Tag Archive for: Empowering Providers to Empower Patients

Overcoming Barriers in Myelofibrosis Care: Challenges Faced by Patients and Providers

Overcoming Barriers in Myelofibrosis Care: Challenges Faced by Patients and Providers from Patient Empowerment Network on Vimeo.

What are key myelofibrosis barriers and solutions for healthcare providers? Experts Dr. Raajit Rampal from Memorial Sloan Kettering Cancer Center and Dr. Jeanne Palmer from Mayo Clinic discuss common obstacles to myelofibrosis care and methods they’ve used to overcome barriers including collaborative care tips.

See More from EPEP MPNs

Related Resources:

Expert Insights on Overcoming Barriers to Myelofibrosis Care

Expert Insights on Overcoming Barriers to Myelofibrosis Care

HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers

HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers

Explaining Myeloproliferative Neoplasm Disease Progression to Patients

Explaining Myeloproliferative Neoplasm Disease Progression to Patients


Transcript:

Dr. Nicole Rochester:

Dr. Palmer, can you speak to some of the obstacles or barriers faced by healthcare providers themselves when treating myelofibrosis patients?

Dr. Jeanne M. Palmer:

I think one of the challenging pieces, you know, I know in Arizona, we have a pretty big catchment area, because there’s not only the Phoenix metropolitan area, but there are a lot of smaller communities scattered throughout Arizona. And I think one of the issues that we have is, let’s say I want to start somebody on a new medication that potentially has a side effect of anemia or something. Being able to manage them remotely is difficult, because a lot of times they may require a blood transfusion. Can they even get a blood transfusion where they’re at? Can they afford the 5-hour drive down to Phoenix to get that? So I think sometimes, even access to simple things, well, I guess it’s not that simple, but things like blood transfusions can be hard. Fortunately for labs, you’re often able to get them most places through various Labcorp, Quest, et cetera. But sometimes any type of infusional treatment can be really, really hard to get.

Dr. Nicole Rochester:

Thank you. Do you have anything to add, Dr. Rampal, with regard to barriers faced by providers?

Dr. Raajit K. Rampal:

No, I actually think that’s an important, that’s a really important thing. Because it depends on your area of the country and what access to resources patients have locally. If we’re thinking about this as sort of a hub and spoke model, that may be the outdated model. In other words, it’s not that people can afford to, you know, from a financial perspective or a time perspective, come into the major center and then go back. They need to get access to care locally, but you have to have the infrastructure, the healthcare infrastructure, if you will, to deliver that care. And that’s a difficult problem in many parts of the country.

Dr. Nicole Rochester:

Dr. Rampal, can you speak to unforeseen or maybe outdated practice-related barriers that may hinder your work and that of your colleagues with regard to myelofibrosis treatment?

Dr. Raajit K. Rampal:

Yeah, I guess my broad answer to this is that things are changing rapidly and the pace of change is accelerated. In other words, when we think about myelofibrosis, the treatment paradigm probably, if you think about the last 15 years, in the early part of that, things were kind of relatively static and now they’re not as new knowledge emerges, as new treatments emerge. And the challenge here, again, speaking in general terms is, as Dr. Palmer pointed out, this is a rare disease. It’s not something that’s frequently seen by physicians in the community. So how do you keep people up to date on something that is not the majority of what they do? It’s a very small percentage of what they see and do. And that’s an ongoing challenge. And I’m not sure there’s any perfect solution to that except for education. It’s just a question of how do you deliver that in a time-effective manner so that people can devote some time to getting up to date? But it is ultimately a good problem that things are changing rapidly.

Dr. Nicole Rochester:

Absolutely. And, Dr. Palmer, do you have any solutions or actions or things that healthcare providers can do as this treatment landscape rapidly evolves?

Dr. Jeanne M. Palmer:

I think it’s a real challenge because even when we look at sort of the dogma of like, well, what’s the response criteria? I mean, when you’re thinking of a lot of like solid tumors, you think, okay, did the tumor shrink a certain amount? Did the tumor go away? With myelofibrosis, when we think about even response criteria, it’s really challenging. So I think I agree education is part of it, and it’s trying to figure out how to distill down the really important components of how do you manage these patients day-to-day? We can talk about the COMFORT study and the MOMENTUM study and everything else all we want to, that tested, were major studies that tested the drugs that we use, but then the nuances of how to manage them day-to-day is something that I think we could probably improve upon how we educate.


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Expert Insights on Overcoming Barriers to Myelofibrosis Care

Expert Insights on Overcoming Barriers to Myelofibrosis Care from Patient Empowerment Network on Vimeo.

How is myelofibrosis care impacted by barriers, and what are solutions for healthcare providers to overcome them? Experts Dr. Raajit Rampal from Memorial Sloan Kettering Cancer Center and Dr. Jeanne Palmer from Mayo Clinic discuss different access barriers that impact quality of care and ways that healthcare providers can help close disparity gaps for patients.

See More from EPEP MPNs

Related Resources:

Expert Insights on Overcoming Barriers to Myelofibrosis Care

Overcoming Barriers in Myelofibrosis Care: Challenges Faced by Patients and Providers

HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers

HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers

Explaining Myeloproliferative Neoplasm Disease Progression to Patients

Explaining Myeloproliferative Neoplasm Disease Progression to Patients


Transcript: 

Dr. Nicole Rochester:

So we’re going to start by diving into the nuanced challenges and practice barriers in myelofibrosis care. We know that some of those factors may be related to socioeconomic factors and health disparities. So, Dr. Rampal, I’m going to start with you. What are the primary barriers in myelofibrosis care, and how might these barriers impact accessing effective treatment for myelofibrosis?

Dr. Raajit K. Rampal:

Well, I think it’s broad in the sense that, if we think about access to care, I think that part of the problem lies in underdiagnosis, and that is really on the end of the spectrum of access to primary care I’d say, are people getting in and getting regular blood count checks, the things that are going to tip somebody off that, you know, if somebody has a hematologic issue or problem, I think that is a big part of the entire discussion and spectrum here. And then the second thing is that this is a rare disease, and there are a handful of specialists throughout the world who deal with this.

And so making sure that patients have access to expert care, which is not to undermine the quality care that’s provided in the community, but this is more a question about do patients have access to, you know, clinical trials or to the most updated knowledge, and that to me really revolves around people being able to have access to tertiary care referral center who has a myelofibrosis expert. So I think those are some of the barriers, at least in my mind.

Dr. Nicole Rochester:

Thank you so much. And, Dr. Palmer, I’d love to get your insight as well. From your perspective, what are the primary barriers to accessing effective treatment, and what strategies can be implemented to overcome these barriers?

Dr. Jeanne M. Palmer:

So I agree with everything that Dr. Rampal said, but I’d also want to add to it, like many people would have to travel a distance to see that specialist. And so one of the ways that I’ve been able to try to overcome that thus far is by telemedicine. So being able to have that ability to contact somebody over the Internet, I think, especially if they’re getting very good care locally, just being able to provide that sort of expert additional advice about how to manage their disease, what different options are available.

Fortunately, this is a space where new drugs are coming pretty rapidly. So I think that having the ability to be able to weed through all of these different drugs, understand the pros and cons of them, and advise patients is good. And if they can’t make it to see you, then they can’t get advice about the medications nor can the providers. Because recognizing this is such a rare disease, a community provider has a lot to keep track of. So trying to keep track of something that impacts so few patients is hard to do. I think the other big barrier is cost and support for getting these medications.

These medications are all, unfortunately, quite expensive, and new drugs that are coming down the horizon will probably be so as well. So being able to find the right support for them, even when insurance covers it, it’s sometimes with a very large copay. So trying to handle access to these drugs, not only in the knowledge of which drugs to give, but also the ability to be able to pay for them.

Dr. Nicole Rochester:

Wonderful. Thank you both for elucidating some of those barriers. And you both mentioned that this is a rare disease and, Dr. Rampal, you also talked about expert care. And so I’d love to know, and I’ll start with you, Dr. Rampal, how do referral patterns impact treatment access in myelofibrosis and particularly for underserved populations?

Dr. Raajit K. Rampal:

This is a really interesting question, because things are changing in the sense that, I think at least in the New York area, but probably true elsewhere, there’s increasing consolidation of healthcare as hospital systems buy up smaller practices. And that means that referral patterns are going to change and are changing. There’s more of an impetus for docs to refer patients within their own health network. And they may or may not have access to expert care within their network. I think that’s one thing to keep in mind.

And the second is that, the elephant in the room here is that you have to have insurance to get into these networks. You have to have the right insurance. And do all of these big academic tertiary centers accept every kind of insurance? The answer is no, they don’t. So right off the bat, you have a systemic barrier, but then with the changing referral patterns, and I think likely certain insurances being more likely to be accepted in certain networks, you’ve already kind of fragmented the entire system. So, is there a streamlined way for patients to get in? Right now, I think the answer is no, there are a lot of barriers.

Dr. Nicole Rochester:

Thank you, Dr. Rampal. Dr. Palmer, do you have anything to add? And also if you can touch on what healthcare providers should be aware of and what they can pay close attention to with regard to these barriers that you and Dr. Rampal have discussed?

Dr. Jeanne M. Palmer:

Right, so I completely agree with everything he said. I think it’s a real challenge, especially as you parse apart these different healthcare systems. I think one of the important things for patients to know and what providers can help with is providing sort of access to some of the patient advocacy sites. On these patient advocacy sites, they can find the name of different providers, and sometimes that helps them call in to get a referral. Now, the insurance coverage is another challenge that’s a lot harder to manage. But I think one thing that patients can do is if within their own network, there isn’t an expert, at least being able to go to these patient advocacy sites, finding out who they should, who they can go see.

Dr. Nicole Rochester:

Wonderful, thank you. Well, we’ve been talking about how certain populations may experience more barriers. And certainly we know that’s at the root of health and healthcare disparities. So I want to move and start to talk a little bit about cultural competency. And I’ll go back to you, Dr. Rampal, what role do you believe cultural competency plays in addressing barriers in myelofibrosis care?

Dr. Raajit K. Rampal:

Yeah, I think one of the major tasks is to be aware that cultural competency is important. That to me is sort of the first step in everything. And in making this a little bit more granular. Not every patient approaches their disease or their diagnosis in the same way. And a lot of that is informed by their cultural beliefs, their community. And this is something, you know, living in a place in like New York where we see people from all different cultures, this is a striking thing because there are people who, for example, you know, they come from, you know, strong religious faith backgrounds. Their approach to things is different.

