What Do Health Equity and Quality Care Mean for Cancer Care?

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the voice of the world's oncology professionals. 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. Guests’ statements on this podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so data described here may change as research progresses. Brielle Gregory Collins: Hi, everyone. I'm Brielle Gregory Collins, a member of the Cancer.Net content team, and I'll be your host for today's Cancer.Net Podcast. Cancer.Net is the patient information website of ASCO, the American Society of Clinical Oncology. Today, we're going to be talking about what health equity and quality care mean in the context of cancer care and discuss highlights from the 2022 Quality Care Symposium in these areas. Our guests today are Dr. Fay Hlubocky and Dr. Manali Patel. Dr. Hlubocky is a licensed clinical health psychologist with an expertise in psychosocial oncology and a health care ethicist at the University of Chicago. She's also the Cancer.Net Associate Editor for Psychosocial Oncology. Thanks for joining us today, Dr. Hlubocky. Dr. Fay Hlubocky: Thank you, Brielle. Hello, everyone. So wonderful to be with you all today. Brielle Gregory Collins: Thank you so much. And Dr. Patel is an assistant professor at Stanford University in the division of oncology and a staff thoracic oncologist at the Veterans Affairs Palo Alto Health Care System. She's also the Cancer.Net Associate Editor for Health Equity. Thanks for joining us today, Dr. Patel. Dr. Manali Patel: Of course. And thanks for hosting both me and Fay to discuss this really fun topic. Brielle Gregory Collins: Of course, we're looking forward to it. Before we begin, we should mention that Dr. Hlubocky and Dr. Patel do not have any relationships to disclose related to this podcast, but you can find their full disclosure statements on Cancer.Net. So to start, Dr. Patel, can you first describe what the term health equity means and how it relates to cancer care? Dr. Patel: Great question. Nice one to start off this podcast. So I think we've always been really focused on health disparities. So I love that you've asked, what is health equity? Health equity is really reframing disparities or differences in cancer outcomes with more of a justice lens. And the full definition, which I love from the Robert Wood Johnson Foundation, describes health equity as meaning that everyone has a fair and just opportunity to be as healthy as possible. This means that you remove obstacles that may impede people's ability to attain their highest health, such as poverty, discrimination, and the consequences of such powerlessness, lack of access to good jobs, having fair pay, quality education and housing, safe environments, and health care. And as it relates to cancer care, it means that everyone has a fair and just opportunity to be as healthy as possible, even with a cancer diagnosis. This means having a fair and just opportunity to receive all of the evidence-based care that we know makes a difference, as well as high quality care that matters from screening to the end of life. Brielle Gregory Collins: Thank you so much for explaining that. And Dr. Hlubocky, talking about quality care, what does quality care mean in the context of cancer care? Dr. Hlubocky: Thank you, Brielle. So according to the Institute of Medicine, now known as the National Academy of Medicine, quality care requires the safety, the efficacy, and the efficiency of care delivery. It's also timeliness and a patient-centered approach that's coordinated by an inter-professional oncology team with the integration of evidence-based or research-based practices to continually improve cancer care. It's a very comprehensive, a very value-based form of care that adheres to evidence-based guidelines. It assures the treatment of symptoms, and the side effects of cancer, and the cancer treatment. And it's also coordinated care with strong communication amongst all clinicians and patients, which might involve a written care plan that details all of cancer care, the care in a clinical trial, if that's a potential option for patients. And it also involves shared decision-making, including honest and frank discussion about prognosis, the intensive therapy, patient's values, and also preferences regarding care. As well, it's a research-based support for psychosocial needs. It provides palliative care throughout the course of treatment from diagnosis through the end of life, and end of life care involving hospice. So quality cancer care was first coined by Dr. Joseph Simone, who was a pediatric oncologist and was the first, really, to advocate for quality-based cancer programs in pediatric oncology for both leukemia and lymphoma. And he was the one who truly started this movement that involves centering on every patient with cancer and every care program. So this year in Chicago at the Quality Care meeting, these interdisciplinary experts really highlighted the latest quality improvement research, as well as guidelines that helps us to improve the quality of cancer care from diagnosis through treatment to survivorship, and again, through end of life care. Brielle Gregory Collins: Great. Thank you so much for walking through that. And yeah, we're excited to discuss more research from the Quality Care Symposium, too, a little later in this podcast. Dr. Patel, we know that health equity and quality care are linked. So how do health equity and quality care relate to better overall cancer care? Dr. Patel: Great question. I love the fact that you brought up the Institute of Medicine's definition of quality because in my mind, doing work in health equity for over a decade now, really looking at health equity and quality, I've always thought of them as being intricately linked. But what I loved