Tag Archive for: health disparities

Peer Insights | Recognizing Implicit Bias and Respecting Patients’ Choices

What is implicit bias, and how can patients’ choices be respected? PEN’s Aícha Diallo discusses implicit bias and unconscious bias, how to engage with patients to practice cultural humility, and tips for involving patients and families in shared decision-making. 

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See More from EPEP CLL

Related Resources:

Peer Insights | Appreciating Patient Diversity and Respecting Cultural Differences

Peer Insights | Appreciating Patient Diversity and Respecting Cultural Differences

Peer Insights | Cultural Humility Case Studies and Practical Applications

Peer Insights | Cultural Humility Case Studies and Practical Applications

Peer Insights | The Power of Patient-Centered Care

Peer Insights | The Power of Patient-Centered Care

Transcript:

Dr. Nicole Rochester:

As healthcare providers, we know that it’s incredibly important to recognize and to respect patients’ choices. For many of us, that is a given, but I also think it’s important to be thoughtful as we explore this question. So I have the privilege today of connecting with the Patient Empowerment Network’s Vice President of Programs, Aïcha Diallo, a leading voice on this topic. It’s such a pleasure to connect with you today, Aïcha.

Aïcha Diallo:

Thank you so much for having me.

Dr. Nicole Rochester:

So, Aïcha, can you define what is bias? And can you also discuss the different types of bias?

Aïcha Diallo:

Absolutely. Implicit bias is also known as unconscious bias. It is a cognitive process that is intentionally activated when a person automatically classifies another person as a member of a group and applies stereotypical characteristics of the group. This could be positive or negative, but the issue with implicit bias is that it could be common and persistent, and it can be activated very quickly and unknowingly by situational cues.

That could be the color of someone’s skin or an accent that they’re hearing, and it can also impact a person’s perception of a situation and a memory, and even their behavior without that person’s intent and awareness. So the different types of biases that you will find in the healthcare system are race and ethnicity bias, age bias, sexual identity, gender, education, even appearance and ableism. Social-economic status and geographic location are also huge biases that tend to be seen.

The impact that bias does have on healthcare delivery is that it can lead to lower quality care among patients, specifically from underrepresented communities, and it can also result in, unfortunately, incorrect diagnosis, mistakes, delays in treatment, and even further mistrust and distrust from the patient community. So it’s really important for healthcare professionals to be aware of any implicit bias that they may have and really work hard to remove them. And they also have to pay very close attention to any blind spots that can be often present, that can obstruct their views. And the other thing I would also add is that they need to really have the willingness to suspend the “what they know” about a person based on generalizations about their culture and really be open to what their experience as their personal culture.

Dr. Nicole Rochester:

Thank you, Aïcha. And so, you mentioned the types of biases, and you mentioned the impact that they have on healthcare delivery and the type of care that our patients receive. You also said that it’s unconscious. And so I would love for you to share how can providers actually recognize this implicit bias? Are there some practical ways that they can actually recognize their biases?

Aïcha Diallo:

Absolutely. I think it’s very important to reflect on one’s own identity. It’s important to keep in mind that your patient should be treated equitably, with respect, with dignity, empathy, regardless of what they look like, who they are, what language they speak or where they live. I would also and continue to encourage to practice cultural humility, which is really taking a step back, listening to your patients, being present, allowing them to share what their thoughts, questions, concerns are, and to really avoid making any assumptions. And I would also add that it’s important to participate in courses to educate yourself on health disparities and cultural identities. Also check in with your colleagues and make sure that you are on the same page with the way that you are interacting with patients.

Dr. Nicole Rochester:

And finally, can you explain the importance of respecting patients’ choices even when they differ from our own and how this extends to including our care partners in the process?

Aïcha Diallo:

I think it’s very important to understand as a healthcare professional that you are the expert at what you do, but your patients and their families are experts at who they are, what they feel, what they want and need. So making sure to always engage in shared decision-making and including them in the process as well as their care partners in all the conversations and remembering that their care partners are an essential part of their loved one’s care and often make the decisions with or even for them.

So listening to both your patients and their care partner or whoever is in the room with them, that also extends to any additional loved ones that they bring with them. Ask them about their goals and their concerns. Make sure that you make eye contact with them. It makes them feel included as well in the process and direct your questions to both parties. I think applying these strategies are very important in this process.

Dr. Nicole Rochester:

That was wonderful. Thank you so much, Aicha. So if I could summarize what you’ve said, you’ve told us about bias and that implicit bias is unconscious, and so we’re typically not aware of it. You’ve shared some strategies for us to mitigate our biases, and you’ve talked about the importance of including our patients and their family members and support people in the decision-making. So thank you so much for sharing your expertise with us today.

Aïcha Diallo:

Absolutely.


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Peer Insights | Appreciating Patient Diversity and Respecting Cultural Differences

How can diversity be appreciated by healthcare providers? PEN’s Aicha Diallo discusses diversity, how to recognize cultural values and unique backgrounds, and the benefits of appreciating diversity.

Download the Appreciating Diversity Infographic

See More from EPEP CLL

Related Resources:

Peer Insights | Cultural Humility Case Studies and Practical Applications

Peer Insights | Cultural Humility Case Studies and Practical Applications

Peer Insights | Recognizing Implicit Bias and Respecting Patients’ Choices

Peer Insights | Recognizing Implicit Bias and Respecting Patients’ Choices

Peer Insights | The Power of Patient-Centered Care

Peer Insights | The Power of Patient-Centered Care

Transcript:

Dr. Nicole Rochester:

Appreciating diversity means many things to many people. As healthcare providers, it’s important to navigate complex cultural landscapes and also learn how to foster genuine connections across differences. Well, Patient Empowerment Network’s Vice President of Programs, Aicha Diallo, is joining me to look at the power of valuing diversity in our patients and their families. Aicha, how can we as healthcare providers appreciate the unique differences among our patients, and how does this enrich healthcare?

Aïcha Diallo:

The ways to appreciate the uniqueness of your patients can include a lot of different strategies, but I would really focus on putting the patient at the center of everything you do. It’s important to also recognize and celebrate their cultural values and the uniqueness of their backgrounds. Do practice cultural humility, which means listen more, make less assumptions, focus on what your patients and their families are sharing with you, ask them questions that will allow you to get a better understanding of who they are and what their needs are. Also show respect and see your patients as people. And this is shown to really help in terms of improving healthcare outcomes for everyone, especially patients who are in underrepresented communities. And this very much helps in terms of further decreasing health disparities.

Dr. Nicole Rochester:

Well, thank you so much, Aicha Diallo, Vice President of Programs at Patient Empowerment Network. We appreciate your wisdom. 


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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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What Are Common Colon Cancer Health Disparities?

What Are Common Colon Cancer Health Disparities? from Patient Empowerment Network on Vimeo.

What are common colon cancer health disparities? Dr. Suneel Kamath explains what a health disparity is, the groups impacted by these differences, and how the medical community addresses them in colon cancer care.

Dr. Suneel Kamath is a medical oncologist at the Cleveland Clinic Cancer Institute. Learn more about Dr. Kamath.

Download Resource Guide

See More from DETECT Colon Cancer

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What Is the Role of Genetic Testing in Colon Cancer Care?

What Is the Role of Genetic Testing in Colon Cancer Care?

What Can Patients Do to Access Better Colon Cancer Care?

What Can Patients Do to Access Better Colon Cancer Care?

What Are Colon Cancer Screening Guidelines?

What Are Colon Cancer Screening Guidelines?


Transcript: 

Katherine:  

Disparities in healthcare can impact a patient’s experiences and outcomes. What are some common health disparities?