In some respects, they approach the disease and the need for treatment in a very different way than people who come from other cultural communities or those who are, let’s say, even not coming from a religious setting. But if you’re not aware of those and you try to put the same sort of treatment paradigm on all patients, you’re going to run into conflicts at some point. So I think to me, the first step is to be aware that these things influence how people perceive their disease, how they perceive the treatments or their desire to even be treated. But if you’re not aware of those things at the outset, then you’re going to run into those issues, I think.

 


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Endometrial Cancer Disparities | Elevating Awareness of Diagnosis and Access Gaps

Endometrial Cancer Disparities | Elevating Awareness of Diagnosis and Access Gaps from Patient Empowerment Network on Vimeo.

How can endometrial cancer awareness be increased around diagnosis and access disparities? Experts Dr. Charlotte Gamble from MedStar Washington Hospital and Dr. Radhika Gogoi from Karmanos Cancer Institute discuss issues with provider referrals, endometrial cancer incidence rates, symptoms that need patient awareness, and how to guard against missed diagnoses.

See More from EPEP Endometrial Cancer

Related Resources:

Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients

Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients?

HCP Roundtable Breaking Barriers and Cultivating Clinical Excellence in Endometrial Cancer Care

HCP Roundtable: Breaking Barriers and Cultivating Clinical Excellence in Endometrial Cancer Care

Endometrial Cancer Care | Key Barriers and Solutions

Endometrial Cancer Care | Key Barriers and Solutions

Transcript:

Dr. Nicole Rochester:

Dr. Gamble, can you speak to awareness? You spoke about the fact that sometimes patients are referred to perhaps the wrong provider. You know, there was that sent, you mentioned to a general surgeon instead of to a gynecologic oncologist. And so we can imagine that there may be some challenges both in the primary care setting and perhaps even among general obstetrician gynecologists.

So can you speak to how we can elevate the level of awareness to enhance healthcare provider awareness of diagnosis and access disparities and really appropriate referral patterns?

Dr. Charlotte Gamble:

Yeah, absolutely. I think it’s a tough question. I think it’s, again, like all things, it’s a little bit nuanced. Sometimes, again different levels of providers, different parts of the country, everybody practices a little bit differently. So everyone knows once you get a cancer diagnosis, you should probably go to a cancer specialist. And so generally, that’s coming to a gynecologic oncologist generally, or that’s sometimes that’s going to a medical oncologist.

But occasionally, sometimes patients will have symptoms where it’s just abnormal bleeding, and they’re seeing a general gynecologist who then does a hysterectomy, and there’s a surprise diagnosis of an endometrial cancer. Usually they’re, hopefully, they’re not making it too much to kind of the general surgery pathway our general surgery colleagues are awesome, but it’s kind of a different kettle of fish and the type of hysterectomy that’s needed and the type of specific surgery that’s needed to include lymph node assessment is different for somebody who’s getting a cancer surgery for uterine cancer compared to, let’s say, for fibroids or for adenomyosis or a non-gynecologic cancer situation.

I think, again, I’m on the receiving end of all of this, so I see patients who have made it to my doorstep and gotten kind of through the hoops and the barriers, but there’s definitely those out there that we know from the data somehow ended up with their surgery, not exactly in the appropriate hands.

And it’s hard to say, I don’t know if I actually even have advice for like how this is supposed to happen. I think we need to understand kind of the as Dr. Gogoi alluded to earlier, just kind of how prevalent endometrial cancer is right now and how the rates are rising and that abnormal bleeding has to be taken very seriously. And the thing that I harp on the most is a normal ultrasound does not mean there’s nothing else to explore there. There has to be a tissue biopsy.

And really impressing that on both patients as well as the first kind of people that they see, either their primary care doctor or even a nurse practitioner, a physician assistant. Just because there’s a normal ultrasound does not mean that your work is done. And we have studies to really demonstrate how that can delay patient’s care and missed diagnoses can happen. So it’s hard to answer your question, to like, how do we fix the referral pathway system? I don’t know the answer to that, and maybe Dr. Gogoi can speak to that, but I will say from like a screening standpoint, since there’s no great screening test, an ultrasound is not, might be the first step, but it’s definitely not the only step and it cannot be the last.

Dr. Nicole Rochester:

I appreciate that. As you were talking, I was thinking like this needs to be a major awareness campaign, not just for healthcare providers, but for patients as well. 


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Endometrial Cancer Care | Key Barriers and Solutions

Endometrial Cancer Care | Key Barriers and Solutions from Patient Empowerment Network on Vimeo.

What are key endometrial cancer care barriers and solutions? Experts Dr. Charlotte Gamble from MedStar Washington Hospital and Dr. Radhika Gogoi from Karmanos Cancer Institute discuss endometrial cancer incidence, disparities for Black women, symptoms to raise awareness about, and solutions to reduce disparity gaps.

See More from EPEP Endometrial Cancer

Related Resources:

Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients

Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients?

HCP Roundtable Breaking Barriers and Cultivating Clinical Excellence in Endometrial Cancer Care

HCP Roundtable: Breaking Barriers and Cultivating Clinical Excellence in Endometrial Cancer Care

Endometrial Cancer Disparities | Elevating Awareness of Diagnosis and Access Gaps

Endometrial Cancer Disparities | Elevating Awareness of Diagnosis and Access Gaps

Transcript:

Dr. Nicole Rochester:

I want to start by just framing the current situation. Black women are twice as likely to die from endometrial cancer when compared to their white women counterparts. There is no current screening test for endometrial cancer, and diagnosis is usually made after patients present with symptoms. Sadly, the list doesn’t end there. So I’m going to start with you, Dr. Gogoi. What are the primary barriers to accessing specialized care for endometrial cancer that you’ve observed in your practice and perhaps in others?

Dr. Radhika Gogoi:

So thank you for that question. I guess I just want to start by just level setting a little bit and talking about specifically endometrial cancer disparities. So unlike other gynecologic cancers, which actually have been shown to be decreasing in incidence, endometrial cancer is actually one of the cancers that is increasing. We know that low grade endometrial cancers really have an excellent prognosis, but higher grade endometrial cancers really have a much poorer prognosis.

And that’s the specific subgroup that seems to be increasing in all women. Black women, again, as you mentioned, have the lowest survival rate, and that is even when corrected for the specific type of endometrial cancer and the stage of endometrial cancer. So with that sort of background and problem, the question really becomes how do we allow and educate our patients about the barriers that they face when accessing specialized care?

And so some of the barriers, at least that I’ve noticed, and certainly in the hospital that I practice in is really as you pointed out, that there is no good current screening test. Black women tend to have a delayed onset from the time of their symptoms, which in this case is really postmenopausal bleeding to actually obtaining a diagnosis.

And there are studies that have shown that some of that is education. They tend or there is an understanding that perhaps postmenopausal bleeding is not as significant an issue, doesn’t lead necessarily, to obtaining healthcare which as you can appreciate then delays the onset of the diagnosis. There is also that Black women present with more advanced disease. This is, again, likely due to the delay in diagnosis and the delay from diagnosis to getting treated.

Dr. Nicole Rochester:

Thank you. Thank you, Dr. Gogoi for level setting and for getting us started with a better understanding of those disparities. And I’d love to go to you, Dr. Gamble. In your experience, what are the primary barriers to addressing specialized care for endometrial cancer?

Dr. Charlotte Gamble:

Yeah, thank you so much. I’ll just add some additional context. I think there are so many places in which these barriers can happen. So as Dr. Gogoi alluded to, sometimes that can happen at the patient level due to just not recognizing that having irregular, unpredictable bleeding, bleeding after menopause, bleeding even before menopause has happened, but really heavy bleeding or heavy periods that any sort of abnormal, heavy irregular bleeding is not normal and has to be evaluated in a timely fashion.

But that’s at the patient level. And sometimes, people have competing priorities where they might recognize that it’s a problem but not be able to make it to their doctor’s office. Have other kinds of things that are happening in their day-to-day lives where they just are not able to prioritize their own health. We also see then how the system can affect that.

If someone hasn’t had a gynecologist in years, or their gynecologist said, bye, you don’t need to see me anymore because you’re over the age of 65, you no longer need pap smears and they’ve fallen out of care, or patients who don’t have health insurance or patients who live really far away from their doctors. Accessing the healthcare system in the year of our Lord 2024 is actually really, really hard. If you lack the resources or lack the wherewithal to navigate that.

Additionally, what we see on the healthcare standpoint is that maybe patients do actually access the healthcare system. They call the gynecologist’s office. They call their primary care doctor, and they’re told by an admin staff or someone else that hears them, but that says, okay, fine, we’ll get you in, but it’s going to be in about three-and-a-half months.

And so sometimes those barriers and those delays come from the health system in general, which is also a challenge. And then even after they present to their doctor, sometimes they’re told, “Okay, let’s go ahead and let’s get an ultrasound first, and based on what your ultrasound looks like, then we’ll decide if we need to do a uterine biopsy to diagnose you.”

But we also know that for certain types of these uterine cancers, specifically the really aggressive ones, that sometimes their ultrasound might look totally fine, but there still can be cancer underlying there. And so I think that there are multiple barriers to getting even. That’s before the diagnosis even happens much less what comes after the diagnosis is had, how one gets from their gynecologist to a surgical subspecialist called the gynecological oncologist that Dr. Gogoi and I, this is our field. And there are multiple barriers and referral pathways there. But that’s to give a little bit more context that these things might start at the patient level, but the healthcare system, unfortunately, can contribute in rarely challenging ways to the barriers that patients face.


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HCP Roundtable: Breaking Barriers and Cultivating Clinical Excellence in Endometrial Cancer Care

HCP Roundtable: Breaking Barriers and Cultivating Clinical Excellence in Endometrial Cancer Care from Patient Empowerment Network on Vimeo.

What are obstacles faced by healthcare providers (HCPs) treating endometrial cancer patients and families? How can HCPs foster a culture of innovation and continuous improvement in clinical practice? Dr. Radhika Gogoi of Karmanos Cancer Institute and Dr. Charlotte Gamble of MedStar Health unravel the complexities of endometrial cancer care, providing HCPs with the insights and tools needed to navigate challenges effectively and to deliver optimal care to their patients and families.

See More from EPEP Endometrial Cancer

Related Resources:

Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients

Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients?

Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

Overcoming Barriers: Empowering Underrepresented Groups With Endometrial Cancer

Overcoming Barriers: Empowering Underrepresented Groups With Endometrial Cancer

Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients or EPEP Program. I’m Dr. Nicole Rochester, founder and CEO of Your GPS Doc. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician patient communication and to overcome practice barriers. In this endometrial cancer healthcare provider roundtable, we are discussing breaking barriers and cultivating clinical excellence in endometrial cancer care. 

This program aims to improve healthcare provider awareness of screening and access disparities to specialized care in endometrial cancer, while also addressing solutions to overcome practice barriers such as lack of awareness, outdated practices, and inertia. Today, we’ll talk about some of the complexities of endometrial cancer care and we’ll provide healthcare providers with the insights and tools needed to navigate challenges effectively.