about the ASCO symposium and now some of the word choices that we're using, really does think that equity is not just a single component of quality, which previously it was. And now, the Institute of Medicine moved equity into being more of a cross-cutting dimension where it is an underpinning of all aspects of what Fay just outlined, in terms of effectiveness, safety, timeliness of care, etc. I think equity, in order to actually achieve high quality care, especially in the cancer realm, health equity has to be a fundamental component of such care. And so now, I'm going to take a step back because I think for years, we've been looking at equity as more of an issue of just access. But you heard in Fay's definition, and the definitions that are out there, that exist for quality, that equity and quality are not really just about access. In other words, differences in cancer care and inequity in cancer care is due to the fact that some populations, such as racial and ethnic minorities, for example, have poorer access to care than others. That is true, but this is just one factor, and it's not the only factor. Even when access is equal, we know that some populations tend to receive lower quality cancer care than others, be it by race and ethnicity, be it by socioeconomic status, gender identity and sexual orientation, or even age. So really, equal access does not equate to equitable care. What's nice about linking quality and equity and this intricate linkage of the 2 means that you're addressing the effectiveness of the care. You're ensuring that, when you think of quality in terms of equity, the outcomes you're thinking about in terms of race and ethnicity and actually moving towards considering, for example, what different things mean to different patients in terms of effectiveness, safety, timeliness of care, and ensuring that not only are people receiving the care, but that they're all receiving high quality care. I hope that makes sense. Brielle Gregory Collins: It absolutely does, and I appreciate you, again, walking through that and just explaining how those 2 are connected. And I want to go into some of the research that was presented at this year's Quality Care Symposium. So Dr. Hlubocky, can you introduce some of the key studies or themes that came out of this year's symposium that addressed quality care? Dr. Hlubocky: Thank you. Absolutely. There were several key quality cancer care themes that had to illuminate the cutting-edge research that is being conducted today and the advances by noted experts in the field, specifically at the symposium. The first being financial toxicity, or financial hardship, and problems that patients may encounter that's caused by the cost of treatment. This was identified as a major thematic session, where multidimensional approaches to addressing financial toxicity were presented, things like screening interventions, survivorship advocacy, and policy. Additional interventions to address financial toxicity were presented. And Dr. Ezekiel Emanuel, from the University of Penn, he's Vice Chair of Global Affairs, but a well-known ethicist in the country. He actually launched the meeting with a phenomenal keynote that was entitled, “New Directions for Cancer Care in the U.S.: Building a Transformational Research and Development Ecosystem and Healthy Payment Landscape That Better Supports Our Patients.” We then heard about how screening tools add value to identify patients with financial hardship and how to best implement them. We learned what other cancer centers have implemented regarding financial toxicity programs, and how any cancer center or any practice can implement these tools and interventions aimed at helping our patients with financial toxicity or hardship. Additionally, smart solutions like leveraging digital health tools to improve cancer care delivery, this also included a study on how health technology can be utilized to improve the delivery of cancer care today and the future, which evaluated the use of web versus mobile devices for ePRO reporting [electronic patient-reported outcomes reporting] and severe symptom responses. I believe it was 6 cancer centers. Symptom monitoring and what we refer to as patient-reported outcomes was also a key topic. And we heard about severe symptom reporting in medical oncology patients at a community center that was assessed through a platform, as well as severe symptom reporting and surgical patients assessed through an EHR-integrated ePRO questionnaire, again, at 6 centers by Dr. Wong at Dartmouth. Physical impairment, pain, and fatigue were top concerns that were identified, and Dr. Wong and her team also identified predictors of severe symptoms so that population surveillance should be considered a priority. And she also encouraged that interventions are really needed to address common severe symptoms and that these future studies should define what is the most effective migration strategies for these symptoms. Successful integration of health care and health services research interventions in oncology was also another thematic session, and it offered a framework for leveraging health care services research to improve cancer care delivery across the diverse populations. And we know that leaders in the field discussed a variety of these interventions, including hospital at home and geriatric assessment. For example, guidance and geriatric assessment and clinical practice was also presented by the former Cancer.Net geriatrics editor, Dr. William Dale, which included a need to use to inform treatment decisions which would systematically change cancer care delivery. And finally, an interactive roundtable on rethinking advanced care planning was also held here. These panel experts examined the current model of advanced care planning. What is the merits? How can it be