Dr. Kamath:  

Yeah, there are so many. I think with colorectal cancer in particular, access is really a huge one. People who are in underserved communities, often people of color, have less access due to systemic racism in healthcare and in insurance, lack of opportunity with employment. I’ve always thought having a purely employer-based healthcare system is not the smartest idea.  

People who are often the sickest are the least able to work and the least able to maintain their health insurance. It does a disservice to our population to have thing set up that way. Yeah, I think that’s a huge barrier. I think there’s also a lot of stigma, especially amongst people of color, around colonoscopies, things to do with your colon and rectum and whatnot. I think that’s something we also need to work on, to normalize that as something that should be done regularly and that this isn’t a bad thing. It’s just something we all have to do. 

Katherine:  

Right. Well, what is being done by the medical community to address these imbalances? 

Dr. Kamath: 

I’ve really seen, I think, a legitimate push towards community outreach in the last few years. Unfortunately, we’ve known about these disparities for decades and I think a lot has been said about addressing them since the ‘80s and ‘90s.  

But to be honest with you, I don’t think very much was really done until recently. What I’ve seen is a really concerned effort to put resources into identifying what are those barriers. Where is the distrust coming from? Who are trusted sources in your community? We’re tapping into pastors and preachers and the barbershop guy. You don’t ask people, “Who do you trust to get your information from?” If you don’t ask the question you’re never going to know. 

Recently, I think we’ve actually really done the work to find out what is going to motivate you to get something done? What’s going to make it feel normal to you and having trust healthcare? We’re seeing a lot more engagement, I think, as a result of that.  

Katherine:  

Are members of the medical community going out into the African American community to find out who they should be talking to?  

Dr. Kamath:  

We have been, actually. I reviewed a grant – just to speak of Cleveland Clinic in particular, a couple of years ago that the project that is being funded by it is still ongoing. Basically, we conducted focus groups of people at church. After the service was done, we conducted a focus group to ask them, “What are your thoughts about screening?” It was for colon cancer and for others as well. “What are your thoughts about this? What are your fears about it? What are things we could do to make you feel more comfortable with accessing this part of your care? Who do you go to to get trusted information?”  

As a result of that, doing it in their community, in the church setting where they feel safe and comfortable, we saw significant spike in the number of people who came for colonoscopies, for mammograms. We do PSA testing there and we set up a lab there. We found a big spike in the number of people who got those things done and we identified quite a few people who had cancer at early stages and we were able to cure them at much earlier stages than otherwise.  

HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers

HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers from Patient Empowerment Network on Vimeo.

Explore the complex challenges and barriers in myelofibrosis care with Dr. Raajit K. Rampal from Memorial Sloan Kettering Cancer Center and Dr. Jeanne M. Palmer from the Mayo Clinic. Gain insights into therapeutic inertia, effective strategies for overcoming care barriers, and enhancing patient-centric care to improve myelofibrosis outcomes.

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Are There Non-Pharmacologic Strategies for Managing Myeloproliferative Neoplasms

Are There Non-Pharmacologic Strategies for Managing Myeloproliferative Neoplasms?

Explaining Myeloproliferative Neoplasm Disease Progression to Patients

Explaining Myeloproliferative Neoplasm Disease Progression to Patients


Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients 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 healthcare provider roundtable, we are discussing breaking through myelofibrosis practice barriers.

We’re going to talk about the nuanced challenges and practice barriers in myelofibrosis care. How do patient socioeconomic factors impact treatment access? We will look at gaps in the field and overcoming practice barriers such as lack of awareness, outdated practices, and therapeutic inertia, while also addressing solutions to enhance patient-centric care in myelofibrosis for improved patient outcomes. 

It is my privilege to be joined by Dr. Raajit K. Rampal of Memorial Sloan Kettering Cancer Center. Dr. Rampal is a clinical translational investigator whose research focuses on the genetic events that contribute to the development and progression of leukemia and myeloproliferative neoplasms. Thank you so much for joining this EPEP program, Dr. Rampal. 

Dr. Raajit K. Rampal:

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

Dr. Nicole Rochester:

It’s also an honor to be joined by Dr. Jeanne Palmer, hematologist at Mayo Clinic. Dr. Palmer’s interest is in identifying novel targeted therapies for patients with myeloproliferative neoplasms. She strives to offer innovative therapies to patients in all stages of their disease through clinical trials. Thank you so much for joining us, Dr. Palmer.

Dr. Jeanne M. Palmer:

Thanks for having me.

Dr. Nicole Rochester:

So we’re going to start today’s discussion 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 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.

Dr. Nicole Rochester:

Thank you so much, Dr. Rampal. Well, we’ve been talking about the barriers that patients face. 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:

Absolutely. Wonderful. Well, you talked about something maybe being outdated. That’s a perfect segue to our next conversation. And so I’ll start with you this time, 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.

Dr. Nicole Rochester:

Thank you. So as we move on to our final topic, we’re going to start talking about collaborative care. You all have spoken about this being a rare disease, the need for expert care, the fact that not everyone has access to that expert care. And so the reality is that it’s going to take more than just experts like yourself in order to manage these patients. And so, Dr. Palmer, I’m going to start with you. What are the key components of an effective collaborative care ecosystem for myelofibrosis? And how can healthcare providers integrate these components to ensure comprehensive patient care?

Dr. Jeanne M. Palmer:

Well, I think one of the most important things is really making sure you’re having conversations with the patients, are able to sort of elucidate what’s really important to them and how they’re feeling. I think many patients actually are very aware of things that they want to or don’t want to do. And so, and then in a disease like this one, where there are lots of different options, there are also just nuances in the way you sort of treat things like, okay, do you want to take this side effect or that side effect? Or how do you want to approach this? Being able to have those conversations to really get their input on it is very important.

That’s one of the reasons I really enjoy treating this disease is because it’s not so regimented in how you do it. It becomes really a conversation, understanding how the patient’s feeling, understanding the side effects that they’re having, so you can better determine how you should continue with the therapy.

Dr. Nicole Rochester:

Wonderful. I appreciate that. And I appreciate that you brought in the patient perspective when we’re speaking about collaborative care, because, of course, they need to be involved in their part of their medical team. Dr. Rampal, what about the healthcare providers? How can you cultivate a collaborative ecosystem with other healthcare providers as you all provide care for myelofibrosis?

Dr. Raajit K. Rampal:

Part of my advice here is simple, which is to pick up the phone. And I’ll tell you why I put it that way. I think that what happens…and this is something I always emphasize to our trainees, because I don’t think this is something that’s taught. This is, as they call it, a soft skill. But there is, I think, a tendency, at least in academic centers, for people to want to ensconce themselves in the ivory tower. And that doesn’t help, because you have to communicate with the people taking care of the patients.

And the simplest way to do that is to pick up the phone and call the referring doctor who they’re seeing in the community, and say, “Listen, I saw your patient. Here’s what I think. I’d like to share the care with the patient. I can see them every six months. Please keep me updated. This is my cell phone number. Call me if there’s a problem.” That, to me, has been the most simple, effective tool to build collaborative partnerships with physicians in the community. And it’s not something that I think is taught, but we have to do that. We have to break down these barriers between specialty care or academic care and community care. I think that’s one of the best things we can do to help patients get the care they need.

Dr. Nicole Rochester:

And what a simple tool, just picking up the phone. We often try to create complex technological solutions. And you’re right. It’s just as simple as picking up the phone and having that one-on-one conversation. So thank you for adding that. Dr. Palmer, how can multidisciplinary teams be best utilized to improve outcomes in myelofibrosis care?

Dr. Jeanne M. Palmer:

So it always takes a village to treat a patient. I think that making sure that you have…that your social workers or case managers have good access to different resources to help with patients. As I said, one of the biggest challenges is paying for these drugs. So having a good team of social workers or case managers who are really able to tap into resources, so patients can get access to these drugs is really important. Making sure that you have good nursing support.

