Tag Archive for: telehealth

What Are the Advantages of Seeking Care With a Lung Cancer Specialist?

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What Are the Advantages of Seeking Care With a Lung Cancer Specialist? from Patient Empowerment Network on Vimeo.

What are the benefits of seeing a lung cancer specialist? Dr. Thomas Marron discusses the key advantages of specialty care, the value of a second opinion, and options for seeing a lung cancer specialist via telemedicine.

Dr. Thomas Marron is Director of the Early Phase Trials Unit at the Tisch Cancer Institute at Mount Sinai Hospital. Dr. Marron is also Professor of Medicine and Professor of Immunology and Immunotherapy at the Icahn School of Medicine at Mount Sinai. Learn more about Dr. Marron.

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Transcript:

Katherine Banwell:

What’s the advantage then of seeking care with a lung cancer specialist? 

Dr. Thomas Marron:

So, I think it’s extremely important. Unfortunately, a lot of the country, there are not lung cancer specialists available around the corner. But in large cities, there’s typically many lung cancer specialists, but I think it’s extremely important, at least as a second opinion, even if you’re not going to be treated locally by a lung cancer specialist, to seek out expertise.  

And often times, I’ll have patients that come from more rural areas outside of New York and they’ll come, and they’ll see me and then I’ll work with their local provider to come up with a treatment plan. Because the fact of the matter is, is that in every cancer type, but particularly in lung cancer, the field is moving so quickly. So, the treatment options that we have available today were not available in 2022.  

And we’re going to have probably five to 10 drugs that’re going  to be FDA-approved in the next year. And it’s typically the lung cancer specialist where it’s all that we do, we eat, breathe and live lung cancer, we’re the ones that really are up to date on everything. While if you’re seeing a general hematology, oncology provider who I’m always in awe of, they have to stay up to date on lung cancer, breast cancer, lymphoma, leukemia, everything under the sun.  

And when you have so much development in the research that’s happening, you really want to be talking to somebody, at least as a second opinion that knows exactly what the most latest data is and what the best options are available. And also, those lung cancer providers are usually the ones that will know exactly where you can go to get access to certain clinical trials.  

Katherine Banwell:

In seeking a second opinion, can somebody do a tele-visit, or do you have to actually, physically go to see the specialist? 

Dr. Thomas Marron:

So, it depends on the specialist that you’re trying to see.  

There are certain institutions that will allow you to do televisits. Oftentimes doctors, at least for their first encounter with a patient really want to see somebody in person, just so that we can really evaluate how functional somebody is. There’s a lot that I cannot tell through my computer screen, through my Zoom call with a patient.

And so, it can be a little bit difficult, but there are many centers, including our own that will offer patients televisits as a second opinion, for us to get a chance to talk to them about their medical history, review, the treatment decisions that they’ve had in the past or the current treatment decision that they’re dealing with and give our own opinion on what they should do.  

A Look at Promising Strategies to Improve CAR T-Cell Therapy Access

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A Look at Promising Strategies to Improve CAR T-Cell Therapy Access from Patient Empowerment Network on Vimeo.

How can CAR T-cell therapy access be improved? Expert Dr. Krina Patel from The University of Texas MD Anderson Cancer Center explains strategies that have increased CAR T access, monitoring of CAR T patients, and advice for patients to access support.

[ACT]IVATION TIP

“…talk to your teams, if it’s not the doctor, at least the nurse practitioner or the nurses about resources, because through the pharmaceutical companies as well as things like LLS and other places, they actually have funds for people going through trials or CAR T therapies, etcetera, that we can help. My nurse knows all these things that she knows how to start working in our social worker and our case managers, they all know all these things so that they can get you the resources you need…”

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Transcript:

Lisa Hatfield:

Dr. Patel, given the exacerbation of existing barriers during the COVID-19 pandemic, what strategies do you believe are most promising for enhancing patient access to CAR T therapy, particularly in terms of innovative clinical trial designs and stakeholder collaboration? And one of the questions that comes up a lot is during COVID I was able to participate in a clinical trial, but I could do some things closer to home where we don’t have a big center. Are those strategies still in play? So patients might be able to travel, maybe once a month or once every two months for a CAR T trial and then go home for a little while. Can you talk about that a little bit?

Dr. Krina Patel:

Yeah, I think COVID did help us learn how to use telehealth much more, where when it was allowed, I think the good news when we had it, we could do it for all 50 states. It was amazing. All my patients I could talk to through virtual visits, etcetera, use their local labs. Clinical trials are a little harder because you have to have labs that are certified and making sure that they’re able to do those intricate labs that you need.

For instance, certain things are central labs for where they have to look at your T cells and how they’re expanding over time while you’re getting CAR Ts. So we call those central labs because those are labs we draw and send to the company, to whatever lab they’re using to help with that stuff. Things like CBC, your blood counts, your kidneys, liver. Yes, those things are easy to get anywhere. There are multiple labs like Quest and Labcorp, etcetera, that can do those.

So I think those are things that we can help with. It’s the first 30 days of any CAR T study that for safety reasons right now, we still say you have to be at the center where you’re getting the CAR T on trial or even off a standard of care. And that’s more for if you get one of these toxicities like the delayed neurotox or an infection, that we can get you back into the hospital if needed or at least get you diagnosed really quickly and treated quickly.