reimagined? And how do we measure outcomes and tools, and what is the impact on caregivers? And finally, regarding the smart solutions, leveraging the digital health tools, we looked at big-tech solutions to common care delivery obstacles, leveraging electronic health records to support treatment and achieving equitable screening. Especially, for example, lung cancer was discussed. I think that hit most of the studies that were presented. What do you think, Manali? Did I miss anything? Dr. Patel: You did a really nice job of highlighting all of them. There were so many exciting studies that were presented, and it was really a fun meeting not only to spend time with you, Fay, but then also to meet up with colleagues and to see the cross-cutting research across both equity and quality, and the linkage between the 2. On that note, I think I can talk about the different ones that were kind of more focused on equity. And the opening theme was a really nice theme about the structural barriers to equitable care delivery. And again, when you think about quality and equity as being intricately linked, if people are unable to get the highest evidence-based care, providing care-- we can provide care, but if it's not evidence-based care, then are you really moving the quality needle forward? And so the opening theme really looked at, I think, reframing and shifting our views of the focus on the patient as the reason for disparities and inequities to really thinking about structural barriers and barriers that may exist not only at the policy level, but also barriers that exist just in the way that our system is set up with structural racism, ways to overcome structural racism through system-level changes. Another theme that I thought was really nice that was highlighted was the impact of social determinants and complications from social determinants of health on being able to achieve the highest quality of cancer care for patient populations. And a lot of studies looked at associations of the impact of housing and other health-related social needs such as transportation aspects, which we all know are a clear indicator and a clear barrier for some in terms of being able to achieve the highest quality care. We also saw a lot of abstracts both in the poster discussion, as well as in the main plenary session, including Dr. Otis Brawley's presentation that talked about this very question really here that you're asking us, which is about the linkage between quality and equity. And that entire plenary session that I would love for others to go back and to listen to had some very key poignant takeaways about the linkage, and how that has changed and morphed over time, and also, how our view of equity and this intricate linkage-- again, I know I keep saying intricate linkage, but that's because that's what it is. But this component being more of an underpinning, looking at quality from a whole, from the lens of equity, he did a really nice job of shedding light on this topic. Brielle Gregory Collins: And Dr. Patel, I do want to ask one follow-up question. So you mentioned this term, social determinants of health. Can you just briefly describe for our audience what that term means? Dr. Patel: Yeah, very good question. And I think there's a lot being done at ASCO, but also at the national level. And the social determinants of health are these structures that are set up within the way that our social system is set up. So things like housing, transportation, food. Interpersonal violence, for example, is one kind of health-related social need that can come out of not having access. But these are the social structures that are set up that determine how healthy you can be. So if you take a step back and you think about cancer care, for example, and you look at individuals that may not have a home and may have homelessness, and you think about how our treatments may impact. So many of our treatments may cause people's white blood counts to lower during periods of their treatment where we hope they aren't living in congregated areas such as homeless shelters, for example, where they can then become really infected with what we call opportunistic or other infections during treatment. How the homelessness situation impacts someone's health. We know that it not only impacts their ability to receive and our ability, as clinicians, to provide the highest evidence care for individuals living in those situations, but it also impacts other health. And we know that homelessness really does impact an ability for one to be able to be as healthy as possible. The same with food. We know that the pandemic and some of the work that we've done, Fay and I together, as well as others, have looked at the impact of the pandemic on food insecurity. Now, food insecurity has been a large issue for people, and a determinant of health is what I call it, a social determinant of health. But we know that food is medicine, and for people during the pandemic, we saw food insecurity significantly rise due to wage loss, due to other issues regarding income loss. And that then led to being unable to be able to eat as healthily as possible. If you don't have access to the right food, we know that that makes a difference in terms of your ability to make it through particular cancer treatments. For example, if you're unable to get enough magnesium, calcium, potassium, that can influence what we call your electrolytes and your labs, and make it very difficult for us to give treatment. But even prior to a cancer diagnosis, we know that food determines how healthy you are. And if you're unable to attain food sustenance even from an early age, that can really lower your ability - if you go back to the definition of health equity - your ability to be as healthy as possible. And these social structures then, which I loved about the