One of the things that’s really important is I can ask my nurse, “Hey, look, can you check in on this person in the next few weeks to see how they’re doing with their new medication?” And even having good APPs. I’m very fortunate to have a couple of APPs I work with who are very knowledgeable about MPN. So I don’t worry that if I’m not there to see the patient that somebody else who’s seeing the patient won’t be able to assess them in a good way. So I think having that whole cadre of people around you to support the care of that patient is critical.

Dr. Nicole Rochester:

Absolutely. And I appreciate that you lifted up not just the medical providers, but the case managers as well, particularly with some of the challenges that we’ve been talking about today. And, Dr. Rampal, do you have any specific solutions for how to achieve seamless coordination among the different specialists that may be involved in the patient’s care?

Dr. Raajit K. Rampal:

No. I think it’s a difficult problem. I’m not sure there’s a clear solution. Even the simple thing of medical record systems not talking to each other; people use different medical record systems, those things all create barriers. I think that…the only thing that I think is worthwhile is making sure that you’re actively managing this communication.

In other words, when you write a note in your electronic medical system, you’re assuming that it’s getting sent and being read by the referring physician and all of that, but that’s a passive way of thinking about this. And one has to be active. One has to make sure that if there are key things to be communicated amongst all of the people taking care of a patient, as I said earlier, a simple thing is pick up the phone or make sure you have communication about your ideas and plans for the patient so that the other people, providers involved in that patient’s care are all aware of that.

Dr. Nicole Rochester:

Thank you so much. Yeah, the electronic medical record does not sometimes live up to those expectations, which takes us back to what you said earlier, picking up the phone. It’s time to wrap up our roundtable. And I must say I have enjoyed this conversation so much. And as we bring this program to a close, I’d love to get closing thoughts from each of you.

And so I’ll start with you, Dr. Palmer. What is the most important takeaway message that you want to leave other healthcare professionals who may be listening and watching this program around how we begin to eliminate barriers in myelofibrosis care?

Dr. Jeanne M. Palmer:

Well, I think one of the key factors here is to make sure that you understand what you know and then understand what you don’t know. And there are lots of us out there who are very willing to help and support in any way we can. I think this is a really challenging disease to treat. Speaking as someone who started to treat it mid-career, it was something that I realized that it’s not just about reading papers, there are a lot of nuances to it. So really not having the fear of asking.

Also, to really tap into patient advocacy organizations. There are a number of really good organizations that provide excellent education opportunities for patients and making sure that patients are aware of those so that they can be able to do their own Google search, but not necessarily in a non-constructive fashion. So really tapping into those patient advocacy groups is really important.

Dr. Nicole Rochester:

Wonderful. And what about you, Dr. Rampal? What’s a closing takeaway message for our audience?

Dr. Raajit K. Rampal:

I think open lines of communication. I think that from the perspective of providers in the community, we want to know that you have questions. We want to make ourselves available to answer those questions. And so I would much rather be inundated with questions specific to a patient’s care than not to hear from somebody.

And then I think from the specialist side of things, we have to make ourselves available to address these questions and make ourselves accessible. So I think in as much as possible, opening up lines of communication is one of the keys to overcoming some of these barriers. Obviously, there are systemic barriers here that require systemic solutions, but on a granular level I think those are the things we can do.

Dr. Nicole Rochester:

Well, I want to thank you both. Thank you, Dr. Palmer. Thank you, Dr. Rampal. As always, this has been a very informative conversation. We talked about many of the barriers to myelofibrosis care. We talked about some of the systemic and structural barriers, but we’ve also talked about barriers that healthcare providers can overcome.

And ultimately, the take-home message for me is communication. Communication with our patients in a way that they can understand, in a way that they like to receive information, having respect for cultural differences, and communication and collaboration with each other. So again, thank you both for all of the information that you shared. And thank you all for tuning in to this Empowering Providers to Empower Patients Patient Empowerment Network Program. I’m Dr. Nicole Rochester. Thank you for watching.


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Are There Disparities in Stem Cell Transplant Outcomes?

Are There Disparities in Stem Cell Transplant Outcomes? from Patient Empowerment Network on Vimeo.

What do myeloproliferative neoplasm (MPN) patients need to know about disparities in stem cell transplant outcomes? Expert Dr. Idoroenyi Amanam from City of Hope explains key factors that impact the outcomes of stem cell transplants and the importance of finding fully matched donors.

Descargar Guía|Download Guide 

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Transcript:

Lisa Hatfield:

Dr. Amanam, does race or ethnicity play a role in outcomes of stem cell transplantation?

Dr. Indoroenyi Amanam:

Yes. There have been some really great studies looking at this. And I think in general, we know that health disparities are a major issue for racial, ethnic, and socioeconomic disadvantaged groups. Stem cell transplant is a curative therapy for blood disorders. And we’ve looked at a variety of different, there have been multiple approaches to assess like where these disparities come from or if there are disparities from specific groups. And I think the Affordable Care Act was great in allowing expansion and insurance coverage to multiple groups and increased access to care. But that hasn’t solved the problem.

And so, one of the issues we’ve seen is that providers themselves do not refer patients proportionately. So from proportion if you’re African American, Hispanic, if you are coming from a ZIP code that your meaning income is lower, that there are some instances where referrals for transplant don’t occur in equal rates.

And we’ve also seen that even if you’re insured and you’re African American or Hispanic, referral rates are still lower. And so that’s something that, it’s something that we have to work to improve. And you know, one big thing for transplant is that you have to have donors. You have to have donors who are matches for these patients who have these disorders who need a transplant. And we do know that African Americans, Hispanics, and Asians have lower chances of finding a fully matched donor compared to white Americans. And so, why that’s really important is that when you look at rates of complications after transplant, we do know that the level of match of the donor does play a part in that. Namely the chances of the patient relapsing after the bone marrow transplant and the rates of graft-versus-host disease are significantly higher.


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Health Equity: Accessing Quality MPN Care and Clinical Trials

Health Equity: Accessing Quality MPN Care and Clinical Trials from Patient Empowerment Network on Vimeo.

How can health equity be addressed in MPN care? Dr. Angela Fleischman discusses the importance of clinical trial diversity and ways to help provide equitable MPN care for all patients.

Dr. Angela Fleischman is a physician scientist and assistant professor in the Department of Medicine at the University of California, Irvine. Learn more about Dr. Fleischman.

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Transcript:

Katherine:

Based on American history, some people believe that they won’t receive equitable or safe care if they participate in a trial.  

How can you reassure those people who are concerned they’ll be treated fairly? 

Dr. Fleischman:

Now, I think that this is a very important point, and something that there’s been a lot of emphasis, to try to improve diversity in clinical trials, because our American population is quite diverse. However, the participants that, in general, participate in clinical trials are, unfortunately, still have not a very diverse population in our clinical trials. 

I think what we need to first start doing is education, to reach out to underrepresented communities, to start to build the trust amongst these communities, to tell them about the value of clinical trials. And I think it’s going to take some time to build trust first, because it does take quite a bit of trust to participate in the clinical trial. 

But I don’t have a great answer for that, other than, we need to work hard to, first, build trust, and then, I think the diversity will come. 

Katherine:

Mm-hmm. How does holding on to some of these beliefs lead to limitations in care and create disparities? 

Dr. Fleischman:

So, and rightfully so, if a patient is scared, or has some reservations of participating in a clinical trial, they may – that’s offered to them, that they provide them with, potentially, something better than standard of care. They may be missing out on a potential opportunity. 

Also, potentially, if a patient, if they’re asked about a clinical trial and they have a negative connotation about them, they may lose trust with their physician, if they say, oh, my physician is asking me to participate in a clinical trial.  

