Center on Health Equity and Access: April 2024

ACCC’s Barrett Puts Focus on Community Engagement and Equity

On March 1, 2024, Nadine J. Barrett, PhD, MS, MPH, formally started her term as president of the Association of Cancer Care Centers (ACCC). Barrett, a medical sociologist by training, is a professor of social sciences and health policy and senior associate dean for community engagement and equity in research at Wake Forest University School of Medicine in Winston-Salem, North Carolina.

Nadine Barrett, PhD, MS, MPH | Image credit: Wake Forest

Barrett studies health care disparities and is a leader in creating strategies to build partnerships between academia and community stakeholders, with a goal of identifying barriers to enrollment in clinical trials for persons from underrepresented groups. She develops training programs to tackle implicit bias and structural racism to improve access to health care.

At ACCC, Barrett spoke with Hayden Klein of The American Journal of Managed Care (AJMC) about her yearlong presidential theme: reimagining community engagement and equity in cancer.
This interview has been lightly edited and condensed.

AJMC: Can you provide some insight on the significance of your presidential theme? What specific changes or initiatives are being proposed?

Barrett: Reimagining community engagement and equity in cancer allows us to start thinking about how we engage our communities not [only] in health care but also in research—[and] not only in terms of participants but also as experts and advisors. Who can give us insights and input into how we deliver the best care to the right people at the right time in the right place? Often, we make these decisions [behind] closed walls, within our institutions, our hospital settings, and in universities. We don’t really ask the people who we’re trying to impact what would make the most sense [and] what would actually work. What are the questions we need to be asking?

What we’re trying to do now, as part of the theme his year, is dig deeper into what engagement is and ensure we’re engaging our patients as experts—experts in their own right—[and] engaging our community as experts in their own life, who are committed to give feedback, input, and insights into what we need to be doing, and to help us to ask the right questions.

AJMC: Can you share some examples of successful community engagement strategies that have effectively addressed disparities in cancer outcomes? What are key factors that contributed to their success?

Barrett: There are many examples. As we engage our communities around our research, I find that our research is always better. We talk about trust, for example. There’s a program I developed with a group at Duke prior to joining Wake Forest; it was an incredible program…called Project ENTRUST.¹ We always turn around and say, “How do we build trust in the community? How do we get the community to trust us? How do we get our patients’ addresses, particularly those who are underrepresented and in marginalized populations?” And the question really is: How do we, the institution, become more trustworthy?
We’re more trustworthy when we’re doing an inward reflection and engaging our communities in what trustworthiness looks like, so we shouldn’t imply that either. Our community should tell us what would it look like to be engaged with a trustworthy health system to get cancer care. What would it look like to engage with a trustworthy institution to participate in research and trials? That’s where we don’t typically do that work. But with Project ENTRUST and other work that I’ve been doing over the years, it’s been more effective in engaging our communities.
[For] example, Bishop Ronald Godbee, a community member and leader in Durham, North Carolina, is absolutely amazing. We have been doing focus groups in his church, trying to understand the needs [and strengths] in our communities…. What’s really powerful is that one day, he asked, “When are you going to actually bring a clinical research study to our church?” So, we did. In the middle of an afternoon or evening, we got together with the church and had a whole clinical trial—92 people participated. It was for Helicobacter pylori for stomach cancer; if you have an H pylori infection, it’s more likely for you to get stomach cancer. [Basically], we ended up doing a study of people who [completed bloodwork] and this pretty extensive questionnaire. Of the 92 people from underrepresented populations, 25% had H pylori infection, and with 2 rounds of antibiotics, they basically eradicate their chances of getting stomach cancer.

Again, that’s a great example of how it works. If we create a partnership with the community, we engage and find out what’s most important to the community. We stopped speaking about our community and our patients from a deficit standpoint and started speaking about our community and with our community. From a strength standpoint, what are the strengths in our community that we can learn together as experts?

AJMC: How do you see leveraging partnerships between academic institutions, health care providers, and community organizations to advance cancer equity goals? What role do you see ACCC playing in facilitating these collaborations?

Barrett: One of our main goals for ACCC is collaborative excellence. We have been doing that for a long time as an organization, and we’ve really heightened that over the past few years. How do we build the appropriate relationships to maximize impact and work toward reducing disparities? At ACCC, our ongoing focus is to continue to build these types of partnerships. Our partnership with [the American Society of Clinical Oncology (ASCO)] is a great example. We developed a training program [that] was disseminated across the country in a way that allowed us to start helping teams think about where their own biases are; this is [contributing to] diverse representation in research and trials. We could do that as ACCC alone, [and] ASCO could do it alone, but together, we have a greater [and more long-lasting] impact. So, these are the things that I think are really important for us.

