In a panel discussion this week, five leaders in oncology proposed an action plan for tackling cancer health disparities and enhancing health equity.
The panel, “Health Equity: Advocacy and access,” hosted by the Cancer History Project May 9, 2022, included:
- Karen Knudsen, MBA, PhD,
CEO, American Cancer Society and the American Cancer Society Cancer Action Network, who moderated the event
- Clifford A. Hudis, MD,
CEO, American Society of Clinical Oncology;
Executive vice chair, Conquer Cancer Foundation;
- Chanita Hughes Halbert, PhD,
Vice chair for research, professor, Department of Population and Public Health Sciences;
Associate director for cancer equity, Norris Comprehensive Cancer Center, University of Southern California
- Amy E. Leader, DrPH, MPH,
Associate professor of population science and medical oncology, associate director of community integration, Sidney Kimmel Cancer Center;
Public health teaching faculty, College of Population Health, Thomas Jefferson University
- Cheryl Willman, MD,
Executive director, Mayo Clinic Cancer Programs (nationally and globally);
Director, Mayo Clinic Comprehensive Cancer Center
A recording of this panel is available as a video above and podcast. The full transcript can be found below.
Knudsen challenged the panelists to give examples of programs that have worked to further health equity at their organizations.
“Our health system did COVID vaccines in South Philly taco shops. I mean, why do you need to go into a hospital to get a COVID vaccine?” Leader said. “We are doing smoking cessation in churches, and the DMV, and all of the places that people go Monday to Friday and evenings and weekends, and parks, and not expecting anyone really to come to us, because who has the time or the interest when you’re doing so many things.”
Similarly, Willman described Mayo’s efforts to bring cancer care to the patient. Mayo has been providing follow-up care in the home for 1,500 patients in Florida.
This resulted in “dramatic reduction in hospitalization, dramatic reduction in the disruption and financial strains on families—and patients loved it, to be able to do care in their home environment,” Willman said.
“If we really show that we can deliver that advanced care at home, I think it cements and creates the foundation for us to do clinical trials in the home environment,” Willman said. “Many patients tell us they just can’t disrupt their life to come back and forth and back and forth to a facility for trials. I really believe we’re facing a revolution in how we deliver cancer care.”
Hughes-Halbert pointed to the importance of lay navigation for clinical trials. Data help identify those in need of patient navigation, she said.
“One of the things I’m really excited about, thinking about where we are, are the opportunities to use data-driven strategies to identify patients who would have the greatest level of need for patient navigation, particularly navigation to address social determinants of health,” she said. “Hearing about the opportunities for delivering at-home patient care could be informed using data-driven approaches.”
Hudis said ensuring that patients receive the same access to care begins with policy.
“If you don’t have coverage for clinical trials for that population, then you have an impediment to enrollment,” he said. “The downstream impact of that observed by all of us for years, was a reduced number of Black Americans and other groups on clinical research trials, which in turn raises challenges about interpreting the data at times and applying it to diverse populations.”
Ensuring that Medicaid covers the routine care of clinical research trials helps lower overall mortality, studies have found (The Cancer Letter, June 5, 2020).
“With that, the Clinical Treatment Act was passed at the end of 2021,” Hudis said. “Now, we’ve pivoted to enforcement at the state level, which again will require plenty of work, but it’s a concrete success. I expect it to have a pretty rapid impact on who gets onto clinical trials, which is one narrow part of the funnel if you think about all of the work we’re doing.”
Knudsen challenged the group to propose guidance for the updated Moonshot. The panelists proposed community advisory boards, enhanced digital literacy, and a requirement to screen patients for clinical trial enrollment.
“I think that’s critically important, because in some of the work that I did at my previous institution, the common theme is that many patients, regardless of if they were Black or white, were just not asked,” Hughes-Halbert said.
Willman agreed, and said trial sponsors should reduce barriers to joining clinical trials.
“We’ve allowed our trial sponsors to super-select our patients. It needs to go away,” she said. “We need to do trials in the real world with real people. And I would just love to see the FDA and the NCI and ASCO, whatever you can do, and ACS, to really deal with the issues of comorbidities that limit trial participation.”
Hudis said patients who receive a diagnosis through screening need a path for treatment.
“All too often, everybody thinks that the solution is to get everybody into screening. And the very people we’re most worried about and talking about today, are the people who then face interminable waits for appointments, delays for follow-up biopsies, and so on,” Hudis said. I think it’s an ethical imperative that we build the system to receive those patients.
“That’s really where so many individuals are left hanging. Part of that’s navigation. Part of that’s reimbursement and access to healthcare coverage. Part of it is education. Part of it’s digital education,” she said. “We’ve touched on a lot of the things that will help close that gap today.”
“It would be interesting to meet a year from now and see where we are, and one year into the Moonshot, of what actually has come,” she said.
Karen Knudsen: Thank you so much for joining us today and thank you to The Cancer Letter for asking this group to come together, to speak about health equity, in particular, cancer health equity, with a focus on advocacy and access.
I’m Dr. Karen Knudsen. I am the CEO of the American Cancer Society and the American Cancer Society Cancer Action Network, and I am joined by four exceptionally strong panelists that I’d like to give a moment to introduce themselves, speak just for a moment about the organization that they work for and how that relates to health equity in brief.
And if they’re at a cancer center, to talk a little bit about the catchment area that they serve, or some unique features of that catchment area. We’ll just start with you in my Brady Bunch view, Dr. Leader.
Amy Leader: Thank you, Dr. Knudsen, and thank you everyone for being here and welcome.
My name is Amy leader. I’m an associate professor of population science at Thomas Jefferson University and Sidney Kimmel Cancer Center. And I think most importantly for this discussion, I am our associate director of community integration or our AD of COE, which I think a lot of people know.