I think it all boils down to trust, and as physicians, we need to demonstrate that we are worthy of the patient’s trust, and we really are ingrained in us to treat every patient the same. I mean, that’s what our oath is. That’s what we’re supposed to do, and I think that the vast majority of patients, they have, ethically, are treating patients exactly the same, regardless of their circumstances.  

Katherine:

Health equity means that no matter what a patient’s circumstances, whether it be race, income issues, lack of education, that they should have access to the best care. What is being done by the medical community to address this issue?  

Dr. Fleischman:

So, yes, this is a significant issue, and in particular, with myeloproliferative neoplasms, in whom there are lots of oral drugs – or with interferons, it’s injectable, but you get the prescription, and you give it to yourself – that there can be quite high copays, in some cases, exorbitant amounts, which, really, are not able to be paid for by the vast majority of people. 

So, many companies do have copay assistance programs. Also, foundations have copay assistance programs. So, I think that is, at least, one step in trying to make things more equitable, to get people who need a drug, their drug, at a very reasonable cost. Again, it does take some time, some legwork on the part of the patient, to seek out these programs, or to find an advocate for themselves to seek out these programs for them.  

How Can Lung Cancer Patients Ensure Quality Care No Matter Location?

How Can Lung Cancer Patients Ensure Quality Care No Matter Location? from Patient Empowerment Network on Vimeo.

Now that lung cancer patients have access to in-person and telemedicine visits, how can they ensure quality care no matter location? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanyashare their advice on maximum travel times to in-person providers, when telemedicine visits make sense, and how to ensure you get the best fit for you as a patient. 

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Transcript:

Dr. Nicole Rochester: 

You mentioned telehealth, and we know that one of the barriers to receiving care, and you’ve indicated that in terms of having access to a multi-disciplinary team, having access to thoracic surgeons as opposed to general surgeons. So, we know that that is impacted by where we live, and that often our geographic location can actually be a barrier to the receipt of quality care, so I’d love for you to just talk a little bit about how patients who may be in more remote locations can make sure that they are also receiving appropriate care for their lung cancer. 

Dr. Olugbenga Okusanya: 

Yeah, I think this is a very substantive challenge, I think this is one of the holes in healthcare, there are these regions in the country where you just are not going to have access to any number of surgical sub-specialists or radiation oncologists, or lung cancer specific oncologists. I think that is a really big challenge. I think we have actually learned through the pandemic that the physical barriers really are not the reason to not get the best care, so I think those patients should be exquisitely interested in telehealth and in phone calls, and I think most healthcare systems now, because the reimbursements have been approved for telehealth and actually now built infrastructure to support it as an ongoing concept. So now, if you are a patient that’s in Arizona and you want to talk to a doctor who’s in New Jersey, you can do that, you can make that happen. If you find someone, you Google them, you find a friend in that area who knows someone, you can call their office and say, “I want to have a telehealth visit.” And as long as you have broadband Internet and a phone, you can do it. You can have that conversation. 

So, I would advocate for people to really make sure that you at least feel like people in the sort of local regional area that you can perhaps get to maybe two, three hours away. But you can imagine a scenario where you can get there, you can try and establish some level of care and some level of rapport with them. I think that’s something that has really opened, has been one of the few good things to come out of the pandemic. 

Dr. Nicole Rochester: 

I was going to say the exact same thing. That is one…there haven’t been a lot of positive things, but that certainly is one of the positive outcomes of the pandemic, is this surge, and it’s not that we already had the capability, but it certainly was not being used to its maximum capacity. I appreciate that. So, speaking of telemedicine and COVID, I think one of the challenges that patients and often care partners have is understanding when is a telemedicine or telehealth visit appropriate versus when do you actually need to go see that doctor in-person, so…can you help clarify that? 

Dr. Olugbenga Okusanya: 

Yeah, so I think in general, even if you start with the telehealth is, I think there’s very little downside to telehealth for almost anyone in general, because a lot of the information can be garnered from the patient record, from their scans. I think in general; it gives you 85 percent of what you need out of that interaction, and it may be more convenient for the patient, a lot of times it’s actually more convenient for the doctors, doctors have now found ways to work from home. They do have to have their clinic from home, it’s a much more relaxed environment than more efficient. I think there are times like for instance, I have to make decisions about offering surgery to patients who I consider to be moderate or high risk, I think there is a benefit and having that patient come and see me in the office because they have to somehow pass what we call the eyeball test, and that is a little bit of where this disparity comes in in lung cancer surgery, because it depends on whose eyeball is looking at you, making your determination about what they think is going to happen with you in surgery. 

I remember…actually one of my favorite patients ever. She had data that did not look like she would tolerate surgery, everything about her data did not look favorable. And I saw her, I remember seeing her in-person, and you could see the spark in her eye and energy that she had, and I said, “You know what, we’re going to do it.” And she did great, she did phenomenally well. And that is a case where if you’re in the population of patients that may be slightly more moderate, slightly more high-risk, and you need someone to really look you in the eye and you say, “I’m going to do what it takes to get through this.” I think that’s the patient where the in-touch, in-person visit really is that extra touch that can be benefited. 

Dr. Nicole Rochester: 

Wow, I love what you said about the spark in her eye and also how you connected that to health disparities, and I don’t know the race or ethnicity of the patient that you’re describing, but we certainly know that that makes a difference, and I just wonder if that had been a different physician, would they have seen that same spark? And I think it just goes back to what we were talking about earlier, and the importance of finding a physician or health care provider with whom you connect, someone that actually respects you, someone that listens to you and sees you as a whole person. So, the fact that you were willing to go beyond that data on her chart, which screamed, This is a poor surgical candidate, met her in-person, and something about her let you know that she was going to be okay. 

Dr. Olugbenga Okusanya: 

And that’s why in medicine and surgery are still art at the end of the day, it’s still an art. You make decisions, best informed decisions, but there’s a lot of it that is still really special and mystical in a way. And I think having that in-person interactions will let you practice that and it’s exactly what you said, you want to have a really nice relationship with the physician, especially anyone that’s going to be doing anything that might be invasive or dangerous because for the most part, you meet someone for 45 minutes and then you sign up for what could be a life-threatening event. So, you, the physician and the patient should feel really good about that interaction and whatever that energy is, it’s really important, it’s a little bit kind of sacred, I think, and I think it’s really valuable to invest in that if you don’t like the surgeon, you really don’t feel like it’s a good fit or you don’t like your oncologist, find someone else. You’ll do better in the long run, for sure. 

Dr. Nicole Rochester: 

That is so incredibly important. I agree, 100 percent. So much of healing is beyond just the nuts and bolts of the medical care that we provide, or in your case, the surgical care, there’s so much more to that, that’s not really well studied, but that relationship and that connection is key. 

Dr. Olugbenga Okusanya: 

Critical, and that’s not to say that necessarily the person has to be like the warmest, friendliest, the most fun person you ever met, some people prefer a more yes ma’am, no ma’am, clear-cut, well-defined boundaries of a relationship. Some people prefer a big hug and a laugh and a joke. So if you’re getting what you need, that’s exactly what you need. And if you’re not getting what you need, you should think about your other options 

How Can I Get the Best Lung Cancer Care No Matter Where I Live?

How Can I Get the Best Lung Cancer Care No Matter Where I Live? from Patient Empowerment Network on Vimeo.

How can those living with lung cancer ensure they get quality care even if they live in rural areas? How can lung cancer patients gain confidence in voicing treatment concerns and in communicating with their healthcare team? Watch as Dr. Olugbenga Okusanya shares key points about such vital topics for the lung cancer community.

