How Can We Leverage Lung Cancer Biomarker Data to Address Health Disparities
How Can We Leverage Lung Cancer Biomarker Data to Address Health Disparities? from Patient Empowerment Network on Vimeo.
How can biomarker disparities be overcome by data collection? Experts Dr. Joshua Sabari from NYU Langone and Dr. Eugene Manley from SCHEQ Foundation discuss the status of biomarker data sharing, biobanks, and improvements that can be made toward the future.
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Lisa Hatifeld:
Are there any national or international databases that collect information from those biopsies, like a biopsy data bank of some kind so they can look at this disparate group of mutations? Or is it just institutional, like if an institution collects that tissue, they keep that information? I’m just wondering if that could help in any way with the disparities we see in those biomarkers.
Dr. Joshua Sabari:
Yeah, it’s a great question. AACR American Association for Cancer Research, a nonprofit, has started a biobank called the Genie Biobank, where you can input clinical as well as genomic information from patients. But to be honest, it’s very scattered. I mean, most of the databases that we have are individual institutions. There is very little sharing of data from institution to institution. There’s very little sharing of data from pharmaceuticals to institutions and vice versa.
I think everybody really needs to work in and pitch in together here that this is a common theme that comes up at a lot of our national meetings is how do we get everyone on the same page as opposed to everybody working in their different silos. It would be very helpful if all genomic data at every institution was available to everybody, but you can understand how that could be both confidential as well as proprietary. So, unfortunately in 2024, we don’t have broad biobanks or databases that are available publicly for consumption of investigators.
Dr. Eugene Manley:
And I think on top, beyond there not really being a massive biobank, there are still differences in what we can capture in race/ethnicity in the U.S. versus Canada and Europe. Sometimes they don’t even consider race as a category, which sometimes people think race is a social construct, but at the same token, there are distinct disparities we see in the U.S., because we capture this data, and it’s hard to then do this globally when we aren’t able to capture all it does.
But if you think about it, if you look across there are even genetic differences across each of those countries, we just don’t routinely think about it. So it’s really, we need to work on developing one, but it takes time, money and groups willing to work together, and we just, unfortunately, are not there yet.
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Lung Cancer Biomarker Disparities | How Precision Medicine and Research Can Help
Lung Cancer Biomarker Disparities | How Precision Medicine and Research Can Help from Patient Empowerment Network on Vimeo.
How can lung cancer research and precision medicine help with biomarker disparities? Experts Dr. Joshua Sabari from NYU Langone and Dr. Eugene Manley from SCHEQ Foundation discuss testing factors that need improvement, patient groups that show disparities, and how clinical trial participation can move research forward.
[ACT]IVATION TIP
“…we really have to more universally test everyone equally to really have an impact on outcomes.”
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Lisa Hatifeld:
So, how can advancements in precision medicine be made more inclusive and equitable to ensure that biomarker-driven treatments benefit diverse populations equally? Second part is, what do you see as the most pressing research priorities in understanding and mitigating these biomarker disparities?
Dr. Joshua Sabari:
So I think first and foremost, testing is key. I mean, educating clinicians, healthcare providers, that every single patient, no matter what clinical characteristic that may be, age, sex, ethnicity, race needs to be tested broadly with the same mutational sort of profile or same biomarker profile. Having somebody in your office who never smoked, those patients generally will have broad panel and next generation sequencing. If you have an 85-year-old patient who is a former heavy smoker, the rate of mutational testing comes down.
So I think we need to remove that bias, that those clinical biases that we have, that we carry with us on a day-to-day basis. We need to test all patients with lung cancer regardless of any clinical characteristic. And what I tell my fellows, my residents, and what I talk to patients about is really all you need is lungs to develop lung cancer.
We need to remove that stigma and when we remove that stigma, we will be testing more broadly in our practices. There are also a lot of systemic biases, a lot of racism that exists, that prevents clinicians, I believe, from doing the best thing for their patients. And if you look at clinical trial enrollment in this country and that’s something that we do need to improve in order to develop better treatment options for our patients, particularly our patients of Latin American descent or Black Americans in the United States.
We need to enroll more patients of more diverse backgrounds onto our trials. Otherwise, we’re only limiting our treatments to specific or small percent of our patient population. So to be honest, I don’t know how well our EGFR inhibitors work in Black patients. I know it’s approved and we utilize it, but we don’t have nearly as much data prospectively treating novel therapies.
