Tag Archive for: [ACT]IVATED Non-Small Cell Lung Cancer

Empowering Lung Cancer Patients | Embracing Hope, Treatment, and Teamwork

Empowering Lung Cancer Patients: Embracing Hope, Treatment, and Teamwork from Patient Empowerment Network on Vimeo.

What does the future of non-small cell lung cancer (NSCLC) treatment and care look like? Expert Dr. Samuel Cykert from UNC School of Medicine shares his outlook about the future of care and his advice to patients to help build emotional support.

[ACT]IVATION TIP

“…don’t give up, and one thing I’ve heard from patients over time, particularly among Black patients, there’s a tremendous faith community, and understanding that tremendous faith, faith is excellent, but also use that faith to understand that your belief in God, your interaction with God, God is using those doctors and those healthcare professionals to help you, so it’s not a solo effort, get everybody on the team.”

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Related Resources:

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

Improving Biomarker Testing Access for Rural Lung Cancer Patients

Improving Biomarker Testing Access for Rural Lung Cancer Patients

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?

Transcript:

Lisa Hatfield:

If you could give one suggestion to patients out there who may not be following up with their appointments, perhaps also in addition to the racial disparities? The unfortunate stigma surrounding lung cancer, and I wonder sometimes if that’s a barrier to continuing treatments or going to appointments, you could give one suggestion or sentence of encouragement to patients to seek out those high volume facilities if they’re diagnosed, if there’s a suspicion of lung cancer and to continue with treatment, what would your message be to those patients?

Dr. Samuel Cykert:

My message to patients, really it’s two-fold. On the medical side, lung cancer deaths are falling, all cancer deaths are falling, and they’re falling because of earlier detection, but they’re also falling because of these new treatments. And so it’s really, really important, particularly if you’re physically able, if you have a good functional status and you’re able to walk around and do things, it’s important that you really, really consider aggressive treatments because lung cancer isn’t an immediate death sentence anymore.

It is true that there are some lung cancers that are not curable, but with some of the new biologic treatments and chemotherapy regimens, people can live years with a good quality of life, even with some advanced lung cancers. So my advice on that side is don’t give up, and one thing I’ve heard from patients over time, particularly among Black patients, there’s a tremendous faith community, and understanding that tremendous faith, faith is excellent, but also use that faith to understand that your belief in God, your interaction with God, God is using those doctors and those healthcare professionals to help you, so it’s not a solo effort, get everybody on the team.

Lisa Hatfield:

Great message. Everybody on the team, I like that. Thank you, Dr. Cykert, and I appreciate all of your answers, and I’m hoping that this message, what people are watching that, understanding those statistics from your research, people who sometimes miss appointments or have transportation issues, maybe this will inspire them to continue finding ways to get there and to keep going, to keep fighting it and getting everybody on their team, I appreciate your message a lot. Thank you.


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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.

[ACT]IVATION TIP

“…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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See More from [ACT]IVATED Non-Small Cell Lung Cancer

Related Resources:

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

Improving Biomarker Testing Access for Rural Lung Cancer Patients

Improving Biomarker Testing Access for Rural Lung Cancer Patients

Empowering Lung Cancer Patients | Embracing Hope, Treatment, and Teamwork

Empowering Lung Cancer Patients | Embracing Hope, Treatment, and Teamwork

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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What Urgent Innovations Can Advance Lung Cancer Precision Medicine?

What Urgent Innovations Can Advance Lung Cancer Precision Medicine? from Patient Empowerment Network on Vimeo.

How can non-small cell lung cancer (NSCLC) precision medicine be advanced through urgent innovations? Expert Dr. Samuel Cykert from UNC School of Medicine discusses technology and research innovations and epigenetics.

Download Resource Guide | Descargar guía de recursos

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Related Resources:

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

Improving Biomarker Testing Access for Rural Lung Cancer Patients

Improving Biomarker Testing Access for Rural Lung Cancer Patients

Empowering Lung Cancer Patients | Embracing Hope, Treatment, and Teamwork

Empowering Lung Cancer Patients | Embracing Hope, Treatment, and Teamwork

Transcript:

Lisa Hatfield:

In your opinion, what are the most pressing research priorities or areas of innovation needed to further advance the implementation of biomarker testing and precision medicine in the management of lung cancer?

Dr. Samuel Cykert:

Yeah, there are two areas of this, the health services researcher side of me says institutions have to implement systems that follow patients in real time to making sure that they’re getting the testing and treatment that they need from the initial suspicion of lung cancer all the way to biomarker testing and therapies, whether they include surgery, chemo, radiation, biologics or immunotherapy. Those systems need to be areas of priority so that we’re really proactive of not only following patients, but from time to time, whether there are side effects or whether there is confusion, having those systems so we know when to re-engage patients when they’re not progressing along, so on the health services side, we have a lot of just phenomenal, phenomenal new treatments, and we have to make sure that every patient who is eligible is getting those treatments. Okay?