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Transcript:

Dr. Nicole Rochester: 

Hello and welcome. I’m Dr. Nicole Rochester, your host for today’s Patient Empowerment Network program. Today we’re going to be talking about how long cancer patients can truly get the best care no matter where you and your family live. We’re going to talk about things like how can I remove roadblocks in my care to gain access to state-of-the-art treatment? Will my insurance limit me if I want to get a second opinion? As a care partner, how do I best advocate for my partner, and is a clinical trial right for me? The answers to some of these questions we’ve received revolve around awareness, feeling empowered to ask questions, and connecting to the right resources at the right time. In this program we’ll be learning just that as we meet our guest expert. It is my honor and privilege to be joined by Dr. Olugbenga Okusanya, he is an assistant professor of Thoracic Surgery at Thomas Jefferson University Hospital. Thank you so much for joining us, Dr. Okusanya. 

Dr. Olugbenga Okusanya: 

Absolutely. It’s a pleasure to be here, thank you for having me. 

Dr. Nicole Rochester: 

Now we’re gonna start with talking about some of the barriers to lung cancer care. We know that there are many factors that can negatively impact outcomes for patients and families facing a lung cancer diagnosis, including things like social stigma for smoking, geographic location, socioeconomic status, insurance and access to care, financial hardships, and access to transportation. So, my first question to you, Dr. Okusanya is, what are some of the barriers that both lung cancer patients and their care partners face when they are seeking care? 

Dr. Olugbenga Okusanya: 

First of all, thank you very much for putting a spotlight on lung cancer care, we really need more people to help us treat this really terrible disease. 

There are a number of barriers for our patients in order to get the best care possible. Number one, we actually find at diagnosis, we find that a lot of patients have lung nodules that have been seen because maybe they got a chest x-ray or a CAT scan for some other reason, and maybe they don’t get followed up on because they don’t have a steady source of healthcare, they don’t have a PCP or someone who regularly follows up on their health information. We have trouble also sometimes getting patients in the appropriate diagnostic studies that they need, oftentimes, we find patients that may show up in the hospital that have a significant problem and they may need a special kind of CAT scan or a biopsy, and they simply do not have the resources to get to said CAT scan or get to said biopsy, which is critical in making the appropriate diagnosis so we can get them to the right therapy. One of the biggest things that you mentioned is finding a specialist in terms of all aspects of lung cancer care, whether it is surgery, medical oncology, or radiation oncology, there are medical practitioners that mostly specialize in lung cancer care, and because of that, they’re gonna have access to different resources, they’re gonna think differently about the disease process and they’re gonna approach each patient differently because of the disease process So finding someone who really thinks and works in the lung cancer space all the time, I think it’s a barrier to patients getting really good care. 

We also find that one, cancer care has a lot of hurdles, apart from proper CAT scans, biopsies, work-ups, actual interventions, there are a lot of steps that patients have to go, to get from even just getting a diagnosis to getting treatment and having patients move through that period of time, which is we hope usually four to six weeks in a sort of step-by-step manner can be extremely eliminating. So we really are trying to condense those things so patients can meet all the specialists, they need to get all the tests that they need to get in maybe one or two concise visits and then get into care, and lastly, as you mentioned, not having access to what we call multidisciplinary conferences is a limitation because there are more and more nuanced ways that lung cancer is presenting and being treated, that needs to be discussed between a surgeon and radiation oncologists and the medical oncologists, preferably all in the same setting, all at the same time. So having access to those clinics where we can have a really high-level discussion about the best thing to do for a patient, I feel is a significant barrier, especially for our patients with advanced disease. 

Dr. Nicole Rochester: 

Thank you so much. Wow, you have given us so much to think about and I appreciate your thorough answer. One of the things that I’m struck with as you talk about all of these steps and the fact that ideally, they need to be undergone within a certain time period, of course, it’s time-sensitive. And you mentioned navigating, and certainly, that’s something that I deal with on a regular basis, just the challenges of navigating through each one of those steps can be extremely difficult, you’ve gone through a lot of the barriers that patients and their family caregivers may face. Let’s talk about some of the solutions. Are there a few solutions that you can suggest for overcoming some of these barriers that you just described? 

 
Dr. Olugbenga Okusanya: 

Yeah, I think from the patient’s perspective, there are a number of things you can do to really help yourself. Number one is a good healthy dose of research, that means getting online, Googling, finding lung cancer experts, preferably in your region, finding out what their interests are, what are the things that they typically research and take care of, and then finding a way to get in contact with them. I think that is really step number one, it’s finding someone who specializes in the disease, and then to find someone that you actually get along, someone who you have a relationship with, a truly therapeutic relationship and invest in that person, and if they’re the right person for you, whether it be personality fit, whether it be background, you will find a relationship with them that will actually help you get through that process. I would also say many programs actually have nurse navigators who are people that help you navigate this process, that is quite literally why they are part of the health system, so if you can find programs and have nurse navigators, they can really be instrumental in setting up appointments that are either overlapped right after one another, all in the same place, things that really help smooth the edges of getting all the work I’ve done at on time. 

And again, I would also recommend the patients, I would try to stack your appointments or stack your visits so that they are not quite so spread out over space and time, because a visit, usually it takes a few days to get a result, which then takes a few days to get a course of action, which then can sometimes provoke another test. 

So, the more times than things are stacked together and information just a get to get in big packets, I think really the better for moving through the process. 

Dr. Nicole Rochester:

I appreciate that. I think what I’m hearing in your answers is really the importance of patients putting themselves in the driver’s seat, which is another thing that I strongly advocate for. I think many patients and family members don’t see that as their role, and they don’t understand and appreciate the value of doing these things that you just talked about, doing your own research and finding providers with whom you connect it’s so incredibly important, especially when it comes to cancer and other serious diseases. So, I want to switch gears a little bit and talk about racial and health disparities, ethnic and health disparities, specifically in lung cancer care. I know that you have done some research in this area, and certainly being a person of color, this is something that I would imagine you relate to, so we know that the CDC and many other healthcare organizations have now declared racism a public health crisis, and certainly in 2021, we continue to see worse outcomes for cancer and many other chronic illnesses in people of color, so I’m curious, what do you think are the notable health disparities that are consistently seen in treating BIPOC patients living with lung cancer? 

Dr. Olugbenga Okusanya: 

Yeah, unfortunately, this is an area of interest of mine. And it turns out that the disparities are literally every single stage. There’s not an aspect of lung cancer care, which there is not a significant disparity that hinders the ability of minority patients to get better care, period at all stages. So overall survival for lung cancer for black patient is worse than white patients, even though black patients get diagnosed on average two to three years younger than their white counterparts. Black patients are less likely to get surgical therapy for early-stage disease, which is the actual care for an early-stage disease dates than black patients, than white patients, that gap has been narrowing over the last 20 years, but it is by no means closed. Black patients are unfortunately less likely to get an appropriate work-up to get the indicated tests. They are also less likely to get the chemotherapy when it is indicated, and they are less likely to be enrolled in clinical trials. So, literally at every step there is a significant inequity that affects black patients, and I think it’s really disheartening to see in a field where lung cancer is the most common killer and cancer, and frankly, there are lots and lots of patients who have options, who have good options that never get investigated and never get delivered. 

Dr. Nicole Rochester: 

That is extremely heartbreaking, and it’s sad to hear that we see the same disparities in lung cancer that we see with every other chronic condition, with every other cancer, certainly what we’ve seen recently with COVID-19 as well, and it really underscores what you said previously, which is the importance of being an advocate for yourself and doing your research and making sure that you really are getting the best care, which could be difficult when you’re struggling with your cancer diagnosis. Sometimes I get angry, I feel like we’re putting so much responsibility and so much burden on the patient. With that said, what are some things that patients of color can do in order to protect themselves from these inequities that you’ve talked about, starting with diagnosis and treatment, what can we do? What can patients of color do? 

