Tag Archive for: myelofibrosis specialists

Engaging in Myelofibrosis Shared Decision-Making | How Patients Can Collaborate With Healthcare Providers in Treatment

 
How can myelofibrosis patients engage in shared decision-making? Expert Dr. Michael Grunwald from Levine Cancer Institute discusses ways for patients to collaborate with healthcare providers to determine the optimal treatment approach for their care.
 

[ACT]IVATION TIP

“…patients can spend a few minutes preparing for appointments and find it very helpful. And I encourage patients to write down or type down questions and bring them with them, bring them with the patients to their medical appointments.”

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Harnessing Community Resources to Support Rural Myelofibrosis Patients

Harnessing Community Resources to Support Rural Myelofibrosis Patients

Leveraging Telemedicine to Manage Myelofibrosis in Rural Areas | Overcoming Distance and Accessibility Challenges

Leveraging Telemedicine to Manage Myelofibrosis in Rural Areas | Overcoming Distance and Accessibility Challenges

Managing Myelofibrosis for Patients Living Far From Specialists

Managing Myelofibrosis for Patients Living Far From Specialists

Transcript:

Lisa Hatfield:

Dr. Grunwald, how can patients engage in shared decision-making with their healthcare providers to determine the most appropriate treatment approach for their myelofibrosis?

Dr. Michael Grunwald:

I love it when patients come to me with a list of questions where they’ve thought about their disease since the last visit. And they have a number of ideas, and usually the ideas and thoughts that they have are very good. Sometimes they’re a little bit out there because they spoke to somebody who had a, who had a funny idea, or they talked to somebody whose disease was different from theirs, or they found something online, that was funny and it’s all okay.

So I like answering the hard questions, the easy ones, the ones that I think are out there and not pertinent to the patient’s disease. But I love it when patients have empowered themselves by learning and by gathering information. And they bring the list of questions, whether it’s on their phone or iPad, or whether it’s just written down on a sheet of paper and we go through them together. So I think that that’s really a way that patients can empower themselves. My [ACT]IVATION tip for this question is, patients can spend a few minutes preparing for appointments and find it very helpful. And I encourage patients to write down or type down questions and bring them with them, bring them with the patients to their medical appointments.


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Managing Myelofibrosis for Patients Living Far From Specialists

Myelofibrosis expert Dr. Michael Grunwald from Levine Cancer Institute discusses strategies for patients living far away from specialists, how often blood checks should be performed, and proactive patient advice.

[ACT]IVATION TIP

“…partnership between a specialist and local hematologist-oncologist and/or primary care physician can be beneficial for patients.”

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See More From [ACT]IVATED Myelofibrosis

Related Resources:

Harnessing Community Resources to Support Rural Myelofibrosis Patients

Harnessing Community Resources to Support Rural Myelofibrosis Patients

Leveraging Telemedicine to Manage Myelofibrosis in Rural Areas | Overcoming Distance and Accessibility Challenges

Leveraging Telemedicine to Manage Myelofibrosis in Rural Areas | Overcoming Distance and Accessibility Challenges

Engaging in Myelofibrosis Shared Decision-Making | How Patients Can Collaborate With Healthcare Providers in Treatment

Engaging in Myelofibrosis Shared Decision-Making | How Patients Can Collaborate With Healthcare Providers in Treatment

Transcript:

Lisa Hatfield:

Dr. Grunwald, what strategies do you recommend for managing myelofibrosis patients who might live 200 or 300 miles away from the nearest specialist? And how often, if you are helping a patient who has a local oncologist and you’re seeing them as a specialist, how often do you want to see those patients?

Dr. Michael Grunwald:

So I agree that the partnership is very important. So I enjoy seeing patients who live far away and I enjoy partnering with their local hematologists-oncologists and sometimes their primary care physicians. So I think that, you basically gave it, it’s great advice for patients in rural areas to seek out these partnerships. But it’s hard for patients to come here frequently. Let’s say a patient with myelofibrosis might need blood checks monthly. It’s a long distance to drive 200, 300 miles. I’m not even sure if it’s a drive or a flight or a train trip or bus trip. It can be very challenging. And not everybody has a car. Not everybody has somebody to drive them if they don’t drive. And really a lot of challenges, gas money, so forth. So depending on how sick a patient is, we will tailor the visits.

If I think that a patient is doing reasonably well, then I might see the patient once or twice a year. Sometimes telehealth, sometimes in person, if I’m very worried about someone, I might encourage them to come a little bit more often than that so I can get some hands-on monitoring and do a physical exam in addition to just speaking with the patient. So, I would say it varies, but there are many myelofibrosis patients who check in with me, either in-person or telehealth, if they live in North Carolina as little as once a year, whereas they might be getting their blood checked and seeing their local physician as frequently as every month. 

Lisa Hatfield:

If you do have a patient that you’re seeing once or twice a year and they’re interested in a clinical trial that’s at your center, would that require that patient to relocate to your center for a period of time to be part of that clinical trial?

Dr. Michael Grunwald:

Unfortunately, most of the time, yes. Because trials, especially during the first few weeks and even sometimes the first few months of care on a clinical trial, the trials require very close observation and frequent visits. And depending on the phase of the study, the purposes can be a little bit different. But a lot of that frequent monitoring has the patient’s best interest in mind, meaning the safety of the patient. So patients are being watched for side effects while they’re on an experimental drug.

And we’re making sure that we’re not causing more harm than good with the experimental treatment, which I think is extremely important because our first goal as physicians is to do no harm to anybody. We want to help, but we certainly don’t want to hurt anybody, but we’re not always able to help. But I want to change ones a little bit differently, but our first goal as physicians is to do no harm.

We certainly want to help everyone, most patients we can’t help, which is fortunate. It’s great to be a physician in 2024 because we can help most patients. There are some issues that we don’t help as much with as we would like to, and we just want to make sure we’re doing no harm. That at worst, at worst we’re neutral to the patient. And keeping safety in mind with clinical trials is paramount in doing clinical trials. I don’t think we can do it without keeping safety first and foremost.

So yes, with some rare exceptions, patients do have to relocate to a center like ours or another larger university settings center in order to receive clinical trial care. There are some types of observational studies, meaning studies where patients are receiving a standard of care treatment and they are being observed for certain outcomes where a patient might be able to participate even if he or she is far from a major center. Those studies usually are not using investigational treatments, but they might help contribute to learning and to science, that’s very important in learning about myelofibrosis.

My [ACT]IVATION tip for this question is partnership between a specialist and local hematologist-oncologist and/or primary care physician can be beneficial for patients.


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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.

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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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