A lot of our trials have inclusion rates as low as 2 percent to 3 percent. And we know that our Black patient populations make up 13 percent to 15 percent of our practices. So I think more needs to be done to align our enrollment on trial, I think from institutional policies as well as governmental. So the FDA has really made a forceful statement here to pharmaceutical companies that if your data is not inclusive of a U.S. patient population, this will have ramifications for approvals in the future.
So a lot needs to be done in the sense of education both from the healthcare provider and…but also from the patient, and to really motivate patients to enroll in trials. And one positive that I’ve seen from the patient support groups, the advocacy groups, particularly EGFR Resisters Group, for example, we’ve seen a tremendous sort of push for patients to enroll on trials, again, to benefit themselves as an individual patient diagnosed with EGFR mutant lung cancer, but also to help those who come before or after them in their journey with lung cancer.
Lisa Hatfield:
And, Dr. Manley, do you have anything to add to that?
Dr. Eugene Manley:
I think he hit most of it, but I will say that you have to test everyone because there are people that have risk factors for lung cancer and those that don’t. And like, one of the leading risk factors is history of smoking, but there’s a significant population of specifically Asian females that don’t smoke. Even recently, that have been showing that Black women that don’t smoke also have increased rates of lung cancer. And these are, we don’t know why.
So we still need to be able to test all these patients across all the indications and maybe cross-reference with stress income, socioeconomic status and really try to determine maybe if there are certain specific drivers and what we didn’t talk about. We know that there are some epigenetic changes that may occur due to stress. We also know that there are some changes in tumor mutational burden, some stuff out of MSK. And I think there is some stuff that even shows differences in the immunomarker frequency and response in Black populations. So, we really have to more universally test everyone equally to really have an impact on outcomes.
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Maximizing Biomarker Equity: Leveraging Partnerships to Close Biomarker Disparities in Lung Cancer
Maximizing Biomarker Equity: Leveraging Partnerships to Close Biomarker Disparities in Lung Cancer from Patient Empowerment Network on Vimeo.
How can biomarker disparities be minimized by lung cancer partnerships? Expert Dr. Eugene Manley from SCHEQ Foundation discusses individuals, lung cancer partnerships, and how partners can work collaboratively toward improved biomarker disparities and health outcomes.
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Lisa Hatfield:
Dr. Manley, how can partnerships between researchers, healthcare providers, community organizations, and policymakers be leveraged to address biomarker disparities and improve health outcomes for marginalized groups?
Dr. Eugene Manley:
I think partnerships are key to really moving the needle across the whole spectrum. You need the patient advocate groups, which are patients, caregivers, survivors. You need the researchers that are doing the studies. You need the physicians, researchers, surgeons that are doing the treatment surgeries follow-up. You need the histologists that are doing imaging and staining. And so, and then you need to really have an activated ecosystem that can really use stories and storytelling to translate this information to those that are writing policy. Because policy usually only gets changed through strong stories.
So you have to tell the story of your lung cancer, your diagnosis, your journey, and how…what did and didn’t work. And then the compelling story is usually what get laws passed. Often the use of webinar series where you have patients speaking about their experience are way more impactful because then they’re really bringing their life story to that journey. And that’s really key. So I think the partnerships at all levels are important, but you all need to be on the same page with what you’re trying to do and who you’re trying to impact.
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Equity in Action | Addressing Biomarker Disparities in Lung Cancer
Equity in Action: Addressing Biomarker Disparities in Lung Cancer from Patient Empowerment Network on Vimeo.
How can biomarker disparities be reduced in lung cancer patients? Experts Dr. Joshua Sabari from NYU Langone and Dr. Eugene Manley from SCHEQ Foundation discuss approaches that are being used for community engagement and further interventions that can be used to reduce disparities.
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Navigating Lung Cancer Biomarker Testing | Challenges and Solutions for Timely Access |
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Transcript:
Lisa Hatfield:
So, Dr. Manley, are there any promising approaches or interventions aimed at reducing biomarker disparities that you’ve currently been exploring or are advocating for?