Now, on the other side of things, we’ve talked about racial disparities and other ethnic disparities in care, and one thing that people are observing over time is that in individuals and communities where racism is experienced, where the stress of racism is felt on a frequent basis, we know that outcomes are worse. And part of that may have to do with stress hormones themselves and how stress hormones interact with cancer treatments and hypertension treatment and other treatments, but the other possibility is there is a field called epigenetics, where genes change because of stressors.

And so it’s very conceivable now, in terms of the Human Genome Project, there is hardly a difference in the genome between white and Black people. Genetic race is a social construct, and genetically we’re almost identical, but if we’re experiencing epigenetics, if we are experiencing racism and that grind in daily life, it changes things within us, and so I think it’s important to get enough tissue on the research side from Black patients and other disadvantaged groups to look at the epigenetic part of it, because there may be new genes and new biomarkers we’re not experiencing now that are more prevalent in disadvantaged peoples, and so I think research has to go in that direction too, and even let’s talk about going upstream, maybe if we can prevent the effects of racism. I wish racism would end tomorrow, right, or today, but it doesn’t look like that’s happening. And so, is there any way we can attenuate the stresses of racism so that the downstream effects are prevented?

Lisa Hatfield:

Really interesting point you make about the stress of that. That’s super important. It’s something I hadn’t thought of. So thanks for mentioning that too. 


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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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Related Resources:

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

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?

What Urgent Innovations Can Advance Lung Cancer Precision Medicine?

What Urgent Innovations Can Advance Lung Cancer Precision Medicine?

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.

[ACT]IVATION TIP

“…for things like biomarker testing and advanced treatments, you need to go to the closest high volume center.”

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED Non-Small Cell Lung Cancer

Related Resources:

Improving Biomarker Testing Access for Rural Lung Cancer Patients

Improving Biomarker Testing Access for Rural Lung Cancer Patients

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?

What Urgent Innovations Can Advance Lung Cancer Precision Medicine?

What Urgent Innovations Can Advance Lung Cancer Precision Medicine?

Transcript:

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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Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing

Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing from Patient Empowerment Network on Vimeo.

How does biomarker testing factor into personalized non-small cell lung cancer (NSCLC) treatment? Expert Dr. Samuel Cykert from UNC School of Medicine explains different ways that biomarker testing is used in personalizing treatment approaches and proactive patient advice for biomarker testing.

[ACT]IVATION TIP

“…have access to personalized medicine, whether it’s a surgical biopsy or a radiologic biopsy by a radiologist, you always make the statement. I would like biomarker testing for my biopsy specimen, and I would like to consider the testing that goes along with research protocols too.”

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED Non-Small Cell Lung Cancer

Related Resources:

Catalyzing Lung Cancer Care | The Transformative Impact of Early Biomarker Testing

Catalyzing Lung Cancer Care | The Transformative Impact of Early Biomarker Testing

Closing the Gap | Ensuring Equitable Access to Lung Cancer Biomarker Testing

Closing the Gap | Ensuring Equitable Access to Lung Cancer Biomarker Testing

Unveiling Racial Disparities in Early-Stage Lung Cancer Treatment

Unveiling Racial Disparities in Early-Stage Lung Cancer Treatment

Transcript:

Lisa Hatfield:

How does biomarker testing contribute to the personalized treatment approach for patients with non-small cell lung cancer, particularly in identifying actionable mutations like EGFR, BRAF, and other mutations?

Dr. Samuel Cykert:

Yeah, great, great question. Because some of these biomarkers tell you that there’s a specific treatment that will really, really work for you, and some of the biomarkers tell you there’ll be specific treatments that don’t.

And so the importance of them have to do with, again, you talk about personalized treatment, personalized treatment is getting a treatment that works for you, getting a treatment that works for the genetic component of your tumor, and so it’s really, really important that you differentiate, because again, there are studies that show certain immunotherapy medicines like pembrolizumab (Keytruda) and nivolumab (Opdivo), that those medicines will work in certain situations, but in other situations, they really don’t, and there are other medicines, for instance,  tyrosine-kinase inhibitors that work, where in other situations, they don’t, and so it really is the definition of personalized medicine for lung cancer, knowing what’s going to work and what’s not going to work, and what your odds are in certain situations.