Sidney Kimmel Cancer Center has a seven county catchment area. It’s across the greater Philadelphia region. It’s incredibly diverse. It’s over five million residents. There are at least 45 languages spoken throughout the catchment area, if not more. We are welcoming so many immigrants and refugees, whether they’re Afghan families, whether they’re Ukrainian refugees and families, it’s an incredibly diverse catchment area. It also has high levels of poverty and years and years of intergenerational poverty as well that we’re working to overcome. So, incredibly diverse dynamic, but a really great place as well. Thanks for having me.
Knudsen: Thank you, Dr. Leader. Dr. Halbert?
Hughes-Halbert: Good afternoon, everyone. My name is Chanita Hughes-Halbert. I’m at the University of Southern California, where I’m vice chair for research and professor in the Department of Population and Public Health Sciences.
I also serve as associate director for cancer equity at the Norris Comprehensive Cancer Center here at USC. In this role, what I’ve been really excited to learn about is also the share of distinct diversity that exists in our catchment area, which includes Los Angeles county.
A fun fact that I would want to share at this point is that Los Angeles county has more residents than the entire population of some states, South Carolina being one of them. It’s very large in terms of the populations that are within our attachment area. It’s also very diverse.
Interestingly, there’s no single majority population within Los Angeles county, which I think is really reflective of the national trends across the country, as there’s more diversity within our populations, there’s less of a minority, majority of grouping.
Our populations include Hispanics, African Americans, and several diverse groups from Asian American communities.
Knudsen: You’ll definitely have plenty of opportunities to tell us more about your catchment area as you go along. In fact, I’m definitely going to ask about that. Dr. Hudis?
Hudis: Thanks for having me. It’s really a pleasure to join you today. My name is Cliff Hudis, and I am the CEO of the American Society of Clinical Oncology, which is the largest professional society for cancer care providers and researchers in the world. I am by training, a medical oncologist, and I spent, really, almost three decades treating breast cancer in New York city.
Since 2016 I’ve been full time at ASCO. We are not a cancer center, and so I can’t answer the catchment area question. However, I would just say the following. What we actually are responsible for is in a way the broadest catchment of all, because our 45,000 members include one-third who are working outside of the United States. And maybe one of the single biggest and paradoxically addressable problems that we face collectively is disparities in outcome and lack of equity.
I say that because it doesn’t require huge investments in cutting edge science to actually close many of the gaps that I’m sure we’ll talk about in terms of equity.
We are very, very focused as an organization, especially in the last few years, but over our entire history, on this issue. I’m sure we’ll talk a little more about it.
I’ll just close by saying, one distinction of course, is we’re focused on supporting the caregivers, the professionals who provide care. We’re very focused on giving them the deep insight, understanding, and tools they need to address this. The effect of our doing that should be that patients do better.
Knudsen: Thank you so much, Dr. Hudis, really appreciate that. And Dr. Willman?
Willman: Good evening, Dr. Knudsen. Good evening, everyone. It’s a real pleasure to be with you.
About nine months ago, I left the cancer center I originally helped build at the University of New Mexico, which served the entire state of New Mexico, and moved to the Mayo Clinic. Within the United States, we have three large catchment areas, and the exciting thing for me, is they’re very different.
In Rochester, Minnesota, we have the destination Mayo Clinic Medical Center that many of you are familiar with, but we actually have a network of 70 hospitals and clinics through the upper Midwest. That’s through Minnesota, northern Iowa, and Wisconsin, that serves predominantly a rural population with significant unmet need.
Throughout that population are really interesting groups, particularly of Somali immigrants and Hmong, which many of you are familiar with in the twin cities, as well as several Indigenous tribal nations and communities.
In the Southwest in Phoenix and Scottsdale, Arizona, we have a significant population of Hispanic and again, multiple American Indian nations, as well as a very large African American community. And then in Jacksonville, Florida, we have a nine county catchment area extending down towards Miami and up to the Georgia border that is predominantly non-Hispanic white, but 30% African American, about 18% Hispanic and again, a significant Indigenous component.
What we’re really doing, and we’ll talk through this evening I’m sure, is figuring out how to really create access to those populations to Mayo Clinic, but also how to bring care and clinical trials to the patient across those geographically diverse catchment areas.
I’ll be very excited to talk about that later. Thank you.
Knudsen: And that’s terrific. And that in fact is the theme of tonight. There’s so much to address when it comes to gaps in health equity and the drivers of cancer disparities. Our focus today is on advocacy and access. So maybe I can just say a couple quick words about the American Cancer Society, so we have everybody’s foundationally level set.
Like Dr. Willman, I did make a major move from leading, actually, the Sidney Kimmel Cancer Center at Jefferson to go to the American Cancer Society, almost a year ago. It’s almost my anniversary.
We are dedicated to improving the lives of cancer patients and their families. And see, our scope is everything from prevention and screening programs and partnership with many of the centers represented here, all the way through treatment survivorship and in fact bereavement, because the home caregiver is one of our key stakeholders.
One of the things that we do is we of course fund research. We’re the largest funder of research outside the U.S. government. But we also believe that giving access to those breakthroughs, the kind of breakthroughs that come from the centers represented here and from ASCO and their members, requires an advocacy push.
I actually am the CEO of two organizations, the American Cancer Society and the American Cancer Society Cancer Action Network, which is a 501(c)(4). We can and do push for policies at the state, local, and national level that give enhanced access to care. It’s a key tenant of what it is that we do, but we learn from all of the groups that are represented here and try to represent their voice.
We also have a third component of ACS, which is patient support. Filling those gaps in the things that we know allow patients or cause patients to fall through the cracks. Lack of transportation, we provide rides. Lack of housing, we provide lodging in our 31 Hope Lodges across the country, but also many other Hope Lodging strategies.