Dr. Olugbenga Okusanya: 

So, I think the number one thing is to ask questions, the number one thing is to say, what are my options? What am I dealing with? What should I do or what shouldn’t I do? And to really make sure you get the most at that time when you see a physician, because that is really what we’re there for apart from the surgery, I’m really there to be an educator. I teach as much as I operate on a daily basis whether it be the medical training is whether in my patients, my job is to communicate information back and forth, so you really want to spend the time asking questions and getting as much information out, as much as you can. Number two is, see a specialist. There’s also very good data to indicate that as a black patient, if you see a board-certified thoracic surgeon, you are more likely to get lung cancer surgery than if you were to see a surgeon of unknown specialization, a general surgeon. So clearly the training gives specialist the ability to make finer determinations and discernments that I think in large part favor black and minority patients, so you wanna find someone who deals with these disease processes all the time because they’re gonna look at it in a much higher level and look at it with a lot more granularity. 

Dr. Nicole Rochester: 

Just have to repeat what you said, you said, I teach as much as I operate. That just really resonated with me, and I think that… That’s so incredibly important. Doctor means teacher, right? I think that’s the Latin… We are obligated to teach our patients, so I just really appreciate that that’s something that you incorporate in your daily practice. If we shift gears a little bit and talk about access and some of the concerns about treatment access for lung cancer patients, which you’ve actually alluded to, we know that sometimes these barriers that patients face actually limit their access to treatments, and you indicated surgery as being the mainstay and some difficulties with that, so how can we empower patients so that they don’t feel limited in their care, and how do we make them aware of these treatment options that are available, so that if they are in an office and maybe something’s being offered, but that’s not actually, the standard of care, how do we empower them to get that information and then to act on it? 

Dr. Olugbenga Okusanya: 

Yeah, so number one, which is something I think people do and they don’t realize how valuable it is, bring a friend to the appointment, don’t come by yourself, because you are in an incredibly vulnerable position, you’ve learned or are learning something incredibly emotionally charged and usually very scary. So, you want to bring someone who obviously is gonna love you and care about you, but has enough emotional distance from it that they can be your advocate, they can ask those questions in the room that you may just not be there mentally to ask. Number two, never be afraid to get a second opinion, if you’re lucky enough to live in a populous area with multiple health systems, get a copy of your chart, get a copy of your data, get your disc, make an appointment to see another specialist in another health system and see what they say. Because at the very least, if the information is concordant, then you’re gonna feel pretty good about saying, okay, then I should just go where I think I feel best or who I have the best sort of relationship with. And again, if you are not lucky enough to have that opportunity, I would be very aggressive about seeing if telehealth is an option to reach out to someone who is a specialist, I’ve had not happened to me in the past, I remember I had a woman who telehealth, me from Ohio, because she’d actually read one of my papers about lung cancer, and she sent her scans, uploaded them, I looked at them and I gave her my opinion, and this is the new age or medicine. 

This is where we’re at now. This is a viable option, and even if telehealth isn’t an option, you can always just get on the phone. As a lung cancer specialist, a lot of the information I need can be garnered from test scans and images, so frankly, the physical exam has some role, but is not the mainstay of how a lot of the decisions are made. So even if I see your scans and I talk to you, I can give you an opinion over the phone, it takes me 15-20 minutes, and a lot of times, those visits may not even be charged, depending on who you actually ask to give you an opinion. 

Dr. Nicole Rochester:

Wow. Free of charge. Okay, I see you’re teaching me something that I didn’t know. I’m a huge proponent of second opinions, I’ve talked to so many patients and family caregivers who think that they’re offending their doctor if they ask for a second opinion, so I appreciate that you brought that to the forefront and you deserve to have multiple opinions as you’re making these very important life-changing decisions. So, thank you for sharing that. This is a perfect segue. You mentioned telehealth, and we know that one of the barriers to receiving care, and you’ve indicated that in terms of having access to a multi-disciplinary team, having access to thoracic surgeons as opposed to general surgeons, so we know that that is impacted by where we live, and that often our geographic location can actually be a barrier to the receipt of quality care, so I’d love for you to just talk a little bit about how patients who may be in more remote locations can make sure that they are also receiving appropriate care for their lung cancer. 

Dr. Olugbenga Okusanya: 

Yeah, I think this is a very substantive challenge, I think this is one of the holes in healthcare, there’s these regions in the country where you just are not gonna have access to any number of surgical sub-specialist or radiation oncologist, or lung cancer specific oncologists. I think that is a really big challenge. I think we have actually learned through the pandemic that these physical barriers really are not the reason to not get the best care, so I think those patients should be exquisitely interested in telehealth and in phone calls, and I think most healthcare systems now, because the reimbursements have been approved for telehealth and actually now built infrastructure to support it as an ongoing concept. So now, if you are a patient that’s in Arizona and you want to talk to a doctor who’s in New Jersey, you can do that, you can make that happen. If you find someone, you Google them, you find a friend in that area who know someone, you can call their office and say, I want to have a telehealth visit, and as long as you have broadband internet and a phone, you can do it. You can have that conversation. 

So, I would advocate for people to really make sure that you at least feel like people in the sort of local regional area that you can perhaps get to maybe two, three hours away, but you can imagine a scenario where you can get there, you can try and establish some level of care and some level of rapport with them. I think that’s something that has really opened, has been one of the few good things to come out of the pandemic. 

Dr. Nicole Rochester: 

I was gonna say the exact same thing. That is one… There haven’t been a lot of positive things, but that certainly is one of the positive outcomes of the pandemic, is this surge, and it’s not that we already had the capability, but it certainly was not being used to its maximum capacity. I appreciate that. So, speaking of telemedicine and COVID, think one of the challenges that patients and often care partners have is understanding when is a telemedicine or telehealth visit appropriate versus when do you actually need to go see that doctor in person, so… Can you help clarify that? 

Dr. Olugbenga Okusanya: 

Yeah, so I think in general, even if you start with the telehealth is, I think there’s very little downside to telehealth for almost anyone in general, because a lot of the information can be garnered from the patient record, from their scans. I think in general; it gives you 85% of what you need out of that interaction, and it may be more convenient for the patient, a lot of times it’s actually more convenient for the doctors, doctors have now found ways to work from home. They do have to have their clinic from home, it’s a much more relaxed environment than more efficient. I think there are times like for instance, I have to make decisions about offering surgery to patients who I consider to be moderate or high risk, I think there is a benefit and having that patient come and see me in the office because they have to somehow pass what we call the eyeball test, and that is a little bit of where this disparity comes in in lung cancer surgery, because it depends on who’s eyeball is looking at you, making your determination about what they think is gonna happen with you in surgery. 

I remember… Actually, one of my favorite patients ever. She had data that did not look like she would tolerate surgery, everything about her data did not look favorable. And I saw her, I remember seeing her in person, and you could see the spark in her eye and energy that she had, and I said, you know what, we’re gonna do it. And she did great, she did phenomenally well. And that is a case where if you’re in the population of patients that may be slightly more moderate, slightly more high risk, and you need someone to really look you in the eye and you say, I’m going to do what it takes to get through this. I think that’s the patient where the in-touch, in-person visit really is that extra touch that can be benefited.  

Dr. Nicole Rochester: 

Wow, I love what you said about the spark in her eye and also how you connected that to health disparities, and I don’t know the race or ethnicity of the patient that you’re describing, but we certainly know that that makes a difference, and I just wonder if that had been a different physician, would they have seen that same spark? And I think it just goes back to what we were talking about earlier, and the importance of finding a physician or health care provider with whom you connect, someone that actually respects you, someone that listens to you and see you as a whole person. So, the fact that you were willing to go beyond that data on her chart, which screamed, this is a poor surgical candidate, met her in person, and something about her let you know that she was gonna be okay. 