AJMC: Last year, you published a paper on the ACCC-ASCO implicit bias training program.² How has this program impacted the diversity of participants in cancer clinical trials, as well as its implementation? What other options have you seen?

Barrett: This is…the million-dollar question for me, because when people think about training, it’s usually more of a one-off training. People may get something from it, but the problem is that if…we see [training] as [being] the answer [and] we’re not implementing the strategies from that training, then we’re not going to see the kind of changes that come from it.

With the justice program, it’s exciting because more people are going on to the website and taking it. People are reaching out to learn more, and those who take that deeper dive are understanding their own implicit biases—[what the] processes [are] that stop them from engaging underrepresented populations and how they [can implement] interventions as a team to address this and get the appropriate support. Training alone does not create more diversity in clinical research and trials; engaging a community and a team that actually is working together to address this is where we see the biggest impact.

AJMC: Given the high completion rates and positive outcomes observed in the pilot implementation of the training program, are there any plans to update or expand the curriculum to address new emerging challenges?

Barrett: There’s [several] things we can do. We’re going to continue to work with ASCO…. As we go into the second year, and as president of ACCC, I’m looking forward to us continuing to build that out. One of the key things for us to think about is creating [version] 2.0. What does that look like? That is what I was mentioning in terms of that deeper dive, where it’s not just the training—although that is amazing and people love it. I’ve been getting great responses back from it. There’s a great study that came out that shows that bias, stereotypes, and assumptions are playing a key part in why underrepresented African American and Latino [individuals] in particular were not being invited to participate in cancer trials. This was a quantitative study, [which] means it’s the voices of the [principal investigator and] the clinical research team members [who] said these are the things they end up doing. That means we’ve got to do deeper. We’ve first got to understand the biases exist, then what are we going to do about it? That requires interventions.

AJMC: You published a paper on the 5 W’s of racial equity research.³ Can you provide an update on any progress or challenges encountered in implementing this framework for racial equity in research since its publication?

Barrett: Yes, with Keisha Bentley Edwards [PhD, MA], a phenomenal colleague of mine, we’re really excited about putting together the 5 W’s. It [truly] helps people to incorporate an equity lens into their work, asking the right questions…. That can help us answer those questions. It’s not that we can come up with a group of questions and then know we’ve got the breadth of questions or we’re asking all the right questions…. Again, this is a great opportunity for us to think about who, what, where, when, [and why]—who’s there, who’s present, who’s missing, what are we doing, what [are] our blind spots, and…why are we doing this? What is the importance of…the potential impact? How are we doing it? Do we have community advisory councils and patient advisory councils informing our work to the next step? Again, there’s all different aspects of how we can ask these questions in just about anything we do—[not only] in the research process but [also] in how we think about quality improvement measures to improve quality care for our patients.

AJMC: What do you think are the concrete next steps that are necessary to further advance equity in the research process?

Barrett: One of the first priorities is making it standard practice to have strong patient and community advisory council members informing our work. From the moment we have a research idea, let’s bring together a group of patients and community members from diverse populations who can give some feedback, insights, and guidance on how we’re asking the questions [and] what we’re doing in terms of developing the study design. They should be part of that study design [and] the implementation of the study. Ultimately, when it comes down to the outcomes, they should be part of the interpretation and the dissemination of the study. Let me home in on that interpretation, because research is wonderful. I’m a researcher myself, and research has made advances beyond what we could ever imagine. But one thing we do know is that research studies tend to rely on the last research question—not [only] the last research question on last week’s study but [also] what they say are the implications and the interventions. If we keep on this path about disparities and research around disparities, and it’s always based on the prior studies and what those studies thought should or should not happen, [then] how can interventions come? How can they even explain why people from underrepresented groups are not engaging on health behaviors that we may be studying?

What we [found] is that if we don’t disrupt the research process, we write studies and papers about the population that never ask the population: Based on these findings, what is your interpretation? What do you think we should be doing as an intervention to address this? What do you think are other causes? Instead, we keep going back to the past of what other studies have said.… When they say that, for example, Black people are having worse health outcomes, trust is often cited as one of the reasons. The reality is that our systems and research will not be very trustworthy. [If] we start doing the inward work, this can move us to the…next level. [The first step] is really engaging our patients, the second can be advisory councils—including asking the 5 W’s framework…and ensuring we’re infusing an equity lens in our question in our processes—and then ensuring that we’re collaborating at the highest level across all groups…[working] toward leading us to where we need to be around advancing equity.