Dr. Eugene Manley:
I will take several angles on this. One thing is there has to be much more community engagement and involvement and really going to community groups, whether they’re faith-based, whether they’re barbershops, really going out where people are and letting them know about lung cancer, lung cancer disparities, biomarker testing, what you can do. The other way is also going to conferences where there are more diverse scholars that are attending. So a lot of these are STEMM meetings. They may not be specific in lung cancer, but if you can go out there and get the word out about lung cancer and the disparities, then they can go back to their families and talk about, you know, screening and testing and making sure that their family members are aware.
And then, you know, we just published a paper recently that shows the upstream part of biomarker testing is where are we starting at with our cell line? We just did a review of all the lung cancer cell lines. Of over 800 cell lines, majority were European-based. Only 31 cell lines in total were from Black African American populations. None were from Hispanic, none were from Native American, Pacific Islander, none from Alaska Native.
So just think about this. If that is our starting material for all of our biomarker testing and TCGA and databases, then everything we’re developing is on a population that already has great access and outcomes. But they don’t have the greatest disparities. So then you’re getting through doing all these trials, and then you have biomarkers, and you have immunotherapies coming out, and then you’re seeing adverse events in these diverse populations at the end because you don’t have the starting material.
Lisa Hatfield:
And, Dr. Sabari, after hearing Dr. Manley’s comments about that, how do you…or do you know of any approaches or interventions that are aimed at reducing these biomarker disparities? Because maybe they aren’t being acknowledged yet. Maybe they’re only being seen in certain populations.
Dr. Joshua Sabari:
Yeah, I think Dr. Manley hit it on the head. First off, we don’t even know the correct or true numbers for certain mutations in specific patient populations. And I just read an article about patients from Latin America, different rates of EGFR, ALK, and other mutations. You can imagine a study population from Africa, for example. And then obviously studying a population of Black Americans here in the United States as well.
We know that most of the cell lines, most of the data that we’ve had, particularly TCGA (Tumor Cell Genome Atlas) is from a Caucasian or North European patient population. So I think we need to do better in that sense. I think equally as important, are clinical trial enrollment needs to diversify. Again, it’s mostly women. It’s mostly Caucasian women. We have very, very low rates of Hispanic patients enrolled on clinical trials, Blacks enrolled on clinical trials.
So I think we need to do better in that sense. One thing that we’ve really pushed for in academic medicine is to at least report who is being enrolled on trials so that we can understand is this data generalizable to my own clinical practice? And oftentimes if you look at the clinical characteristics of patients enrolled on the trial, it likely does not match what you see in your own practices.
So we need to do better in that sense. So I think the FDA, and especially pharmaceutical companies, are clearly looking to expand and broaden their inclusion criteria and also access to patients so that we can actually have a more diverse patient population that represents our country enrolled on these trials.
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Navigating Lung Cancer Biomarker Testing | Challenges and Solutions for Timely Access
Navigating Lung Cancer Biomarker Testing | Challenges and Solutions for Timely Access from Patient Empowerment Network on Vimeo.
To achieve accurate biomarker data for lung cancer patients, what are challenges and solutions? Expert Dr. Joshua Sabari from NYU Langone discusses challenges that can arise during the biomarker testing process, solutions to overcome the challenges, and proactive advice to help ensure optimal patient care.
[ACT]IVATION TIP
“…not only know your mutation, but speak up for yourself. Speak up for your loved one. Make sure that the correct testing is done and that there is sufficient tissue, both for blood and tissue from the biopsy, to do the correct testing to allow us to potentially match people to the best treatments available.”
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Understanding Non-Small Cell Lung Cancer: Types, Biomarkers, and Treatment Insights |
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Equity in Action | Addressing Biomarker Disparities in Lung Cancer |
Transcript:
Lisa Hatfield:
So, Dr. Sabari, this is a multi-part question here, so I’ll break it down a little bit. What are some of the main challenges in collecting accurate biomarker data, and how can researchers overcome these challenges? And considering the challenges that oncologists face in retrieving testing results at second-line treatment, what technological advancements or procedural changes could streamline the process and ensure timely access to biomarker testing results?
Dr. Joshua Sabari:
So when we talk about biomarker testing, we’re generally talking about testing the tissue, as well as sometimes testing blood or plasma. And it’s important that if you have a good and accurate biopsy with sufficient tissue, that then gives us the ability to select or do the correct biomarker testing. So that’s first and foremost, you know, fine needle aspiration, small aspirations may give us insufficient tissue. You know, whereas if you do a core needle biopsy, whether it be percutaneous through the chest with an image or bronchoscopically through the mouth with a camera, we’re able to get a large sample of tissue.
