Tag Archive for: NSCLC patients

Staying [ACT]IVATED and Empowered as a Veteran Facing Lung Cancer

Patient Empowerment Network (PEN) is committed to educating and empowering patients and care partners in the lung cancer community. Lung cancer testing and treatment is evolving with biomarker testing, and it’s vital for veteran patients and families to inform themselves about services and healthcare options available through the VA healthcare system. With this goal in mind, PEN initiated the [ACT]IVATED NSCLC Support for Veterans program, which aims to inform, empower, and engage veteran patients to stay well-informed about the latest in lung cancer care.

Lung cancer is the leading cause of cancer-related death in veterans. However, not all veterans know their options for receiving care and when they should be receiving lung cancer screenings. PEN is excited to add information about veteran care services and support to aid in screening and treatment of lung cancer via the ACT]IVATED NSCLC Support for Veterans program series. 

Cancer survivor Lisa Hatfield interviewed experts Dr. Drew Moghanaki from UCLA Health and Dr. Michael J. Kelley from the Veterans Health Administration and Duke Cancer Institute.

The VA Healthcare System and Healthcare Efforts

 The VA healthcare system’s purpose is to care for military veterans who served their country. Dr. Michael Kelley discussed the criticality for veterans to receive adequate care. “…if you are experiencing a challenge in working with the VA healthcare system, regardless of what community you are in, please communicate that to someone at the VA. That could be your provider, that could be the patient advocate. Every VA hospital has a patient advocate or that could be someone else at the medical center. We want to know how we can help you in what problems you’re experiencing. 

With more focus on equitable healthcare, the VA healthcare system has continued to receive scrutiny over the health outcomes of VA patients. Dr. Kelley shared how the VA has transformed outcomes that were documented in patient data from 20 years ago. “So in VA, there are several different ethnic and racial populations, and we’ve looked at the outcomes of Black and white veterans. Latinx veteran population is still relatively small, so we don’t have good statistical power to be able to draw strong conclusions there. But the comparison between Black and white is very clear in VA in lung cancer in terms of the outcomes. And the result is that Black veterans do just as well, or better than white veterans at every stage of lung cancer. That is quite different than it is in the rest of the country.

VA Clinical Trial Assistance and Serving Rural Patient Groups

 Navigation of clinical trials can often feel overwhelming, and the VA healthcare system recognized this fact. Dr. Kelley shared details about some efforts by the VA to assist veterans with locating and participating in clinical trials. “…how do I find a clinical trial? So this is, I think, a barrier that we’ve all realized, and we’ve set up a service that is called the Clinical Trial Navigation Service. So a provider can ask this service to talk with the veteran and to help find a clinical trial that might be appropriate for them and then to report that back to the provider. So they can talk about what geographic area would be appropriate for the veteran and then other characteristics of the veteran and their medical care that would help inform if there’s a clinical trial available. In the VA or outside the VA, we’ve initially partnered a lot with the National Cancer Institute at the NIH Clinical Center in Bethesda, Maryland where they will actually provide transportation for people to enroll in clinical trials at that center. 

In addition to travel assistance through the American Cancer Society and other resources, the VA healthcare system is also making other efforts to help veterans gain access to clinical trials. Dr. Kelley shared some information about CBOCs. “There is another approach that VA is taking for transportation is that the…that question implies that the veteran has to travel to the care and what VA is doing is bringing the care to the veteran. So right now we deliver most of our cancer care at medical centers and we are in the process of pushing that care into our clinics called CBOCs, Community Outpatient Based Clinics. So these services will make it much easier for more veterans to access closer to where they live which would reduce that transportation barrier.

A high percentage of veterans live in rural areas, and Dr. Kelley discussed how the VA has taken measures to bring expertise to patients rather than patients going to the expertise. “…about a third of enrolled veterans live in rural areas. So this is very common for us. That’s 33 percent and the nation is about 14 percent. So it’s about two-and-a-half times likely that a veteran will be in a rural area. So VA has very mature advanced telehealth capabilities. We have tele ICU. We have tele emergency room services. And we have teleoncology. So there’s a national teleoncology service. It basically provides an expert in your cancer type at your VA. And this is mostly serving rural veterans. I think the last number I saw was 44 percent of the veterans that are served by the national teleoncology service are in rural areas.

BIPOC Patients and Veterans With Lung Cancer

Though some damaging environmental exposures have improved for veterans, there are some known risk factors. Dr. Drew Moghanaki discussed some information about some known exposures as risk factors. “So yes, it’s true that our veterans, especially if they were working around toxic chemicals or in the Middle East, where the open burn pits were leading to inhalation of a lot of toxic fumes, that these folks are at a higher risk and should be more proactive with any symptoms.”

Veteran and lung cancer patient Derrick shared his story about going to receive lung scans after his friend he served with in Iraq was diagnosed with lung cancer. “I’m sharing my story in the hopes that it will help other veterans. I continue to receive regular scans of my lungs and urge other veterans to start your lung cancer screening on schedule. Ask your doctor or VA administrator if you’re unsure about when you should start. It’s your body and your life, and you deserve to learn all you can to gain knowledge and confidence about your cancer.