Our discussion will cover enhancing healthcare provider awareness of diagnostic and access disparities to specialized care in endometrial cancer, actionable strategies to overcome practice barriers in endometrial cancer care and empowering providers through fostering a culture of innovation and continuous improvement in clinical practice. 

It is my privilege to be joined by Dr. Radhika Gogoi from Karmanos Cancer Institute. Dr. Gogoi is a dedicated clinician and cancer researcher focused on exploring the Hippo pathway in gynecologic cancers, aiming to uncover novel therapeutic approaches. Thank you so much for joining us today, Dr. Gogoi.

Dr. Radhika Gogoi:

Thank you, Dr. Rochester, and thank you for having me. It’s great to be here.

Dr. Nicole Rochester:

It’s also my honor to be joined by Dr. Charlotte Gamble, gynecologic oncologist at MedStar Washington Hospital Center and MedStar Southern Maryland Hospital. Dr. Gamble is dedicated to taking care of patients who have historically been marginalized and are vulnerable to poor health outcomes. Her research examines the role of safety net hospital systems in gynecologic cancer care. Thank you so much for joining us today, Dr. Gamble.

Dr. Charlotte Gamble:

Thank you so much for having me. It’s a pleasure to be here.

Dr. Nicole Rochester:

So we’re going to start today’s discussion by diving into enhancing healthcare provider awareness of diagnostic and access disparities in endometrial cancer care. And I want to start by just framing the current situation. Black women are twice as likely to die from endometrial cancer when compared to their white women counterparts.

There is no current screening test for endometrial cancer, and diagnosis is usually made after patients present with symptoms. Sadly, the list doesn’t end there. So I’m going to start with you, Dr. Gogoi. What are the primary barriers to accessing specialized care for endometrial cancer that you’ve observed in your practice and perhaps in others?

Dr. Radhika Gogoi:

So thank you for that question. I guess I just want to start by just level setting a little bit and talking about specifically endometrial cancer disparities. So unlike other gynecologic cancers, which actually have been shown to be decreasing in incidence, endometrial cancer is actually one of the cancers that is increasing. We know that low grade endometrial cancers really have an excellent prognosis, but higher grade endometrial cancers really have a much poorer prognosis.

And that’s the specific subgroup that seems to be increasing in all women. Black women, again, as you mentioned, have the lowest survival rate, and that is even when corrected for the specific type of endometrial cancer and the stage of endometrial cancer. So with that sort of background and problem, the question really becomes how do we allow and educate our patients about the barriers that they face when accessing specialized care?

And so some of the barriers, at least that I’ve noticed, and certainly in the hospital that I practice in is really as you pointed out, that there is no good current screening test. Black women tend to have a delayed onset from the time of their symptoms, which in this case is really postmenopausal bleeding to actually obtaining a diagnosis.

And there are studies that have shown that some of that is education or there is an understanding that perhaps postmenopausal bleeding is not as significant an issue, doesn’t lead necessarily, to obtaining healthcare which as you can appreciate then delays the onset of the diagnosis. There is also that Black women present with more advanced disease. This is, again, likely due to the delay in diagnosis and the delay from diagnosis to getting treated.

Dr. Nicole Rochester:

Thank you. Thank you, Dr. Gogoi for level setting and for getting us started with a better understanding of those disparities. And I’d love to go to you, Dr. Gamble. In your experience, what are the primary barriers to addressing specialized care for endometrial cancer?

Dr. Charlotte Gamble:

Yeah, thank you so much.  I’ll just add some additional context. I think there are so many places in which these barriers can happen. So as Dr. Gogoi alluded to, sometimes that can happen at the patient level due to just not recognizing that having irregular, unpredictable bleeding, bleeding after menopause, bleeding even before menopause has happened, but really heavy bleeding or heavy periods that any sort of abnormal, heavy irregular bleeding is not normal and has to be evaluated in a timely fashion. But that’s at the patient level.

And sometimes, people have competing priorities where they might recognize that it’s a problem but not be able to make it to their doctor’s office. Have other kinds of things that are happening in their day-to-day lives where they just are not able to prioritize their own health. We also see then how the system can affect that.

If someone hasn’t had a gynecologist in years, or their gynecologist said, bye, you don’t need to see me anymore because you’re over the age of 65, you no longer need pap smears and they’ve fallen out of care, or patients who don’t have health insurance or patients who live really far away from their doctors. Accessing the healthcare system in the year of our Lord 2024 is actually really, really hard. If you lack the resources or lack the wherewithal to navigate that.

Additionally, what we see on the healthcare standpoint is that maybe patients do actually access the healthcare system. They call the gynecologist’s office. They call their primary care doctor, and they’re told by an admin staff or someone else that hears them, but that says, okay, fine, we’ll get you in, but it’s going to be in about three-and-a-half months.

And so sometimes those barriers and those delays come from the health system in general, which is also a challenge. And then even after they present to their doctor, sometimes they’re told, “Okay, let’s go ahead and let’s get an ultrasound first, and based on what your ultrasound looks like, then we’ll decide if we need to do a uterine biopsy to diagnose you.” But we also know that for certain types of these uterine cancers, specifically the really aggressive ones, that sometimes their ultrasound might look totally fine, but there still can be cancer underlying there.

And so I think that there are multiple barriers to getting even. That’s before the diagnosis even happens much less what comes after the diagnosis is had, how one gets from their gynecologist to a surgical subspecialist called the gynecological oncologist that Dr. Gogoi and I, this is our field. And there are multiple barriers and referral pathways there. But that’s to give a little bit more context that these things might start at the patient level, but the healthcare system, unfortunately, can contribute in rarely challenging ways to the barriers that patients face.

Dr. Nicole Rochester:

Thank you both for that. I think we have a really good idea of the breadth of this issue, and I appreciate both of you pointing out that there are patient level factors, but there are also system level factors that come into play. And, Dr. Gamble, you just kind of ended by talking about referrals.

So I’m going to pick up there. And let’s talk about referral patterns. And I’ll start with you for this question. How do those referral patterns impact access to specialized care gynecologic oncologists like yourself and Dr. Gogoi for women who are diagnosed with endometrial cancer and specifically for those underserved populations?

Dr. Charlotte Gamble:

Yeah, this is a complicated question and multi-layered. Again, I think big picture referral patterns. We know that there are barriers for patients who live rurally. We know there are barriers for patients who don’t have insurance or their insurance might be, they might be underinsured. And so there’s kind of system level barriers that we see on the macro level in some of our referral pathways.

And occasionally, sometimes patients with gynecologic cancers will actually be referred to not gynecologic oncologists, which are surgical subspecialists that work specifically with gynecologic malignancies, but might be referred to a general surgeon first, or a general gynecologist who may or may not know kind of what they’re getting into in terms of the care. I think what I’ve noticed in real life is that when I’m getting referrals, sometimes I’m getting a text message, sometimes I’m getting an email, sometimes getting a message in the medical record system, and the referrals are coming in many different ways.

Occasionally, patients are calling themselves. And so the ways that referrals actually then happen in real life and how those spread to kind of the macro levels is really interesting to me. It can be very complicated, very complex, and I think this is where the role of having healthcare navigators comes into play where folks can really assist patients in getting to the right surgical subspecialists.

Dr. Nicole Rochester:

Absolutely. And we know there’s a lot of evidence for the role of healthcare navigators in other disease spaces and specifically in cancer. So I appreciate you mentioning that. We’ve talked a little bit about patient level factors, and we’ve talked about system level factors. We haven’t talked a lot about maybe some provider level factors.

And I want to talk about cultural competency and the role that that plays in addressing disparities in endometrial cancer, specifically with regard to diagnosis. And I’m going to start with you, Dr. Gogoi on this one. And if you can share the role that you believe cultural competency plays in addressing some of these disparities that we’ve been talking about.

Dr. Radhika Gogoi:

Yeah, so I think you heard from us a little bit that oftentimes some of the symptoms that our patients have had are either ignored, or patients haven’t had a chance to fully address them, or the providers haven’t fully evaluated kind of the importance of their symptoms. And I think, so again, I think nurse navigators community educators are essential in sort of educating our communities about the importance of seeking care when you have sort of the symptoms that Dr. Gamble talked about and in a really timely fashion. I think that that’s really important as well.

So I think it obviously, cultural competency is important in sort of all facets of a patient’s journey as they kind of have the diagnosis through their treatment. But I think that the other place is really once they enter the healthcare system being aware and mindful of sort of healthcare mistrust both from the provider, from the institution, from a much larger governmental level and being aware of that distrust and really trying to take time to address their concerns.

That specifically at least comes up a lot in terms of clinical trials where we know that minority populations, Black patients are met vastly underrepresented. And so I think specifically in that area, there is really the opportunity to do a much better job in providing transparency about the trial design, about recruiting specifically minority patients. Interestingly, a lot of these landmark trials actually didn’t include race as a measure. And so we know that they’re underrepresented, but we actually don’t know how much minority populations are underrepresented. So important to really understand where patients are coming from when they enter a healthcare institution.

Dr. Nicole Rochester: 

Absolutely. Thank you. Thank you so much for that. Dr. Gamble, can you speak to awareness? You spoke about the fact that sometimes patients are referred to perhaps the wrong provider. You know, there was that sent, you mentioned to a general surgeon instead of to a gynecologic oncologist. And so we can imagine that there may be some challenges both in the primary care setting and perhaps even among general obstetrician gynecologists. So can you speak to how we can elevate the level of awareness to enhance healthcare provider awareness of diagnosis and access disparities and really appropriate referral patterns?

Dr. Charlotte Gamble:

Yeah, absolutely. I think it’s a tough question. I think it’s, again, like all things, it’s a little bit nuanced. Sometimes, again different levels of providers, different parts of the country, everybody practices a little bit differently. So everyone knows once you get a cancer diagnosis, you should probably go to a cancer specialist. And so generally, that’s coming to a gynecologic oncologist generally, or that’s sometimes that’s going to a medical oncologist. But occasionally, sometimes patients will have symptoms where it’s just abnormal bleeding, and they’re seeing a general gynecologist who then does a hysterectomy, and there’s a surprise diagnosis of an endometrial cancer.

Usually they’re, hopefully, they’re not making it too much to kind of the general surgery pathway our general surgery colleagues are awesome, but it’s kind of a different kettle of fish and the type of hysterectomy that’s needed and the type of specific surgery that’s needed to include lymph node assessment is different for somebody who’s getting a cancer surgery for uterine cancer compared to, let’s say, for fibroids or for adenomyosis or a non-gynecologic cancer situation.