This will give us the amount of tissue needed to do the correct biomarker testing. We call it next generation sequencing or short for NGS, where we’re able to actually identify the mutations or abnormalities in your DNA. The other type of test we can do is on plasma, where we sometimes call it a liquid biopsy. That’s a simple blood test where, you know, a team will draw about two 10 cc blood tubes, where we’re then able to sequence, you know, DNA in your blood to help identify these alterations.
So having sufficient tissue or having the blood drawn, that’s important.
But then also having your physician and your clinician and healthcare team order the appropriate test. You know, it’s unfortunate. A lot of folks that I see in my practice have not had adequate testing done in the frontline setting. Oftentimes, clinicians will be in a rush to start systemic treatment, both because patients are symptomatic, but also because they want to get going with treatment for patients. So, you know, stopping your physician, your team and saying, hey, what is my mutational profile? What is my mutational status is an extremely important discussion to have with your clinician. So a lot of times we only see this being done in the second-line setting.
So having that information up front could allow you and your family members to be matched to the best possible therapy. Now, if you’ve started a treatment and you don’t have genetic testing or molecular testing done in the front line, I would then have it done in the second-line setting. So one of my activation tips here is not only know your mutation, but speak up for yourself. Speak up for your loved one. Make sure that the correct testing is done and that there is sufficient tissue, both for blood and tissue from the biopsy, to do the correct testing to allow us to potentially match people to the best treatments available.
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How Can We Advance Equitable Access to Precision Medicine in Lung Cancer Care?
How Can We Advance Equitable Access to Precision Medicine in Lung Cancer Care? from Patient Empowerment Network on Vimeo.
With non-small cell lung cancer (NSCLC) precision medicine, what are disparities and strategies to equitable access? Expert Dr. Samuel Cykert from UNC School of Medicine discusses disparities, strategies to overcome disparities, and proactive patient advice toward optimal care.
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“…I know you do electronic health records, and as soon as this visit is done, you have data about my visit, so have you thought about creating a real-time registry to see how I’m progressing with my care and see how others are progressing with their care, whether to make sure that we don’t have missed appointments and to make sure that I’m not falling behind where I should be.”
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Transcript:
Lisa Hatfield:
Dr. Cykert, are there any disparities in access to biomarker testing for Black and Latinx patients with lung cancer compared to other racial or ethnic groups, and if so, what strategies or initiatives can be implemented to address these disparities and promote equitable access to precision medicine?
Dr. Samuel Cykert:
Yeah, biomarker testing followed up by precision medicine is really fairly new in the last half-dozen years, so there haven’t been a lot of studies done looking at how well we’re doing in different groups, but there’s a journal called The Journal of Clinical Oncology and precision medicine that published such a study in 2022.
And what that showed…and again, keep in mind that in a lot of…as they do in a lot of database studies, they are a couple of years behind, but what they showed in looking at the cases of over 20,000 patients, is that on first time testing, we talked about initial biopsies, when the initial biopsy is tested, there is actually about a 7 percent difference between Black and white patients with the white number being only 37 percent and the Black number being 30 percent, so that was low all the way around.
And then if you look at any biomolecular testing at any stage of the cancer, those numbers change to around 55 percent for white patients and 44 percent for Black patients, and I want to point out that for Asian patients and Latinx patients, the numbers were also low, but there weren’t enough patients in the database to achieve statistical significance, but it looks like things are going in the wrong direction there too, and when you think about it, in the state of the right now, those numbers ought to be close to 100 percent for everybody, at least in some of the basic markers like ALK and EGFR and PD-L1.
So there’s a lot of work to do. So there is a disparity. It has been documented, but we’re not getting perfect care to even anyone, and in the ACCURE (Accountability for Cancer Care through Undoing Racism and Equity) Study that I had described a little bit earlier, where we did an intervention, we created real-time transparency through up-to-date electronic health records and digital data of where patients were in their care, we were able to create a real-time registry to know what had been done for every patient, and in the case of precision medicine, this would be so easy, because you basically put every patient that’s had a lung cancer biopsy in the registry, then you have another column in the registry tested for X, tested for Y, tested for Z, and then you have a next column that says, treated for X, treated for Y, and treated for Z. We have the digital information now to do all this in real time, and we have to build the systems to do it.