But of course, also patient education, with which we’re very thankful for our partnership with ASCO to further widen our reach and scope of what both organizations are doing to educate patients and caregivers. And then also again, the screening and prevention program. So I say that only just to level set that each of us come to this conversation with a different lens.
I’d also like to remind those participants joining us that there’s no wrong time for a question. I’m going to put some questions to our panelists, but please feel free to load up questions anytime. We’ll take them as is natural or at the end.
I’d like to just start with talking about a success story. Again, if we’re thinking about this, the lens of advocacy and access. I would argue that we know quite a bit about what the drivers are of cancer disparities and that it’s time to really act on those and measure our ability to close those gaps.
Efforts to reduce cancer disparities through advocacy and or community engagement—they’re not new. We know we still have far to go, but I’m hoping that each of the panelists here can just give me an example of something that actually has worked to move the dial in your unique sphere, if it’s a catchment area, or for you, Dr. Hudis, in the incredible scope that you have, the global scope, through the oncologist across the world. Dr. Hudis, do we maybe want to start with you?
Hudis: Thanks very much. Forgive me, I’m going to give maybe a little bit of a long answer because this is a success and it relates beyond that even to why I’m in the job I’m in, and why I am less cynical about the world in many ways today than I might have been 10 or 15 years ago.
A fundamental requirement under the Affordable Care Act, which many of you will remember, is that clinical research patients enrolled in clinical research trials should have their routine care covered.
It’s a very straightforward requirement and all commercial insurers and Medicare, the world’s largest insurer, were required to adhere to it, but because of nuances in how Medicaid plans are administered at the state level, they were exempted from that requirement.
That is one of the most obvious examples of structural racism in the United States right now, at least in terms of access to clinical research, because a disproportionate number of people of color take advantage of the Medicaid, if you will, safety net.
To recap, if you don’t have coverage for clinical trials for that population, then you have an impediment to enrollment. The downstream impact of that observed by all of us for years, was a reduced number of Black Americans and other groups on clinical research trials, which in turn raises challenges about interpreting the data at times and applying it to diverse populations. It’s an obvious and fixable problem.
For 10 years in partnership with you and others, even around this table I’m sure, but others across the medical research spectrum, we pounded on doors and eventually were able to help everyone in Washington see the value of providing the same protections for Medicaid beneficiaries as others.
With that, the Clinical Treatment Act was passed at the end of 2021. Now, we’ve pivoted to enforcement at the state level, which again will require plenty of work, but it’s a concrete success. I expect it to have a pretty rapid impact on who gets onto clinical trials, which is one narrow part of the funnel if you think about all of the work we’re doing.
I want to throw a second one in there, not because it’s worked, but because we’re excited about it, and it addresses the other aspect of diversity and disparities, which is the workforce. So now this summer, for the second summer in a row, we are expanding our oncology summer internship program.
This is a program for medical students between the first and second year of medical school, and they are mentored virtually, but intensively in the month of July mainly, between the two years for a solid month with local and national mentors.
The simple goal is to increase the diversity of those people who are in med school, but are choosing careers in oncology. I will admit that it’s a little bit of a robbing Peter to pay Paul problem for us when the real issue is the entire pipeline, and we’re working collaboratively through the council of medical specialty societies to address that. But those are two concrete steps that I am very, very proud of.
Knudsen: And those are big steps. The access to clinical trials is the access to the most advanced care.
That is a giant leap forward. The need to increase the diversity of the workforce is something I know all of us are working toward in different touch points. I really thank you for taking that on Dr. Hudis.
Hudis: I just have to throw in, one thing that people don’t realize is we had a natural experiment, because there were 11 or 12 states that had increased Medicaid coverage anyway.
We were able to use that data to show that the cost was, forgive me for using a financial term—trivial. The argument could be made on financial rounds, even in those state capitals that are reticent. That’s what we’re all going to have to be doing for the next few years.
Knudsen: Completely agree. And fast forward to what we can do when it comes to things like advocating for reimbursement, for navigation, things that you know close gaps in cancer disparities, but don’t happen yet.
Dr. Willman, what would you like to share with us by way of example? I know you have so many from your two different centers. It’s hard to choose.
Willman: I just want to say something about the training pipeline. One of the beautiful things Mayo does is it sponsors a monthly…this sounds simple, but it’s not. It’s really challenging for an American Indian medical student to enter medical school. It’s a cultural difference. And mentoring many of those students, I’ve found as they enter medical school, their families are proud, but if they lose their Indigenous culture along the way, they’re perceived as not able to serve their community.
It’s a real challenge to enter the structures of our medical training and retain that cultural connection. And so, Dr. Jonathan Baines here runs a national program where he convenes the 87 American Indian medical students across the United States in a conference every month. They form working groups, they share, they meet in the summer. It’s really fantastic.
I really think this whole concept of large and small—I’m very proud that we just recruited in Mayo, Arizona, the first Navajo woman, cancer trained surgical oncologist in the United States. That’s an N-of-1, but it’s a start.
And so this constant, “What can we do to support the diverse students in our graduate or medical school training programs?” I think we have to be creative and innovative, because change is really going to come from them.
The thing I would like to talk a little bit about what we’re doing at Mayo Clinic is really transformation of cancer care delivery, which I think is essential for transformation of decentralized clinical trials. I really believe that COVID has taught us a lot.
As Dr. Knudsen knows, because she chaired our advisory board in New Mexico and will participate in the one at Mayo, that during COVID in our first phase in the Southwest, 70% of the infections were tribal, and 50% of the deaths were Indigenous American Indians. It was devastating. And you start thinking about, what can you do to overcome that?