Dr. Olugbenga Okusanya: 

Agree. And that’s why in medicine and surgery is still art at the end of the day, it’s still an art. You make decisions, best informed decisions, but there’s a lot of it that is still really special and mystical in a way, and I think having that in-person interactions will let you practice that and it’s exactly what you said, you want to have a really nice relationship with the physician, especially anyone that’s gonna be doing anything that might be invasive or dangerous because for the most part, you meet someone for 45 minutes and then you sign up for what could be a life-threatening event. So, you, the physician and the patient should feel really good about that interaction and whatever that energy is, it’s really important, it’s a little bit kind of sacred, I think, and I think it’s really valuable to invest in that if you don’t like the surgeon, you really don’t feel like it’s a good fit or you don’t like your oncologist, find someone else. You’ll do better in the long run, for sure. 

Dr. Nicole Rochester: 

That is so incredibly important. I agree, 100%. So much of healing is beyond just the nuts and bolts of the medical care that we provide, or in your case, the surgical care, there’s so much more to that, that’s not really well studied, but that relationship and that connection is key. 

Dr. Olugbenga Okusanya: 

Critical, and that’s not to say that necessarily the person has to be like the warmest, friendlies, the most fun person you ever met, some people prefer a more yes ma’am, no ma’am, clear cut, well-defined boundaries of a relationship. Some people prefer a big hug and a laugh and a joke, so if you’re getting what you need, that’s exactly what you need, and if you’re not getting what you need, you should think about your other options. 

Dr. Nicole Rochester: 

Love it, love it. Alright, Dr. Okusanya, so we’re gonna talk now about staying on that theme of empowering patients, we know that all of these barriers that we’ve been discussing can impact and limit treatment options, and we know that late diagnoses or not getting the proper care at the outset will lead to more complications and unfortunately, even death in some situations, and as you’ve alluded to, we know that patients who are educated about their illness, patients who take an active role in their medical care receive better care, they have better outcomes. So, what are some key questions that patients and care partners should ask at the very beginning when they are first beginning this journey with lung cancer? 

Dr. Olugbenga Okusanya: 

So, I would say… Question number one that I would ask is like, do you specialize in this? Is something that you do on the regular basis? What percentage of your practice is lung cancer care? You would really like an answer that’s more than 50%, you would like someone who sees lung cancer patients and take care of lung cancer patients as a matter of routine. And something I would also say as a patient, you kind of want your care to be routine, you don’t wanna be someone where things are just being figured out for the first time, you really wanna have someone who does this all the time. The other questions I would ask are, can you tell me what all the options are, not just the one you’re offering to me, I really wanna know what all the options are, and I always tell patients the options are really very broad. A physician chose the option is one, you may wanna not do anything that is an option, you know saying We know it’s there; we understand and we’re gonna watch it or not do anything is a very reasonable option they should tell you about biopsies or surgery or non-invasive therapeutic modalities. 

You really wanna say, I want you to give me the laundry list, all the things that are possible in the institution that I’m sitting in. And then I would also ask, what are the things that you are not considering before that might be options. What are the things that maybe you’ve ruled out in your mind and can you tell me more about that? Because we’re very physician, they’re very good at heuristics, really good at skipping steps and making next logical jobs, so it’s good to ask one of those steps that you skipped in your life and why did you skip them? And then the last thing I would ask is, Is this the kind of case that should be discussed in a multi-disciplinary clinic or conference? Is there anybody else I should talk to about this problem? And I think if you can ask those questions and feel very confident about asking those questions again, most practitioners who are high level and specializing, this will not be offended, they will be glad that you’re asking the question, it will be a relief for both of you. I think if you can ask those questions, you can really help to eliminate some of those ascites and really get on the right trajectory from the beginning. 

Dr. Nicole Rochester: 

Those are such important questions, starting with the first one you provided, which is… Do you specialize in this? I think that we spend a lot of time sometimes betting, other professionals, even hair stylists, or if we wanna get our car fixed, we wanna go to the person that specializes and whatever is wrong with that particular problem, but we don’t always take such care with our most precious commodity, our body. So, I think that’s so incredibly important that we ask that question, and it’s not to make bad comments about those who don’t, but people like yourself have trained for many years, and there’s something to be said about that when this is your area of focus, and this is what you do day in, day out. So, I love that, I also really love what you said about kind of getting inside of the brain of the doctor, because you’re right, we’re skipping steps and we’re going through algorithms, but we don’t often bring the patient into that process, and so I really love the idea of the patients questioning, are there things that you didn’t consider and why? And really having a full understanding of all of those treatment options, and maybe if the doctor has erroneously ruled out one of those possibilities based on maybe an assumption that gives the patient an opportunity to clarify that. 

That is very powerful. 

Dr. Olugbenga Okusanya: 

And I would say, as a patient, oftentimes, we wanna describe very positive feelings towards your physician, it’s a notch a very natural thing to do because you want them to be good, so that eventually you’ll be good and they’ll take good care of you. You wanna ascribe those positive thoughts, and I think that’s very reasonable, but we should approach that with a little bit of question because this is someone who has a lot of information and a lot of knowledge, and you wanna make sure you are getting everything in the middle, so it doesn’t get lost in translation. You wanna make sure you’re there for that conversation. 

Dr. Nicole Rochester: 

Absolutely. What advice do you give to patients that you see so that they can feel empowered Dr. Okusanya? Is there any specific advice that you give when you see patients and things that just helped them to take this active role that you’ve been describing? 

Dr. Olugbenga Okusanya: 

Number one, I tell patients to bring someone with them to their appointments, someone who can stand by as within reason someone who can be there to listen as well, ’cause usually I say, if I tell you 100 things in an appointment which can legitimately have, I could give you 100 unique points of information and in 1 45-minute visit. If you catch 30 of them or 35 of them, you really understand that. I think that’s a lot because they’re very emotionally charged. So, hopefully someone else, it’s with you, maybe catches another 30 or 40, and that gets you to a point where you can really sit down later and understand. I encourage patients to take notes to write things down, and if they want to, to record, to have audio recording of the session, I wouldn’t say anything to you now that I wouldn’t say in a month or in a year, or anywhere else. I’m gonna tell you exactly what I think and I… And if I have uncertainty, I will expose that uncertainty, I will let you know that this is a case that could go either way. And this is a piece of information that I’m looking back and forward between these two options and that really helps the patients later on go back and say, Did I really hear that right? Did I really understand it, right? So that you can feel like you’re getting the best care, and I really think that you have to make sure that you feel comfortable with the provider. 

I think that’s just the number one thing. Are you happy with them? Do you like the way they comported themselves? Did you like the way they spoke to you? Did you like their staff? Also remember, you’re likely gonna be interacting with their staff as much as you interact with the physician, so the other people in the office, the front desk people, the nurse practitioners, the medical assistants, those are the people that you’re gonna spend a lot of time talking to. Did you have a good rapport with them? Also, all that stuff counts to make sure that you’re getting the best experience possible and that you can really be an advocate for yourself. 

Dr. Nicole Rochester: 

That is incredible. Well, it’s just about time for us to wrap up, I just wanna reiterate, you share so many pearls today, but I just wanna reiterate a few of them, and they really resonate with me as a former caregiver and as a health advocate, but that’s the importance of asking questions, the importance of bringing a buddy, and I appreciate that, particularly in your field, when we go into a doctor’s office and the word cancer is stated, everything else goes out of the window, and even in less threatening situations, there’s data that shows that… I think about 20% to 25% of what we say as physicians is actually retained, so certainly when you get a bad diagnosis, that number is even lower, so bringing somebody with you who is not necessarily emotionally detached, but they can literally kind of be the note taker, and they may even pick up on some nuances and things that you may have missed as a patient is so incredibly important. I love that you’ve offered the option of recording, I think that’s also another tool that many patients and family members aren’t aware of, and I think there’s an assumption, and it’s true to some degree that doctors don’t wanna be recorded, but knowing that that is an option. 