I think, again, I’m on the receiving end of all of this, so I see patients who have made it to my doorstep and gotten kind of through the hoops and the barriers, but there’s definitely those out there that we know from the data somehow ended up with their surgery, not exactly in the appropriate hands.

And it’s hard to say, I don’t know if I actually even have advice for like how this is supposed to happen. I think we need to understand kind of the as Dr. Gogoi alluded to earlier, just kind of how prevalent endometrial cancer is right now and how the rates are rising and that abnormal bleeding has to be taken very seriously. And the thing that I harp on the most is a normal ultrasound does not mean there’s nothing else to explore there. There has to be a tissue biopsy.

And really impressing that on both patients as well as the first kind of people that they see, either their primary care doctor or even a nurse practitioner, a physician assistant. Just because there’s a normal ultrasound does not mean that your work is done. And we have studies to really demonstrate how that can delay patient’s care and missed diagnoses can happen. So it’s hard to answer your question, to like, how do we fix the referral pathway system? I don’t know the answer to that, and maybe Dr. Gogoi can speak to that, but I will say from like a screening standpoint, since there’s no great screening test, an ultrasound is not, might be the first step, but it’s definitely not the only step and it cannot be the last.

Dr. Nicole Rochester:

I appreciate that. As you were talking, I was thinking like this needs to be a major awareness campaign, not just for healthcare providers, but for patients as well. You know, this idea that abnormal or or postmenopausal bleeding is never normal and make sure your doctor gets a tissue biopsy and not just an ultrasound. Dr. Gogoi, we’ve talked already about some of the obstacles and barriers faced by patients. Can you talk about some of the obstacles or barriers that are faced by healthcare providers when treating endometrial cancer?

Dr. Radhika Gogoi:

Yeah, I think that the one other barrier that sort of comes up a lot specifically in terms of maybe even in terms of getting a patient to their referring providers or a G1 oncologist is transportation. I find that transportation is a huge issue for our patients. And it’s mostly associated with cost. So I think that one of the things that really, that we can do as a community is to somehow provide means or ways for our patients to get to us once they’re diagnosed. It’s hard enough to get them to us but when they’re facing challenges of cost and transportation, that becomes even more challenging.

So I think that that’s from a patient standpoint. And then, and then I think what Dr. Gamble mentioned about really the barriers for providers is really education around ultrasound and how those how specifically perhaps even in Black women, that it’s not as predictive of endometrial cancer risk and that an ultrasound alone is not enough of a workup for a number of these patients to rule out some underlying pathology. So that’s huge, and again mistrust of the medical profession is something that all healthcare providers deal with. And allowing time for patients to ask their questions, to be transparent about what it is that you’re doing and why I think goes a long way towards overcoming those challenges.

Dr. Nicole Rochester:

Thank you both for that. I think we’ve gotten a lot of information around the causes of the disparities and some actions that we can begin taking. Are there any unforeseen or outdated practice-related barriers that may hinder your work and that of your colleagues? And on that same note, are there any solutions or actions related to those? And I’ll start with you on this one, Dr. Gamble.

Dr. Charlotte Gamble:

Well, starting all the way back, I think an outdated practice is not listening to patients, and not recognizing your own privilege as a provider. I think that to Dr. Gogoi’s point that she’s mentioned a couple of times now, I have innumerable patients that just felt that they were not listened to felt that they couldn’t…that their stories were not being heard, that they faced no’s, no’s, no’s at multiple levels in trying to seek care for abnormal bleeding, and come to me very frustrated and kind of weary. And I think just really understanding how vulnerable patients are when they’re seeking care, and being cognizant of the privilege that we have as healthcare providers is something that is more contemporary compared to an outdated practice of being very paternalistic.

I guess sometimes I have had patients who are like, yeah, I was told that I needed a biopsy and I just…the way that they told me and the way that they said that it had to be done tomorrow, it freaked me out, and I couldn’t do it. And it’s just kind of unfortunate when the recommendations might be correct, but the way in which it’s being delivered is not being received by the patients in a way that they’re able to be receptive to.

I think another outdated practice again that I harp on that I’m such a strong believer in is like just the role of the ultrasound. I really, I don’t like it. I hate it. I think it’s useful for knowing uterine size and maybe if there’s some kind of stuff inside the uterus, but abnormal bleeding either before menopause or after menopause has to have a tissued biopsy. So I think that’s outdated to just get an ultrasound and have the patient come back, because it continues to perpetuate delays in care, and I think disparities to an extent. Another outdated…no, I don’t know. Is there anything else, Dr. Gogoi, that you’d add to this?

Dr. Radhika Gogoi:

I feel like this is a lot lot older now. It used to be at one point that we used to do all our endometrial cancer patients with open surgery. I think that now, I guess it’s even more outdated than outdated. Most of the surgeries are now pretty much done either minimally, invasively laparoscopically or robotically. There are obviously extenuating circumstances to both of those things, but I think approach to surgery is also sort of evolved.

The treatment paradigm for patients with advanced endometrial cancers has evolved even more so in the last maybe two years or so with the role of immunotherapy. So encouraging our patients to be educated about their options, both for route of surgery, for treatment and to make sure to ask those questions at the time of their office visit I think is something that we should all encourage.

Dr. Charlotte Gamble:

I would dovetail from that and also say, to kind of harken back to some of the other things we discussed in terms of referral pathways and things like that, and just how gynecologic oncology care is delivered in different parts of the country, there are various models for this, and so classically, patients who have gynecologic cancers, including endometrial cancer are managed solely by the gynecologic oncologist, meaning a surgical subspecialist like myself or Dr. Gogoi, who not only do the surgery, but also deliver if patients need it chemotherapy or specialized systemic therapies afterwards, sometimes with a component in partnership with a radiation oncologist.

But there are parts of the country by institution or by geography where the care that comes after the initial surgery done by the gynecologic oncologist might be shared with a medical oncologist who may or may not actually have super sub-specialized training when it comes to gynecologic cancers, because again, historically, this has been an area that’s been managed really by our subspecialty.

And so I encourage patients as well as referring doctors, et cetera, et cetera, to make sure that whoever, if there’s additional therapies that are needed after the hysterectomy is done, such as chemotherapy or immunotherapy, as Dr. Gogoi alluded to, that that is done in partnership with a gynecologic oncologist, because our field is kind of driving where so much of the contemporary understanding of how to manage these conditions long-term is coming from. And to make sure that if a medical oncologist is doing this, they feel very competent. They do this all the time, and they’re working in close partnership with their gynecologic oncology colleagues.

Dr. Nicole Rochester:

Wonderful. Thank you for that. So as we talk about outdated practices, I guess the other side of the coin is innovation and continuous improvement. And so I’ll turn this question to you, Dr. Gogoi. How can healthcare providers and hospital leaders foster a culture of innovation and continuous improvement? So that’s some of these outdated practices that you all, that you and Dr. Gamble, discussed are really no longer a thing?

Dr. Radhika Gogoi:

Yeah. So I couldn’t agree more.I think that some of those innovative approaches really come from enrolling in clinical trials. And so I think that the importance of having minority populations, equally represented in clinical trials is essential. Otherwise we’re not going to make the progress that we need to make to really equal the playing field here, so to speak. So I think that that really is a huge player trying to educate patients about clinical trial options, being transparent about what those look like, who benefits, what the data suggests, why it’s important to me is again, really key.

Dr. Nicole Rochester:

Wonderful. And Dr. Gamble, if we were to be specific, are there any healthcare provider to healthcare provider strategies, anything that you’ve seen work, maybe things that you’ve done yourself, innovative approaches or protocols with regard to this idea of innovation and continuous improvement?

Dr. Charlotte Gamble:

Yeah, I think different institutions have different cultures, and I think having institutional culture that embraces change that is, desires to be on the vanguard of advancing science, and the science could be in terms of bench research. It could be in terms of clinical trials, it could be in terms of healthcare delivery, really trying to advance and push forward. The science and how we get the best care to our patients in the most timely fashion I think is really important. Culture is hard to change, and we all work in institutions that have various different cultures. I think that healthcare provider to healthcare provider, I think open lines of communication are great. I tell folks, text, call, email, whatever you need to do to get patients in a timely fashion is necessary.

I think the understanding of we are one person working within a team is really necessary. So patients might say, oh, Dr. Gamble this, Dr. Gamble that, but I always, always, always tell them that I cannot do this work without my nurse navigator, without my fellow, without my residents, without my inpatient floor nurses, the oncology nurses, and really understanding that oncology care specifically is a really big team sport.

And healthcare leaders, when we’re thinking about things from a system level, I think sometimes have different like just help making sure that everybody understands how much of a team sport that this is. How much the radiation oncologists, the medical oncologists interface with us on a regular basis, I think is really important. And to understand that we’re all in this together to deliver the best care to our patients. I really think the role of health, like nurse navigators and lay navigators needs to be further pushed forward within our field, including not only gynecologic oncology, but just gynecology in general, and that’s some of the work that I’m doing from a research standpoint now. And so I’d love to see the role of navigators be fully embraced and somehow reimbursed by healthcare systems in general.

Dr. Nicole Rochester:

Absolutely. Well, it is time to wrap up this roundtable. I have really enjoyed talking with both of you as always. I have learned a lot. I’m sure that our audience will learn a lot from this conversation. And before we go, I’d love to get closing thoughts. So I’m going to start with you, Dr. Gogoi. What is one takeaway message that you would like to leave with the healthcare professionals who will watch this program?

Dr. Radhika Gogoi:

So I guess the one takeaway would be that, as I think about my role in sort of disparities prevention, if you say it is really as an educator, and so the importance of community education on symptoms, on diagnosis, on treatment approaches, I think it’s essential that we don’t think of ourselves as a silo. I’m not just, but I’m part of the larger community as Dr. Gamble spoke about. And to be part of that larger community means that I need to be within that community and function within the community. So whether it’s me, community navigators, health educators to really play a role in educating our patients about how to approach their symptoms.

Dr. Nicole Rochester: 

Wonderful. Thank you, Dr. Gogoi. And what about you, Dr. Gamble, what’s your closing thought that you would like to leave with the audience?

Dr. Charlotte Gamble: 

Yeah, I think for healthcare providers in general, I think the thing that I think is most important is, again, being able to listen to patients, working and encouraging the systems that we are housed into, be able to be responsive to them, so that if patients are educated, do know that there’s something wrong. They’re able to not only get a hold of someone, but also be listened to and heard and taken seriously. And we have a lot to do in that regard. So I think just understanding again, our role and how privileged we are to be in our jobs, in this line of work, and being able to leverage that to listen to patients and get them the timely care that they need.