For tribal communities to save their community, they simply locked down. They didn’t feel it was safe for anyone to leave or come into the community, and then try to mitigate public health measures to just limit infection in a relatively closed community.
That meant our cancer patients in New Mexico couldn’t come for care. So what could we do? And we really began to think about it. There, I don’t think we served them well enough in that short time, but one of the things we’ve decided to commit to take on at Mayo Clinic, is to begin to do advanced care at home.
In the last two years, we’ve done some demonstration projects in Florida with 24/7 contact with a physician and a nurse via remote iPad-like devices, remote patient monitoring, and the training of a whole new workforce, which I think are going to be essential for cancer care delivery of the future. That’s allied health that can go into a patient’s home, set up an infusion, monitor a patient daily. It doesn’t take the most advanced practice nurse and physician if those people can be remotely available.
In the last year and a half, we’ve done 1,500 patients in Florida who were post bone marrow transplant, post toxic immunotherapy, and showed that we could maintain their follow up care in the home environment, perhaps three weeks of in facility treatment to home.
Dramatic reduction in hospitalization, dramatic reduction in the disruption and financial strains on families, and patients loved it, to be able to do care in their home environment. We’ve decided to begin the experiment. This is being funded by the Emerson Collective, the Milken Foundation, and generous donors at Mayo, to really begin clinical trials of doing cancer care at home with chemotherapy delivery in the home environment.
University of Utah’s piloting this, University of Pennsylvania has piloted this. We’re looking at forming some consortia of cancer centers that are willing to do these experiments. If we really show that we can deliver that advanced care at home, I think it cements and creates the foundation for us to do clinical trials in the home environment. Many patients tell us they just can’t disrupt their life to come back and forth and back and forth to a facility for trials. I really believe we’re facing a revolution in how we deliver cancer care.
Will all cancer care be in the home? Certainly not. But if you can reduce that constant back and forth, and come up with models of blended facilities in virtual care, with home treatment, I think it’s a huge thing, which will help us actually move towards health equity.
Because then if we can do that, we can bring clinical trials to any patient, anywhere, and they don’t have to travel. We overcome the geographic barriers. That’s going to take, as Cliff and Karen understand, and we’re going to need their help, a lot of policy changes, a lot of reimbursement changes, a lot of payer and funds flow differences will be different in oncology, but I really think the model—and we hear it in the Moonshot, “How do we get care to a person in their actual home environment?” is the key to overcoming health equity, in part. Thank you.
Knudsen: That’s a really great set of examples. You bring up wonderful concepts of—we already know some care delivery is moving toward home, at least in the terms of follow up visits and the use of telehealth. I loved your concept, Dr. Willman, about also thinking about what is the workforce that’s going to be needed to have that happen.
I know we’ve got a bunch that we want to get to, but I know that there are a number of centers working on this, but also to make sure that the safety and efficacy remains high in the home.
Willman: One of the things we’re doing with Arizona State University, our partner in Arizona, is they have a huge allied health training program. We’re looking at schools of public health and allied health, to really think of what does that workforce look like in the future.
Maybe nursing, maybe an allied health personnel. But I think it’s fascinating to think of what the workforce will look like. I think it’ll be quite different.
Knudsen: You’ve heard two really phenomenal examples from Dr. Hudis and Dr. Willman already about things that they had implemented, which have had a significant impact. Dr. Halbert, what would you like to discuss?
Hughes-Halbert: One of the things that’s really exciting for me about being on this panel and hearing the discussion thus far is that, it really just makes me appreciate the significance and values of work that I and my colleagues have done, which I think have been foundational with respect to identifying barriers and facilitators to clinical trial participation in diverse populations.
I think what my own work has focused on and the work of my colleagues at University of Southern California has really been foundational just to document and describe, and to examine the impact of travel distance, the impact of lack of awareness among patients, the barriers that health care providers experience with respect to integrating discussions about clinical trials and to get delivered with patient care and that foundational work.
It’s exciting to hear Dr. Hudis describe the way in which that has, I think, been transformational in terms of generating the policy, because the policies I believe are based on empirical data.
Along those lines, we have been at the forefront of—I believe and I certainly have some bias, because my colleagues here have been role models for me. I should have said at the very beginning, that I also made a move, about less than nine months ago, to a new institution.
We’re all in a new academic and geographical space. What’s been really exciting for me is to join my colleagues here who have been really instrumental in defining the field of lay navigation for clinical trials.
The work that Lourdes Baezconde has done with respect to establishing promotores programs that really present information and education about clinical trials and lay language, has really been important in terms of moving the needle, and activating patients and bringing their awareness to this space and the importance.
One of the things that I think we’ve also been really informative about is actively engaging patients and the research process through academic community partnerships. That has been the focus of my own work, which I think really has become more integrated into at least the NCI Cancer Centers Program as manifested through community outreach and education as a required component.
One of the things I’m really excited about, thinking about where we are, are the opportunities to use data-driven strategies to identify patients who would have the greatest level of need for patient navigation, particularly navigation to address social determinants of health.
I think hearing about the opportunities for delivering at-home patient care could be informed using data-driven approaches. That’s one of the unique strengths here at the University of Southern California that comes from my Department of Population of Public Health Sciences, but also supplemented with the work being done at our school of engineering and social work.
I think this is a really important time because as I think about it, we are moving to more of a data-driven strategy. I’m not so certain that patients are ready for the move to more of a data-driven strategy, so I think our opportunities are to continue to address issues related to digital health among patients.
I think that as there are more requirements for providers to document unmet social needs, there’s an immense need to help patients better understand what social determinants are and how they’re manifested in different patient populations. That’s the work that we are currently focused on.