Lisa Hatfield:
Could you share any examples of successful initiatives or programs aimed at improving the implementation of biomarker testing in lung cancer and what factors contribute to the success of these initiatives, and how can they be replicated or scaled in other healthcare settings?
Dr. Samuel Cykert:
I’ll have to plead my ignorance on this question because I haven’t talked to enough cancer centers on whether or not they’re creating real-time registries for whether all their patients with probable lung cancer are, [a] getting biopsied promptly, [b] getting biomarker testing, and then following those patients over time to see if they’re getting the treatments to match to that, so I know that at my own institution at the University of North Carolina Lineberger Cancer Center, we’re actively talking about building these systems, but we haven’t built them yet.
And so going back to the work that our UNC team has done in partnership with Greensboro Health Disparities Collaborative, we’ve done an intervention with real-time transparency in lung cancer treatment and breast cancer treatment, and real-time quality improvement and audit and feedback for accountability in those treatments and using navigation, particularly for high risk patients to make sure that they’re able to follow through with their diagnosis and treatment.
So with that combination in lung cancer, we got almost perfect care, 96 percent and 95 percent completing treatment, so there’s no reason that the same system cannot be applied to biomarker testing and biologic and immunotherapy, and we need to look at it and implement it and apply it as soon as possible, because when you think about all this, and I’m not just talking about cancer, but when you’re thinking about the whole picture, when you look at, for instance, Black, white disparities, whether it’s in cardiovascular care, whether it’s in diabetes, whether it’s in cancer care, if you look at the result of that in one year, if we brought up care to benchmark levels of the Black community on all those things, we would save 74,000 lives a year.
That’s incredibly impactful. And we need to quicken up the pace of doing this. I’ve been a disparities researcher and intervention researcher for over 20 years, and people really haven’t taken note of really doing interventions until the last five or six years. We need to pay attention, we need to move. It’s important. People’s lives depend on it. And care improved for everyone with these systems, it improved for white patients too. It’s not a zero-sum game.
Lisa Hatfield:
I’m wondering, as a patient, is there anything that I can do or that a patient can do to request or to ask if they use real-time data, that institution to help with the treatment or help with testing or whatever, is there a question the patient might be able to ask to ensure the real-time data is used? Because I imagine it’s not being used as often, so it could be, like you said, there probably isn’t a system in place.
Dr. Samuel Cykert:
Here’s my double activation tip. So at an institution, you don’t know if you have a problem until you look. So the first problem is, as I go back and look behind, am I making sure whether or not I’m seeing disparities, whether it’s a man, woman, Black, white, Latinx, do we have disparities in our treatment application and treatment outcomes in our institution? Because if we look at that, we can start brainstorming on how to possibly fix it, and then the second thing is, I know you do electronic health records, and as soon as this visit is done, you have data about my visit, so have you thought about creating a real-time registry to see how I’m progressing with my care and see how others are progressing with their care, whether to make sure that we don’t have missed appointments and to make sure that I’m not falling behind where I should be.
Lisa Hatfield:
Great, that’s perfect, thank you. Having the patients be…have that accountability too, to ask the question, if that exists, that real-time data, if there’s a way to use that. So thank you, I appreciate that myself personally, so thanks.
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Improving Biomarker Testing Access for Rural Lung Cancer Patients
Improving Biomarker Testing Access for Rural Lung Cancer Patients from Patient Empowerment Network on Vimeo.
What are the barriers for rural patients hoping to access biomarker tests? Dr. Samuel Cykert discusses the barriers for underrepresented lung cancer patients in rural areas face in accessing biomarker testing, citing issues like health insurance, economics, and language.
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How Can We Advance Equitable Access to Precision Medicine in Lung Cancer Care? |
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Transcript:
Lisa Hatfield:
Dr. Cykert, one of the main barriers preventing Black and Latinx patients with lung cancer in rural areas from accessing biomarker testing, and what steps can be taken to address these barriers, including improving awareness, affordability, and availability of testing facilities?
