Feb 25, 2021
Dr. Karen Winkfield, a radiation oncologist and Executive Director at the Meharry-Vanderbilt Alliance, and Jeanne Regnante, Chief Health Equity and Diversity Officer at the LUNGevity Foundation, discuss a new actionable framework published in JCO Oncology Practice that addresses disparities across the cancer care continuum in medically underserved communities in the United States.
ASCO Daily News: Welcome to the ASCO Daily News podcast. I'm Geraldine Carroll, a reporter for the ASCO Daily News. My guests today are Dr. Karen Winkfield, a radiation oncologist and Executive Director at the Meharry-Vanderbilt Alliance in Nashville, Tennessee, and Jeanne Regnante, the Chief Health Equity and Diversity Officer at the LUNGevity Foundation.
We'll discuss a new actionable framework published in JCO Oncology Practice that addresses disparities across the cancer care continuum in medically underserved communities across the United States (DOI: 10.1200/OP.20.00630). My guests report no conflicts of interest relating to our topic today. Dr. Winkfield's full disclosures and those relating to all episodes of the podcast are available on our transcripts at ASCO.org/podcasts. Dr. Winkfield and Jeanne, it's great to have you on the podcast today.
Dr. Karen Winkfield: Thank you so much, Geraldine.
Ms. Jeanne Regnante: Thank you, Geraldine.
ASCO Daily News: Well, the COVID-19 pandemic and its disproportionate impact on communities of color and other vulnerable populations underscore the importance of addressing inequities in health care, and perhaps the pandemic also increased our appetite for understanding real-world solutions that address real-world disparities. So Jeanne, how did the working group behind this framework harness the expertise required to take on this task?
Ms. Jeanne Regnante: In 2018, I chaired the now still active National Minority Quality Forum Diverse Cancer Communities Working Group. And this working group is made up of patient advocacy groups, industry leaders, diversity inclusion experts in cancer centers across the United States. And this research assessment was conceived in mid-2018.
And specifically, this work was envisioned by an active workstream that we had focused on patient and community engagement led by Ellen Sonet at Cancer Care and Dr. Michelle Vichnin at Merck and Company. And what the team did is they acknowledged two things from the start. The first was that they knew that unless patients can move along the cancer care continuum in a way that's patient-centric, personal, and respectful of their values, their care will be suboptimal and their outcomes will continue to suffer.
The team also knew that there were initiatives by multiple dedicated stakeholders across the US that were active and underway to address inequities and improve outcomes for these populations. But oftentimes, these practices are not published because stakeholders are actually very busy doing this hard work. So the team recognized that we needed to gather the expertise of multiple stakeholders who are doing best practices across the cancer continuum of care in real world communities across [North] America, and that's how this work was envisioned.
ASCO Daily News: Right. So building this actionable framework was a complex undertaking. Dr. Winkfield, can you tell us about the key barriers that the group identified which ultimately led to these expert recommendations? And please explain how you define medically underserved cancer populations in this context.
Dr. Karen Winkfield: Yeah. Well, we actually had extensive discussions. And even before the convening of the roundtable, there were surveys that were being sent to all of our experts regarding the barriers. And the knowledge of the experts really became a foundation for us to build this actionable and expert-informed framework.
And as you noted, the purpose is really to address the cancer care disparities in medically underserved populations in the United States. And most of the time when people talk about health disparities, they are thinking a lot about racial and ethnic groups, which I think is incredibly important, particularly since some of the greatest disparities from a cancer perspective are seen in the Black community, also seen in the Native American/American Indian population. That's important.
But the recommendations as expressed by the final framework are actually applicable to many medically served communities overall, including low socioeconomic status populations, rural populations, which we've heard a lot about particularly related to the National Institutes of Health and some of their work. Racial and ethnic minority populations, of course, are in there, but subgroups--intersectionality between LGBTQ+ communities, immigrant population, and aging populations.
So all of these are considered as part of the framework when we're thinking about medically underserved populations. And the participants in the roundtable identified the barriers within and between four domains. So the four domains are screening, diagnosis, treatment, and survivorship. And for each of the target populations, we actually had discussions around what some of the barriers would be. And in terms of highlights, some were common to all the domains, including a lack of coordination.
We know that cancer care is so incredibly complex. And so that lack of coordination between multiple visits or different providers and testing particularly related to transitions in care. I think that's an important thing, those logistics around that. Financial barriers were also identified [such as] difficulty in addressing and documenting social determinants of health. And we need to make sure that those sorts of data points actually get included into the electronic medical record and communicated to different providers along the cancer continuum.