References
1. Project ENTRUST. Duke Clinical & Translational Science Institute. Accessed March 8, 2024. https://ctsi.duke.edu/project-entrust
2. Barrett NJ, Boehmer L, Schrag J, et al. An assessment of the feasibility and utility of an ACCC-ASCO implicit bias training program to enhance racial and ethnic diversity in cancer clinical trials. JCO Oncol Pract. 2023;19(4):e570-e580. doi:10.1200/OP.22.00378
3. Bentley-Edwards KL, Jordan Fleming P, Doherty IA, Whicker DR, Mervin-Blake S, Barrett NJ. The 5Ws of racial equity in research: a framework for applying a racial equity lens throughout the research process. Health Equity. 2022;6(1):917-921. doi:10.1089/heq.2022.0042

David A. Eagle, MD: CMS Reimbursement Cuts Encourage Trend of Independent Physician Exodus

For independent doctors, 2024 began with a Medicare reimbursement pay cut of 3.4%, as legislation in both the House and Senate seeks to alleviate but not eradicate the reduction.¹ Over the past 20 years, Medicare physician pay has plummeted by 26% when adjusted for inflation while hospital reimbursement has surged by 70%, prompting more than 100,000 doctors to abandon independent practice for hospital or corporate employment since 2019.²

David A. Eagle, MD | Image Credit: NYCBS

According to David A. Eagle, MD, of New York Cancer & Blood Specialists, this is a threat to patient access and care quality. In an interview with The American Journal of Managed Care (AJMC), he discusses how the expenses associated with practicing medicine have risen by 50% since 2001, rendering it increasingly difficult for independent physicians to sustain their operations.³

This interview has been edited for clarity.

AJMC: Can you provide an overview of the current situation regarding the proposed 3.4% Medicare reimbursement pay cut for independent doctors effective January 1?

Eagle: Unfortunately, it’s gone from [being] proposed to being implemented. We still are hoping for a fix, but it looks like that won’t happen until March of this year if the legislators can agree on a fix. So unfortunately, those cuts have already happened. [Although] 3.4% by itself doesn’t necessarily sound like a whole lot, it is in the context of repeated cuts and lack of inflation adjustments that have occurred for the past 20 years.

AJMC: In contrast, the reimbursement for hospitals has seen a 70% growth. How has this discrepancy impacted the choices of physicians between independent practices and larger health care systems?

Eagle: Unfortunately, we’ve seen a decline in independent practices that began 40 years ago and continues today. Forty years ago, approximately three-quarters of physician practices were independent, and now it’s probably a quarter of practices that are truly independent. That’s largely a result of the reimbursement changes; if you have one system that’s supported with higher reimbursement, it’s not surprising that the [care] providers would migrate to that more expensive system. We think that’s what needs to be rectified.

The inflation changes have been a problem for 20 years, and the hospitals and other facilities get automatic inflation adjustments in their reimbursement and private physicians do not. That has gone on for so long, it’s created a huge discrepancy with the financial support that goes to private physician offices vs hospitals.

AJMC: Could you elaborate on the trends in Medicare physician pay over the past 2 decades, particularly the 26% decrease when adjusted for inflation? What factors have contributed to this decline?

Eagle: Physician reimbursement has gone up just 10% since 2001. While hospital payment has gone up 70% since that time, it’s a combination of the inflation adjustments and the actual changes in the [fee] schedule itself—both of those things together have created a divergence. A lot of people have seen the graphs of the divergence between physicians and hospitals since that time. When you make those small changes over a longer period of time, it adds up and impacts the settings of care that patients have access to.

AJMC: The statement mentions more than 100,000 doctors leaving independent practice since 2019. What are the main reasons behind this exodus, and how has it affected the quality of patient care?

Eagle: We think independent medicine provides tremendous value and quality for patients, and [it] allows people to get treated in their local communities in a more convenient [and cost-efficient] setting. Typically, the out-of-pocket expenses for patients are [also] lower. So, we believe in that independent model and that it really serves patients well. It really just comes down to reimbursement, and we have to compete with other models of care. If our reimbursement goes down while there are other competing models of care [in which] reimbursement goes up, that just makes it harder to maintain independent physician practices.