Knudsen: Your work has just been incredible, and I thank you for using data to define the problem that we’re trying to solve, and then also assess the roles of lay navigation and others to close those gaps. It’s exactly right. We’ve heard some phenomenal examples of something that did work. Dr. Leader, what say you?
Leader: This is a tough one to follow. This is a tough one, but I’m going to go along with what Dr. Willman was saying, because she was talking about the hospital at home, but as a public health professional, I’m on the other end of the spectrum, and I’ve been thinking a lot about breaking down walls on the prevention side, which is the equivalent of hospital at home on the prevention side.
I’ve been thinking about the things that we’ve been doing about just bringing services to the community. Our health system did COVID vaccines in South Philly taco shops. I mean, why do you need to go into a hospital to get a COVID vaccine? And while you’re there, does your child need an HPV vaccine?
We are doing smoking cessation in churches, and the DMV, and all of the places that people go Monday to Friday and evenings and weekends, and parks, and not expecting anyone really to come to us, because who has the time or the interest when you’re doing so many things.
I think it’s also along that spectrum of breaking down walls, and maybe not hospital at home, but prevention at home, prevention in your community, prevention with your community. Like Dr. Hughes-Halbert was just talking about, with working with community members. We have to be where the people are. We cannot expect them to come to us anymore.
Knudsen: I love what you’re saying, to reverse the expectation. It goes along with what Dr. Willman is saying as well, that the threshold for getting some cancer care done at home is obviously going to be impossible for some modalities, but prevention and screening and vaccination, these are types of things that we can and do get back out into the communities.
These are really wonderful examples of things that did work. And we’re providing benefit here, because what I hope, is that these stories get moved forward into other localities that find an ally or a story that could be used and emulated.
Willman: I think many NCI centers or cancer centers that I know have now gone outside of their facilities through, we’ll talk, building distributed clinical trials networks, but also building points of entry for patients downtown in unusual places.
Through churches, through other cultural and meeting settings where you can go do a screening. And again, I think our COVID testing, as Amy said, is reinforced—that you don’t have to come into the cancer center. Most patients would prefer not to come into the cancer center for these early engagement activities. I really agree on the front end and the back end. I think our delivery mechanisms are really changing, and I think the opportunities for that are really exciting.
Knudsen: And they provide access—just one of the themes. I wanted to just layer on and add a few different things from the ACS perspective.
When it comes to advocacy, the power of advocacy is using the data that Dr. Hughes-Halbert has talked about, in order to affect change. One of the big wins we’ve had over just the last few months is at the state level, to ensure that biomarker testing, in particular for lung cancer, is reimbursed.
We had our first win in the state of Illinois, then took that model legislation—and I’m pretty excited about this—I’m still in the coattails of excitement, because we had it signed in Arizona. Texas, we’re coming for you next. This is one of the things that we do, is to take that information and then move it forward, so patients actually have access to something like biomarker testing. That’s so critical.
One of the questions that’s coming through from our attendees actually has to do with navigation. I think all of us would agree here, navigation is a known entity to reduce cancer disparities, strongly associated with better patient reported outcomes, completion of care, and we would suspect overall outcomes, but they are in short supply.
The question was, “How do you have outreach programs or something similar to hospitals that don’t provide those resources?”
I’m going to start on this one and see what the rest of our panelists think, in brief, about this. We agree 100% that this is an issue. From the American Cancer Society perspective, we actually provide navigation grants to health systems that have a catchment area that we think would benefit tremendously from having a navigator, understanding one navigator can change thousands of lives in a year.
Until there is reimbursement for navigation, we’re in the game of providing those grants. And I think that’s something I hope we can additionally use that data to push for reimbursement for patient navigation for cancer patients and families.
I wonder if we might just, very much in brief, talk about that. What do you say to a health system or a cancer center that is in a community that doesn’t have access to the funds for navigation, or doesn’t have access to the things that are required for clinical trial? Dr. Brawley put a really wonderful note in there as well about not having access to some of the things that would be required to deliver exceptional care. Anyone?
Otis W. Brawley, the Bloomberg Distinguished Professor of Oncology and Epidemiology, Johns Hopkins University and co-editor of the Cancer History Project, wrote the following:
Brawley: Thank you for participating tonight and thanks to each of you for your commitment to health disparities.
I worry that the attention to health disparities and encouraging research in poor populations frequently does not take into account resource limitations of the sites where many poor people get care.
For example, recent pushes to institute lung cancer screening tie up CT scanners and lengthen the line for the CT scanner in safety net hospitals for all its patients. For example, Grady Hospital, a safety net hospital in Atlanta, has 5 CT scanners. A comparable private hospital in Atlanta has 18 CTs and its insured patients can use private radiology clinics.
Long winded statement. Is not the key to reducing disparities making sure all people get equal standard care and one lesson is segregation of healthcare by socioeconomic status leads to inequality?
Willman: I’ll take that, Dr. Brawley. I think you don’t just go into the community. I think many centers, again, are developing gorgeous screening buses, mobile chemo units. It’s like you can deliver some of the activities and infrastructure to engage patients wherever they are, so I agree that…Are all homes suitable for care at home? Could you create a community center that’s closer? Where would you go that people gather?
Throughout Arizona, we have a pastor steward who works through a huge network of Black and other churches serving Hispanic and underserved populations. They have a Health Sunday, first Sunday of the month. They conduct screenings in the church environment and health education programs.
I think the benefit of many of us in the NCI Cancer Centers Program is sitting on each other’s boards and listening to these incredibly creative means by which people are going in to meet people where they are. You’re right, Dr. Brawley, sometimes that takes infrastructure, mobile infusion units, mobile scanners. But I think all the technology is going in that direction more and more. Again, I think it’s achievable.