My activation tip is to have access to personalized medicine, whether it’s a surgical biopsy or a radiologic biopsy by a radiologist, you always make the statement. I would like biomarker testing for my biopsy specimen, and I would like to consider the testing that goes along with research protocols too.


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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.”

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED Non-Small Cell Lung Cancer

Related Resources:

Catalyzing Lung Cancer Care | The Transformative Impact of Early Biomarker Testing

Catalyzing Lung Cancer Care | The Transformative Impact of Early Biomarker Testing

Closing the Gap | Ensuring Equitable Access to Lung Cancer Biomarker Testing

Closing the Gap | Ensuring Equitable Access to Lung Cancer Biomarker Testing

Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing

Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing

Transcript:

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.

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED Non-Small Cell Lung Cancer

Related Resources:

Catalyzing Lung Cancer Care | The Transformative Impact of Early Biomarker Testing

Catalyzing Lung Cancer Care | The Transformative Impact of Early Biomarker Testing

Unveiling Racial Disparities in Early-Stage Lung Cancer Treatment

Unveiling Racial Disparities in Early-Stage Lung Cancer Treatment

Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing

Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing

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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Catalyzing Lung Cancer Care | The Transformative Impact of Early Biomarker Testing

Catalyzing Lung Cancer Care: The Transformative Impact of Early Biomarker Testing from Patient Empowerment Network on Vimeo.

For non-small cell lung cancer (NSCLC) patients who receive early biomarker testing, what are the impacts? Expert Dr. Samuel Cykert from UNC School of Medicine discusses the benefits of biomarker testing and proactive advice for patients. 

[ACT]IVATION TIP

“…make sure you discuss with the doctor who’s doing the biopsy that I really want biomarker testing at the beginning of treatment.”

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Related Resources:

Closing the Gap | Ensuring Equitable Access to Lung Cancer Biomarker Testing

Closing the Gap | Ensuring Equitable Access to Lung Cancer Biomarker Testing

Unveiling Racial Disparities in Early-Stage Lung Cancer Treatment

Unveiling Racial Disparities in Early-Stage Lung Cancer Treatment

Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing

Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing

Transcript:

Lisa Hatfield:

Dr. Cykert, what are the main benefits of early and comprehensive biomarker testing in non-small cell lung cancer patients, and how does it impact treatment, decision-making, prognosis, and overall patient outcomes?

Dr. Samuel Cykert:

And 80 percent of patients with lung cancer are diagnosed with advanced disease, and really over the last half-dozen years, biomarker testing has become so important because in advanced disease, biological treatments have actually shown good benefits for a lot of patients and for some patients, just explosive benefits. And so on the treatment side, it’s very important to get a battery of biomarker tests, just to understand, as a patient, if you’re eligible for one of these treatments that are really good in terms of improving length and quality of life.

The second reason they’re important is a lot of work is being done on the research side of biomarker testing and biomarker treatments, so if a patient is to qualify for a really strong research study, biomarker testing is just something that’s very, very important. And so on the current treatment side and on the research side, there are really, really tremendous reasons to go ahead and get tested, and so my tip is since not every patient gets tested, make sure you discuss with the doctor who’s doing the biopsy that I really want biomarker testing at the beginning of treatment.


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Becoming an Empowered and [ACT]IVATED Lung Cancer Patient

Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the lung cancer community. Lung cancer treatment options are ever-expanding with new testing and treatments, and it’s vital for patients and families to educate themselves with health literacy tools and resources on up-to-date information in lung cancer care. With this goal in mind, PEN initiated the [ACT]IVATED Non-Small Cell Lung Cancer program, which targets to inform, empower, and engage patients to stay abreast of the latest in lung cancer care.

The [ACT]IVATED Non-Small Cell Lung Cancer program is geared to newly diagnosed lung cancer patients, yet it is beneficial at any stage of disease. [ACT]IVATED helps patients and care partners stay abreast of the latest options for their lung cancer, provides patient activation tools to help overcome barriers to accessing care and powerful tips for self-advocacy, coping, and living well with cancer.

How Can BIPOC NSCLC patients overcome discrepancies in the timelines of their diagnosis?

Lung Cancer Stigma and Disparities

Lung cancer is unique in comparison to other types of cancer. Overcoming the lung cancer stigma in the U.S. that was partially created by TV advertising campaigns to quit smoking. Cancer patient Lisa Hatfield spoke with Dr. Lecia Sequist from Massachusetts General Hospital. Dr. Sequist explained lung cancer stigma. “…it all comes together to make people think that those who get diagnosed with lung cancer did something wrong to deserve it, and that’s just not true. Nobody deserves to get cancer of any type. And lung cancer patients do suffer this unique blame that is not necessarily placed on other patients with other types of cancer, it’s really very unique to lung cancer. And it can be harmful for patients in many ways, it can be harmful in interpersonal interactions, but it also leads to policies and the whole way that our care system is set up that disadvantages lung cancer patients compared to other types of cancer patients.