The history of mistreatment of Black Americans in clinical trials has created a situation of mistrust, but there are proactive steps that BIPOC patients can take on their own behalf. Dr. Moghanaki discussed the importance of trust in healthcare. “…healthcare is complicated, especially lung cancer care. And the most important thing for anybody getting care, regardless of what social, economic background or ethnic background they may be from, is to find a team that you trust and who you know will care about you. And that’s the best way to make sure you get the best treatment.

[ACT]IVATED NSCLC Support for Veterans Program Resources 

The [ACT]IVATED NSCLC Support for Veterans program series takes a three-part approach to inform, empower, and engage both the veterans with lung cancer community and patient groups. The series includes the following resources:

Though some veterans may not have all information about the VA care options, the VA healthcare system has instituted support services and strategies that maintain comparable or improved lung cancer outcomes. We hope you can take advantage of these valuable resources to aid in your lung cancer care for yourself or for your loved one.

[ACT]IVATED NSCLC Veterans Resource Guide II en español

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Spanish_ACTIVATED NSCLC Veterans Resource Guide_Kelley

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[ACT]IVATED NSCLC Veterans Resource Guide II

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_ACTIVATED NSCLC Veterans Resource Guide

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[ACT]IVATED NSCLC Biomarkers Patient Plan

Thank you for taking this assessment. By answering the questions below, a custom patient plan featuring a collection of vetted resources will be emailed to you within 5 minutes. If you don’t see it, please be sure to check your spam. Stay [ACT]IVATED. 

 

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[ACT]IVATED NSCLC Biomarkers North American Specialist Treatment Centers

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[ACT]IVATED NSCLC Biomarkers Toolkit Checklist

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[ACT]IVATED NSCLC Biomarkers Resource Guide II en español

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[ACT]IVATED NSCLC Biomarkers Resource Guide II

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[ACT]IVATED NSCLC Biomarkers Resource Guide en español

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[ACT]IVATED NSCLC Veterans Resource Guide en español

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[ACT]IVATED NSCLC Veterans Resource Guide

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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.”

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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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Empowering Providers to Explain Lung Cancer Biomarker Testing to Patients

Empowering Providers to Explain Lung Cancer Biomarker Testing to Patients from Patient Empowerment Network on Vimeo

Non-small cell lung cancer (NSCLC) clinician Dr. Jhanelle Gray from Moffitt Cancer Center has some knowledge to share. NSCLC expert Dr. Gray discusses her experience in biomarker testing and personalized combination therapeutics.

Watch to learn some of the best practices Dr. Gray has developed in treating and empowering NSCLC patients toward more culturally sensitive and equitable care.

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A Look at Lung Cancer Expert Learnings From Tumor Boards

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Methods to Improve Lung Cancer Physician-Patient Communication

Transcript:

Dr. Jhanelle Gray:

My name is Dr. Jhanelle Gray, and I’m a clinical investigator focused on helping patients with non-small cell lung cancer (NSCLC). My research has concentrated on evaluating novel molecular markers and developing cutting-edge, personalized combination therapeutics to improve the outcomes of patients with non-small cell lung cancer.

Biomarker testing is so important to explain to patients, and I’ve learned some best practices along the way. I think it’s very important that we take the time to think about patients when we’re making decisions, and to be open to the idea that people think differently. We all come from different backgrounds, we have different experiences. I think trying to have empathy, taking a pause, and intentionally being an active listener are very important when a patient is sitting in front of you.

We need to be careful when we use the words manage or managing. We’re not managing the patient, what we’re doing is managing the therapies, we’re helping to manage the symptoms that patients experience. We also want to take time to slow down, look at what is happening in the room as you’re talking, as the patient’s talking to you…

Language is something that is critically important. When you’re delivering negative news, people will remember about 10 percent of what you say. There’s a lot going on, so patience is very important, using words that can resonate and land, and being open to questions are key. Making sure that, again, that you don’t judge and remember that you’re delivering a lot of information. We also must share the news in a culturally sensitive way and understand the dynamics. Again, it’s reading  the room.

Understand that this is an individual conversation. When the next patient comes in, you’re going to tailor the conversation to that individual. When the next patient comes in, you’re going to tailor the conversation to that individual. 

There are also some things to keep in mind about management. Patients do not fail therapies, our therapies fail our patients. And even when you’re talking to patients, you need to let them know, this is one of the things that can occur. While the intention might be to prepare them for what can happen in the future, you may not realize during the conversation that this could come across as blaming. 

Training is one of the ways that you can move this forward and also just pay attention, be thoughtful, and make sure that people feel as comfortable as possible when you need to deliver difficult news. Another time this becomes very important, is when you need to change therapies.

For the patients, they had gotten accustomed to a therapy, they knew how to take care of themselves, how to work with their team, and had familiarity with the side effects. And now you’re going to pivot treatments. To patients, this often feels like starting over from scratch. Thus, I think there are many sensitivities that must be considered, and we need to be thoughtful at those particular times.

I think that all providers should undergo cultural competency training. This can drive impact and help move us to the next level of reaching for that equity and honestly, lessening the inequities in healthcare.

Some things I’ve learned about communicating biomarker results with patients include:

  • Seeing patients as human beings first and the cancer as second.
  • Pause and think about what you’re saying and how you’re saying it.
  • Take your time and don’t rush the appointment.
  • Get to know your patient as a person.

For me, these actions are key to empowering my patients.


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