Dr. Nicole Rochester:

Wonderful. Well, thank you both again, Dr. Gogoi, Dr. Gamble, thank you for this enlightening conversation. We’ve learned so much about endometrial cancer. I think for me, the main takeaway is postmenopausal bleeding, abnormal irregular bleeding is never normal. It needs to be evaluated. You both spoke about the importance of biopsy and not just an ultrasound, and in fact that ultrasound can be normal.

And with regard to disparities, I really appreciate both of your thoughts around community education, and this being a team sport and listening to our patients. So again, thank you so much for being here today, and thank you all for watching the program and tuning into this Empowering Providers to Empower Patients, Patient Empowerment Network program. I’m Dr. Nicole Rochester. Thanks again for watching.


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Dr. Michael Kelley: Why Is It Important for You to Empower Patients?

Dr. Michael Kelley: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

Why is it important to empower patients? Expert Dr. Michael Kelley from Duke University School of Medicine discusses key concepts and communication methods that he utilizes with his patients to collaborate with them in their cancer care.

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Transcript:

Dr. Michael Kelley:

The key concepts that I try to work on in order to empower my patients is, one is to let them know that we’re a team, that I work for them, and that the information that I have, I want to make sure that they have. And any information that they have, like what symptoms they’re experiencing, or any tests that were done that I didn’t order, that all that information gets put together and we discuss that together as a team and make a plan to go forward so that there is access to all the information and there’s complete transparency and open lines of communication.

So that to me is the core of empowerment, is that, there is a conjoined team-like effort which is being exerted to the benefit of the patient and what the patient’s goals are. And the characteristics of that relationship are, as I said, are communication and information and mutual respect for each other so that when you work together you’re going to get a much better result than if you’re working separately.

Dr. Andrew Hantel: Why Is It Important for You to Empower Patients?

Dr. Andrew Hantel: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

How does Dr. Andrew Hantel empower his patients in their treatment decisions? Dr. Hantel from Dana-Farber Cancer Institute and Harvard Medical School explains how he engages patients by understanding their personal values and the importance of making medical decisions in the context of their lives and communities.

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Dr. Eugene Manley: Why Is It Important for You to Empower Patients?

Dr. Eugene Manley: Why Is It Important for You to Empower Patients? 

Transcript:

Dr. Andrew Hantel: 

I empower my patients by having conversations where I’m asking them a lot about who they are and who they are in the context of their loved ones and their community. Because I think that when I’m talking to people about treatment for their disease and any medical decision that we’re making, it has to be in the context of what’s important to them and not necessarily what the risks and benefits are in the medical ease sense, but what are the risks and benefits in terms of who that patient is and wants to continue to be.

And that can mean that people don’t want to spend time in the hospital, want to you know kind of live and continue to live healthy until a certain milestone and really want to push to do anything to make it to that. It can be that they, you know, really want to focus on spending time at home with their loved ones and not having to come back and forth to the hospital.

And I think a lot of the way that we talk to patients is to kind of fall back on data of risks and benefits and side effects, but not necessarily connected to who that person is or wants to be. And so I think it’s important that we continue to kind of center these decisions around the person and who they are kind of in their community and amongst their loved ones, so we can make choices that continue to be beneficial for kind of who they are as a person.

Dr. Christina Baik: Why Is It Important for You to Empower Patients?

Dr. Christina Baik: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

Why is it important to empower patients? Expert Dr. Christina Baik from Fred Hutchinson Cancer Center shares her approach to patient care, educating patients, involving other care team members, and preparing patients for informed decisions.

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Transcript:

Dr. Christina Baik:

In my opinion, the best way to empower your patients is to really give them knowledge. Knowledge about their own disease so that they really understand what they’re dealing with, so that they can make decisions that are appropriate for them and their family and be consistent with their priorities.

So one thing that I run into a lot really is as simple as patients not understanding our treatment is palliative or curative. And many patients say, “If I knew this was a palliative treatment, I would have made a different decision about this particular treatment.” So really making sure that they understand their disease, they understand the intent of their treatment so that they can make the decisions that are right for them.

And also, really give them room to ask questions. I think this is really hard in a busy practice. So what I often do is, if it’s feasible is that if I know this is going to be a difficult visit, patients have many questions, and it’s gone…it could potentially be a long visit, then I would often involve my nurses and my nurse practitioners, so to kind of hear them out, understand what their questions are so that I can really address them when it’s time for my appointment. So I would say knowledge, really understanding their disease and making sure that they have all the information so that they’re making an informed decision.

Dr. Eugene Manley: Why Is It Important for You to Empower Patients?

Dr. Eugene Manley: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

Drawing from his experiences interacting with patients, survivors, and caregivers, Dr. Eugene Manley emphasizes the significance of providers meeting patients “where they are” emotionally, mentally, and logistically.

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Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients

Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients? 

Transcript:

Dr. Eugene Manley:

So, you know, I talk to patients here and there and I’ve talked to survivors and I talk to caregivers of families, of people that have had family members that have, unfortunately, passed away from lung cancer. And the key thing they always say is they, you have to meet people one where they are and not where you want them to be.

So that means you have to really listen to what they need and say break down the jargon, be comfortable, ask, answering the questions because the patients don’t know any of this stuff when they go in. And pretty much when you are hit with a cancer diagnosis, there are 10 other thoughts going through your mind beyond just the cancer. 

Like, how am I going to pay for rent, food? Can I tell my family? Do I…will I lose my job? Will I lose my insurance? There are many, many other thoughts, and then it’s like, well, how much time do I have left? And then that’s where you even start thinking about, okay, what are my options? So you have to really walk with them.

I think a key part in this that we often don’t have are those nurse navigators are really, really key in this stage is they help really translate and walk the patient from dealing with the clinician into all the stuff that’s going to be going downstream. So just really, really critical to listen to the patients and try to have that ear and really think what’s in their best interest and not dismiss them.

Dr. Joshua Sabari: Why Is It Important for You to Empower Patients?

Dr. Joshua Sabari: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

Dr. Joshua Sabari emphasizes the importance of active listening and non-judgmental communication in patient care. Dr. Sabari shares how allowing patients to express themselves fully and addressing all their concerns without interruption fosters trust and empowerment.

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Transcript:

Dr. Joshua Sabari:

I think the key thing to empower patients is to listen and not to judge. The second a patient feels that you are cutting them off, you are judging them, they’re going to shut down. Family members shut down. Allowing patients to express themselves, to explain what the questions they have, never leave a visit when your patient has not finished their questions.

And I know that sounds silly, but you’d be surprised how many physicians walk out of office visits when patients still have many questions. That’s our job, that’s our role. You can set up another visit, you can set up a video visit, but make sure that you allow patients to ask their questions in an open manner, in a non-judgmental manner. Even myself, we all have biases. I find myself changing my facial sort of nuances when I think a patient is asking a silly question.

So understanding those biases that we all have and again, being open, sort of being sort of willing to hear and listen to our patients is critical. We’re not the person diagnosed with the lung cancer. It’s the patient there in front of us, the family members. I think being open, being able to listen broadly to patients’ concerns, even if they’re not in line with our concerns, I think is critical. Any point at which you shut down that conversation that may close that patient relationship down, that may close some of those questions that may have been critical for patients.

So, one thing that I always end our visits with is an open, this is an open discussion. This is how you contact me, this is how you contact our team. We are here for you. We are service providers to you. And I think that in itself having this sort of motivational but also open dialogue is going to empower your patients, not only to ask questions and the right questions, but to allow them to tell you when they’re not feeling well, when something is going wrong.

Dr. Samuel Cykert: Why Is It Important for You to Empower Patients?

Dr. Samuel Cykert: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

Why is it important to empower patients? Non-small cell lung cancer (NSCLC) expert Dr. Samuel Cykert from UNC School of Medicine discusses the Greensboro Health Disparities Collaborative and ways that he works to empower his patients.

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Dr. Sara Taveras Alam: Why Is It Important for You to Empower Patients?

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Transcript:

Dr. Samuel Cykert: Yeah, I think the most important thing in empowering patients is communication. First of all, on the explanation side, you have to communicate to the patient that I’m talking to you in normal English that you can understand. I’m not using medicalese to make it impossible for you to understand, so I’m communicating in a way where I’m making it digestible, and then the other thing I always do is I use a teach-back and I ask the patient to tell me what they’ve heard, I want to make sure that the patient can translate back to me the kinds of things that I’ve been saying, but even on top of that, I try to always talk to patients about their families and how their families are fitting in because family is so important in the decision-making process, and even having a family member at the discussion who’s supportive of treatment and care, I think can be another important factor. And I want to communicate that I’m listening, I want the patient’s questions, I want to encourage him or her to ask questions, so that this decision is shared.

Yeah, the only important thing is I did mention the Greensboro Health Disparities Collaborative, which is a community group, some of whom have experienced cancer, some of whom are teachers and UPS drivers, some of whom are healthcare professionals, and there are also patients of color and white individuals and it’s a group where the feedback, particularly in the context of a racial equity training, where everybody’s speaking the same language, their feedback on designing the interventions of the studies we’ve done, the feedback was crucial, and it was a matter of, we heard them, we heard the principles that they wanted to establish, and then we took those principles and used our expertise to translate them into the healthcare system, into the cancer care system. So I just want to say that talking to the community, particularly the community that experiences barriers, really important.

Empowering Providers to Empower Lung Cancer Patients

Empowering patients is at the heart of efforts at Patient Empowerment Network (PEN), and work toward reducing health disparities is part of conversations among healthcare professionals. Precision medicine and the use of biomarker testing is one area of interest in efforts to eliminate healthcare disparities

With this in mind, PEN has taken on a new initiative, the Empowering Providers to Empower Patients (EPEP) initiative. Starting in lung cancer, the program expands PEN’s reach to healthcare professionals with the goal of improving physician-patient communication; shared decision-making; and the role that lung cancer patients, survivors, care partners, and healthcare professionals each play in the shared decision-making process.

The EPEP initiative includes the following resources:

  • Needs Assessment outlines key factors that enable patient empowerment, attributes of an empowered patient, and advice for healthcare professionals to perform a needs assessment for each patient.
  • EPEP Roundtables with lung cancer experts Dr. Heather Wakelee, Dr. Lyudmila Bazhenova, Dr. Leigh Boehmer and Dr. Jessica Bauman as they discuss a range of topics including ways to improve physician-patient communication, learnings from tumor boards, collaboration between academic and community oncologists, biomarker testing, and addressing barriers to biomarker testing.
  • EPEP Vignettes where lung cancer clinician Dr. Jhanelle Gray from Moffitt Cancer Center shares her experience in biomarker testing, personalized combination therapeutics, and best practices in treating and empowering patients toward more equitable and culturally sensitive care.
  • EPEP Biomarker Testing Resource Guide that covers benefits of biomarker testing, when to test, dos and don’ts of biomarker testing, perspectives from a patient and a clinician, and resources for patients.
  • EPEP Portal utilizes PEN’s robust resource library and that of numerous trusted advocacy partners to create a vetted list of patient education resources. PEN delivers a curated PDF according to your interests and delivers it efficiently to your inbox.
  • Infographics that address the differences between cultural competence versus cultural humility and key steps to work toward practicing cultural humility to help empower your patients in their lung cancer care.