So there were a lot of different things that were really provided in terms of barriers, but we also tried to identify different settings that really could make themselves conducive to touch points that could provide improvement in care, including navigation and other sorts of resources. So there were lots of different barriers that were expressed and were identified.
And I think, again, it's important to know that all the experts really apply their expertise for this particular work on high prevalence cancers. So we know that there are some cancers that may not be as predominant in the communities, but the authors felt that it was really important that the recommendations be applicable to as many cancers as possible and to those that we see the highest prevalence in the United States. And particularly for those, again, when you're thinking about communities that are oftentimes disenfranchised, they oftentimes have comorbidities. So we took that into consideration as well.
ASCO Daily News: Well, Jeanne, as Dr. Winkfield just pointed out, understanding the needs and challenges of all stakeholders who are impacted by disparities is crucial. So can you tell us a bit more about the groups that you're hoping will really use this framework?
Ms. Jeanne Regnante: So there are so many stakeholders that greatly impact care and trusted engagement of medically underserved cancer communities. And just to mention teams and the types of roles that we feel who will use this framework, they really include health care system leaders, diversity inclusion leaders in cancer, patient advocacy leaders, [and] patient navigators. And when I say patient navigators, I mean lay navigators, clinical navigators, nurse navigators.
Often, centers use patient scientists. They call them different things, but they're really people in the community who work to engage populations in a trusted manner. Of course, social workers, community health workers, community-based organization leaders--so barbershop networks, beauty parlor networks, the AME Church network--they can use this framework. And also, industry leaders and policy leaders, and also, importantly, community outreach leaders in cancer centers and also leaders that do outreach in federally qualified health centers in the United States.
ASCO Daily News: Well, Dr. Winkfield, you have worked for many years to address disparities in cancer care in your own community and across the country. So why do you think this new framework, these expert recommendations, will make a difference now? And how do you hope they'll be applied by oncologists in practice and beyond?
Dr. Karen Winkfield: What's incredible about this publication, again, this framework that has been pulled together from experts around the country, we're hoping it's going to serve as a toolkit to bolster health care, navigation, [and] community stakeholder efforts that are dedicated to this work. And you're right, I've been doing this for a long time.
And while originally the impetus for the paper was cancer health equity, things have been so heightened by COVID-19. There are so many other stakeholders that are now invested because of COVID-19 that understand the issues that those of us who have had boots on the ground for a long time for decades have understood. Now other people's eyes are being opened. You think about the fact that the Spanish speaking population had some of the highest levels of COVID-19 infection, right? So what's the communication strategy when you have diverse languages that are spoken in communities?
And you think about the geographic and social isolation. We've been hearing about how there are issues with getting the vaccine out to individuals who are in rural, isolated positions. These are things that we've been dealing with from the cancer care perspective for a very long time. And so I think now that people are understanding that we need to have a much better framework in thinking about how to deal with the lack of familiarity with resources that can address financial and other social support needs, including things like transportation. How do you get the vaccine, for instance, to individuals if they don't have transportation?
These are things that those of us who have been dealing with cancer disparities have been dealing with for decades and trying to identify the things that work. And so I do think that now the time is right, that there is a better appetite for understanding real world solutions to these real world problems, instead of just continuing to describe the disparities that exist.
ASCO Daily News: Absolutely. So Jeanne, let's focus on patient advocacy. You're at the LUNGevity Foundation, a patient advocacy organization. So how will you be implementing the recommendations in this report?
Ms. Jeanne Regnante: Sure. I always say that one person can do anything, but many people can do everything. And at the LUNGevity Foundation, we have capability in a number of different functional areas--research, precision medicine policy, communications, patient engagement. And when I first started in March of this year (2020), I looked to amplify the work that we're doing as a organization to understand our capabilities. And then we looked at the framework and we chose two things that we're going to implement deliberately as a start.
So to me, this framework gave us, the LUNGevity Foundation team, really clear choices for our health equity strategy. So we're doing two major things that I'll talk about. One is, that was recommended by the framework, we're actively developing a library of health literate, culturally sensitive, and linguistically appropriate educational materials with experts in the field, including patients who we feel are experts and health literacy experts.
And we do have award-winning, graduate level educational material that's available across the lung cancer continuum of care. But to many patients, it's not understandable in a way that they could understand it. So this strategy is critically important.
Also, based on the importance of a community engagement capability, we decided to partner with a robust network of cancer center community outreach leaders in high risk geographies where lung cancer lives, who have trusted relationships with community-based organizations. And this partnership strategy, we feel, is really critical for engaging populations in a trusted manner moving forward. So those are the two deliberate strategies we have enabled based on the recommendations that came out of this framework.