But yes, after those 30 days, at least most of our CAR T studies really try to limit how often you have to come in. So once a month is pretty typical and then once every three months after the first couple of years, and then once a year if that. I hope that with the FDA and with our sponsors, our pharmaceutical companies that run these trials, that they can really help get these things, the logistics figured out, because that’s what it ends up being. Once you’re done with your first at least three months of CAR T, we know patients are going to do well. And it’s really about whatever labs and visits we need to do, how can we do them virtually? And again, if my sponsors and the FDA would allow that, we’d be really happy to.

And I know the FDA is all for it. They are trying to help increase access as well. And so some of the bigger centers like us, and I think Sloan Kettering and City of Hope and Mayo, we also have other centers that are outside of the main campus. So MD Anderson doesn’t have other hospitals the way Mayo does. So Mayo has Arizona, has Rochester, and Florida. MD Anderson has a sister network.

And so we’re hoping to tap into that one day, because there are places everywhere. And if we can do that, that would actually help get access to a lot of these novel therapies a lot faster to our patients. And within Houston, just being such a big city, we have four other centers out in the outskirts and we are trying to actually increase our abilities to do therapies there as well, including CAR T and bispecific therapies.

Lisa Hatfield:

Thank you for that, Dr. Patel. So one question, I have a follow-up question. If a patient has to travel, maybe they live in an area where there is no academic center, they’d have to travel for a clinical trial. And you mentioned the first 30 days. Are patients usually, one of the big challenges is financial, is a financial challenge. Are patients sometimes feeling well enough during that 30 days if they can work remotely? Can they work remotely while they’re at your institution for 30 days? Is that pretty typical or is that something you don’t see very often?

Dr. Krina Patel:

Yeah, no, that’s a great question. So we are trying to make the whole thing outpatient soon, and a lot of our trials are allowing for CAR T outpatient, and only if you get a fever, then we admit, most people do get admitted because most people get fevers from the CAR T, but for the most part patients still feel well, it’s not that they’re having this horrible nausea, vomiting, diarrhea, things that we think about with auto transplant, where people really can’t work because they’re just exhausted. The majority of our patients are bored in the hospital, it really is that we’re just there just in case the fever turns into something worse. So a lot of my patients who are still working actually do work remotely, I can think of a few just this past week that talked about the fact that they were able to do this.

And I think the other piece we have so many resources. And again, the big activation tip here is talk to your teams, if it’s not the doctor, at least the nurse practitioner or the nurses about resources, because through the pharmaceutical companies as well as things like LLS and other places, they actually have funds for people going through trials or CAR T therapies, etcetera, that we can help.

My nurse knows all these things that she knows how to start working and our social worker and our case managers, they all know all these things so that they can get you the resources you need and some of the centers, our academic centers have resources as well. We have housing for free, you have to sign up for it in advance, but you might be able to get housing for free for that whole 30 days, and so there’s a lot of different resources that you just have to ask about, and then again, through our social worker, case manager, nurses, and sponsors. We can actually get some of that for you too.

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How Can Prostate Cancer Screening Access Be Increased?

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How Can Prostate Cancer Screening Access Be Increased? from Patient Empowerment Network on Vimeo.

How can access to prostate cancer screening be improved? Expert Dr. Ronald Chen from KU Medical Center discusses the importance of prostate cancer screening, methods that experts are using to increase awareness, and patient advice for optimizing health outcomes.

[ACTI]IVATION TIP

“…if you’re diagnosed with advanced prostate cancer, always consider if a second opinion is right for you, a second opinion with a specialist who may have access to the latest treatments, technologies and clinical trials, and having that information before you to make a treatment decision can provide you with information, so you can make the best decision and have the best outcome for your cancer.”

Download Prostate Cancer Screening Tips Guide

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Transcript:

Lisa Hatfield:

Are there any innovative approaches or technologies that you and your team are exploring to improve prostate cancer detection, treatment, or support services, especially for communities with limited access to healthcare resources?

Dr. Ronald Chen:

I think that access to screening is so important because screening, to be able to catch a cancer as early as possible allows the highest chance for cure and the best outcome for the patient. So what my team has been doing to try to increase access to screening is two-fold.

One is, we need to increase the awareness that screening is important. And unfortunately, in prostate cancer, there’s actually some controversy about whether prostate cancer screening is good or bad for the patient. There’s been some, I think, unfortunate national guidelines that recommend against screening and a lot of debate about whether screening is good or bad. I think it’s been unfortunate. It actually has led to some physicians and patients to really be doubtful about prostate cancer screening. I think we need to do a lot of education to actually reverse that misperception. And so one aspect is to educate, to make sure people do understand that prostate cancer screening, early detection is important.

So part of what my team is doing, not only really screening, but also all of prostate cancer and actually other cancers as well, is that my cancer center is doing a regular podcast. And so, what my cancer center director, Dr. Roy Jensen, on a weekly basis will interview a cancer expert and have a conversation about some cancer topic. It could be screening, it could be how to live a healthy lifestyle as a cancer patient, it could be about survivorship, it could be about a new technology to diagnose or treat cancer, a topic, a different topic every time recorded as a podcast with experts at my center and other places, and that podcast is freely available to anybody who wants to learn about different topics.

And I think that’s really great because I think knowledge gives patients power to make the right decisions. And so, our podcast, and actually we have some videos as well freely available through Facebook and other media channels, is one way to help us tackle this issue, and increase knowledge.