Dr. Jhanelle Gray quote

Key Takeaways to Help Empower Lung Cancer Patients

PEN had the opportunity to interview experts Dr. Jhanelle Gray, Dr. Heather Wakelee, and Dr. Leigh Boehmer to learn about some of their expertise. They shared their perspectives about vital ways that they work with patients to help empower them and to work toward the best personalized care for each patient.

Dr. Boehmer shared the importance of biomarker testing to identify driver mutations, “…more than half of patients who’ve developed lung cancer who have never smoked or have a light smoking history are going to have an actionable driving mutation, and even in people who do have a smoking history, of any ethnic background, they’re still 10 to 20 percent or maybe more as we identify more of these driver mutations, where that’s what’s really the force in the tumor.

And if you find it and you can start someone on the appropriate targeted therapy, usually across multiple trials, the toxicity is less than you would get with chemotherapy or immunotherapy…the probability of response is over half, you know, if someone’s going to have a benefit that that’s going to help them feel better for a period of time in controlling their cancer, it really drastically changes their whole tumor outcome, they’re going to be living longer, feeling better, and ultimately that’s our goal when we’re helping someone with metastatic disease…You have to have the physician aware of the importance of finding the mutation, altering the treatment as necessary, and giving that patient the best possible option for care.

Dr. Gray and Dr. Boehmer also have preferred medical terms when they explain to their patients about biomarker testing. Dr. Gray prefers to steer away from terms that have to do with genomics or genetics and uses the terms “biomarker testing” or “comprehensive biomarker testing” instead. While Dr. Boehmer shares, “I think that’s really important that people always remember to talk about the tumor and not about the mutation in the person, that’s really, really critical.

Physician Best Practices for Biomarker Testing

With her experience in using biomarker testing in planning personalized combination therapeutics, Dr. Gray shares advice for other healthcare providers. “I think for a provider it is going to be very important when a patient is newly diagnosed with non-small cell lung care especially when they have advanced and later stages as this should be a comprehensive test. This should be a certified assay. I think they should also look at turnaround time for this testing, does the assay include a liquid biopsy portion and a tissue biopsy portion? Is there one that you want to run before the other?

Many times what I will do when I meet a patient initially and they have an advanced or metastatic stage non-small cell lung cancer, I’ll send off the liquid biopsy right then and there, the same day in the hope that I can get the test results back within 7 to 10 days. I will also order the tissue testing. Should the liquid biopsy results from the blood specimen come back sooner, then I can cancel the tissue testing if I feel confident enough in the results. This will then preserve tissue for later analyses. It can also preserve tissue should they need to enroll in an innovative clinical trial and expand their therapeutic options.”

HCP Roundtable

Advocacy for Biomarker Testing

Dr. Wakelee speaks to advocacy for biomarker testing, “…many organizations, including IASLC, including ACCC, including NCCN…I mean, you could name any organization that’s involved in cancer care and education, is really focusing on this issue of making sure that every oncologist knows the importance of doing biomarker testing for patients with non-small cell lung cancer, that we are trying to expand that not just to the oncologist, but also to the folks making the diagnosis, so they can be aware as well…The more people who are aware that’s a standard of care in treating lung cancer, the more that’s going to happen, and then continuing to explore those financial barriers, and as more agents are FDA-approved, where that becomes a preferred first sign option, but you only know that if the testing’s happened, that leads to campaigning to make sure that the testing is being covered as well.”

Dr. Boehmer further explains about the logistics of advocating for biomarker testing. “ACCC…recognizes that a lot of community programs don’t have kind of operational best practices for how to incorporate biomarker testing into a patient’s journey…we’re working on creating care pathways which will help multidisciplinary clinician teams integrate discussions of biomarker testing and its impact at various critical time points along a patient’s diagnosis to treatment, to survivorship or end-of-life care…talking about when and how to have meaningful conversations, and then doing it with health-literate, vetted resources and through a lens of equity and shared decision-making, because you look like me, you had success with it. I’m going to do it for my at-risk patients as well, because one, it’s the right thing to do. And two, you taught me how to do it, and three, you told me what success looks like so I can measure myself against you, and that’s a successful model for scalability.”

And Dr. Gray shares advocacy organizations and ways to move toward biomarker testing equity for all patients. “For those again who are having some difficulty with getting biomarker testing for their patients, I would strongly encourage you to find an advocacy organization such as American Lung Association, LUNGevity, GO2 Foundation, there are many many others out there that are very much interested in improving access to patients with non-small cell lung cancer. This is really a critical area of need and that we really have to drive forward with healthcare equity in this setting…And so, I think putting all this together and coming together as a field is where we can move together and with the patients, the providers, and the advocacy organizations I think that we should all feel empowered to move the needle forward for our patients.”

The bottom line is, while oncologists have more tools to treat lung cancer, access and language remains a big factor in biomarker testing. Comprehensive biomarker testing can play a very important role in the personalized treatment for patients with non-small cell lung cancer (NSCLC), but many questions remain. How do we improve clinician-patient conversations in biomarker testing? And how do we remove barriers that can impede an HCP’s ability to treat patients with personalized care? As the lung cancer field continues to experience tremendous growth in precision medicine, we hope healthcare providers can take advantage of these timely resources of the EPEP initiative to work toward equitable and culturally sensitive care for lung cancer patients. 

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PODCAST: HCP Roundtable: Improving Clinician-Patient Conversations in Lung Cancer Biomarker Testing

 

Comprehensive biomarker testing can play a very important role in the personalized treatment for patients with non-small cell lung cancer (NSCLC). How do we improve clinician-patient conversations in biomarker testing? And how do we remove barriers that can impede an HCP’s ability to treat patients with personalized care?

Dr. Heather Wakelee, Professor of Medicine and Chief of the Division of Oncology at Stanford University School of Medicine and Dr. Leigh Boehmer, medical director at Association of Community Cancer Centers (ACCC) weigh in on this very important topic.

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Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients (EPEP) program. I’m Dr. Nicole Rochester, pediatrician and CEO of Your GPS Doc. In this Patient Empowerment Network program, we connect leading lung cancer expert voices to discuss enhancing physician-patient communication and shared decision-making in lung cancer care. Some of the topics we’re going to tackle in today’s conversation include the challenges and solutions for biomarker testing in the community hospital setting and in academic centers.

We’re also going to talk about removing barriers that can impede a healthcare provider’s ability to treat patients with personalized care, improving clinician-patient communication with regard to NSCLC biomarker testing, and we’re also going to explore opportunities to improve access to personalized care for all patients. I am thrilled to be joined by thoracic medical oncologist, Dr. Heather Wakelee, Professor of Medicine and Chief of the Division of Oncology at Stanford University School of Medicine. Dr. Wakelee is also President of the International Association for the Study of Lung Cancer. I am also thrilled to be joined by Dr. Leigh Boehmer, Chief Medical Officer at the Association of Community Cancer Centers. Thank you both for joining us today.

Dr. Leigh Boehmer:  

Thank you.

Dr. Heather Wakelee:

Thank you.

Dr. Nicole Rochester:

So we know that biomarker testing connects the right patient to the right treatment at the right time and potentially to the right clinical trial, but there also are some challenges and interventions are necessary, and that’s going to really frame our conversation today. So I’d like to start with the general landscape, so I’m going to start with you, Dr. Wakelee, what in your opinion and expertise are the existing challenges as it relates to biomarker testing in academic medical centers?

Dr. Heather Wakelee: 

Thanks for that question, Dr. Rochester. I think that the biggest challenge is making sure that every patient with a new diagnosis of advanced stage non-small cell lung cancer gets the testing done and gets the testing results back before they start treatment, right? And that’s the goal. I guess that’s more of the goal than the problem, and the challenges come in each of those different phases. First is making sure that every patient is given access to the testing, and there are barriers if the patient ends up very, very sick in a hospital setting.

There are some regulations that can make that challenging, they might be…their first encounters with the healthcare system are going to potentially be with pulmonologists, general practitioners, interventional radiology. And those people might not be aware of what needs to happen to get the tissue as quickly as possible into testing, they might not be as aware of drawing a blood test, if we’re going to do a liquid biopsy, and so if those things aren’t initiated first, when the patient gets to see the oncologist some days or even a week or two later, we’re already further down the path.

They might be starting to get symptoms, and then when you start the testing, you might have to wait longer than is really acceptable before you have the results that could inform treatment. And as you said, Dr. Rochester, the testing, when we get those molecular results back, that’s going to help us figure out what’s going on in that tumor that might change our treatment options, because there’s a driver mutation where there’s a new drug approved that’s going to be the best efficacious opportunity for that patient. And if they don’t know, they can’t start it, we also run into issues where if the patient’s symptomatic, we can’t wait, and then they get started on chemotherapy and immunotherapy, which might otherwise be a standard approach, immunotherapy is in the body, chemotherapy is in the body, the toxicity is there, and then if you later find out, oh, there was a driver mutation, your hands are a little tied, because the toxicity can be amplified if you combine agents and the immune therapy is in the system for months.

So these are some of the challenges and really the barriers…the biggest barriers from my perspective are not every patient is being tested with comprehensive testing as early as possible, right?

Dr. Nicole Rochester:

Thank you for that, Dr. Wakelee, you’ve really, really outlined how the challenges around access to testing and even the timeliness and the importance of timely testing and the fact that these patients are often kind of making their way through a series of providers before they get to the oncologist. So I appreciate that. Dr. Boehmer, I know you have a lot of experience in the community setting where we know there are a host of additional barriers, so I’d love for you to weigh in on this question, and what challenges are you seeing with biomarker testing in the community setting?

Dr. Leigh Boehmer:

Thanks very much for the question. Yeah, I think the use of precision medicine was initially touted as this opportunity to address care disparities, whether that’s in racial ethnic minorities, differences between academic and community practices, et cetera, by using the technology to try to determine treatment largely based on things like the genetic makeup of a tumor. And, unfortunately, in reality disparities have sadly only continued to grow in the setting of targeted and/or testing related to things like ability to pay and insurance coverage for testing, mistrust in the healthcare system, and historical injustices related to cancer care delivery. And there’s a significant discordance in literature between patients and clinicians understanding of the importance of biomarker testing relative to treatment planning.