ASCO Meeting this year, is-- I've been going to the ASCO Quality Meeting for many years and have kind of been-- Fay knows, right? We've kind of been like these lone people out in our little group of people that come to the ASCO Meeting and the Quality Meeting. We all speak the same language, but there was a real emphasis on interventions this time around, and how can you overcome what, traditionally in the medical realm, we don't think of as being linked with health or at least in oncology? I think primary care physicians and pediatricians have been focused on this for many years. But for us, in oncology, it hasn't really been first and foremost as part of our problem that as oncologists, if we know that people cannot get to our clinic, we need to intervene on transportation. But these other issues like homelessness and food insecurity and poverty really are also in our realm as well in terms of impacting one's ability to achieve health equity. Brielle Gregory Collins: Thank you so much. That's a really helpful explanation. And too, I want to get into-- there was all this great research to come out of quality, but I want to talk a little bit about what changes are happening in cancer care to improve health equity and quality care. So Dr. Hlubocky, we can start with you. Can you talk a little bit about some of the changes you're seeing happening in cancer care to improve health equity and quality care? Dr. Hlubocky: Well, I love what Manali has said about coming together first as a community at the meeting, where we're not just friends and colleagues, but we're collaborators and mentors to one another, and we are stimulated by one another's presentations to truly design research that optimizes care for every patient everywhere. And I think that's now the priority in that. And it's important to learn about some of the best practices that can help clinicians really reshape strategies and make key decisions to improve, as we said, that quality, that safety, and the efficiency of cancer care delivery. Certainly at ASCO, we're doing quite a bit with the QOPI Initiatives, the Quality Practice Initiatives, where every cancer center or practice has access to measures that are evidence-based, so we can identify what are the key symptom issues that patients are experiencing so we can use these measures. And ASCO has really been a wonderful partner for many practices along the way. So it's really, really seeing this research is such a motivator. And I wonder, Manali, what additional highlights stick in your mind as to what is the future when it comes to cancer care? Dr. Patel: Yeah. I mean, that's a fantastic question. I love this question, Brielle, that you're asking us to reflect on. As I mentioned, I really do think that there's been a real shift. And sadly, I think it took George Floyd's murder to link us to the huge discourse. Now that's happening not only in our own small circles locally, but also at the national and policy level, that equity, more so than I've ever seen at a meeting, even at our annual meetings in ASCO, has really become the forefront. And I've started to see meaningful change of not just talking about equity, but also thinking about interventions. I certainly, we think that we're seeing more discussion about equity, more awareness of the importance of equity. The question that you just asked about social determinants of health now is now part of our vernacular and our lingo now, which is wonderful, that we don't always have to describe the impact that social structures and our systems set up for us to be either healthy or not. But what we're also seeing are more dollars being put into incorporating equity, not just research dollars. I think what we saw at the ASCO Quality Meeting was there's a lot of research in this area and there are a lot of like-minded folks that are collaborating together to try to overcome this. But there are also programmatic dollars. And I think even within ASCO and within other organizations that are traditionally medically focused, there's a highlight of equity as part of the mission statement now, which is hugely different than where we were just a couple of years ago when both Fay and I were on the Health Equity Committee, that was not part of the mission statement. So the fact that that's being applied in a visual statement is really different. We're also seeing policies being made both at the local level. For example, in California, lots of policies being made for MediCal organization.  We're starting to see more of a reflection of inequities in care and really, interventions to try to move that on the ground, both within clinics reporting on data, like Fay mentioned, I think is extremely important. A basic step, yes, but one that just has not-- it's been lacking. We conducted a project that was led by Lori Pierce and others through ASCO that looked at just who are the people that are coming into your center? And how many are being enrolled on clinical trials? And what are the race and ethnicity and income and social status of these individuals? And many centers just are unable to report that because we don't collect data on it. So Fay mentioned that something that does seem very basic now is becoming part of the fabric and there's now more understanding as to why these things are important, and why we need to measure them. And what are we going to do about it? So I really like that there's research happening in parallel where, again, as I mentioned, there were a lot of abstracts that were focused on the association of housing. But at the same time, then you've got interventions that address housing. People that are working with housing authority, or even at the VA, for example, creating safe housing for people during treatment. It doesn't address the whole issue of homelessness, but it does try to band-aid the