The fact that the care that we receive really is impacted by whether or not the person specializes in lung cancer, a thoracic surgeon, and being empowered to ask that question, is this your specialty? How often do you see patients like me and being empowered to ask those questions that ultimately won’t lead to improve care is just so incredibly important, and I think just everything that you’ve shared that really allows the patients and the caregivers to understand just how important their role is you’re the one that’s going to take out the cancer and you’re the one that’s going to get them better, but there’s so many things that happen before that step, before they are on that operating room table that is so important. Do you have any closing thoughts that you’d like to share with us, Dr. Okusanya? 

Dr. Olugbenga Okusanya: 

I think for patients and their advocates, I think it’s really important number that you’re putting together a health care team. You’re putting together a group of people like the avengers. You’re putting together a bunch of people to come together to help you deal with this health problem. You are entering into a therapeutic relationship, so that relationship has to be healthy in order for you to have the best possible outcome, you should feel good about, you know, your doctor is gonna be very skilled, became very knowledgeable, and just like we talked about before. You really wanna find someone who has the heart of a teacher, someone who can sit down and explain it to you in a way that’s gonna be digestible and that is gonna be actionable. So I think if patients and advocates remember that you wanna build a really solid, a really healthy relationship with someone who’s gonna help you take care your health, I think if you do that, you’re going to be in excellent care.  

Dr. Nicole Rochester: 

Awesome. Well, I really enjoyed this time. Thank you so much, Dr. Okusanya, you have given us so much useful information, and I wanna thank all of you again for tuning into the Patient Empowerment Network program.  

How Can BIPOC Prostate Cancer Patients Protect Themselves Against Care Inequities?

How Can BIPOC Prostate Cancer Patients Protect Themselves Against Care Inequities? from Patient Empowerment Network on Vimeo

How can BIPOC prostate cancer patients help protect themselves against care inequities? Host Dr. Nicole Rochester and Dr. Yaw Nyame share their perspectives about factors that work against equitable care for some BIPOC patients – and how patients and providers can work toward improving care for better health outcomes.

See More From Best Prostate Cancer Care No Matter Where You Live


Related Resources:

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Transcript:

Dr. Nicole Rochester: 

We know that there are as with every other type of cancer and every other disease, there are significant health disparities with BIPOC patients. And so, Dr. Nyame, I’d love for you to talk about specifically with prostate cancer, some of the disparities that you see in your practice and in your research, and then what are some things that patients of color can do to protect themselves from these inequities? 

Dr. Nyame: 

This is a very important topic for me, it’s something that I am very passionate about, and as Dr. Grivas alluded to, I am doing a lot of research on, and I think the statistics are so grey. Black men are 80 percent more likely to be diagnosed with prostate cancer. So the average man in the United States has a one and nine lifetime risk of being diagnosed with prostate cancer, that’s probably one in six or one in seven Black men. Black men are twice as likely to die from prostate cancer compared to men of other races and ethnicities in the United States, and a lot of this is driven by the social milieu and factors that we’ve talked about today. What troubles me is when we talk about these statistics, I fear that that in of itself is crippling for some Black men, “If I have this diagnosis, and I’m not going to do well. Why should I do anything?” And I can tell you that the literature and all the research that we do, and it gets refreshed every 10 years or so, someone will do the study and it shows that if we have Black men and men of other races or white men, and we give them the same treatment for the same level of disease, that the outcomes are actually very similar. And a better way to state that for me is if you’re diagnosed early and you get the treatment that you should get irrespective of your race, it seems like outcomes can be quite good. 

And so, a lot of what we see with regards to prostate cancer inequities are driven by lower treatment rates and probably an impact of lower quality care. And when I say that, what does that mean? Well, do you get your care at places like the Seattle Cancer Care Alliance or the Cleveland Clinic, or Johns Hopkins or MD Anderson, where you have providers who are expert and do a lot of prostate cancer care, or are you being seen by someone in the community who I guarantee is an excellent clinician, but doesn’t have the same resources and the same expertise, in the sense of being focused on one disease process or one set of cancers? For instance, we are genitourinary cancer specialists, a fancy term for being cancer doctors of the plumbing system. But because that’s all we focus on, we know a lot about the process, we know what works, and we know what the standards of care. So, I think when you can get the right treatment at the right time, and you can get it from teams that are really specialized in this, that our outcomes are going to not care about what your self-defined race is when you check the box. 

The problem is, how do we get…how do we close that gap that exists currently that doesn’t allow people to get that care, and I think we’ve talked about rurality, so I think…I grew up in Oklahoma, and I could see that if you are in the sticks in Oklahoma and you’re not near a cancer center, like something down in Dallas, that your care might be impacted, but…especially if you have to travel a lot and it’s expensive. But we have major U.S. cities like Los Angeles where you may share a ZIP code with a millionaire but use very different health services. So, it’s not always a reflection of how far you have to travel, but it also is factors about how welcoming institutions that provide high quality care can feel for populations like our BIPOC populations who sometimes have been the subject of medical experimentation and lower quality care sometimes because they might not get shuttled to the same services historically. And I think we have a lot to undo to rebuild the trust that is required to have Black men not be fearful of seeking care from us, but be trusting. 

How Can We Address Noted Disparities in Multiple Myeloma?

How Can We Address Noted Disparities in Multiple Myeloma? from Patient Empowerment Network on Vimeo

What can patients and healthcare providers do to improve health disparities for myeloma patients? Expert Dr. Joseph Mikhael explains the communities that need more outreach about myeloma and those he views as vital to educating about myeloma risk and symptoms for earlier diagnosis and better health outcomes.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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Will Telemedicine Be a Mainstay for Myeloma Patients After the Pandemic?

 

Transcript:

Dr. Joseph Mikhael:

Well, I have to tell you, this is a very personal issue for me, disparities in multiple myeloma, and I have the privilege of being involved in many programs and platforms to try and address this. And like with any major consideration, there isn’t a simple solution, it is going to take a multi-fold solution that has many parts. The first part that I think is critical is engagement of our communities, whether it is the Black community, the Hispanic community, even though in more rural areas or patients uninsured, we really require a kind of an engagement that’s real to build trust, to build confidence, this is stemmed from years of mistrust and understandably, so that we have to re-build.

I try to do that personally in my practice, but advocate for it on a larger sphere. Secondly, I want to empower my patients to learn and for communities to learn, whether someone has myeloma might have my load or as already myeloma, and I don’t have it might have it, or do you have it? Those patients need to be educated about myeloma so that they can understand who’s at risk and facilitate a more early and a more accurate diagnosis. Thirdly, I believe very much so, in educating the primary care world, the majority of patients with myeloma are still diagnosed by a primary care physician. They may ultimately see a hematologist-oncologist to confirm that, but the suspicion comes at the primary care level. And so I’m involved in multiple programs to educate primary care docs to think about myeloma, as I like to say, “If you don’t take a temperature, a patient won’t have a fever, you need to look for it.” And so if there are certain signs or symptoms that may include bone pain, significant fatigue, signs that we see like protein in the urine or a low hemoglobin or kidney dysfunction, these things need to push us to look for multiple myeloma. And then lastly, to look at disparity as an important area of work across the whole board that we need to better access to have better access for clinical trials and for the therapies that we know will benefit our patients, and that’s on us as physicians. But it’s also on the community at large, our regulators, our insurance companies.

Those are the kinds of things that I’m working on so that we can make a long-standing difference and really start to reduce this currently awful disparity in multiple myeloma.

 

Myths vs. Facts: Myeloma Health Disparities Care Infographic

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How Can I Get the Best Multiple Myeloma Care No Matter Where I Live? Resource Guide

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