ASCO Daily News: Absolutely. So in the framework, there is a recommendation regarding the importance of workforce diversity and related health care system changes. Dr. Winkfield, how important is this issue in cancer care, and what do you and your co-authors believe needs to be done to address this?
Dr. Karen Winkfield: Yeah. So this area of workforce diversity is something that's near and dear to my heart. And there has been a body of knowledge that has, again, been in existence for decades that has highlighted the importance of workforce diversity in terms of stemming some of the health inequities that we see.
There were studies that were commissioned part of the Sullivan Commission that came out a decade or so ago. And even the Affordable Care Act recognized the importance of workforce diversity. There are critical things that are related to one's ability to identify with the person who's providing your care, right?
And look, part of the challenge is that there is an issue in the United States with respect to ensuring that everyone has access to advanced education, so that's one barrier. But when we look at the oncology workforce, only 3% are black, only 4% are Latinx, right? And so how are we, in this country where by the year 2040, 2050 there's an expectation that we'll be a majority/minority city, how--I mean state or country--majority/minority country, how are we keeping pace? Well, we're not. And I think that's a challenge.
And so part of the thing that I really think is important around workforce diversity is not just diversifying the physician workforce. I think that's a component, that patients feel comfortable having a provider who looks like them or comes from a similar background. Again, we're talking about socioeconomic status or individuals who may be from a rural community, because there's this identity that comes with knowing that somebody has a similar background and there's an automatic comfort level. And there's research to show that patients actually feel better heard by individuals who come from similar backgrounds and they have better experience as part of their care.
But it can't just be physicians. It has to mean that institutions, that practices, private practices, that programs that take care of cancer patients need to also think about the other members of the care team. So we're talking about nurses. We're talking about radiation therapists. We're talking about medical assistants. We're talking about people who sit at the front desk. Do the people who work for your institution look like the communities that you're taking care of? And that's a really, really important factor that needs to be considered.
And so in thinking about this framework, again, we want to take a high level view of where are all of the areas, where are all the touch points that really need to be considered in terms of thinking about how to move the needle? We've already talked about the fact that people have known about these cancer disparities for a long time, but we need to have action around these items.
And so the hope, again, is that the toolkit was comprehensive enough that institutions that are considering change, organizations that are advocating on behalf of patients will really think about how can we advocate on behalf of ensuring that there is a workforce that is reflective of the communities that we're serving, particularly those that are so underserved and that this toolkit is intended to improve care for.
ASCO Daily News: Well, I so appreciate the time that you've both taken today to explain the new framework. Jeanne, first to you. Is there anything else on your mind before we wrap up our discussion today?
Ms. Jeanne Regnante: I just want to say that I, personally, am so inspired by the many people that work in this area across the country to make a difference. And in order to have impact with sustainability, we need to make some choices and actually do the work. And thank you for inviting us to publish this paper. And we did appropriately make it open access because we wanted it to be accessible to all.
ASCO Daily News: Absolutely. Dr. Winkfield, is there anything else on your mind before we finish our discussion today?
Dr. Karen Winkfield: Well, again, I just want to thank you for your interest in this paper. We are very hopeful that while these are complex issues that people will identify real world solutions. And remember, these are things that have been proven. They may not have all been in a publication form, but these are solutions that have worked in different communities. And we hope that there will be folks who find something that resonates for them.
And I've got to say, look, I've been working with ASCO for years now as part of their Health Equity Committee, formerly the Health Disparities Committee. But we really wanted to turn that around and say, hey, we need to think about equity. We need to make sure that we are thinking about how do we make sure that everyone, every community has what they need. And it is hard, it's complex, but we wanted to provide this framework to help support that work that ASCO has been doing, and also ASCO's work on health workforce diversity.
So I'm just really excited that I was asked to participate. I'm very grateful for the minds, the brilliant minds that came together. And I'm really grateful for the patients who have allowed us to care for them. And my hope is that the oncology community will continue to put the patients first and to put their care first. And my hope is that this toolkit will help provide some real world examples of how best to do that.
ASCO Daily News: Well, thank you both very much for sharing your insights today and for your efforts to truly move the needle on addressing health inequities and disparities in cancer care. Thank you very much.
Dr. Karen Winkfield: Thank you.
Ms. Jeanne Regnante: Thank you.
ASCO Daily News: And thanks to our listeners for joining us today. If you've enjoyed this episode of the podcast, please take a moment to rate, review, and subscribe wherever you get your podcasts.
Disclosures: Dr. Karen Winkfield
Consulting or Advisory Role: Merck, Pfizer, Bristol-Myers Squibb, Grail Bio, AstraZeneca
Disclosures: Ms. Jeanne Regnante
Employment: Merck Sharp & Dohme
Disclaimer: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.