Hughes-Halbert: I also would just like to contribute to the conversation. I think one of the focal points for our work now has been really to think about ways to create and enhance our community-based referral process for clinical trials.
I think it’s a really tall order because you just can’t go start a clinical trial shop and a single solo radiation oncology practice. There’s a lot of regulatory compliance issues that will need to be addressed.
One of the first things I think has been exciting for me to learn is that oncology providers who are not affiliated with an academic medical center are interested in engaging and being involved in the process. I think it requires, one, understanding what the capacity is for their engagement—is it providing a list of trials and then setting up a referral mechanism? Or are there facilities that are ready and able to be more actively engaged?
One of our initiatives that I’ve been working on developing is creating a community-based oncology network that is separate from the academic medical centers. The vision that I have is that these will be single independent practices that are interested in learning about clinical trials and want to be involved in the process.
And then figuring out the practice-by-practice process. What makes sense of how we can implement the referral process? This is, I think, one of the strategies that I and others have used to open cancer prevention research studies and prevention studies in different clinical studies, but I don’t think it’s going to apply to clinical trials.
Knudsen: I absolutely hear you. Dr. Hudis, your constituency is all of the above. It’s the community oncologist, the academic oncologist. What’s your view on how to enhance the ability of all individuals to have access to quality cancer care? Which I think is what the gestalt of Dr. Brawley’s question is.
Hudis: I’ll answer that with two related components. The first is, as everybody knows, you are what you measure. One of the things that we do of course is try to support high quality cancer care, which means measuring certain components of care and holding ourselves accountable.
One obvious point is, if you do that broadly in all populations, then you will, I hope, bring the necessary resources to be able to close those gaps you identify. We’ve gone a step further and we currently have a pilot project of an alternative payment model, the ASCO Patient-Centered Cancer Care Certification program or APC4.
Of the seven domains that are assessed with metrics, one of them is actually entirely focused on diversity, and that includes access to care and culturally sensitive care, as well as access to clinical trials. On the second, or looking at this a different way, early on in this effort, we identified that no one institutional organization necessarily has the broad reach necessary to really solve this problem. And we would never be able to do it ourselves.
For example, we have our TAPUR studies at 250 sites. It has great diversity, matches the makeup of America, but it still represents, obviously, a modest penetration. So we partnered with the Association of Community Cancer Centers in a multi-year project that is very, very focused on two specific things. Number one, what are the barriers to enrollment in clinical trials? And by extension, that means care—that’s the point you are making—at various sites, for people who come from historically underserved groups.
The second component of it is what can we do about it once we identify those? And I say that because I think one of the answers will be navigators, just as we’ve been talking about, but not the only answer. There’ll be other resources needed as well, but we’ll approach it with data.
And I’ll draw your attention to the fact that there will be some publications, both on the issue in general of disparities and specifically on this collaboration in the months ahead, which I hope will be informative for everybody.
Knudsen: That’s fantastic. It is such an important effort and I look forward to seeing and learning more. In the meantime, ACS in conjunction with NCCN and another organization has put forth an equity scorecard, voluntary use, for cancer programs and health systems to use so that they have, to Dr. Hudis’s point, something to measure themself against. What’s my goal? What does equity look like when it comes to KPIs? And how do we benchmark compared to other organizations? I think that must be a path forward for the future.
Dr. Leader, what about you? You are at a heavily distributed system, just like Dr. Willman, but what are your thoughts when it comes to ensuring that there’s equitable cancer care for as broad a reach as possible within a catchment area?
Leader: Well, I had two thoughts, and they both were slightly touched on here, one around the navigator piece. We know there’s a lot of formal navigator training programs and even community health worker certificate programs, but Dr. Hughes-Halbert was alerting to promotores and lay workers—and references to pastors from Dr. Willman.
Community members can be trained in a simple way to do some of that work. We know that navigators or health workers who share the lived experience of the patient or family they’re working with are much more effective. I think we just have to broaden our scope of who. It gets back to that workforce discussion as well. Who’s in the workforce and who’s representing and who’s helping and who’s providing access?
And then I think the other piece is COVID has really blown geography out of the water, and so anyone can be anywhere doing anything, essentially. When we think about telehealth, and telemedicine, and telenavigation, certainly there’s digital literacy and digital divide. Now, there’s an entire field of digital navigators that are cropping up during COVID. But I think that we are thinking differently about access and those kinds of points as well. I think navigators is a great point and I think we have to think very broadly about what a navigator is.
Knudsen: I think that’s exactly right. And the Navigation Roundtable is really a wonderful place where this is discussed, and very thankful for all the stakeholders that work with us there.
Telehealth, as you talked about, and the blowing up of geography, and to take Dr. Willman’s phrase of “getting care at home,” and yours of “reversing the expectation,” and Dr. Hughes-Halbert’s, “let’s engage the community and use navigation differently.”
It’s the case that telehealth, if that’s a vehicle, requires an advocacy play for us to ensure that there is a potential that navigation and digital navigation through telehealth can be maximized as long as there is a reimbursement strategy or a support strategy. Maybe we’ll close this topic by just asking Dr. Hudis what his views are and how we might achieve that, and how we might work together toward that end.
Hudis: The discussion went on long enough that I’m not sure what question I’m answering exactly.
Knudsen: Telehealth, digital strategies, reimbursement, digital health.
Hudis: Digital health. So look, that’s a huge issue as you know. In fact, it’s timely that we’re talking about it because I saw the news this morning, and there was actually an agreement from a number of internet providers for reduced rate access for people at low income.
That’s really the starting point. Right now, my understanding is that Americans pay more for data and access than many other people in developed countries. That of course contributes to the divide. We’ve been working both on that side of the access equation, but also on the extension of the emergency rules that allowed people to utilize telehealth.