I think the other aspect of increasing screening is to have more opportunities for screening. And so, what my cancer center has been doing is we actually host three cancer screening events around our state, around Kansas, around Western Missouri, which is close to where we are, and we would just host screening events. It’s prostate cancer, it’s skin cancer, it’s lung cancer, it’s a colorectal cancer. The more we’re able to offer these free community events where people can come and just get cancer screened, the more access we provide and the more early detection we have for patients. I think those are pretty innovative strategies, free education, podcasts, and videos that anybody can access, hosting community events for screening. Sometimes we have it at local churches, sometimes we just have local hospitals to bring this to where people are. I think it’s pretty innovative, I think we make an impact there.

I think another really important thing is telehealth. I think patients from almost anywhere in the country, even if they live in rural areas, can have access to cancer experts and can have access to clinical trials because of telehealth. Telehealth, which is basically a consultation with a cancer specialist, either through phone or through video like Zoom, has really increased the access patients have anywhere to expert opinion, so they can make the right decision for their treatment and potentially have access to clinical trials. I think that’s really made a huge difference for patients as well.

And so, my activation tip for this question is, if you’re diagnosed with advanced prostate cancer, always consider if a second opinion is right for you, a second opinion with a specialist who may have access to the latest treatments, technologies, and clinical trials, and having that information before you to make a treatment decision can provide you with information, so you can make the best decision and have the best outcome for your cancer.

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Advanced Prostate Cancer Clinical Trials | Access and NRG-GU008 Trial

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Advanced Prostate Cancer Clinical Trials | Access and NRG-GU008 Trial from Patient Empowerment Network on Vimeo.

What’s the latest in ongoing advanced prostate cancer clinical trials? Expert Dr. Ronald Chen from KU Medical Center discusses ongoing trials, the INNOVATE trial and NRG-GU008 trial, clinical trial benefits, and patient advice for gaining clinical trial access.

[ACT]IVATION TIP

“…ask if clinical trial is not available at your local cancer center, see if a second opinion through telehealth with a larger cancer center is possible, so that you can learn about clinical trial options and see if that’s something that you want to pursue.”

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Transcript:

Lisa Hatfield:

Dr. Chen, can you talk about any clinical trials that are ongoing for people who are living with advanced prostate cancer? And in particular, any trials that you or your colleagues are doing right now that would be of interest to this audience? And my last part to that question is, if they are not able to access those easily, do you have suggestions for patients to access those clinical trials if they’re working with a local community cancer center?

Dr. Ronald Chen:

I think having access to clinical trials is very important for every cancer patient and especially patients who have advanced cancer. And the reason I think this is really important is because in advanced cancer, we’re not doing as well as we want to in terms of extending survival and potentially even curing some patients. We’re not doing as well as we want to, and there’s a lot of room for improvement. And the only way to improve the outcomes for patients with advanced cancer is through clinical trials. Clinical trials is where patients can access first new promising treatments that are not currently available widely because it’s not yet FDA-approved.

And so, I think access to clinical trials is important and often offers a hope for patients because of a new promising agent that they could access through the trial. So I think that’s really important. And there are actually multiple…there are actually a lot of open clinical trials ongoing around the U.S. for patients with advanced cancer, testing new drugs, testing new ways to deliver treatment. I absolutely believe that there will be a new treatment approved for advanced prostate cancer probably every year for years to come because of all the new trials that are happening because of all the new promising agents that have been developed, being tested right now. So I think that’s really important.

I want to highlight a couple of examples of trials, but again, there’s so many, it’s hard to talk about all of them. But I’ll highlight a couple. There’s one trial sponsored by the National Cancer Institute for patients with no positive prostate cancer, which is when prostate cancer has spread to the lymph nodes, and the trial is called NRG-GU008, we call it the INNOVATE trial; and for patients with no positive prostate cancer, even though the cancer has spread to lymph nodes, this is actually a group of stage IV prostate cancer patients where there actually is still a hope for cure. We could actually still cure some patients with no positive prostate cancer. And the goal of this trial is to improve that cure rate.

So maybe right now, with aggressive treatment for these patients, maybe we can cure 50 percent of these patients in this trial that will incorporate a new drug that seems promising, we’re hoping that maybe improves the cure rate higher, maybe to 70 percent or higher. And so, I think that is a really important trial for patients who have that specific diagnosis.

In terms of for patients who live maybe in an area that…where the local cancer center does not offer clinical trials, I think there’s still opportunity for them to learn about clinical trials and even participate. And what I would advocate for is to ask for a second opinion.

Second opinions in cancer is now actually pretty commonly available because of the arrival of telehealth. Even if you live in maybe a small rural area, you can still request a telehealth consultation from a larger cancer center by telephone, by video, and through that, you can ask about clinical trials that are available. And I think it’s important to pursue that, to learn about the options, to learn if there’s a new treatment that could be available to you before you make a final decision on choosing treatment. So with telehealth, second opinion, learning about options, I think there’s actually opportunities to access clinical trials that way.

So my activation tip for this question is, ask if a clinical trial is not available at your local cancer center, see if a second opinion through telehealth with a larger cancer center is possible, so that you can learn about clinical trial options and see if that’s something that you want to pursue.

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Overcoming Geographical Barriers in Endometrial Cancer Care

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Overcoming Geographical Barriers in Endometrial Cancer Care from Patient Empowerment Network on Vimeo.

How can endometrial cancer care barriers be overcome in regards to geographic location? Expert Dr. Emily Hinchcliff from Northwestern Medicine discusses geographic care barriers, solutions, and patient advice to be proactive in their care.