AJMC: The cost of practicing medicine has reportedly increased by 50% since 2001. What are the primary cost drivers, and how does this impact the ability of independent physicians to sustain their practices?

Eagle: The cost of everything from rent to particularly personnel [and] staff salaries—all that has gone up over the past 20 years, [whereas] physician payments have been relatively flat. At some point maintaining an independent practice is about the numbers; it doesn’t pencil out when the costs go up, but the reimbursement doesn’t.

AJMC: How have both the House and Senate been addressing this issue through legislation, and what are the key considerations in those proposals?

Eagle: We very much support the Strengthening Medicare for Patients and Providers Act…that was introduced last year. That provides permanent inflation-based updates to the Medicare Physician Fee Schedule and eliminates the payment cut that took effect at the beginning of 2024. That’s the exact type of legislation that needs to be supported to address these issues.

AJMC: How does this shift from independent care to hospital care settings affect health care access and equity for patients?

Eagle: Our practice in New York and Long Island takes all insurance plans. [Frankly], we put clinics in…communities that other cancer providers don’t necessarily want to go to. The first step is to be available for the patient in their community, where they can come see you, and actually take their insurance plan. If you can’t do that, you can’t offer hope to patients. The hospital-based care sometimes just isn’t available for patients. And often, the out-of-pocket costs for hospital care, which includes some things like facility fees, can be higher, [which] can be a barrier for patients.

At [New York Cancer & Blood Specialists], one of the things we’re trying to do is build out a structured health-related social needs intake form so we can better connect patients with resources. We have our own in-practice foundation that raised [more than] $1 million last year, and we use those resources to try to meet the needs of patients who have financial needs—their nonmedical needs. So that’s for transportation, housing, utilities, food—those types of things. [As a private practice], those are the things we try to focus on and provide care for the benefit of the patient or community. But to your original question, to really take care of a patient, you have to be in a location they [can] get to, and you have to accept their insurance plan. Without that, they just don’t have access to you.

AJMC: Are there any legislative actions where there could be potential solutions or strategies that could be explored to support independent physicians and mitigate the challenges they face?

Eagle: I think payment parity legislation could help. Anytime you have 2 separate models of care that pay differently for providing the same type of service, that type of payment disparity is [what] puts more pressure on independent medicine. Supporting payment parity between private physician offices and hospitals would be a very good, important step in the right direction.

AJMC: The statement suggests that care costs more at hospitals and large systems. Can you explain why this is and how it contributes to the overall health care landscape?

Eagle: I think patient out-of-pocket expenses are often higher, [and] the hospitals are paid under a different method by Medicare compared with private physician offices…. The hospitals can often negotiate higher commercial rates with the private insurers. That [often] translates into patients paying higher co-pays when they seek care in the hospital. I think the care itself is more expensive, too, because the hospitals tend to be structurally more expensive than private physician offices.

AJMC: How can the health care system strike a balance between controlling costs and ensuring quality care delivery, particularly in the context of independent practices?

Eagle: The best way to strike the balance between cost in quality is to support the lowest-cost providers of care that provide the quality, and I think independent practices do that. Our quality is as good as—if not better than—care in the hospital setting, and we can do it at a lower cost. So, I think supporting that model is really the best way to strike that balance.

AJMC: Do you have anything else to add?

Eagle: We have a new organization, the American Independent Medical Practice Association, that really looks to be the voice for independent medicine, and that independent medicine needs its own voice. We’ve launched this organization to do that and to help share [this] message: It is getting harder for medical practices to stay independent, and there’s tremendous value to the patients of private physician offices. Patients should have that option.

References
1. Calendar Year (CY) 2024 Medicare Physician Fee Schedule final rule. News Release. CMS. November 2, 2023. Accessed March 6, 2024. https://bit.ly/3wJeX2u
2. PAI-Avalere Health report on trends in physician employment and acquisitions and of medical practices: 2019-2021. Physicians Advocacy Institute. Updated April 2022. Accessed March 6, 2024. https://bit.ly/3T2AMBL
3. Medicare updates compared to inflation (2001-2023). American Medical Association. Accessed March 6, 2024. https://bit.ly/49ZVmto

Access to Cancer Care Alleviates Racial Disparities in CLL/SLL

When access to cancer care is equal, racial disparities between Black patients and White patients with chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL) are alleviated, according to a study published in the American Journal of Hematology. These findings challenge previous studies that show Black patients had worse overall survival (OS) than White patients, based on Surveillance, Epidemiology, and End Results (SEER) age-adjusted death rates.