Dr. Samuel Cykert:
Yeah, great, great question. There are several issues here. One is the issue of rural, and the other issue is patients of color who may have barriers of health insurance, barriers of economics, barriers of education, and especially in the case of Latinx folks, barriers of language. So it really is a multiple question, but one thing for sure is we know from past studies that technology diffusion is slow and tends to get out to rural areas later than other areas, and the other problem is treatment volume in rural areas.
So a lot of rural hospitals don’t do bio specimen testing, don’t have the capability of doing that, and so you have this kind of double whammy of low volume testing plus low volume treatment, it’s well-known that surgeons who do more operations, for instance, do better. So given all those factors, I would recommend that rural patients who have presumptive diagnosis of lung cancer, even a suspicion of lung cancer, for instance, a large mass, a greater than 2 centimeter mass on an x-ray or a CT scan, that those patients ask to be referred to the closest high volume center.
I think that’s an important step, and we also have to have close interactions with our rural colleagues so that they’re comfortable of treating aggressively things that are well-treatable in the rural environment and going on to the high-volume centers, the more specialized centers, when things have to be done more aggressively.
When you look at a lot of different healthcare disparities, especially in advanced diseases, a lot of them come from being in areas where technology diffusion hasn’t happened and people don’t have access to the same treatments that they do at higher volume centers. My activation tip here is, for things like biomarker testing and advanced treatments, you need to go to the closest high volume center.
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Enhancing Lung Cancer Care for Black and Latinx Patients | Tackling Challenges, Implementing Solutions
Enhancing Lung Cancer Care for Black and Latinx Patients | Tackling Challenges, Implementing Solutions from Patient Empowerment Network on Vimeo.
What are challenges and solutions to quality care for Black and Latinx non-small cell lung cancer (NSCLC) patients? Expert Dr. Samuel Cykert from UNC School of Medicine discusses challenges, solutions, and proactive patient advice toward quality care.
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“…for things like biomarker testing and advanced treatments, you need to go to the closest high volume center.”
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Lisa Hatfield:
Dr. Cykert, what specific challenges do Black and Latinx patients with lung cancer often encounter in advocating for themselves within the healthcare system, and how can they navigate these challenges effectively to ensure they receive equitable and quality care?
Dr. Samuel Cykert:
Yes, and in our past research we discovered that there are certain implicit biases and communication biases that affect patients of color, and because of that, I think it’s really important to approach the clinical encounter with cancer care decision-makers with enthusiasm, that meaning making a direct statement that I’m very enthusiastic about getting care for my lung cancer, I’m very enthusiastic about biomarker testing, tailored therapy, surgery and research protocols. So please consider me for all those results, and I know what I said was just a mouthful.
And even if you can remember to just start with, I’m very enthusiastic about getting treatment, and biomarker testing would be good and I’m positive about it, how do you feel about it? Engage the clinician in the conversation so they really know that you’re part of the team and they’re part of the team, and you’re ready to move toward excellent treatment and you’re willing to consider even research stuff.
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Unveiling Racial Disparities in Early-Stage Lung Cancer Treatment
Unveiling Racial Disparities in Early-Stage Lung Cancer Treatment from Patient Empowerment Network on Vimeo.
For early stage lung cancer treatment, what are root causes of racial disparities? Expert Dr. Samuel Cykert from UNC School of Medicine discusses key findings from UNC research and proactive advice to patients to help reduce disparities.
[ACT]IVATION TIP
“…even in advanced disease, there are some excellent responses to these therapies, so getting back to what do I say to patients, don’t feel doom, be enthusiastic about, I really want treatment. I really want to go ahead and see what you can do for me. And even if that involves research testing and protocols. So enthusiasm is important. And the other thing that’s important is, again, because of some of these implicit biases I mentioned, actually asking positive questions to the clinicians and staff saying, I feel really good about going ahead and doing what I can do, how do you think I’ll do? Enlist them as part of your team, get rid of their gloom and doom too.”
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Lisa Hatfield:
Dr. Cykert, could you elaborate on the key findings or insights uncovered by the UNC research team regarding the root causes of racial disparities in the treatment of early stage lung cancer patients, and also …how do these findings contribute to our understanding of healthcare disparities and inform future interventions in lung cancer?