[ACT]IVATION TIP

“…understanding that post-menopausal bleeding is never normal and that you need to see a physician for that…regarding the fact that accessing care can be, as you mentioned, done in many, many different ways these days. And so understanding what your options are, whether that’s telehealth, whether that’s a consult visit and then receiving the majority of the subsequent care closer to home, you have a lot of options.”

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Transcript:

Lisa:

If a woman goes in and is diagnosed at her local cancer center and has endometrial cancer, should she see some type of subspecialist, would it be of benefit to that patient maybe to even do a consult, a telemedicine consult at least upon diagnosis? Or how can a person who is more remote geographically access a subspecialist care or expertise?

Dr. Emily Hinchcliff: 

Yeah, absolutely. So I think that telehealth has really changed medicine in general and provides some really great opportunities for access. There is a big kind of dichotomy in endometrial cancer where early stage disease is often caught because it has a symptom, vaginal bleeding is a symptom. And so early stage disease can often be treated with surgery alone.

And so that surgical management, again, can potentially be done by a GYN oncologist at a one single time point. The subsequent care, so I’ll just use myself as an example. I will often see women for sort of that initial visit, treatment decision, sometimes surgery, but then if they need additional adjuvant therapy, such as chemotherapy, they’ll go closer to home to receive some of those therapies. And then I will serve as a bit of a consultant to their providers closer to home to discuss what treatment options, what regimens and how to manage toxicities might be good in their case.

Lisa:

And do you have an activation tip for patients for that question?

Dr. Emily Hinchcliff:  

Yeah, so I think that my activation tip here regarding barriers to endometrial cancer care is first and foremost addressing the knowledge gap, understanding that post-menopausal bleeding is never normal and that you need to see a physician for that, I think is the first key tip. The second tip, I guess, if I could give a second activation tip, is regarding the fact that accessing care can be, as you mentioned, done in many, many different ways these days. And so understanding what your options are, whether that’s telehealth, whether that’s a consult visit and then receiving the majority of the subsequent care closer to home, you have a lot of options. And we as a field in GYN oncology are really collaborative. And I think most of us would feel very positively towards creating a team to help you get the care you need.

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Key Resources for Small Cell Lung Cancer Patients and Families

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Key Resources for Small Cell Lung Cancer Patients and Families from Patient Empowerment Network on Vimeo.

What’s important for small cell lung cancer patients from underrepresented communities to know? Dr. Rafael Santana-Davila with the University of Washington School of Medicine shares advice for patient resources, his perspective about lung cancer stigma, and ways to mitigate issues with stigma.

[ACT]IVATION TIP

“…make sure that you ask your doctor, ‘Well, what about palliative care? What about social worker?’ or ‘I’m having trouble with this or that. Who can help me with this?’”

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Advice for Small Cell Lung Cancer Patients Considering Clinical Trials

Transcript:

Lisa Hatfield:

What key resources and support services do you typically recommend or provide to SCLC patients, particularly from underrepresented communities following their diagnosis?

Rafael Santana-Davila:

That is a good question that I don’t know the right answer to. So part of the resources that we share with the patient is a visit with a social worker, a visit with a nutritionist, a visit with our colleagues in palliative care, that they’re all part of treatment of the patient with cancer that is available both for patients of underrepresented communities or other patients.

So that is the activation tip for that is make sure that you ask your doctor, “Well, what about palliative care? What about social worker?” or “I’m having trouble with this or that. Who can help me with this?” And like we said before is a patient empowerment is…a patient that is empowered is a patient that asks all those questions and receives more help. There’s a lot of help that is out there and the key is to connect those individuals.

Lisa Hatfield:

What is your advice for a patient living with small cell lung cancer in rural areas who might not have access to state-of-the-art cancer care?

Rafael Santana-Davila:

Yes. So first of all, although people living in rural areas do not have access to major cancer centers…or let me rephrase that. They do not live in major cancer centers. Thanks to technology, they do have access. How? With telehealth. A lot of things that I do, which is medications, they don’t really have to see me for treatment. I can give advice on the treatment that can be instituted anywhere. So patients that live, again, in Eastern Washington, which is a rural part of the state, can see me through telehealth, and I can help them and their physicians who are not sub-specialists to direct their care.

And again, it’s important to know that it’s not that we’re smarter than the general community oncologists. We’re not. We just have more experience in this disease. We’ve seen a lot of things that happen, so we are able to recognize things when they happen and just have access to more clinical trials. So the activation tip for that question is make sure that…we said that before, that you seek a second opinion.

And that may not involve travel for many hours. That may be as simple as a telehealth appointment with a major cancer center of such state to know what is available. And also know that many clinical trials can now actually pay for lodging and pay for transportation to those centers. So although it’s going to be trickier for them to receive them, living in a rural area does not mean that you’re not eligible for that.

Lisa Hatfield:

Have you encountered any misconceptions or stigmas related to small cell lung cancer within underrepresented communities? And how do you address or mitigate these issues with your patients?

Rafael Santana-Davila: 

There is a lot of stigma in this disease. We know that in the great majority of patients with small cell lung cancer and lung cancer in general, there is a smoking component to it. So patients feel that this is something that they brought upon themselves sometimes and there’s a lot of stigma associated with it. And that is not true. Yes, this is a smoking-related condition, but smoking is an addiction. Patients do not smoke because they want to. They smoke because they get addicted to it.

Everybody that I’ve met who’s a smoker at some point has wanted to quit and they cannot quit, not because they don’t have the willpower, or not because they’re weak, it’s because they can’t. This is an addiction. And it’s actually cancer, both small cell and lung cancer happens in the minority of smokers. So it’s important to know that this is…yes, quitting smoking could have prevented this cancer, but quitting smoking is nothing that is easy. And even if they quit smoking, this could have come.