Many people are not aware of what a burden it was, historically, to utilize telehealth, and the ways that burden is coming back. The anecdotes are more valuable here than the data. People have to drive 50 miles to get over a state line so that they can then make a telehealth call with somebody who’s 200 miles away, and have it actually be reimbursed.
That’s the kind of story that has you scratching your head all day long. And that’s happening all over America in a spotty and inconsistent way. We’re working along with many others to establish an extended role for telehealth and a standard approach to it, which I think is really what you’re asking about.
Knudsen: We embrace that strategy as well. When I was still back at Jefferson, very first question asked, as I know you know, Dr. Hudis, is what state are you in right now—so that we could actually deliver telehealth.
Hudis: And the inefficiency, because it would change from month to month, also.
Knudsen: We can make life easier. I think this rolls into my last question. This is a really important one actually, because we’re at this pivotal moment in time where President Biden has reignited the Moonshot.
I believe that President Biden and team are inviting commentary from leaders across the country, of what are the things that you would like him to focus on in the Moonshot. And the Moonshot goes well beyond access and advocacy.
What guidance would you give? Let’s just have everybody pick one so that we can get to questions as well. What guidance would you give the president for actions that are within his span of control that could give a measurable impact to Dr. Hudis’ s “you do what you measure”. Dr. Leader, you want to start?
Leader: Well, I think I have a running theme around breaking down walls and that kind of thing, so mine’s probably not all that surprising.
I would say you need a community advisory board. You need community members and you need stakeholders at the table with you. Because we can design clinical trials all day long, and if they’re burdensome to patients and they don’t want to enroll in them, we’re dead in the water.
We can design interventions that aren’t culturally appropriate and no one wants them, and so, unless you really have a group of community members and stakeholders walking hand-in-hand with you, it won’t be effective. It might not be the vision, but it’s who he needs at his table.
Knudsen: I mean, that’s what we’re looking for, right? Actionable items, an actionable item is development of a community advisory board to guide the Moonshot process.
Knudsen: Excellent. Dr. Hughes-Halbert?
Hughes-Halbert: Thank you. I would focus on two things.
One is, with prospective clinical trials, I believe that there needs to be guidance and a requirement that all patients be screened for clinical trial enrollment. And that there’s a requirement to document that screening process took place. I think that’s critically important, because in some of the work that I did at my previous institution, the common theme is that many patients, regardless of if they were Black or white, were just not asked.
Whether or not the screening—they were not asked because they didn’t meet the criteria. They weren’t asked because they had other indicators that make them not eligible. I think the fact that it’s not documented anywhere makes it challenging to say what policy or intervention’s needed from that point on.
I think documentation of the screening process is required. I don’t have a specific concrete recommendation, but I think as telehealth continues to evolve and become more common, I think that it’s essential that there be a standardized process for ensuring that patients have sufficient digital health literacy.
How that can be done, I think there are lots of models for how to do that effectively. But I think that there has to be a new way, rather than just relying on patients to activate their patient portal—and then think that patients will be able to access and use the information, and the way that it’s intended, is unrealistic.
Knudsen: Well really, almost becomes essential as we’ve gone through the theme today about the change of cancer care delivery and what we know is coming, and just the change in healthcare delivery overall, even if it’s a discussion about someone’s screening result. Having digital literacy basics will be important moving forward if we’re going to ensure that everyone has equal access to health equity. Dr. Willman?
Willman: I’ll pick up on Dr. Hughes-Halbert’s comment. I would say something similar, but slightly different. Digital literacy, but we must assure there isn’t a digital barrier, and that we don’t have digital deserts.
One of the critical things for what I see as a coming healthcare transformation, is that digital broadband sufficient for these interactions is present all across the United States. I know Indigenous kids who went to school during COVID by driving to the McDonald’s parking lot, so they could get internet access. That’s our world. We don’t have to go to other countries to see incredible health inequities.
The last thing I leave us with though, is I really am proud of the FDA for releasing new guidelines to require much more diverse representation in clinical trials, but I want to follow Chanita. I think that should have more teeth. I think if you are in a region, you should be really held to those distributions of race, ethnicity, urban, rural, and special populations, and really have to set the bar to your approvals to that. We just need to be tougher about that.
But a big barrier we see, and I saw in the Southwest and I see it at Mayo, in terms of trials, is the comorbidities so often exclude patients for trials. Our physicians always say, “It is not necessary to have all of these exclusionary comorbidities.” Because you get a patient really excited about participating in a colorectal or a breast trial, and they’re excluded. That’s the most devastating news you can give to a patient. GI screened you, we think this is a great treatment. Well, but you know what? You can’t participate. You have diabetes, you have this heart problem, your GFR is this. I think we’ve got to stop this.
We’ve allowed our trial sponsors to super-select our patients. It needs to go away. We need to do trials in the real world with real people. And I would just love to see the FDA and the NCI and ASCO, whatever you can do, and ACS, to really deal with the issues of comorbidities that limit trial participation. We talk a lot about it, and I haven’t seen us achieve real standards there, and getting rid. I think most physicians can be trusted to manage their patients in most settings.
Knudsen: I love these very tangible action items that could be incorporated and benefit in the short-term. Just all really fantastic. Dr. Hudis, what would you say to President Biden’s Moonshot team?
Hudis: Well, I think you were suggesting that we don’t ask for more money, because you use the phrase, “Those things that are under his control.” But I can’t help but point out that money is needed and it’s needed in two ways.
Number one, to maintain the investment in science and scientific and technology development that ultimately really does lead the way, and which has been a uniquely American commitment, really, from the end of World War II until the present. I have to call that out. But there’s a more tangible one.