Dr. Samuel Cykert:
Yeah, and first of all, I want to make a statement up front that in doctor’s treatment of lung cancer and other cancers and other chronic diseases, there is not malevolence here, okay, because doctors go to medical school, the vast majority go as idealists, and so I think it’s really important not to place blame here, but there’s a way that the system is set up, both in terms of health insurance, economics, other socio-demographic factors, where people of color are disadvantaged.
And then you add to that an element of implicit bias, we all have implicit bias, different kind of implicit biases, and in a study that we published in the Journal of the American Medical Association in 2010, we showed that clinicians who take care of lung cancer tend to not want to take risks on patients who aren’t like them, who they don’t feel comfortable communicating with, and so Black patients who had two or more significant comorbidities at the time of surgery virtually never got lung cancer surgery, whereas white patients with two or more comorbidities still did.
So a lot of that had to do with the clinician side of thinking, well, I don’t know if, I mean, you’re kind of sick to start with, and I don’t know how well you’d do, and so the clinician isn’t aggressive in explaining things about surgery and pushing toward surgery, where with a patient that’s like them, when there’s a family member in the room saying, “Doc, Doc, what are you going to do about dad’s cancer?” Then in those cases, the clinical decision making is more aggressive, and so that was a big thing, and another thing that we discovered is if Black patients felt that the shared communication, that the discussions were poor, they were much, much more reluctant to go to surgery, so there’s a communication thing, making sure that people are understanding each other.
And you have to remember a lot of times when people hear the word cancer, they automatically shut down and they start listening, and then on top of that, if the communication and the connection is poor, then the listening and discussion is even worse, so those were two big areas where we found that Black patients were disadvantaged even beyond the socio-economic stuff. As far as interventions go, based on that, based on two things, based on that 2010 trial and based on a community group that I’ve been a part of through the years called the Greensboro Health Disparities Collaborative in Greensboro, North Carolina, that community group has pointed out three ways to overcome disparities in cancer and other medical care.
One way is real-time transparency. When you think about it, all the studies that show disparities in cancer are studies that look at data that are four or five or six years old. Well, if you have cancer and the data are four or five, six years old, if you don’t act on it, you’re dead, and so we need to use real-time data, and there’s no reason we can’t do that today with electronic health records and all the digital data floating around health systems, we can create real-time registries in order to take better care of cancer patients. So that’s one thing.
The second thing that the collaborative pointed out was accountability, I mean, the primary care doctor can’t say, well, it’s the oncologist. The oncologist can’t say, well, it’s the surgeon. The surgeon can’t say, well, it’s the radiation oncologist and the primary care doctor. We can’t diffuse responsibility. We have to have accountability. And so the way we put together accountability in our intervention is we gave feedback to the cancer care teams, and we not only said, this is how well you’re doing with patients completing surgery and patients completing their other treatments, we break it down by the disadvantaged group, so we say, here’s how your white patients are doing, here’s how your Black patients are doing, here are how your Hispanic patients are doing.
Whatever the disadvantaged group is, we compare. And the other great thing about doing that is when you get, for instance, quarterly quality data about how you’re doing with treatment in different groups, you can sit in the room and you can start saying, well, what’s going on here, why are these differences existing? And in one of our studies, for instance, Cone Health in Greensboro noted that in one particular geographic area, transportation was horrendous and patients missed a bunch of appointments, and then they created their own transportation van when scheduling appointments, and the disparity went away, that was based on the transportation problem. Okay? So by looking at those things in real time, you can iterate and decide how you’re going to fix that. So that’s the second thing, accountability.
And the third thing that the group brought up was communication. Doctors often talk in medical jargon. Patients don’t understand. Patients don’t understand and they interpret the conversation in the wrong way. That fosters mistrust, and also, you have that idea that I mentioned earlier, that patients don’t process things after they hear the cancer word, and so instead of just communication right now in this acute setting, you need engagement and re-engagement, and that’s where we brought in a specially trained navigator who was aware of these communication problems, who was aware of particular problems that might affect patients of color, and that navigator would use that knowledge to engage and re-engage patients over time, to bring them back into care.
And just going back to one of my earlier points on real-time transparency, in our studies, we actually built a real-time system where we followed patients over time, and if a patient missed an appointment, an automatic warning would come up that said to the navigator, you need to re-engage the patient, but the other thing we did to deal with implicit bias and clinical inertia is we set time limits in the system.