So it’s important to patients to know that this is not…they should not blame themselves. This is both for underrepresented minorities and the patients at large. Don’t blame yourself for this. This is nothing that you could have prevented. And this is not your fault that this happened to you.” The activation tip for this is there’s a lot of what patients need to talk about, a lot of things, and these are hard conversations that you need to have. They’re not comfortable many times, but you need to open up. You need to have these conversations with your family, and you need to really say what’s in your heart. So that would be my activation tip. 

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How Small Cell Lung Cancer Patients Can Best Self-Advocate

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How Small Cell Lung Cancer Patients Can Best Self-Advocate from Patient Empowerment Network on Vimeo.

How can small cell lung cancer (SCLC) patients advocate for optimal care? Dr. Rafael Santana-Davila with the University of Washington School of Medicine shares advice for questions to ask your doctor and about the benefits of telehealth and clinical trials.

[ACT]IVATION TIP

“…make sure that you ask several questions to your doctor is, “Can I have access to a second opinion to a sub-specialist in lung cancer? Or have you thought about my case? And is there any availability of clinical trials here or in other centers?”

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

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Advice for Small Cell Lung Cancer Patients Considering Clinical Trials

Transcript:

Lisa Hatfield:

So one of your areas of research is studying how small cell lung cancer patients in the general population, those who don’t have access to cancer centers, are treated in order to figure out how to best bring the most recent advances in care to these individuals. Can you share with us some recent findings or learnings from your research, and how can these patients maybe best advocate for themselves?

Rafael Santana-Davila:

Medicine is a team sport. And this is also especially true for cancer. And the difference that…when I see patients, I tell them that it’s not that I’m smarter than the community oncologist. I’m not. The difference that I have with community oncologists is that I’m a sub-specialist. So who I treat are patients who have cancers of the chest or the head and neck. That means that I dedicated my career to treating those patients. And if you ask me questions about lung cancer or head and neck cancers, we can talk forever. But I’m no longer a specialist in treating all other cancers. Community oncologists don’t have that luxury.

So I do think that it’s very important for patients to get a second opinion, to have access to a major cancer center so that they can be sure that the plan of treatment is something that is the top of the line, the best treatment that is available. And they also ask about clinical trials, because there’s clinical trials out there that are moving the needle forward, and participation of those clinical trials is something that is very important. So having an opinion by somebody that, again, treats only lung cancers is very important. Now, the only thing good that COVID had was that it led to telehealth.

So nowadays I can see patients…I work in Seattle, so I can see patients that live across the state and in the farmland where they don’t have access to an academic medical center also to a sub-specialty, but I can see them through telehealth and I can…in the majority of cases, I say, “Yes, your doctor at home has a good plan. Let’s treat you with that.” Or I give some tips or tricks to the community oncologists, or I offer the latest and greatest in clinical trials and patients can make that decision at that point.

So the activation tip for this is make sure that you ask several questions to your doctor is, “Can I have access to a second opinion to a sub-specialist in lung cancer? Or have you thought about my case? And is there any availability of clinical trials here or in other centers?” That’s what I would tell patients. And patients need to be the best advocates for themselves and they are. They know that they’re going through a very rough time, but they just need to say, “What else can I do for this?”

Lisa Hatfield:

Great, thank you so much for that. And as a cancer patient myself and a patient advocate, I fiercely advocate for patients to always, if you get a cancer diagnosis, if you can, consult with somebody who is a specialist or a sub-specialist in the type of cancer you have. It can make a difference for you.

Rafael Santana-Davila:

I agree. And, again, with the era of telehealth, that has opened the ability for this.

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Can Mobile Health Apps Lower the Burden of MPN Symptoms?

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Can Mobile Health Apps Lower the Burden of MPN Symptoms? from Patient Empowerment Network on Vimeo.

How can the burden of myeloproliferative neoplasm (MPN) symptoms be lessened through the use of mobile health apps? Blood cancer patient Lisa Hatfield shares common MPN symptoms that patients experience and explains wellness strategies and mobile app study results that decreased the symptom burden for patients.

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How Can MPN Patients Continue to Use Telemedicine and Overcome Barriers

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 How MPN Patients Can Best Prepare for a Telemedicine Visit

How MPN Patients Can Best Prepare for a Telemedicine Visit

Transcript:

Lisa Hatfield:  

As an MPN patient, you might experience symptoms like fatigue, night sweats, difficulty sleeping, abdominal discomfort, bone pain and others. However, early data using integrative approaches for the treatment of MPNs are promising, including aerobic activity, yoga, meditation, and strength training, to reduce the symptom burden and improve inflammation. With the evolution of smartphone technology, mobile apps have been increasingly popular to document wellness strategies. With this in mind, the University of Arizona Andrew Weil Center for Integrative Medicine developed and successfully piloted a global wellness mobile app, My Wellness Coach (MWC), to guide MPN patients on self-management strategies for their symptom burden. 

The app had patients set at least two wellness goals with clear action steps within these seven areas: nutrition, movement, sleep, resilience, environment, relationships and spirituality to work on over the course of 12 weeks. Within the app, there were links to curated resources and tips. Participants were sent 24- to 72-hour interval reminders before and after each action step and a goal deadline to encourage action throughout the intervention. At the end of the study, improvements were observed in inactivity, impaired concentration, dizziness, numbness, sexual dysfunction, night sweats, bone pain, and quality of life. 