Although death rates from CLL/SLL continue to fall, with an average annual reduction of 2.9% between 2011 and 2020, there is concern that not all patients have benefitted from recent clinical advancements, such as the development of small module inhibitors (SMIs) and BCL2 inhibitors, according to the study authors. “Given the limitations of variables in the SEER data, in-depth discovery of why this disparity exists was unable to be performed,” they said.

Instead, they utilized a large, real-world database to study differences in patient characteristics, CLL/SLL prognostic variables, and treatment received. They examined data from the nationwide Flatiron Health electronic health record–derived deidentified database, which includes patients with CLL/SLL who received their diagnosis between January 2002 and June 2022.

The study included 7732 patients: 5864 (81.7%), 579 (8.1%), 63 (0.9%), 8 (0.1%), and 660 (9.2%) patients were White, Black, Asian, Hispanic or Latino, or other/not specific race, respectively. Overall, most patients received their diagnoses and started treatment for CLL/SLL between 2014 and 2022.

Analysis showed White patients were more likely to be male (63.4% vs 55.1%; P = .0004), Black patients were younger at diagnosis than White patients (64.3 vs 66.6 years; P < .0001), more Black patients received their diagnosis after 2014 vs White patients (67.2% vs 57.3%; P < .0001), and most patients were from Southern states (44%).

Further analysis revealed that 37.9% and 30.8% of Black patients and White patients, respectively, were characterized as having obesity (body mass index, > 30 kg/m2), and Black patients were more likely than White patients to have a lower socioeconomic status (37.4% vs 11.9%). ECOG performance status was balanced between the races. The investigators highlighted the following diagnosis and treatment characteristics:

• At diagnosis, Black patients had a higher Rai stage, with 30.5% vs 22.6% of White patients having a Rai stage of 3 or higher.
• Black patients were less likely than White patients to have a 13q deletion (32.7% vs 51.9%; P < .0001) and more likely to have an 11q deletion (29.4% vs 17.4%; P < .0001) and trisomy 12 (38.4 % vs 27.6%; P < .001).
• Black patients were more likely to not have a mutation in IGHV (80.1% vs 58.2%; P < .0001).
• Black patients were more likely to be treated with SMIs at any time in their treatment history than White patients (68.1% vs 57%; P < .001).
• Black patients had a shorter average time from diagnosis to treatment start (24.3 vs 38.6 months; P < .0001).
  

“To our knowledge, this is the largest data set that shows differences in CLL prognostic variables by race,” the investigators said.

Additionally, the study identified independent prognostic variables for worse OS: older age, male gender, presence of 17p deletion, and longer time from diagnosis to first treatment. Conversely, the use of SMIs and being from Western states were independent prognostic variables for improved OS.

Overall, these results suggest that when Black patients have access to cancer care and are treated with SMIs, no disparity in OS is observed, the authors stressed. However, inequity in access may still be prevalent, as Black patients tend to present with a higher Rai stage and had a shorter time from diagnosis to treatment.

Speaking to potential limitations on their findings, the study authors noted that only patients being treated at a cancer clinic, who had access to a hematologist/oncologist, were included in this data set, thus nullifying a potential source of disparity. Further, the database only starts accumulating data when a patient establishes care with a hematologist/oncologist, so it was not possible to directly assess delays in access to care.

“Seeing no difference in [OS] between Black [patients] and White patients in a large, population-based study is promising,” they said. However, no comparison could be made between patients who had access to cancer care and those who did not, given the patient population of the data set.

According to the authors, the “clear difference” between the deidentified database they used and the SEER database is access to cancer-directed care, where the SEER database includes all patients regardless of treatment status and whether access to a hematologist/oncologist occurred.

“This analysis confirms that when access to cancer care is equal, racial disparities are alleviated,” the authors concluded. Nevertheless, they acknowledged that systemic issues remain, especially when the SEER data continue to show that a disparity exists, highlighting the need to reduce barriers to access.

“Future interventions aimed at improving disparities in cancer care should be aimed at improving overall access to care,” they concluded.

Reference
Kittai AS, Hang Y, Bhat SA, et al. Racial disparities in chronic lymphocytic leukemia/small lymphocytic lymphoma accounting for small molecule inhibitors: a real-world cohort analysis. Am J Hematol. Published online February 15, 2024. doi:10.1002/ajh.27241