So if care wasn’t progressing the way we thought it should progress on a time scale that was actually established by medical stakeholders in that community, if, for instance, if the patient didn’t get a follow-up visit or a test within 30 days, bam, a warning came up. If the patient didn’t get a biopsy within 60 days, a warning came up. If they weren’t scheduled for surgery or definitive care within 60 days, a warning came up.
So we not only engaged the patient when the patient was missing, but we engaged the clinical team and said, did you really mean for these delays to happen? And with our intervention, in terms of completing care, we went at baseline from 70 percent, compare completion, 70-ish percent for white patients, compared to 60 percent for Black patients, to almost perfect care for everyone. In over 300 patients, it was 95 percent and 96 percent completing their care. So that was just a phenomenal improvement because we had real-time transparency, accountability and communication.
Lisa Hatfield:
Those are incredible statistics on how you can build this system to help eliminate some of those disparities in healthcare. Would you have any activation tips from the patient perspective? I mean, you explained this so well, do you have any tips for patients?
Dr. Samuel Cykert:
Yes. I mean, patients…first of all, patients are in a situation where lung cancer, the narrative around lung cancer over time has been one of nihilism and doom. And people think once I have the diagnosis of lung cancer, I’m dead and there’s nothing I can do about it. Well, in early stage, non-small cell lung cancer, the cure rates have gone up, especially with adjuvant chemotherapy, and now it looks like it’s going to happen with some neoadjuvant biological and chemotherapy, so things are getting better and better.
And even in advanced disease, there are some excellent responses to these therapies, so getting back to what do I say to patients, don’t feel doomed, be enthusiastic about, I really want treatment. I really want to go ahead and see what you can do for me. And even if that involves research testing and protocols. So enthusiasm is important. And the other thing that’s important is, again, because of some of these implicit biases I mentioned, actually asking positive questions to the clinicians and staff saying, I feel really good about going ahead and doing what I can do, how do you think I’ll do? Enlist them as part of your team, get rid of their gloom and doom too.
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Closing the Gap | Ensuring Equitable Access to Lung Cancer Biomarker Testing
Closing the Gap | Ensuring Equitable Access to Lung Cancer Biomarker Testing from Patient Empowerment Network on Vimeo.
How is biomarker testing implementation going in lung cancer care? Expert Dr. Samuel Cykert from UNC School of Medicine discusses biomarker testing trends, challenges, and proactive advice for patients.
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Transcript:
Lisa Hatfield:
Dr. Cykert, can you provide an overview of the current landscape of biomarker testing implementation in lung cancer care, and highlight any key trends or challenges that you’ve identified in your research or practice?
Dr. Samuel Cykert:
Yes, if you look at the history of innovations in cancer treatment, patients of color, especially Black patients and Native Americans, also always get exposed to the innovation late compared to other patients, and I don’t want that to happen for biomarker testing and treatments, just because some of the results, especially in lung cancer are so, so good. And so what I would say right now is, number one, for advanced cancer, there are already data that show that people of color are falling behind in both initial testing and subsequent testing.
So we really, really have to work on that. But a second thing that’s happening on the innovation front, is there was a study published in the New England Journal of Medicine, just about a year-and-a-half ago, that showed that biomarker testing and treatment could possibly be effective in early curable lung cancer, something called neoadjuvant therapy, where you actually treat patients with the biologic treatment before surgery. In this case, it’s a kind of immunotherapy that works better, it works really all throughout different types of cancer, but with one particular biomarker PD-L1, it works really, really well. And so it’s looking more and more like biological treatments and testing for lung cancer are going to make a big difference.
Lisa Hatfield:
Great, thank you. I do have a quick follow-up question to that too, when I put my patient lens on, so when you talk about the biomarker testing, are all of those biomarkers tested by biopsy or can they be done via blood test, and if a patient didn’t have them done on initial diagnosis, is it possible to have it done after a patient has been diagnosed, if it wasn’t done originally, can they go back and look at that tissue to see if those biomarkers are there?
Dr. Samuel Cykert:
Yes. Right now they’re pretty much all done on tissue specimens, and so it’s important to think about it upfront because obviously you don’t want to go through a biopsy twice if you don’t have to, but it is true that as long as there’s enough tissue taken at the initial biopsy, that preserved tissue can be tested later for other biomarkers that haven’t been done.
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