If you’d like to implement something similar to what the participants did, try the following: 

  • Reflect on why you want to change your symptom burden so you feel motivated  
  • Determine which of these categories: nutrition, movement, sleep, resilience, environment, relationships, and spirituality would you like to set goals in 
  • Create two goals from those categories and make them SMART- specific, measurable, attainable, relevant, and time-bound. 
  • Utilize resources available to you through support groups or online tools 
  • Set reminders on your phone or calendar for each step you need to take to complete your SMART goals

Mobile-based apps are another example of how MPN patients can use telemedicine in their day-to-day life and improve care.

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How Can MPN Patients Continue to Use Telemedicine and Overcome Barriers?

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How Can MPN Patients Continue to Use Telemedicine and Overcome Barriers? from Patient Empowerment Network on Vimeo.

What ways can myeloproliferative neoplasm (MPN) patients continue to use telemedicine to overcome barriers? Blood cancer patient Lisa Hatfield shares advice for coordinating with your MPN care provider to continue telemedicine visits and how to advocate for continued coverage of virtual visits.

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Related Resources:

What MPN Patient Type Is a Good Candidate for Telemedicine Visits

 The Importance of Telegenetics Consultations for MPN Patients

 Can Mobile Health Apps Lower the Burden of MPN Symptoms

Transcript:

Lisa Hatfield:

If you got used to and liked doing telemedicine appointments rather than going to in-person appointments during the COVID-19 pandemic, don’t worry – it seems like telemedicine is here to stay! In order to take forward what we have learned from telemedicine during the pandemic, here are a few things to keep in mind. 

  • Make sure you tell your doctor that you enjoyed telemedicine visits and would like to keep using them as much as possible. You and your doctor can work together to create a schedule of mixing in-person and virtual visits. For example, you might be able to do “remote monitoring,” where you feel your spleen daily to see if it’s more enlarged or keep an eye out if you feel more full or fatigued lately or if you’ve been losing weight unexpectedly and then you report back to your physician on any changes you are experiencing or if your symptoms are worsening. 
  • You can also complete symptom assessment forms online or discuss the forms through a virtual visit rather than completing and discussing forms in-person.
  • In-person appointments will still be necessary if you need blood drawn or if your doctor prefers to feel your spleen first-hand. Be sure to communicate with your healthcare team at what intervals of your MPN treatment you would need to come in office for. 
  • In a recent podcast interview with ASCO Daily News,  Dr. Ana Maria Lopez, Vice Chair of Medical Oncology of the New Jersey division of the Sidney Kimmel Cancer Center, at Jefferson Health suggests that in order to keep telemedicine in the forefront of future care, to advocate for continued reimbursement for telemedicine. Always check with your healthcare provider on the cost or reimbursement for telemedicine appointments. 

With these things in mind, we can continue to use telemedicine as it evolves further in MPN care.

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The Importance of Telegenetics Consultations for MPN Patients

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The Importance of Telegenetics Consultations for MPN Patients from Patient Empowerment Network on Vimeo.

What role should telegenetics consultations take for myeloproliferative neoplasm (MPN) patients? Blood cancer patient Lisa Hatfield explains the rise of telegenetic consultations, how patients benefit from them, and how to learn more about access.

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How MPN Patients Can Best Prepare for a Telemedicine Visit

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 Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19

Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19

Transcript:

Lisa Hatfield:

According to the National Library of Medicine, less than 300 genetic tests were available in the 1990s; at the end of 2012, almost 3,000 genetic tests were available and now in 2023, +76,000 tests are available to the general public. Some of those genetic tests can be used on MPN patients through telegenetic consultations. These are appointments done via telemedicine with genetic counselors to determine what gene mutations you might have. They can be done by telephone or video conferencing. 

As you would imagine, this type of telemedicine became more common during the COVID-19 pandemic and should still remain in a patient’s tool box post-pandemic. While telegenetics consultations play an important role in a patient’s personalized care by determining if there are genetic mutations like JAK2 or MPL, the added benefit is that these online consultations protect the patient from exposure to viruses and potential infections as well as saves them valuable time, energy, and travel costs.

Telegenetic consultations are also beneficial for remote patients, including those in rural areas with limited or no access to genetic services. Be sure to talk to your doctor to see if you can benefit from telegenetic consults. This can be especially important or helpful to do at the beginning of your MPN journey or before switching treatments.

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Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19

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Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19 from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) clinical trial enrollment be aided by telemedicine? MPN expert Dr. Jamile Shammo shares ideas for how clinical trial protocols can be adjusted with telemedicine and other remote options for improved patient care. 

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Pros and Cons of Telemedicine From an MPN Patient Perspective

Pros and Cons of Telemedicine From an MPN Patient Perspective

 What MPN Patient Type Is a Good Candidate for Telemedicine Visits

 How Can MPN Patients Continue to Use Telemedicine and Overcome Barriers

Transcript:

Lisa Hatfield:  

With the nature of telemedicine being virtual and the fact that clinical trials, thus far, have only been conducted in-person, it may seem strange or impossible to try to move clinical trial participation to the virtual space. However, clinical trials are so important to research and getting the best care to patients, that researchers are beginning to figure out how to make this a reality. MPN expert Dr. Jamille Shammo reiterates the importance of clinical trials by saying:

Dr. Jamile Shammo:

There’s no doubt that COVID has certainly impacted our ability to enroll patients on clinical trials. There have been a lot of governing bodies that have created various rules and regulations around that to facilitate enrolling patients on clinical trials, and I think right now we are seeing that this has become feasible, such that we are able to enroll patients yet again on the clinical trial. So, now I think that we have the vaccine that is available, it has become a little bit more feasible and possible to do so. So, this should not stop us. I think we should continue to seek better treatments for MPN patients actually the only way to do so is by, you know, only patients on trials.