Though smoking can sometimes lead to lung cancer, this isn’t true for all lung cancer patients. Dr. Lecia Sequist shared some of the data about lung cancer risk and what’s still unknown about lung cancer risk. “…it’s true that cigarette smoking is one risk factor for lung cancer, but it’s not the only one. And we don’t fully understand what all the risk factors might be, but we know that there are people who have smoked a lot in their life and never get lung cancer. And on the flip side, we know that there’s people who have never smoked or who maybe quit 30, 40 years ago and will still get lung cancer. And how do we know who’s at risk?”

Access to lung cancer screening can also vary across the U.S. depending on what state you live in. Dr. Sequist shared about this key difference. “Lung cancer screening is really effective as far as finding cancer in the earliest stages. It’s not equally available across the country. Some of it has to do with there are certain states that expanded their Medicaid coverage as part of the medical care reform…and there are some states that didn’t expand the Medicaid, and then that situation translated into whether lung cancer screening was easy to get started in hospitals in that state. So there are some regions of the country, and a lot of them are in the South as well as the Western U.S., where if you want to get lung cancer screening, you may have to travel more than 30 miles or even more than 50 miles in order to get lung cancer screening.

Dr. Sequist also shares how BIPOC lung cancer patients or other underrepresented patients can guard against care disparities. “You don’t have to ask permission to get a second opinion, you can just make an appointment with a different oncologist or go to an oncologist if you haven’t seen one before. Because lung cancer is changing and treatments are more successful, and we all have to do more as a community to make sure that those treatments are offered to everyone.”

About Dr. Lecia Sequist

Solutions for Better Lung Cancer Care

Patient education and empowerment are key pieces to receiving informed and optimal care. These efforts can take many forms but include approaches like improving clinical trial access, learning more from credible resources, asking questions to ensure your best care, and helping to educate others about lung cancer.

Dr. Lecia Sequist shared about the importance of learning about lung cancer information from credible resources. “A lot of people get lost in the terminology, the medical terminology. Don’t be afraid to ask questions or go to a website that is recommended, that’s been vetted by doctors to really have good quality information to help you understand what these terms mean. There’s also a lot of misinformation on the websites, that’s why you have to go to a site that maybe your doctor or your patient network recommends to make sure you’re getting accurate information. 

And lung cancer patients and patient advocates can help continue advancements in lung cancer screening and treatments. Dr. Lecia Sequist shared advice for how to take action on behalf of patients. 

“Lung cancer can happen if you smoked, if you never smoked, anything in between. Anyone who has lungs can get lung cancer. And we have to take the stigma away from this disease. Nobody deserves to have lung cancer. It’s not something that people cause to happen to themselves, and they certainly shouldn’t be blamed if they are finding themselves in a position where they have lung cancer. So just spreading the word, lung cancer can happen to anyone, anyone with lungs can get lung cancer, I think can help start to change the perceptions.”

The use of artificial intelligence (AI) has led to improvements in lung cancer screening. Dr. Lecia Sequist explained how AI has advanced the detection of  lung cancer. “The computer looks at a different type of pattern that human eyes and brains can’t really recognize and has learned the pattern, because we trained the computer with thousands and tens of thousands of scans where we knew this person went on to develop cancer and this one didn’t. And the computer learned the pattern of risk.

Patient empowerment sometimes means that patients must advocate for their best care, and Dr. Sequist shared advice about testing. “…be sure to ask your doctor if genetic testing has been performed on your cancer, and if not, can it be performed? It’s not always the right answer, depends on the type of cancer that you have and the stage, but if you have adenocarcinoma and an advanced cancer, like stage III or stage IV, it is the standard to get genetic testing and that should be something that can be done.”

[ACT]IVATED Non-Small Cell Lung Cancer Program Resources

The [ACT]IVATED Non-Small Cell Lung Cancer program series takes a three-part approach to inform, empower, and engage both the overall lung cancer community and patient groups who experience health disparities. The series includes the following resources:

Though there are lung cancer disparities and disease stigma, patients and care partners can be proactive in gaining knowledge to help ensure optimal care. We hope you can benefit from these valuable resources to aid in your lung cancer care for yourself or for your loved one.

[ACT]IVATION Tip: 

By texting EMPOWER to +1-833-213-6657, you can receive personalized support from PENs Empowerment Leads. Whether you’re a lung cancer patient, or caring for someone who is, PEN’s Empowerment Leads will be here for you at every step of your journey. Learn more.

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