situation until we have national policy that can provide better housing for individuals overall, or to address some of these issues. And I think that it's been really refreshing-- I don't know about you, Fay, but just for me, refreshing to see interventions that are solution-focused. And what can we take away from these abstracts and really try to implement at home? Or what are some novel ideas that we can do to overcome some of these issues? I hate being stuck in the description paradox of disparities, disparities, inequity, but no real solution as to what we can try to do at home. Dr. Hlubocky: I fully 100% agree with Manali's statement right there. Brielle Gregory Collins: Absolutely. And it's so exciting to hear about improvements being made and the needle being moved forward in these areas. I'm sure it's very reassuring for patients to hear that. And speaking of that, there's so much information in this area. For both of you, where do you recommend patients can go online to learn a little bit more about health equity and quality care? Dr. Hlubocky: Yeah. First and foremost, Cancer.Net. Of course, we have such wonderful content associated with many of the topics that we discussed today, such as financial toxicity, and various symptoms, and psychosocial issues, depression, anxiety, palliative care, end-of-life care. So that's definitely the first stop. As well as the American Cancer Society would be the next one. And the National Coalition for Cancer Survivorship. And of course, the National Cancer Institute, which centers-- they all center on quality care issues, such as those we just discussed today. And of course, I don't know about you, Manali, but really talking also to your cancer team. So that's the first step. But really, I think so many patients are fearful to address some of these issues with the team, [and think that] that we don't have time, and we make time. We make time. Our patients are very important to us, and we really want to optimize care the best that you can. So if any of these issues are a burden and barriers to getting the best care, please reach out to us. There are financial navigators, there's palliative care clinicians, psychosocial clinicians, and many cancer centers, as well as some practices in that. So talking to your oncologist, talking to your nurse practitioner, and they are great resources as the first step to attaining care after you've read some of these resources. Are there others that come to your mind, Manali? Dr. Patel: Yeah. I mean, great question. I love how you brought it back to the local teams. In terms of thinking about resources, I agree, there are a lot of resources that are local. And so ask your clinical teams, but then also other patient advocacy groups may have more information about resources to overcome some of the barriers that some patients are having, particular barriers, just to get general information about health equity. As Fay mentioned, we love Cancer.Net. I mean, I think it's one of the best resources that I've seen. In fact, my mother and my father go to the website pretty often. They are both cancer survivors as well. But there's a nice piece, again, about health equity and how it integrates into all facets of care and all facets of one's journey through cancer. I think, as I mentioned before, the Robert Wood Johnson Foundation really has nice resources on health equity and also other web-based portals that you can delve into. So there's as much information as you want to learn about health equity, and also solutions focused more on the general picture that's maybe not related to cancer, but again, is linked to cancer. The American Public Health Association is also another really nice website that has a broad swath of how health equity and the issues that we talked about today, the social and economic structures, impact one's health overall. Again, not cancer-related, but everything is cancer-related. And so you can bring back some of those take-home messages to how it may impact one's cancer care. And then I really love-- for me, personally, the University of California Berkeley is a nice, free resource that has publications, depending on how deeply you want to delve into the questions and some of the brief topics that we've talked here, that are all focused on health equity. And it's a really nice website that hopefully, we can put into the link of the podcast description. Brielle Gregory Collins: Absolutely. Those are great resources. Thank you both for sharing those. And thank you again for your time and for sharing your expertise today. This was such a great discussion. It was really great having you both. Dr. Patel: Well, thank you for even highlighting this important topic of health equity and quality. Again, for me, it seems just completely, almost a no-brainer, that these 2 go together. But it's not always as easy as you think to link the 2. And so it's really nice that you all have come up with this podcast idea and also brought wonderful Fay and me together to do this. [laughter] There's so much admiration for what Fay is doing, and it was really humbling to be on a podcast with you, Fay. Dr. Hlubocky: Oh, it's an honor and a pleasure to be with you, Manali. You truly are an advocate and a guru, a wisdom when it comes to equity and equity issues and illuminating the issues nationally. So such an honor and pleasure to be with you. And of course, with Claire and Brielle, and to all the patients and caregivers and our colleagues, we're here for you. So don't forget to reach out to your oncology team and here with us at Cancer.Net. Brielle Gregory Collins: Thank you both so much. ASCO: Cancer.Net Podcasts feature trusted, timely, and compassionate information for people with cancer, survivors, and their families and loved ones. 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