Lisa Hatfield:

So what ideas do researchers have, to start making clinical trials available via telemedicine? 

They believe in simpler clinical research protocols that not only allow telemedicine for nontreatment visits and consents, but also require fewer laboratory tests and imaging studies that may burden patients with extra visits and reduce the regulatory burden for research staff as well. It is important to specify that patient visits and/or consents can be conducted remotely in the trial protocol. 

A patient-centric approach toward clinical research needs to be explored in virtual trial assessments. A 2022 ESMO journal article by Sessa et al described new approaches to oncology clinical trials, including the use of electronic patient consent forms and medical updates, local laboratories for blood tests, home nursing visits for blood draws or infusions, and electronic patient-reported outcomes. It also stressed the importance of working together with local doctors, direct-to-patient drug delivery, and remote monitoring to increase patient convenience. 

While there is still more information to consider, this gives us hope on how trial access can be improved and approached in the future for better MPN care. 

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How MPN Providers Want You to Prepare for Telemedicine Visits

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How MPN Providers Want You to Prepare for Telemedicine Visits from Patient Empowerment Network on Vimeo.

What are some ways myeloproliferative neoplasm (MPN) providers want patients to prepare for telemedicine visits? MPN expert Dr. Jamile Shammo shares advice to avoid common obstacles to optimal telemedicine visits.

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Pros and Cons of Telemedicine From an MPN Patient Perspective

Pros and Cons of Telemedicine From an MPN Patient Perspective

 Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19

Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19

 Can Mobile Health Apps Lower the Burden of MPN Symptoms

Transcript:

Lisa Hatfield:

Do you ever wonder what your doctor wishes you would do before having a telemedicine appointment with them? After all, they are meeting with patients almost daily for telehealth visits so they know what makes a successful appointment. Listen as Dr. Jamile Shammo shares her advice on how to prep to make the most of your time together: 

Dr. Jamile Shammo:

When preparing for a televisit, I think it’s so important to know whether or not you would have a connectivity issue. A lot of times, I’m trying to connect with the patient and then we realize that their phone isn’t equipped to handle the televisit and that is kind of disappointing to find that out a minute before you try to connect then that visit becomes a telephone encounter, which is again, less satisfying for some patients. I mean it does the job, but again, it doesn’t provide me with the exam…part of the exam that I’d like to do, at least in that way. 

Lisa Hatfield:

If you are unsure on what platform to use for your appointment or if you have to download an application, it is worth asking your care team ahead of time as Dr. Shammo says. Most institutions have a person that can assist you with setup prior to the appointment, especially if it is your first virtual appointment. 

Dr. Jamile Shammo:

It would be helpful to make sure that you have a blood draw or if your physician would like to have a blood draw in my case, I always like to have a CBC beforehand or perhaps a chemistry or maybe ion studies or what have you, to have that so that there will be something to discuss. Make sure that your physician has had those results before you have the visit. Sometimes it is also disappointing that the patient thinks I’ve received those results when I actually haven’t and I have no control over that, so that would be the other piece.

Lisa Hatfield:

Take control of your visit by asking staff ahead of time if you can have a blood draw or other testing and that those results are shared with the doctor prior to your visit, that way you can discuss them live. You can typically request this by calling or using a patient communication portal. Just like with in-person visits, have your questions ready or items you would like to talk about in order to utilize your time effectively. 

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What MPN Patient Type Is a Good Candidate for Telemedicine Visits?

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What MPN Patient Type Is a Good Candidate for Telemedicine Visits? from Patient Empowerment Network on Vimeo.

What myeloproliferative neoplasm (MPN) patient type makes a good candidate for telemedicine visits? MPN expert Dr. Jamile Shammo shares her perspective of patient situations that work well for telemedicine and those who can benefit from in-person visits as part of ongoing care.

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Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19

Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19

 How MPN Providers Want You to Prepare for Telemedicine Visits

Transcript:

Lisa Hatfield:

As more institutions start to have in-person visits instead of only telemedicine visits, you might be wondering if you should keep doing telemedicine visits or move back to seeing your physician in-person. Some people might want to continue doing telemedicine for a number of reasons, including convenience/no travel involved and  limiting your exposure to colds/infection from other patients. There are certain MPN patients that could be seen with telemedicine visits or fewer in-person visits. Listen as Dr. Jamile Shammo explains.

Dr. Jamile Shammo:

So, when I think of the patient that might benefit most from seeing the physician via televisit, for example, it would be someone who perhaps has a stable disease, someone who I may want to monitor perhaps every three to six months, someone who may have stable counts, and we’re just talking to about their symptoms and monitoring those types of things every so often. And perhaps I look at the labs, and you can discuss their symptoms and whether or not they have splenomegaly and issues like that. 

Lisa Hatfield:

As Dr. Shammo notes, if your MPN is considered stable and you typically only see your doctor every three to six months, it might be worth continuing telemedicine visits instead of going back to in-person visits. 

Dr. Jamile Shammo:

Someone who may already be on a stable dose of medication and we don’t have to do any dose adjustments and even if we have to do those adjustments, perhaps we could do labs a little more frequently, so that would be all right too.

