of the missingness of the data, so we think we're going to have more data with the implementation of the stress thermometer. It's going to be used by practices in real-time clinically, and we will have the advantage of being able to use that data. So, we need to let that populate more before we can revisit. Not so much the short term of maybe getting some descriptives and understanding, but the longitudinal impact will take years and years in a chronic disease, depending on, in this case, CLL. So, we hope that we'll be able to get at that in more detail in the near future.

Oncology Data Advisor: Definitely. Well, we're definitely excited to continue this conversation, and hear more about your research and study.

Dr. Zackon: We'll do it again next year hopefully, or certainly soon.

Oncology Data Advisor: Definitely next year. Thank you so much for this dialogue and this passion. Thank you so much.

Dr. Zackon: Thank you.

About Dr. Zackon

Ira Zackon, MD, is a Medical Hematologist/Oncologist at New York Oncology Hematology and a Clinical Assistant Professor at Albany Medical College. He is also the Senior Medical Director of Oncology Research and Insights for Ontada, a real-world data and research group. He specializes in the treatment of patients with hematologic malignancies and the direction of real-world research programs.

For More Information

Andorsky D, Zackon I, Wilson T, et al (2023). Recent patterns of care with BTK inhibitors and distribution of social determinants of health among patients with CLL/SLL in the US community setting. Presented at: 2023 American Society of Hematology Annual Meeting. Abstract 2413. Available at:

Transcript edited for clarity. Any views expressed above are the speaker's own and do not necessarily reflect those of Oncology Data Advisor. 

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