So even now in 2023, as more states are passing legislation to expand coverage of comprehensive testing, we’re hearing from member programs of ACCC running up against increasing prior authorization restrictions and requirements, and there are unfortunate ramifications of that, like additional costs to programs or additional costs to patients, for example, in the setting of reflexive testing, there’s also a lot of ongoing data which suggests concerning continued racial disparities in rates of guideline concordant testing. So there’s a lot of opportunities for us to learn, yes, from what we have done in successful models of rollout of testing, but we’re still confronting some pretty major challenges and barriers, and I’ve got to say that’s true whether you’re talking about community programs and practices or academic partners as well.

Dr. Nicole Rochester:

I really appreciate you adding that layer, Dr. Boehmer. As someone who does a lot of work in health equity, I was just sharing prior to us recording that these disparities are pervasive, and now we’re learning it’s in lung cancer, and for all of the reasons that you stated, and it’s interesting that when we really start to look at our progress, and when we look at it by comparing different racial and ethnic groups, we find, as you stated, that sometimes the disparities actually widen.

And so it’s not that these aren’t great practices and precision medicine is a wonderful thing, but to your point, if we’re not ensuring that everyone has access to this new technology, then in fact, not only do we continue to see disparities, but sometimes that we inadvertently worsen them. So I appreciate you sharing that. Both of you have been on the ground floor of research in this area with regard to biomarker testing and availability and disparities. So I’d love for you to talk a little bit about the data and what does the data tell us with regard to biomarker testing? It’s important, some of the challenges that you both just stated, and so I’ll start with you this time, Dr. Boehmer.

Dr. Leigh Boehmer:

[chuckle] Thanks, I appreciate it. I’ve been privileged to work with both providers and patients’ caregivers, taking a closer look at some of the barriers and then practical solutions that might be utilized to address some of these concerns around testing. So back in 2021, ACCC used the mixed methods approach to try to understand the motivators of patients and providers, their practice patterns, their attitudes, the educational needs of patients and providers related to biomarker testing and beyond. And you know what’s really interesting, in almost 100 total provider respondents, less than half of community clinicians who responded said that they used biomarker testing to guide patient discussions.

And that was compared to nearly three-quarters of all responding academic clinicians, and it really made us start to think about…so, you know, the impetus for testing in the context of testing. In this particular research, to my earlier comments, we were actually targeting patients with non-small cell lung cancer who were uninsured, underinsured and/or covered by Medicaid. So dual eligible beneficiaries, and it was really interesting because we looked at why and how conversations were happening about biomarker testing between providers and patients, and really identified some tremendous opportunities for education around clinicians’ needs to become more familiar with guideline concordant testing and to have more practical applications of guideline concordant testing, so things like case-based examples, so then ultimately they could have optimal conversations with patients and help coordinate multidisciplinary care.

There’s also data which would suggest a disconnect between ordering testing after initial staging versus ordering testing at the time of initial biopsy. And, Dr. Wakelee, you said something that really resonated with me because if we can identify patients who need to be tested, if we can have access to testing, we still have a disconnect, and this is largely seen in community programs today where clinicians may be waiting 10 days, 14 days, even longer to receive results of testing. And you’re right, we have patients who need treatment initiated sooner than later, and you miss these opportunities because of delays, prior authorizations and a lot of other things, So the data certainly quantitatively, qualitatively is speaking to this hierarchy of problems and there’s definitely some mismatches between patient and provider perceptions of why testing happens, what it’s used for, and timing of the testing and results sharing.

Dr. Nicole Rochester: 

That is fascinating, and we’re definitely going to get deeper into that, this whole patient-provider interaction, so I really appreciate you introducing that and thank you for all the research that your organization has done in this area. So, Dr. Wakelee, you’re on the academic side of things, and you also have been deeply involved in research in this area, so what would you like to offer from your perspective in terms of the data around biomarker testing?

Dr. Heather Wakelee:

Well, thanks, and, Dr. Boehmer, you have a very comprehensive answer there, I think that the differences between academic and community sometimes are broad and sometimes aren’t that big at all, and I do think we face a lot of the same challenges. It’s just…it’s making sure that when a physician is meeting with a patient, and let’s say it’s with the oncologist, that the oncologist is really mindful that any patient with non-small cell lung cancer could have a tumor with a driver mutation. I think it’s easy to stereotype and think that only certain patients are going to, and therefore we shouldn’t be testing everybody. And that gets dangerous. I think it also is a matter of where you’re in practice, and if you’re in a practice where the prevalence of the driver mutations and the tumors is low, you might just say, “Oh, I’m never going to see it,” and you stop testing, and that’s also very dangerous because we have seen in multiple trials, as we get back to that research question, that if we can identify a driver mutation…

And we know that more than half of patients who’ve developed lung cancer who have never smoked or have a light smoking history are going to have an actionable driving mutation, and even in people who do have a smoking history, of any ethnic background, they’re still 10 to 20 percent or maybe more as we identify more of these driver mutations, where that’s what’s really the force in the tumor. And if you find it and you can start someone on the appropriate targeted therapy, usually across multiple trials, the toxicity is less than you would get with chemotherapy or immunotherapy.

Usually the probability of response is over half, you know, if someone’s going to have a benefit that that’s going to help them feel better for a period of time in controlling their cancer, it really drastically changes their whole tumor outcome, they’re going to be living longer, feeling better, and ultimately that’s our goal when we’re helping someone with metastatic disease. And if you don’t know that the tumor has a driver mutation, you’re never going to give them that appropriate treatment, and I think that is the real challenge that we face, and there are multiple different angles to that, right? You have to have the physician aware of the importance of finding the mutation, altering the treatment as necessary, and giving that patient the best possible option for care.

But it also is making sure that the patients are open about this, because I think there’s still a lot of misperceptions about when we talk about driver mutations and the word mutation, making sure that people understand we’re talking about the cancer and not about the person. And in a short conversation that can sometimes be missed, and then people are afraid of getting tested, afraid of what that might mean for them or their family, and so the communication around, we’re going to test your tumor because your tumor might have a mutation that’s going to allow us to give different care. I think that’s really important that people always remember to talk about the tumor and not about the mutation in the person, that’s really, really critical.

And also to avoid that stereotyping about who do we test and who do we not test, pretty much anyone with a non-squamous, non-small cell lung cancer, their tumor needs to be tested, and many people who have a squamous cytology that’s also reasonable. So that’s the people aspect of it, the insurance barriers and the interpretation of the results, those are still there as well. And even if you have perfect communication and the patient understands and you get the testing done immediately, you still have to deal with, is it going to get covered or not? And the results come back, is it going to be interpretable or not? Because that can sometimes be tricky also. 

Dr. Nicole Rochester:

Wow. I would say you two have really uncovered a lot of barriers, and it’s enough to make someone feel a little bit discouraged, I would say, however, because of the work that both of you are doing and so many others, we know that there indeed is hope. And so I’d love to shift a little bit. We’ve talked a lot about the barriers, which are many, what’s on the horizon or what positive trends have you all seen, and specifically what are the opportunities, what are some things that are either happening or that are being explored with regard to removing some of these barriers or all of the barriers that each of you have talked about? I’ll start with you, Dr. Wakelee, give us some hope.

Dr. Heather Wakelee:

All right. Great. Well, I think there is reason to have hope. Absolutely. There always is reason to have hope. And so many organizations, including ISLC, including ACCC, including NCC…I mean, you could name any organization that’s involved in cancer care and education, is really focusing on this issue of making sure that every oncologist knows the importance of doing biomarker testing for patients with non-small cell lung cancer, that we are trying to expand that not just to the oncologist, but also to the folks making the diagnosis, so they can be aware as well. Patient advocacy groups are very engaged in this as well, making sure that when someone is newly diagnosed, if they reach out to an advocacy group, one of the messages they hear is, have you asked about testing what’s happening with the tumor testing?

The more people who are aware that’s a standard of care in treating lung cancer, the more that’s going to happen, and then continuing to explore those financial barriers, and as more agents are FDA-approved, where that becomes a preferred first sign option, but you only know that if the testing’s happened, that leads to campaigning to make sure that the testing is being covered as well, you know, when you can argue, this patient isn’t getting the FDA-approved best care for their cancer because that testing wasn’t done, that’s a really powerful statement. And I think that’s what we’re seeing change happening.

Dr. Nicole Rochester:

That is incredible, thank you. Thank you so much. I can smile again.

[laughter]

Dr. Nicole Rochester:

What about you, Dr. Boehmer? I know you’re getting…your organization is doing a lot of work in this area, so tell us about some of the advances, some of the improvements and tackling some of these barriers that both of you have elucidated today.

Dr. Leigh Boehmer:

So, Dr. Wakelee, thank you for all of those hope-inducing concepts and methodologies, because I honestly believe that so many of us learn best today by seeing someone like me doing X, Y, Z, so I know I can do it as well. So I think it’s about documentation of justification of testing for prior authorization claims. I think it’s about working together with the multidisciplinary team, pharmacist, advanced practitioners, oncology-certified nurses to help manage that back and forth with testing and external pathology and laboratory companies, to make sure that results show up in the right spot in the electronic health record so that they can be interpreted, shared with patients, communicated and contextualized in real time. I think it’s about greater incorporation as we’ve seen across so many of our programs of the tenets of shared clinical decision-making, and how to have a meaningful conversation with a patient and/or their caregivers about testing and its role on treatment and drug selection, and outcomes, and progression-free survival. And there are a lot of programs out there that are doing bits of this or different points along that continuum.

ACCC, for example, building on the research I shared before, recognizes that a lot of community programs don’t have kind of operational best practices for how to incorporate biomarker testing into a patient’s journey, and so for lung, and also, for example, for breast cancer, we’re working on creating care pathways which will help multidisciplinary clinician teams integrate discussions of biomarker testing and its impact at various critical time points along a patient’s diagnosis to treatment, to survivorship or end-of-life care. And those are just examples of us not being overly duplicative, but putting all the resources in one place, talking about timing, talking about when and how to have meaningful conversations, and then doing it with health-literate, vetted resources and through a lens of equity and shared decision-making, because you look like me, you had success with it. I’m going to do it for my at-risk patients as well, because one, it’s the right thing to do. And two, you taught me how to do it, and three, you told me what success looks like so I can measure myself against you, and that’s a successful model for scalability. 

Dr. Nicole Rochester:

That is wonderful. You both have nicely taken us into the next part of the conversation, and, Dr. Boehmer, you just talked about shared decision-making, and as someone who works very closely with patient advocates and health advocates, it’s so important that any effort to improve care with regard to any disease or illness, it has to involve the patient and their family, so I really appreciate you all sharing that. So, with that in mind, and as we begin to think about how the patient-provider relationship and the patient-provider communication plays a role in addressing some of these barriers that we’ve been talking about and then making sure that patients are appropriately being tested and treated, I’d love to hear from you all regarding the role of the patient-provider partnership as it relates to biomarker testing. So, let’s see, I’ll start with you, Dr. Boehmer.