Lisa Hatfield:

If you are on a stable dose of your medication and don’t need any modifications or just have minor adjustments, you could consider staying with telemedicine visits. 

But what patients should consider doing more in-person visits, now that COVID-19 precautions are lighter? Dr. Shammo goes on to explain THAT patient could be…

Dr. Jamile Shammo:

Someone in whom I would like to initiate in treatment, someone in whom the disease may be progressing a little too quickly, someone who I may want to do an exam and assess their spleen, I suppose you could send them to an ultrasound facility and obtain an MRI or a CT, or an ultrasound of the imaging study that is. But there’s nothing like an actual exam of the patient. You are thinking about the disease progression, so those sorts of patients in which the disease is actually changing its pace, you may want to take a look at it, the full smear look and examine the skin for certain TKI and signs and symptoms of low platelets and that sort of thing. Look in the mouth for ulcers and things of that nature. 

Lisa Hatfield:

As always, please discuss with your health care team before deciding to switch to only telemedicine visits or going back to in-person visits. They know your history and can help decide what is best for you and your care at this particular time. 

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Pros and Cons of Telemedicine From an MPN Patient Perspective

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Pros and Cons of Telemedicine From an MPN Patient Perspective from Patient Empowerment Network on Vimeo.

What are the positives and negatives of telemedicine for myeloproliferative neoplasm (MPN) patients? MPN patient Debbie shares her perspective about benefits and drawbacks of telemedicine visits, and blood cancer patient Lisa Hatfield shares advice for preparing for telehealth visits and for staying connected with your healthcare team.

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Related Resources:

How MPN Patients Can Best Prepare for a Telemedicine Visit

How MPN Patients Can Best Prepare for a Telemedicine Visit

 What MPN Patient Type Is a Good Candidate for Telemedicine Visits

 How Can MPN Patients Continue to Use Telemedicine and Overcome Barriers

Transcript:

Debbie:

I think there is definitely a place for telemedicine in our care. It has enabled us to, or enable me to keep in touch with my hematologist and to understand where my blood counts currently are. What I would also say is, it’s…that there are positives and negatives. I think that the positive of it is the fact that I’ve got a regular update on what my blood counts actually are. I think the negatives of it can be, is that it is quite easy just to move the conversation quite quickly forward. It’s easier for me to just say, everything’s all okay. Thank you for updating me over the telephone, then it is perhaps if I was actually sat in front of somebody. I think that the challenges it presents is that personal touch, is that feeling of being able to have a one-to-one relationship with your consultant. I don’t think you have that over the telephone.

Lisa Hatfield:

You just heard from Debbie, who is living with an myeloproliferative neoplasm, share her positives and negatives of telemedicine but what can patients do so the positives outweigh the negatives? One suggestion is to treat a telehealth appointment the same way you would treat an in-person appointment, meaning you would write down all your questions ahead of time, make notes of the points you want to cover and keep information on your blood counts and medications handy. By looking at a telemedicine appointment with the same importance and preparedness as an in-person session, you will ensure you are making the most of the time. Another way to see the positives in telemedicine is to remember that telemedicine can be used beyond virtual visits. You can utilize telemedicine/telehealth technology to message and stay in contact with your care team and to share your records electronically with all the providers you see. Telemedicine can help us stay connected and informed of our health in this technology-heavy world!

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How MPN Patients Can Best Prepare for a Telemedicine Visit

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How MPN Patients Can Best Prepare for a Telemedicine Visit from Patient Empowerment Network on Vimeo.

What are some ways that myeloproliferative neoplasm (MPN) patients can best prepare for telemedicine visits? Lisa Hatfield shares information about telemedicine, and MPN patient Summer Golden and care partner Jeff Bushnell share their tips for telemedicine best practices.

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Related Resources:

Pros and Cons of Telemedicine From an MPN Patient Perspective

Pros and Cons of Telemedicine From an MPN Patient Perspective

 How MPN Providers Want You to Prepare for Telemedicine Visits

 The Importance of Telegenetics Consultations for MPN Patients

Transcript:

Lisa Hatfield:

After the extensive use of it during the COVID-19 pandemic, it seems like telemedicine will be here to stay. It’s another technological advantage that people living with MPNs can put in their toolbox. Since MPNs are classified as a rare disease, and there might be a lack of doctors knowledgeable on how to treat it near you, telemedicine has made it easier to connect with MPN specialists via online consults. Telemedicine can include video or audio only, and you should receive instructions how to set up and what to expect prior to your appointment. 

Listen as MPN patient, Jeff Bushnell and his care partner, Summer Golden, share how they prepare for telemedicine visits 

Summer Golden and Jeff Bushnell:

A top tip I think, it’s sort of logical, but is to have the questions and issues written out because it’s a limited matter of time and to specifically jot down the answers. Another tip would be to ensure that you have the appropriate stuff on whatever device you’re using to talk to the doctor on. We’ve used about three or four different apps, as it were, on our phone to communicate with different doctors, and you need to make sure that that works ahead of time.

Usually, the way they do it is they set up the appointment, they contact you ahead of time, and make sure that it’s going to work before they put the doctor online. But that’s very important that you have the technical ability to ensure that your equipment can support telemedicine. They’re making it pretty easy, but you still have to do it.

Lisa Hatfield:

Follow these two tips from Summer and Jeff as part of what YOU do to be ready for your next telemedicine visit. If you are having trouble with the technology needed for telemedicine, be sure to reach out to your doctor, nurse, or care partner for assistance. 

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