As you know, within the Moonshot, there is a call for return to screening. It’s driven by, of course, the COVID years now and the loss of access to screening, which had a differential effect on disadvantaged populations. And I’m not going to debate the utility, necessarily, of individual specific screening programs, but I will point out that if you conduct screening, which is a definite push of the Moonshot, and you start to make diagnoses, you have to have a way to treat those patients.
I think that all too often, everybody thinks that the solution is to get everybody into screening. And the very people we’re most worried about and talking about today, are the people who then face interminable waits for appointments, delays for follow-up biopsies, and so on. I think it’s an ethical imperative that we build the system to receive those patients.
I will provide here a shout out, near Philadelphia, in Delaware, when Steve Grubbs and his colleagues proved that it was cost effective for the state to invest in supporting treatment for colon cancer after making the diagnosis through a state supported program—they narrowed, and I think nearly eliminated, race-based disparities in colon cancer. I think this has to be cost effective. I think we have to make the argument for this. And ultimately, it’s really an issue of broad healthcare equity.
Knudsen: I could not agree more. It’s got to be more. Screening was not what it should be before COVID. In the COVID world, we’re certainly not where we need to be in having made up for screening, but it’s got to be more than just the screening.
It’s to and through, and ensuring that patients have a way to get treated for someone who has a positive scan. That’s really where so many individuals are left hanging. Part of that’s navigation. Part of that’s reimbursement and access to healthcare coverage. Part of it is education. Part of it’s digital education. We’ve touched on a lot of the things that will help close that gap today.
You’ve heard incredible examples from this group of things that have worked in their individual areas to enhance health equity. You’ve heard what the recommendations are of this incredibly talented panel for the Moonshot program moving forward and things that we hope to see.
It would be interesting to meet a year from now and see where we are, and one year into the Moonshot, of what actually has come.
Knudsen: I do want to just spend the last five minutes that we have getting to some questions, and the first one is a really important one.
There is still, as we all know, some mistrust in the healthcare system or healthcare world when it comes to clinical trials, yet, we all know that this is the most advanced form of care. What strategies have you used in your own systems, in your own work, to convey the importance of clinical trials as a key component of achieving cancer care equity? Anyone?
Hughes-Halbert: I’ll start by saying that one of the first strategies, I think, is to really be proactive in one, acknowledging past and current abuses. I think part of the issue with mistrust is that so often there’s a centering of discussion—but there really are examples from where we are right now, present day, that contribute to mistrust and distrust of the healthcare system and providers, and everyone engaged in the clinical research enterprise. I think the focus on patient and community engagement at the cancer center level, at the individual study level, has really been important for addressing mistrust and distrust.
I think there’s an important role for workforce diversity to play in addressing mistrust and distrust because of the shared experiences that prepares some greater opportunity for patients to voice concerns, to ask questions, and to feel more confident in their decisions about whether or not they participate in the trial.
And I was going to say that some of my early work was on decision-making about genetic testing for inherited breast cancer testing. One of the key tenets of that work is, our goal is for patients to make an informed decision about whether or not testing is right for them.
I think that in some ways it’s been overshadowed in clinical trials. I think there’s such a priority and importance on ensuring equity and access, but I think we have to also consider if someone decides not to participate in the clinical trial and they made that decision fully informed, aware of the options that were available to them, then that’s a good decision, and we respect that.
Knudsen: An informed decision is really, I think, the most important one, but I think you raise incredible points about transparency and just ensuring that the patient truly understands and their caregiver understands what’s being asked, what the potential advantages and risks are. Anything more to add from the other panelists of things that they found particularly effective?
Willman: Can I just say navigators and patients who look like me, who have a lived trial experience in our community and Indigenous communities, it’s also seen as a form of health equity, that I deserve to have my cancer care delivered in the context of a clinical trial.
It’s not a mistreatment, a misconduct. I deserve that level of care.
And I agree with Chanita, it’s about that’s the best care option—and I deserve that. I think that word “deserve” is very powerful. And having people who are diverse patients, who can speak to that to their own communities, in my experience, has been the most effective. It doesn’t matter what I have to say. It matters what that patient has to say.
Hudis: I would just want to add that those comments from Professor Hughes-Halbert and Dr. Willman are spot on.
The underlying theme to me is engagement and patients, meaning having the time to build relationships and stick with it, because it’s trust that underlies all of this in the long run. And I will say, Karen, this is one of the reasons we were so excited to partner with ACS, as you mentioned at the beginning, it was to interface with the patient community and provide that cutting edge knowledge that we thought wasn’t getting appropriate visibility, but you can bring through ACS.
I think the more we, with respect, engage every population and take the time to talk and teach and listen and learn, the higher the probability of success in the long run.
Knudsen: I agree. It’s all about empowerment of patients and families. Dr. Leader, anything more to add on this topic?
Leader: I was just going to echo that comment of transparency as well. I think everything that Dr. Hughes-Halbert said was spot on too about historical inequities. But I think as a scientific community, we have kept the science very secret for so long, and that has just bred a sense of mistrust of, “What’s going on there? What are they doing?” Opening our cancer centers to communities and peoples to see what we’re doing, I think will help as well.
Knudsen: Without question, the engagement of the community is key. Well, I know we are at time.
I want to thank everyone for participating in the panel. I apologize to those of you that have questions we couldn’t get to. If you’re interested in advocacy, please contact me, Karen.Knudsen@cancer.org and I can try to guide you into some advocacy programs with our own organization or with others—so, really important to have voices heard.
Thank you so much today for this panel. I do look forward to hopefully convening again next year and seeing where we are and what advances we’ve made in getting greater access to care for cancer patients and families, and using advocacy as a way to get there. Thank you so much everyone. Really appreciate it. Thank you.