Dr. Leigh Boehmer:

So I really, really think this question is critical, and I’m going to bias by saying, an exciting new position on the multidisciplinary cancer care team that we are learning about it, some of our member programs, is that of a precision medicine steward or navigator. So if you’re at all familiar with the idea of a patient navigation service or the services provided by financial advocates or financial navigators, this is really identifying that it is getting so complex in the world of targeted testing, targeted treatments today, that it literally requires in some places and settings an FTE or multiple to try to navigate testing, pathology, external labs, medical oncology, pharmacy services, nursing administration, and then, of course, patients and caregivers, and communication and context building, working with patient advocacy groups who are out there publishing great resources on testing and what they mean and targeted treatments. But trying to put all of that together, I will admit as a community clinician, as you probably see 15, 18, 20 patients a day, sometimes with as many different discrete types of cancers, it gets overwhelming.

And so, having a support person on staff who can help you manage some of that information and the patient-provider conversations, ACCC is very, very much about recognizing multidisciplinary teams of providers, so it’s critical to have navigation, to have social work providing distress screening and psychosocial support, to have pharmacists talking about targeted therapies and how they match with, to Dr. Wakelee’s points, mutations and fusions and rearrangements and everything we’re testing for with our big panels of next-generation sequencing, right? So I really want to encourage us all to utilize as patients and as team members, everybody else on the team, which is also to say patients and caregivers, are team members too, right? They have rights and responsibilities as members of their own team. And I will end with this, I say all of this, and I feel justified in saying all of this because we’ve done research at ACCC, and without that critical infrastructure, there’s potentially a real disconnect. So, for example, we asked patients with lung cancer what resources would be most impactful for you as you embark on your treatment journey, and they said things to us like psychosocial support and financial assistance.

When we asked the provider respondents a similar question in their own survey, the number one thing they identified, they thought patients needed were educational handouts or websites to go seek information about their diagnosis. Now that’s not to shake a finger at anybody or to say that you were right or you were wrong, that’s just to say, we need people who can approach this whole patient-provider construct from different perspectives, because Leigh is going to ask different questions than Heather is going to ask, than Nicole is going to ask, and that’s the beauty of multidisciplinary care coordination. We do need to come at it from different angles, different perspectives, and always make sure we’re remaining open and inclusive and asking what patients need and want right now. Because we don’t always have the answers, we have to remember that. We’re human, we have biases, it’s always better to ask and provide and then ask again.

Dr. Nicole Rochester:

You are really speaking my language, Dr. Boehmer.

[laughter]

Dr. Nicole Rochester:

And I see, Dr. Wakelee, both of us are shaking our heads the entire time that you’ve been speaking and just around this idea of multidisciplinary teams that include the patient and the family, and ideally at the center. Dr. Wakelee, do you have anything to add?

Dr. Heather Wakelee:

Hard to add. That was very impressive, Dr. Boehmer, [laughter] and highlighting that just…we talk about multidisciplinary sometimes, the first version, some people think of it’s just it’s a team of a few different types of doctors. And obviously that’s not at all what we’re talking about, this is to provide the best possible care for a patient dealing with cancer, that physician-to-patient interaction is critical, but the patient to physicians to family is critical. And then you’ve got to also think about all the psycho-social needs and whether that’s going to be with a social worker or… We have a lot of people working in oncology who are psychologists and psychiatrists particularly focused in that because the coping with the disease is such a big part of it. And it’s also the pharmacy teams and the nursing teams. It is…multidisciplinary is many, many different levels of circles, but at the core, it’s the patient and family and the primary physician, that’s kind of the way I think at it, but I’m an oncologist, so perhaps I’m a little biased in my viewpoint there.

But it’s that communication right there where you sort of have all of the information that the physician’s holding, that’s coming from all of the different treatment disciplines, and then you’ve got all the information that the patient’s holding, that’s coming from their understanding of them and all of their other aspects of their life, and that’s sort of that interaction at the core, and making sure that both sides are seeing each other and seeing all of the other layers of that, so that you could make sure that at each point the recommendations and what the patient is actually doing, everyone’s coming from a point of understanding. I think, to me, that’s the most critical piece. And you don’t have that understanding if you don’t also have all the information you need about the tumor, and you’re not making that right decision if you don’t have all the information you need about all the aspects of who that patient is as a person, and that goes into their decisions as well, and that’s to me, that’s what we’re aiming for, right? 

Dr. Nicole Rochester:

Absolutely, you all have done such an incredible job really highlighting the importance of involving the patient and family, involving this multidisciplinary team, which as you said, Dr. Wakelee, it’s not just a bunch of different types of doctors. So before we conclude, I just want to talk a little bit about that communication, because most of you have shared how important that communication is, and we know that there are challenges, inside and outside of cancer with regard to communicating with patients, and certainly as a physician that some of the complexity of the topics that you all have discussed I would admit is even a lot for me, and so we can imagine that for someone without any medical training, this is very difficult, these topics of biomarker testing and genetics and mutations and precision medicine. So I’d love for you, Dr. Wakelee, to start by just sharing some best practices, things you’ve learned over the years with how can providers who are watching this program really engage in effective, thoughtful conversations with patients and their family members about biomarker testing?

Dr. Heather Wakelee:  

So that’s a great, great question. And really, the communication is to me, like I said, the core there, when I’m talking about biomarker testing with the patient, I usually try to frame it from the context of what makes the cancer different than the rest of you. And what we’re trying to figure out is what is it about the cancer that makes it different than the rest of you, so we can then target what’s different, and hopefully with that, being able to control the cancer without harming the rest of you. So that’s sort of one framework of it, and depending on the patient’s level of understanding, and then sort of layer in different levels of…for people who are understanding DNA and mutations, then you can start talking about those specifics, and for folks who don’t necessarily want to think about it that way, or haven’t had the education about it that way, then just starting from that framework. And I think about it this way too, is how is the cancer different than the rest of the person? And what can we do to therefore attack the cancer differently than we would the rest of the person?

And then from there, if there is a mutation or a translocation or something else that we found, can use the name of that gene and say, “This is different in the cancer than in the rest of you, and this is a targeted therapy that’s going to go after that, and it’s going to work for a period of time, but the cancer is always evolving.” And so we kind of plant that seed from the beginning also, that it’s not curing, that the cancer continues to evolve, and eventually it’s going to change in a way where that doesn’t work, but for right now, that’s the best treatment. So that’s how I’m going about with that communication with people on it. And then, again, I practice in Silicon Valley, so a lot of people will come in with books, practically, of all the research that they’ve done, and so that’s a very different conversation than someone who comes in and says, “Whatever you think is best, doc.” And even when I hear that, which I don’t happen to hear too often anymore, I really feel it’s critical that the patient is still understanding, why are we picking this treatment for your particular cancer, and what are our expectations from it?

Dr. Nicole Rochester:

I really appreciate the plain language, and I think that’s important, and also your acknowledgment that patients come to us with different levels of knowledge and expertise, and so really it’s about meeting them where they are, so I really appreciate that. And, Dr. Boehmer, we’re going to allow you to wrap up on this topic, I know that the Association of Community Cancer Centers has done research about what patients want to hear and some of the biases around providers, maybe thinking that patients don’t want or don’t need some of this information, that it may be too confusing for them, so I’d love for you to share some knowledge around your experience in this area and some best practices around communicating with patients.

Dr. Leigh Boehmer:

Thanks very much, I appreciate the opportunity, I’ll try and keep it targeted. I think number one, Dr. Wakelee, you’re correct. We have visual learners, auditory learners, we have people that want more direction and less direction, so simply starting by asking, how do you prefer to learn? It’s a wonderful place to start. It could be drawing pictures, it could be giving them that academic print out of literature published in a cutting-edge journal. But we need to know how patients learn and respect the fact that we’re all individuals and we as providers talking to patients may need to alter our approach based on different patients’ characteristics. I also think our research has shown that consistent terminology must, must be utilized, biomarker testing, molecular profiling, next-generation sequencing, mutation analysis, whatever it is, that you have decided to make your consistent terminology, please in your teams, then in the next level of teams, then in your health system, and then with your colleagues, talk about what it is, why it is, does it go against another group or is it in agreement with A, B, C groups. Because we have to, as a collective, really agree on and start utilizing consistent terminology, because until we do, we’re just continuing to stir the pot and cause confusion amongst patients, caregivers, other patient advocacy organizations and ourselves.

The other thing I’ll say, at ACCC, we’ve got a lot of resources aggregated in one place about shared decision-making, what it is, how to do it, how to assess yourself, health literacy, how do you evaluate your program to make sure you’re asking the right questions before you ever, ever have a conversation with a patient about biomarker testing or different targeted treatments for patients with non-small cell lung cancer? There’s little things that you can do today that’s so important. Little things you can do today that will make a positive influence on your patients’ outcomes and experience just by asking, addressing your own biases, being inclusive with your language and using consistent terminology. All of that is on our website and it’s truly incremental. Go easy on yourself, we’re all learning here, and acknowledging your bias and trying to be more inclusive is very, very worthwhile, and it’s okay if it’s small steps every single day made.

Dr. Nicole Rochester:

A wonderful way to end this program. I have learned a lot as always, I’m sure that those of you watching have as well. We have talked about the challenges around biomarker testing on the clinician side, on the patient and family side, we’ve explored some amazing solutions to some of these challenges and barriers, and I just want to really thank both of you for being here, and lastly, give you an opportunity if there’s something that you really feel like we should have talked about that we didn’t get to. Any closing thoughts or anything that you want to leave the audience with. And I’ll start with you, Dr. Wakelee.

Dr. Heather Wakelee:

Thanks. I think just to make sure everyone is always thinking, if you’ve got a patient and they’re coming to see you and they have lung cancer, that you’ve done the biomarker testing, that the patient understands about it, that you’ve had an opportunity to include that as part of the conversation whenever you’re talking about treatment.

Dr. Nicole Rochester:

Thank you, Dr. Boehmer.

Dr. Leigh Boehmer:  

The only thing I would add is that if you’re thinking about creating resources, if you’re trying to target at-risk populations or communities in your area, please always, always remember to invite those individuals as you are talking, creating and disseminating. Because we don’t have all the answers, and that’s okay. I give you permission, but please invite people in and let them be a part of the discussion and the proposed solutions.

Dr. Nicole Rochester:

Wonderful. Well, thank you again to both of you, Dr. Wakelee, Dr. Boehmer, this has been an amazing conversation. And thank you again for tuning in to this Empowering Providers to Empower Patients program.

Dr. Leigh Boehmer:

Thank you.